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Crohn's Disease Forum

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They probably brought your immune system wayyy down with those 4 shots. I have asthma and colds end up bronchial and take FOREVER to get rid of them. I wondered how it worked if you go an infection, can you actually go OFF the Humira so your immune system is restored during those times? I don't know much about it. Just now approaching the matter.

you can't go off it and back on multiple times. it allows your body to build up immunities to the drug. :(
 
Hello,

I recently joined as my diagnosis has moved pretty swiftly. I presented with a perirectal abscess, which was drained in October. I then had fistula surgery on 11/26, at which time the CRS noted two very high anterior fistulas as well as some polyps, which were biopsied. I had a Prometheus blood panel on 12/3, which came back on 12/10 as consistent with Crohn's. I saw the CRS last night, who told me I had Crohn's. He referred me to the, who I saw this morning.

The GI indicated that, while not an absolute, definite diagnosis, clinically, I present with Crohn's considering the findings on surgery and the bloodwork. We scheduled a colonoscopy for 1/9 and they did some more bloodwork today.

GI doctor wants me to go on Humira, hence my post here. He indicated that 70% of the time, the medication is effective in closing fistula. Has anyone had experience with this? I'm pretty fearful of needles so the thought of injecting myself is not high on my list of fun times, but avoiding a second and third surgery would be well worth it. Thanks in advance for any responses.

Remicade helped my fistulas for many years. I then had to switch to Humira but that hasnt helped them. I would definitely recommend trying it though - it is supposed to be the best for most people.

The shots hurt but they are easy to use and you dont have to do a needle yourself, it comes in a pen injector. Its not as bad as i thought it was going to be.
 
Over the weekend I had a bad toothache begin. On Sunday I noticed that my gum above the tooth was swollen, with a very large bump. I called and set up an appointment with the Dentist for yesterday morning.

My Dentist told me that is was an abscess. He drained it and put me on antibiotics. He said this was an infection caused by either bacteria in my mouth or a piece of food caught in the gum. His exact words were "For some reason your immune system is really low. This is something that normally a person has no problem with." I told him about being on Humira for my Crohn's Disease. He thinks the Humira is the reason I got the infection.

Question. My shot was due on Sunday so I decided to wait until I saw the dentist. He cleaned out the infection but I am now on antibiotics. Do you think I should take my Humira dose now or wait and let the antibiotics do their job?

I would take the humira, but that is just me.
 
I am officially in the Humira club now. Had my first dose(s) just a little while ago and feel pretty normal.

Was on Remicade intermittently for the past 1 year but changed to Humira per my new Doctor's recommendation, primarily for practical reasons (time off from work, commute, out-patient procedures at hospital etc. involved with Remicade). While Remicade did seem to help in keeping things in check, did not do as well as I was hoping. Hopefully, I will do better with Humira.
 
Hi Doug, is there a doc or a nurse you could ask? I'm not sure of the answer. I do know that with throat infections etc that I still take my shot. But yours sounds nastier than a standard throat or chest infection.


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Hi Kirsty. I was able to talk with my GI. He said that since I am on antibiotics I should continue Humira.If after I get of the antibiotics the infection returns then we will discuss what to do.

I took my shot last night.
 
I got to do my shot tonight Doug. I've got throat, sinus, front and back glands infections. I'm on antibiotics. Looks like I will be having a very quiet weekend. Ain't life grand. First time I've got a lump of infection in my neck - that's yucky. Thinking of u matey, say hi to Sandy


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Hello,
I'm pretty fearful of needles so the thought of injecting myself is not high on my list of fun times, but avoiding a second and third surgery would be well worth it. Thanks in advance for any responses.

Hi - I have no info but I can tell you I am fearful of needles and used to have to give myself shots for migraine. They gave me a little rocket type thing to put the needle in and it was a piece of cake. Even though I was always a little freaked out before pressing that little "button." haha It was only a mind freak because there wasn't much pain. Good luck to you!! Wishing you better health for 2014.
 
you can't go off it and back on multiple times. it allows your body to build up immunities to the drug. :(

I'm struggling with Humira/no Humira right now. I have the Crohns DX but no symptoms post surgery and take Pentasa. Now asthma has kicked up to something chronically bronchial and the biggy....arthritis.....which can distort your body. I am pretty sure I have decided to hold off on the hard hitting meds until I really need them because I know your body can develop a resistance 3-4 years into it. I don't want to start that roller coaster ride until I really need it. Haven't yet discussed with docs but the steroids kicked in osteopenia. I'm sick of medicines THAT HARM while fixing. Went to an orthopedic doc yesterday who did tests to confirm osteopenia...everything I asked him was met with "out of my realm of expertise" to the point of ridiculous including a recommendation for Vitamin D and calcium. He kept referring me back to my PCM because it was "out of his realm". The reason I went to this man is due to his specialty in orthopedics. A bone man. I was taking "too many medicines" and it was "out of his realm" and I should go talk to my PCM. ? I take pentasa and vitamins. Also circumin which must have freaked him out - it's a spice. I do not want to ramp up these doctor appts because I end up in the parking lot crying because they are either rude, condescending, stupid, insensitive or give me crap for news. haha:ybatty:
 
I'll add: medicines have put me in this predicament I believe. Antibiotics for longterm due to rosacea combined with prilosec for 7 years - fioricet for chronic migraines (constipating) which all did a number on my bowel and I believe pushed the on button for Crohns. I'm 63.....I'll hold off on Humira for a while I think until things start to really ramp up.
 
I can tell you my primary care doc is clueless!!! I don't even see him unless I need an antibiotic or go to hospital for asthma. Other than that he is useless!

Thank God for my specialty doctors. My GI is fantastic. I have a great allergist/ immunologist. In fact I just saw him yesterday for my yearly visit. With all the new meds like Humira and Pentasa he is doing a full blood work up. Checking for B12 deficiency, anemia, thyroid, CBC,. Also I have subclass imminodificency so he wants to check all the IGG subclasses again to make sure Humira is not making that worse. I love this man!!!
 
I'll add: medicines have put me in this predicament I believe. Antibiotics for longterm due to rosacea combined with prilosec for 7 years - fioricet for chronic migraines (constipating) which all did a number on my bowel and I believe pushed the on button for Crohns. I'm 63.....I'll hold off on Humira for a while I think until things start to really ramp up.

Dont wait until it is too bad. Think of it within this analogy: You dont want to wait until you are freezing to put on a coat. It is harder to get warm than to stay warm. Same with flares. It is easier to control/fix if you catch it early. If you wait too long, it may be too late or take far longer to get under control.

I was going to suggest Medical Marijuana (if that is an option at all in your state/country) but I'm not sure how migraines would react to it. I can't smoke when I have a headache, it seems to make it worse. BUT i dont get migraines and dont know if they may be affected differently.
 
Well, I'm officially in the "club" as I just finished injecting the first 4 loading doses. It wasn't too bad - some burning - but tolerable. I can't wait to see if it will work for me:)

Thinking positive thoughts and looking forward to feeling better in 2014.

Back to work now.

So glad for all the posts that helped with my decision to try Humira - so appreciated.

Melissa
 
I can tell you my primary care doc is clueless!!! I don't even see him unless I need an antibiotic or go to hospital for asthma. Other than that he is useless!

Thank God for my specialty doctors. My GI is fantastic. I have a great allergist/ immunologist. In fact I just saw him yesterday for my yearly visit. With all the new meds like Humira and Pentasa he is doing a full blood work up. Checking for B12 deficiency, anemia, thyroid, CBC,. Also I have subclass imminodificency so he wants to check all the IGG subclasses again to make sure Humira is not making that worse. I love this man!!!

Wow. Thats 100X what my doctors do. What is subclass immunodeficiency?
 
Dont wait until it is too bad. Think of it within this analogy: You dont want to wait until you are freezing to put on a coat. It is harder to get warm than to stay warm. Same with flares. It is easier to control/fix if you catch it early. If you wait too long, it may be too late or take far longer to get under control.

I was going to suggest Medical Marijuana (if that is an option at all in your state/country) but I'm not sure how migraines would react to it. I can't smoke when I have a headache, it seems to make it worse. BUT i dont get migraines and dont know if they may be affected differently.

I have no symptoms for Crohns right now --- I think it's busy working on my joints!! May be my imagination but since I don't have Crohns issues, I've developed joint issues....was having skin inflammation but since the joint issues started, it's calmed down. Could it be the immune army can only focus on one thing at a time? Anyone experience this? Also - how does the MJ help? I'm not sure what the laws are in Florida but would be interested in knowing in case I ever need it. Right now, no Crohns symptoms, joints in hands are chronically achy, asthma is now chronic, migraines have ceased and so have skin issues. I have osteopenia from steroid meds and an old knee injury and ankle injury that's flaring with...something. Osteo or Rheum -- being tested. Friday was an awesome day with no symptoms---- could it be weather related? The jet stream was doing something different on Friday/Sat. Today, hands aching and pretty stiff.
 
In fact why are you seeing a allergist/immunologist? I never heard of that. Maybe I need one too!

Here is a very informative link about IGG subclass immunodeficiency.
http://primaryimmune.org/about-prim...ecific-disease-types/igg-subclass-deficiency/

I didn't even know I had it until my allergist ran this screening. To test for it I was given the pneumonia vaccine then a couple of weeks later had blood drawn to see if I produced antibodies. What little I produced had no therapeutic level. Then he ran the subclass blood work again and I had the same results, deficient in one to two subclasses ( I can't remember which ones).

Anyway, since I wasn't getting very many infections we are just leaving things alone. BUT now that I'm taking Humira that may make my deficiencies worse. I have already had one pretty good chest infection with asthma.

Treatment is IV gamma globulin replacement. Not even going to entertain this unless my deficiencies are near zero!! I just had blood work drawn to check all this since I've been 6 weeks on Humira. I should know the results by Wednesday.

I see an allergist/ immunologist because I am allergic to 5 bees ( got stung and had anaphylactic response) and many pollen and animal allergies. Asthma to boot ( was hospitalized 3 times before I agreed to allergy shots). Did you know there is a strong link between asthma and Crohn's?

It all has to do with the immune system.
 
Here is a very informative link about IGG subclass immunodeficiency.
http://primaryimmune.org/about-prim...ecific-disease-types/igg-subclass-deficiency/

I didn't even know I had it until my allergist ran this screening. To test for it I was given the pneumonia vaccine then a couple of weeks later had blood drawn to see if I produced antibodies. What little I produced had no therapeutic level. Then he ran the subclass blood work again and I had the same results, deficient in one to two subclasses ( I can't remember which ones).

Anyway, since I wasn't getting very many infections we are just leaving things alone. BUT now that I'm taking Humira that may make my deficiencies worse. I have already had one pretty good chest infection with asthma.

Treatment is IV gamma globulin replacement. Not even going to entertain this unless my deficiencies are near zero!! I just had blood work drawn to check all this since I've been 6 weeks on Humira. I should know the results by Wednesday.

I see an allergist/ immunologist because I am allergic to 5 bees ( got stung and had anaphylactic response) and many pollen and animal allergies. Asthma to boot ( was hospitalized 3 times before I agreed to allergy shots). Did you know there is a strong link between asthma and Crohn's?

It all has to do with the immune system.

Hi! I was diagnosed with hypogammaglobulinemia (low IgA, low IgG, low IgE) this past summer and did subcutaneous infusions of immunoglobulin serum once a week for a month. I would recommend this over IVIG if you have a choice and do seek treatment. I would offer a caveat, however. When I did it, it made my Crohn's flare horrendously. I started Humira after my second infusion. Not saying that this would happen for everyone, just offering some friendly advice. My levels aren't low enough to justify me going back on subQ infusions at this time, thank goodness!
 
Hi! I was diagnosed with hypogammaglobulinemia (low IgA, low IgG, low IgE) this past summer and did subcutaneous infusions of immunoglobulin serum once a week for a month. I would recommend this over IVIG if you have a choice and do seek treatment. I would offer a caveat, however. When I did it, it made my Crohn's flare horrendously. I started Humira after my second infusion. Not saying that this would happen for everyone, just offering some friendly advice. My levels aren't low enough to justify me going back on subQ infusions at this time, thank goodness!

Good to know! Thanks for sharing your experience. Mine were not too terribly low. Hopefully the Humira keeps everything in balance once it starts working. I no way want to start gammaglobulin therapy and have it give me a flare!!!
 
Good to know! Thanks for sharing your experience. Mine were not too terribly low. Hopefully the Humira keeps everything in balance once it starts working. I no way want to start gammaglobulin therapy and have it give me a flare!!!

You're welcome! I don't know if everyone would react the same way or not. In my case, I was not on any Crohn's meds when I started the gammaglobulin, and my Crohn's is pretty severe, so it may well be that that is why I had such a bad experience with it. It boosted my immune system so it gave the Crohn's more to attack me with. If your Crohn's is in remission or under control, you may not have any issues whatsoever. I would just be aware of the possible interaction and discuss it with your GI as well as your immunologist. :)
 
I have read not to take immune boosting drugs while taking Humira as it is counter productive. Wouldn't taking gamma globulin also be counter productive as it would be boosting the immune system?
 
I have read not to take immune boosting drugs while taking Humira as it is counter productive. Wouldn't taking gamma globulin also be counter productive as it would be boosting the immune system?

Yes, that was my thought, but my GI wanted me to try it to see if it would help my symptoms at all or make a difference. It made a difference all right! ;)
 
Here is a very informative link about IGG subclass immunodeficiency.
http://primaryimmune.org/about-prim...ecific-disease-types/igg-subclass-deficiency/

I didn't even know I had it until my allergist ran this screening. To test for it I was given the pneumonia vaccine then a couple of weeks later had blood drawn to see if I produced antibodies. What little I produced had no therapeutic level. Then he ran the subclass blood work again and I had the same results, deficient in one to two subclasses ( I can't remember which ones).

Anyway, since I wasn't getting very many infections we are just leaving things alone. BUT now that I'm taking Humira that may make my deficiencies worse. I have already had one pretty good chest infection with asthma.

Treatment is IV gamma globulin replacement. Not even going to entertain this unless my deficiencies are near zero!! I just had blood work drawn to check all this since I've been 6 weeks on Humira. I should know the results by Wednesday.

I see an allergist/ immunologist because I am allergic to 5 bees ( got stung and had anaphylactic response) and many pollen and animal allergies. Asthma to boot ( was hospitalized 3 times before I agreed to allergy shots). Did you know there is a strong link between asthma and Crohn's?

It all has to do with the immune system.

How very interesting as I also have asthma and it's been mild until the last several months. I got a cold and of course, it went into my bronchia. Constant coughing -- I took antibiotics, cold went away, cough stayed. Just caught another cold from a sick niece, more antibiotics, cough seems better but still there. I'll read more about it and really appreciate the info.
 
Over the weekend I had a bad toothache begin. On Sunday I noticed that my gum above the tooth was swollen, with a very large bump. I called and set up an appointment with the Dentist for yesterday morning.

My Dentist told me that is was an abscess. He drained it and put me on antibiotics. He said this was an infection caused by either bacteria in my mouth or a piece of food caught in the gum. His exact words were "For some reason your immune system is really low. This is something that normally a person has no problem with." I told him about being on Humira for my Crohn's Disease. He thinks the Humira is the reason I got the infection.

Question. My shot was due on Sunday so I decided to wait until I saw the dentist. He cleaned out the infection but I am now on antibiotics. Do you think I should take my Humira dose now or wait and let the antibiotics do their job?

I would ask you Dr...although I always wait Im bad like that. I just dont want anymore problems. Hope you get better soon Doug :)
 
Seeking a little advice: Was just diagnosed last week with fistulizing Crohn's. GI doc wants to put me on Humira and did blood work on Wednesday last week to make sure I don't have TB, HEP B, etc. Is it too early to call back and check results? Should I just wait for them to call? I want to get started as I'm pretty miserable.
 
Seeking a little advice: Was just diagnosed last week with fistulizing Crohn's. GI doc wants to put me on Humira and did blood work on Wednesday last week to make sure I don't have TB, HEP B, etc. Is it too early to call back and check results? Should I just wait for them to call? I want to get started as I'm pretty miserable.

Call them, it should be back in a week. Plenty of time.
 
I have had Crohn's Disease for the last 10 years, I was diagnosed when I was 13 years old. I took medication for 6 months when I found out I had Crohn's, soon after it healed up and the Doctor (who I no longer see) suggested I be taken off medicine. God blessed me for 8 years! It wasn't until I was 21 years old that I had to go back on medication (NEVER had any other problems for that whole remission period). My Crohn's came back because of a neighbor in my apartment building, all because of cigarette smoke. The past two years have been good, I have had enough of a life to really have some fun. Unfortunately, like most people, the symptoms eventually came back. So here I am!

My main reason for contacting this group is for advice. I don't really no anyone else with Crohn's Disease. I have recently tried Pentasa, which has just really stopped working for me. I just stopped taking 6MP, because of the horrible feeling it gives me (nausea, odd stomach pains, headaches, dizziness, and fatigue). It's seeming like my three options left are Methotrexate, Humira (or other biologics), and Low-Dose Naltrexone. Who here has had similar problems and has had success with Humira? My main fear is that being on 23 that Humira won't work for very long for me and then I'll be young and stuck with nothing left. Any and all advice would be greatly appreciated!!!!

Thank you! Joey
 
Joey,

I had a different issue, I was diagnosed on 2003 and after drug failure after failure and in 2007 having a severe reaction to Imuran (Severe back pain that left me paralyzed) the idiots said it was neurological. That was until a a bunch of top tiered neuro surgeons looked at the MRI of my spine and brain. They were confused as at the time "They never heard of Imuran doing that." I lost faith in drugs being able to control my Crohns flares.

I was advised to go to Humira back then in 2007, It was a idiotic immature decision on my part. I left the disease untreated for 5 years and got used to the pain, I was working with on/off flares I didn't know how sick I was until they did a ct scan in 2012 and advised me for surgery. Thats why my choice not to go on the powerful biologic back then was a bad move. Thanks to a world renowned Crohns expert in 2012 telling me no to surgery and put it to me bluntly. "Do you want to die? because you were close to that 2 days ago. you need the Methotrexate/Humira combo ASAP."

I'm glad I took his advice because he saved my life. I know what your thinking and the reservations your going through. I've been on Humira and MTX for over a year. It has kept the inflammation/flares at bay. That is until this past November when that said Crohns expert did a colonoscopy on me that ( iw as later told was difficult). I had to have it without sedation, But 4 hours later I started having pain that landed me in the hospital with the top IBD team perplexed. "They've never seen this before." 24 hours after the scope a CT scan showed inflammation with my CRP high. But they later said it was not a Crohns flare but something called "Ischemia" from the procedure. My pooint to you is yes I had to have a right hemicolectomy in May. But that was a result in my immature choice to go untreated and live with the flares for so many years.

Please consider your choices and do read the possible drug reactions. They are rare reactions but everyone reacts differently. Thats why I hate this Non linear individualized disease. If you decide to go on MTX/Humira consider taking folic acid supplements to keep your body up to par with Folic acid. Methotrexate depletes it. As far as Humira is concerned, I think its a safe drug even with the FDA mandated warnings. When you do start it, you will have fatigue that will eventually fade, soarness in joints (in some cases). But these things go away with time. Also do not go on Humira if you cannot tough it out for at least 12 weeks to properly gauge the drugs effectiveness. That is unless of course you have a severe reaction and your Doctor says no more.

So consider your choices wisely, I only wish I can be in your shoes at your age. So I can reverse my mistake and start at the top down approach to the treatment rather than going up. Sorry to ramble but I hope my advice helps.
 
Scaryman,

I really appreciate your reply.. Luckily for me my doctor's as of now think that Humira is an overkill for my condition. The only problem is that the Chemo like drugs give me such bad reactions as I mentioned. I think I may give Humira a try after your encouragement as they too feel that it may be my last resort for now. It's just unfortunate that someone like me, who has had what I believe to be mild flares and typically am not incapacitated because of my Crohn's, has already reached the last resort medicine. My prescription will actually just consist of the Humira though, not the Methotroxate too. He gave me more of an OR situation, basically leaving it up to me to decide which medicine I should take. I plan on going to Duke University in North Carolina very soon to get a second opinion also, but until then I need to start something.

Here's to just praying that new medicine will soon be FDA approved! Us Crohn's people need some sort of relief. I'm a little tired of whining to my wife about my stomach hurting, LOL.

Joey
 
Joey I am newly diagnosed and my GI practices from the "top down" theory. After 4 months on Prednisone with bad withdrawals I started on Humira. We are not waiting for surgery to be our last option prior to Humira. I guess it all depends on what your doctors management style is. Just know that this is very common to jump on it early and hard.
 
Hey I just joined this in hopes that I can get some reassurance, I'm possibly starting humira in a week or two and I'm terrified of taking drugs,
I've been meds free for almost ten years now and have had one re section in my life time, for the most part I am extremely lucky for how small my side effects have been after my surgery! I get minor flare up and minimal pain but I've always had diarrhea and slight stomach discomfort with gas and pain.. Also from time to time my skin on my face in the corners of my mouth and on my eye lids will flare up and crack.. Just in these last few months though I've been having a lot of issues with all my joints, it seems just as one joint starts to get better another will swell up and cause arthritis like pain.. So I've been in the dr office and getting blood work every week and twice a week until my specialist contacted me to pretty say that it's enough and now it's time for me to take further steps... Aka Humira
I lean more towards natural remedies and believe that a lot of may 'crohns' symptoms are due to food allergies. I was allergic to literally everything as a baby but out grew a lot as I got older.. Now my issue is I can't afford a natural path and so my only option seems to be the meds... I am terrified of taking anything with the side effects and it may be the one thing that keeps me from going through with Humira... Please what do I need to be aware of starting from day one to a month or three later and even long term
 
Hey I just joined this in hopes that I can get some reassurance, I'm possibly starting humira in a week or two and I'm terrified of taking drugs,
I've been meds free for almost ten years now and have had one re section in my life time, for the most part I am extremely lucky for how small my side effects have been after my surgery! I get minor flare up and minimal pain but I've always had diarrhea and slight stomach discomfort with gas and pain.. Also from time to time my skin on my face in the corners of my mouth and on my eye lids will flare up and crack.. Just in these last few months though I've been having a lot of issues with all my joints, it seems just as one joint starts to get better another will swell up and cause arthritis like pain.. So I've been in the dr office and getting blood work every week and twice a week until my specialist contacted me to pretty say that it's enough and now it's time for me to take further steps... Aka Humira
I lean more towards natural remedies and believe that a lot of may 'crohns' symptoms are due to food allergies. I was allergic to literally everything as a baby but out grew a lot as I got older.. Now my issue is I can't afford a natural path and so my only option seems to be the meds... I am terrified of taking anything with the side effects and it may be the one thing that keeps me from going through with Humira... Please what do I need to be aware of starting from day one to a month or three later and even long term

Hey just wanted to say hi. I just started humira today so I have no expert advice ...however it was a very tough decision for me to go on meds. I am still seeing a naturopath as well, but even she advised start with humira get things under control also do the diet and then maybe I can come off humira. I say give it a chance, but only you know what is best for you.

Hugs,
Christina
 
I was diagnosed in May of this year, my doctor left me no choice other than Humira. It has done wonders for me, but as I read every ones posts i see all kinds of other things listed that people are taking in addition to the Humira. Are these choice medications or doctor recommended choices? Makes me wonder if I should be adding something. I have never had any kind of health problems prior to this horrible Crohn's diagnosis.
 
I looked up methotrexate in combo with Humira. It seems this combo is directed more to different types of Crohns or UC, or is added when Humira alone is not working. My Crohns is in the TI and Humira alone is the first method of administration. I don't want to add anything more than what's necessary , so for me Humira and Pentasa is what I'm currently on. It's only been 8 weeks for Humira. I'm not in remission yet.
 
I started Humira at the end of October this year and due to bronchitis/cold, I was told to skip my last injection (last week Thursday), boy have I noticed the difference. It had not put me into remission yet, but I felt like I was on my way (finally). Skipping last week's dosage, I noticed by Saturday that I was feeling icky again, diarrhea increased, joint pain etc. But the weird thing was that with the joint pain, I noticed that different joints were hurting more than usual. Usually my joint pain is in my back and knees, now I feel it in my ankles and fingers.

Has anyone else ever experienced the start and stop then start again process with Humira?
 
Red89,

You seem to have very similar situations to me. Unfortunately, I do have the extreme pains in my stomach and back like most Crohn's patients. I have never had the D or really any of the other effects other than weight loss. I too went almost 10 years without any medication. My doctor is a little more hesitant to just throw me on Humira, but we really all eventually get left with ONE choice.
 
I would consider Agent99's reply of 4 years on Humira a success story. I am hoping I get some longevity in taking Humira.

Question. Does the fatigue that follows right after taking a shot ever go away?

Sorry for the late reply, LodgeLady! Yes, I use to become fatigued and have headaches when I first started Humira. It was so bad that it affected my weekend (I injected on Fridays), so I started injecting on the beginning of the week instead. I'm back to Friday injections and it doesn't seem to bother me like it did in the beginning.
 
I was diagnosed in May of this year, my doctor left me no choice other than Humira. It has done wonders for me, but as I read every ones posts i see all kinds of other things listed that people are taking in addition to the Humira. Are these choice medications or doctor recommended choices? Makes me wonder if I should be adding something. I have never had any kind of health problems prior to this horrible Crohn's diagnosis.

Titanette - I've been on Humira for 4 yrs now and my doctor would rather that I take Humira AND 6mp. However, I get a severe reaction to 6mp (severe nausea and vomiting, stomach pains, and my entire body gets cold from the inside... just cant get warm). Anyway, the reason he wanted me on the 6mp is because adding the 6mp to the Humira treatment has shown to lengthen the amount of time Humira is effective before the body develops antibodies to the Humira. Since I can't take the 6mp, I'm only on Humira and I've had good luck with it. I recently had a blood test and it showed that I have NOT developed the antibodies to Humira. I've been feeling poorly though, so the good ole colonoscopy is tomorrow. Oh Joy!
 
Spoke with my Doc today. While we are waiting for the full effects of Humira to happen , he agreed to let me slowly re-introduce some fiber in my diet. IE, small salad. I have been on a low fiber diet for 4 1/2 months. He said I will know within 2 days if any of this reintroduction will negatively effect me. So small salad tonight it is!
 
Agent99, thanks for the response. I am not sure what 6mp even is. My doctor has not recommended anything but the Humira. I see her next month, so I guess I will ask. I would prefer not to have anything else in my body if possible. I hate that I am on the Humira.
 
Sorry to post twice so quickly, but one more question. Has anyone had high blood pressure since going on Humira? My blood pressure has always been low, but it has been off the charts high. Had a depo shot appointment and they almost didnt give it to me due to my blood pressure being so high. Went in for my follow up Hep. A vaccination and once again it was really high. I have to wonder if the Humira is the cause.
 
No blood pressure issues but I now have a second respiratory infection in 2 months since starting Humira. I am really trying to give this drug a chance. I'm still not pain free, appetite comes and goes, and now these infections.

I hope your BP settles down soon.


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My bp has been a little high, but I attribute that to age and excessive weight (and possibly hereditary). I don't believe it is anything new since beginning Humira.

I found myself to be less sick while on Humira. When I first started, I posted a sign on my office door and asked all sick people to not enter my office (haha). Now, I'm still very concerned about getting near sick people, but I also know that I feel healthier while on the Humira. My thinking is that while off the Humira, my immune system is out of control overactive. This causes my immune system to fight itself (and cause illness symptoms). While on the Humira, my immune system is "more normal" and thus, it doesn't over react to perceived illness. I dunno... could be erroneous thinking, but I do know that my illnesses (colds, URIs, etc) have significantly decreased on Humira.

I had my colonoscopy yesterday. Although I didn't get to speak with the doc afterwards because I was still sedated, the post-op staff gave me details and the doc did speak with my hubby. Seems I have a small area of inflammation bu it's one of the better colonoscopys that I've had....meaning the Humira is working and he's going to keep me on it. I've got to go back on a strict diet until I see the doc for my follow-up. All-in-all, I'm pleased with the results, however, now I'm concerned that something else is going on because I have had severe lower abdominal pain recently. I've had a hysterectomy (retained ovaries). Now I wonder if what I was feeling was ovary pain from a cyst or something. However, at my recent gyn appt, my gyn pointed out that at my age (haha) my ovaries are not producing much (I can attest to that.... hot flashes!). I guess I'll wait to see what happens at my follow-up.

Good luck on the "small salad" LodgeLady.......... that's one of the things I miss the most when I'm flaring..... a fresh salad!
 
Funding issue kicked in.
my doctor wants me on increased dose of Humira to see if it will help the Anal Sinus try and close over. Surgery failed three times and it seems to be closing with Humira but the nearer its time for another injection the skin is tearing.

so Christmas Eve I had 3 shots and been feeling really unwell. the blurred vision is finally getting a bit better but that feeling you get when flu is just about going to start and shivering and of course being the holidays the NHS basically shuts down.
 
Hi. I have just had my first 4 doses of Humira on Friday. I have been having a flare up since June but it has been really bad over last 4 weeks (Christmas was ruined!). When nurse came to show me how to use the injection pen, she said that I should start feeling the effects of the Humira straight away. I got quite excited that I might start feeling more 'normal' again. But 4 days later and I am still running to the toilet 20+ times a day (I don't know where it all comes from as I am not really eating anything!). I feel absolutely exhausted and have not got out of bed for 2 days. I have been reading lots on line about Humira and I do realise it can take up to 6 months to kick in, so why did the nurse have to raise my hopes??? I am at a loss as to what to do with myself. I've lost a lot of weight (luckily I have a lot to lose!), I am exhausted and my bottom is so sore from going all the time that I can barely sit down (I tend to lay on my side). I rang gastro nurses at hospital for advice and they are closed until the 6th January so rang consultant directly and HE is away until 6th January. In desperation I rang GP who said 'ring your gastro nurse'!! He didn't have any ideas of what to do with me. He gave me more loperamide which I am taking, but that is giving me terrible cramps. I'm in a vicious cycle. Any suggestions??
How long does it take for Humira to start helping? I'm happy that I don't seem to have any negative side effects other than feeling very tired, but I guess that is more because I am in a flare rather than the Humira.
A bit of a rant and moan, sorry. Just feeling a bit fed up! Was looking forward to 'partying it up' tonight but I guess that's off the agenda!!
 
Sorry to hear about your suffering, Jennifer! I started Humira on September 3 and feel that it is just recently starting to make any kind of difference. My gastro added a small daily dose of Azathioprine also in November, and I am on various other meds for Crohn's and its related issues. My Crohn's was/is severe, however, and was totally out of control when I started Humira, so hopefully yours will kick in sooner. I will likely be going to weekly injections in March when I see my doc again because I'm still not feeling enough benefits from my current dose (every other week).
 
Thanks for reply. I too have very 'out of control' severe crohn's so maybe I just need to give it time. Unfortunately I have been on most other medication for crohn's and have had bad reactions to all of them, except infliximab, so I really have my fingers crossed!!
 
Thanks for reply. I too have very 'out of control' severe crohn's so maybe I just need to give it time. Unfortunately I have been on most other medication for crohn's and have had bad reactions to all of them, except infliximab, so I really have my fingers crossed!!

Jennifer, I to am new to Humira and agree the nurse should not have told you that Humira would start immediately. As with crohn's, everyone is different, symptom's, treatment's etc. they way medication would work, would also have to be per the individual.

When I started Humira, I was in a flare but I did see result by the time I was giving my self the second (2 shots) injections, however I was still in a flare. Unfortunately, I had to stop due to bronchitis/cold. Once I was off for a few days beyond when I was supposed to take it, I noticed other symptoms along with normal, for me, crohn's symptoms back.

When I first started to consider Humira, this site and all the postings is what convinced me to give it a try, and I am so glad that I did because I have received more information from the posts that I have ever gotten from My Humira or the doctors.

best of luck
Sandi
 
Hello, I just started my loading dose of Humira... i cannot begin to describe how much that hurt!! I was expecting it to be bad because, I can be a real baby when it comes to needles and things of that sort (i'm working on it, i'm getting much better..well i kinda have to lol) ... but oh my, that was the worse pain I've ever felt. I was just wondering if anyone else experienced a lot of pain from the injections. What have you done to cope? It wasn't the needle piercing my skin that hurt, i felt it hit but it was the medication spreading that killed. My nurse said its the PH levels in the medication that my body doesn't like/cant handle. Does anyone know anything more about this? I am so new to all of this! I haven't even been diagnosed a year yet, my anniversary is on Feb 1st!! Thank you all so much! Looking forward to meeting some great people on here!!
 
Michaelagraham, the first four shots killed me, I made my daughter go and learn because I am a needle freak, I almost knocked the first one in my leg out of her hand. I had lost almost 30 lbs at that time (may). I have now gained my weight back and the shots while still not enjoyable, are not as bad. I NEVER put them in my legs, that hurt worse than my stomach. I did read on here where people numbed the area with some ice first, and while the poke was less, I felt the medicine much more and it left a major purple spot on my stomach for days. I will not be doing that again.
It gets more tolerable, and if it helps you anything like it has helped me, there will be dread the day of, but in the end, I can eat!
 
Michaelagraham, the first four shots killed me, I made my daughter go and learn because I am a needle freak, I almost knocked the first one in my leg out of her hand. I had lost almost 30 lbs at that time (may). I have now gained my weight back and the shots while still not enjoyable, are not as bad. I NEVER put them in my legs, that hurt worse than my stomach. I did read on here where people numbed the area with some ice first, and while the poke was less, I felt the medicine much more and it left a major purple spot on my stomach for days. I will not be doing that again.
It gets more tolerable, and if it helps you anything like it has helped me, there will be dread the day of, but in the end, I can eat!

oh really? i heard that it hurt more where you have less fat, so thats why they chose my legs.. but maybe my next two injections ill try one on my stomach and one on my leg to compare.. I know what you mean, I was ready to punch my nurse.. I think I might have broken her ear drum..ooops haha but i tired numbing the area after my first injection and i found that it wasnt much of a difference.. i even took them out a couple of hours before being injected because i read on here that it hurts if its cold.. but i guess my body just reacts to the medication! thanks for the reply though!! im glad im not alone!
 
Welcome michaelagraham! Sorry to hear about the pain you experienced with the loading dose. It does sound like your body has a stronger reaction than most, since you tried all the "tricks" (letting the medication warm up, icing the area, choosing a fattier area) and they don't seem to work. I've never heard the pH reason before (i.e. that the pain is caused by intolerance of the pH of the Humira), has anyone else? I've heard a few people on the board say that they started to experience increasing pain after sustained Humira usage; I wonder if this could be related to the pH factor - for example, does the Humira start hurting more because a person's pH has changed?

On the bright side, keep in mind that your next dose will only be 2 shots, and then only 1 shot on future doses. For me, the loading dose didn't hurt too much, but the psychological stress of taking 4 shots in one sitting was horrible. I sat there for a long time before I could bring myself to do shots 3 and 4.

I hope Humira works well for you and gets the disease under control. If it works well, you may not mind the trade-off of the temporary pain every 2 weeks. Good luck!
 
I am a newbie to Humira as well and had my initial doses recently (4+2).
While the first dosage of 4 shots did hurt a lot more than I was prepared for, the next 2 weren't as bad. I did the 2 doses by trying the room temp way and do believe that is the reason for a relatively lesser pain experience.

However, I would like to point out that the Humira nurse I spoke to recently, said that they recommend injecting at a cooler temperature (i.e. injecting right after taking out of the refrigerator) instead. Wonder if it does make a difference to the efficacy of the medicine. Any feedback from anyone? Thanks.
 
Hi Idlebrain

I find that if I leave it out for 30 mins or so that it burns less!!! I have been on it for 6 months was doing good but they DC it lasst night at the ER!!!!! Good luck!!!!!
 
oh really? i heard that it hurt more where you have less fat, so thats why they chose my legs.. but maybe my next two injections ill try one on my stomach and one on my leg to compare.. I know what you mean, I was ready to punch my nurse.. I think I might have broken her ear drum..ooops haha but i tired numbing the area after my first injection and i found that it wasnt much of a difference.. i even took them out a couple of hours before being injected because i read on here that it hurts if its cold.. but i guess my body just reacts to the medication! thanks for the reply though!! im glad im not alone!

I learned a trick many years ago when giving my dog her shots for diabetes, thump/flick the area about 5-6 times, like you are flicking your skin. The pain from the flicking/thumping will make your brain believe that something is trying to cause you pain and will create a numbing effect. I have tried that with my Humira shots, and it worked a little bit more than without doing it.

Sandi
 
How bad was your asthma before? This is good to know. I have mild asthma that comes around occasionally in the fall or after a bad cold with about 3 -4 months of coughing.
 
This was my second attack that happened right after taking the shot, but this attack put me in the hospital. My asthma was very controlled to the point where I was only taking a maintenance inhaler and allergy shots. Be very very careful about starting Humira if you have any type of asthma!
 
Thanks Lodge Lady .... BIG note to self on that one!!!! My asthma doesn't seem to be the chest tightening kind but the coughing kind. I carry an asthma inhaler because the body is unpredictable and it does help on a coughing spasm but I could go years without using it. I am planing to get a pneumonia shot at some point because having asthma makes you susceptible to upper respiratory issues.....just like it does smokers. Whenever anything is going around....it's me and the smokers in the office who are coughing!!! I hope that never changes because the constricted airway type must be very scary. Thank you for sharing with me.
 
Lodgelady thanks for sharing. I haven't had bad asthma in years. I used to have to go in for breathing treatments all the time. I take 10mg singular daily and that is all. The other day I swear it felt like an elephant was on my chest and I thought maybe it was anxiety but now it feels I may be getting something in my chest. Ugh so of course I'm freaked out. I don't take my inhaler bec I've developed a fear of heart palpitations. Over the course of my diagnosis I kept getting terrible chest pains and that caused anxiety so many ER trips where they found nothing and I felt like a basket case so now I'm trying to not be so sensitive about everything but still keep an eye. A difficult balance! Been on humira since dec 18.
 
It was so obvious this last shot. It's like my whole immune system got sucked out 24 hrs later. I am usually not a wheezer but a sweller and cougher. So prednisone is the drug I go on for asthma along with antibiotics. But this episode my lungs were junky. Crap rolling around audible raspy wheezing. It's like I was drowning in phlem. Like I said I never present that way with my asthma, more dry cough and swelling.

I am stopping the Humira. Staying on Pentasa but now I'm being referred to U of MD Crohns and Colitis disease center. My doc wants to get the experts out to really pinpoint the reason for my inflammation, and recommend to him a treatment plan. I love this doctor but understand he doesn't have all the answers. I am very lucky to have such medical facilities so close to home.

Oh, in 3 weeks I have to get my gallbladder out! :(
 
I started on it in June 2010. It took a few months and now I feel like I don't even have crohns. I can eat and drink whatever i like. My weight is back to pre-crohns and I feel healthy. I still go to the toilet more oftan than what was normal to me before. But it's not really a problem.

but as crohns if different for everyone, I can on advise you give it a chance.
 
It was so obvious this last shot.

Oh, in 3 weeks I have to get my gallbladder out! :(

I had my gallbladder out - surgeon specialized in minimally invasive surgery --- I had almost no pain even though a fairly large scar from the simultaneous bowel resection. He did most thru laparoscopy. I highly recommend that -- didn't need one pain killer afterwards. :ylol: Best wishes for your fast recovery!
 
HI everyone,

Finally am looking to start on Humira. I've been through the proverbial ringer between my blood work, colonoscopy, surgeries for fistula, etc. However, after a skin test and chest x-ray, I am confirmed tb negative after a skin test and chest x-ray. So the doctor called today and said he is attempting to get approval to start Humira.

So the short of this long form question is, how difficult is it to get approval for Humira? I have had perirectabl abscess, fistula x2, seton placement, and colonoscopy showing inflammation at the terminal ileum. Any thoughts?
 
I had no issues following Dx -- they sent it to me immediately. Would like to know how you are doing on it as you progress. Keep us informed!! Good luck!
 
@ey218: Getting approval should not be a big concern. Obviously, it is not something that a Doctor would prescribe without due diligence. Looks like they have all the back up info they need to get approved.

I recently got started on Humira as well (was on Remicade earlier) and do feel that it is starting to make a positive difference. Good luck.
 
I've been on Humira for over a year now and overall doing well. Back in December I was placed on prednisone for 9 day to reduce inflammation. That's been about it.

Good Luck
 
hi everyone. I read this forum on and off when I had questions and I find it very helpful. as from yesterday im on humira(I've got Crohn's for 6 years now, small bowel resection), we've tried everything and this was my last resort. I don't find it painful at all :) my pain threshold must be very high, I dealt with excruciating pain till surgery last year. even my surgeon was surprised .
anyway, I thought I should introduce myself since im stalking and maybe I can help others with my experiences also. :)
 
I am beginning to worry that Humira is not going to work.

Been on it for 6 weeks now and no real improvement. Should I be giving it longer?
 
I've heard it takes a while and I'm thinking I read 3 months somewhere. I'm sure someone more knowledgeable and familiar who taking it will respond.
 
Welcome 3kiddiesmumma!! I talked to my Rheum nurse yesterday and asked her about Humira and she said her patients are doing really well on it and no one has complained of painful injection sites.
 
Sandi Creek going to try that with the next shot. I always do that with my horses but never thought to do it with my son. Does it minimize the post injection stinging?
 
Sandi Creek going to try that with the next shot. I always do that with my horses but never thought to do it with my son. Does it minimize the post injection stinging?

Zoodles, I feel that it helps with the sting of the needle going in, but the burn that I experienced originally when I started taking humira doesn't affect me anymore after reading some of the other posts and trying their methods.
 
i have been told not to squeeze any skin/fat. just hold the pen against my skin and stretch the skin with the thumb and finger. had no discomfort at all, stings a bit when the medicine goes into the body but the needle doesn't.
 
hi. just a question. does anyone have any pain still, with humira I mean? and any headaches and fatigue still going on?
how long it takes to feel better?
thank you
 
Wish I knew

I have been on it for 2 months and I have no improvement

I have also had no side effects which I hope is a good thing and I am trying to stay positive.
 
the bloating and discomfort seems worse, pain ( not excruciating but still pain), headache and tired like hell. I will take out some foods from my diet and see if it makes any difference.
 
Hello everyone. I need some serious advice. I am starting AmeriCorps (a 10 month service) in a couple weeks. We travel a lot for this program. I can always get my shot wherever I am. That is one thing they guarantee to me. The problem is keeping the numerous shots at the proper temperature for extended periods of time. I should have access to a refrigerator when we arrive at places, but other than that it is up to me. A cooler is a possibility. The problem is that ice packs are not ideal because we may be driving for 20 hours and I would be afraid that they would melt before then. How about ice? But then I would be afraid that it would get too cold. Anyway, any advice at all would help.
 
Hello everyone. I need some serious advice. I am starting AmeriCorps (a 10 month service) in a couple weeks. We travel a lot for this program. I can always get my shot wherever I am. That is one thing they guarantee to me. The problem is keeping the numerous shots at the proper temperature for extended periods of time. I should have access to a refrigerator when we arrive at places, but other than that it is up to me. A cooler is a possibility. The problem is that ice packs are not ideal because we may be driving for 20 hours and I would be afraid that they would melt before then. How about ice? But then I would be afraid that it would get too cold. Anyway, any advice at all would help.

Seriously I would put off starting Humira in this situation. First it may take some time before you know if it's even going to work. Secondly, in the beginning there is a lot of fatigue. Keeping the syringes in an absolute cool environment is paramount. Given all the uncertainties I would wait the 10 months before starting it.
 
I wouldn't start the shots until you are certain you can comply with necessities for the medicine care. Either that -- or don't go to Americacorps due to medical issues.
 
Ssvarner, I've given a lot of consideration to traveling with Humira as well - though as of yet I have not had to do it. I like to travel internationally for weeks at a time but am very concerned about temperature control (also a little concerned about problems getting medication through customs/security, but possibly a doctor's letter would suffice). If you use the search function on this site, you'll be able to find a few threads on this specific topic.

I've read that people have traveled with Humira using small battery powered coolers, or they have used insulated bags filled with ice packs - and on flights they ask the flight crew to put some ice packs in the freezer so that they can swap out packs as they melt (this latter method, assuming you are on a flight, can probably last you until you get to your destination where hopefully you'll have a refrigerator).
 
Seriously I would put off starting Humira in this situation. First it may take some time before you know if it's even going to work. Secondly, in the beginning there is a lot of fatigue. Keeping the syringes in an absolute cool environment is paramount. Given all the uncertainties I would wait the 10 months before starting it.

I'm sorry for the confusion. I have been on Humira for 3 years. There is no option to stop the medication nor am I willing to resign at AmeriCorps.
 
Ssvarner, I've given a lot of consideration to traveling with Humira as well - though as of yet I have not had to do it. I like to travel internationally for weeks at a time but am very concerned about temperature control (also a little concerned about problems getting medication through customs/security, but possibly a doctor's letter would suffice). If you use the search function on this site, you'll be able to find a few threads on this specific topic.

I've read that people have traveled with Humira using small battery powered coolers, or they have used insulated bags filled with ice packs - and on flights they ask the flight crew to put some ice packs in the freezer so that they can swap out packs as they melt (this latter method, assuming you are on a flight, can probably last you until you get to your destination where hopefully you'll have a refrigerator).

The problem with the small battery powered cooler is that I will have a 3 months supply of Humira to begin the trip
 
I'm reporting in after 7 weeks on Humira. The headaches went away after 4 weeks. I still have fatigue, heavy fatigue for two days after the shot. I have had severe joint pain which I understand is rare but does happen. I just had a shot on Tuesday and so far my joints are only stiff, not painful. Keeping fingers crossed that it wont get as painful as the last two week cycle. In the first 4 weeks of treatment my intestinal symptoms abated (loading dose was most helpful for those symptoms) but the past 3 weeks have been a struggle. I pulled sweet potato off my menu and symptoms are improving. Too bad! It was a safe food that I loved.

Ssvarner, we own a battery operated cooler that we use for traveling with medication and it works very well. There are some models that are better than others. Don't know if that will help in your situation. I had one shot misfire and after many phone calls, I was directed to call Abbvie. They were extremely helpful! They overnighted me a replacement plus and extra shot. Based on my experience, I would suggest you call them and ask their tech about what they suggest. Best of luck to you!!
 
Hi all!
New to the group- starting on humira in a few weeks...have a rectal abscess that needs to be under control. am currently on imuran, but not putting me into remission, so going to try to add humira
 
I'm reporting in after 7 weeks on Humira. The headaches went away after 4 weeks. I still have fatigue, heavy fatigue for two days after the shot. I have had severe joint pain which I understand is rare but does happen. I just had a shot on Tuesday and so far my joints are only stiff, not painful. Keeping fingers crossed that it wont get as painful as the last two week cycle. In the first 4 weeks of treatment my intestinal symptoms abated (loading dose was most helpful for those symptoms) but the past 3 weeks have been a struggle. I pulled sweet potato off my menu and symptoms are improving. Too bad! It was a safe food that I loved.

Ssvarner, we own a battery operated cooler that we use for traveling with medication and it works very well. There are some models that are better than others. Don't know if that will help in your situation. I had one shot misfire and after many phone calls, I was directed to call Abbvie. They were extremely helpful! They overnighted me a replacement plus and extra shot. Based on my experience, I would suggest you call them and ask their tech about what they suggest. Best of luck to you!!



glad (or should I say not so glad :) ) im not the only one with headaches.
you gave me hope it will subside. the bloating is the most that bothers me. as from Monday im gonna take out foods too, see if it helps.
 
3kiddiesmumma - This week was the best yet as far as side effects. The only side effect since my shot on Tuesday is some fatigue. I feel some headache type pressure but certainly not a headache! The horrible headaches have really cleared up! The bloating is improved a lot this week too. Paying attention to food triggers is making a big differnce for me. I had a breakthrough this week with adding millet and quinoa (gluten free grains) that I soaked overnight in apple cider vinegar (breaks down chemicals known to be gut irritants). I am so happy to finally enjoy some grain after nearly two years off it. My motto is "stay the course and keep up the hope!!!" *And pay attention to my guts!! lol
 
Joining the club.
I had my first shots on Wednesday. Wednesday night I had headache and pressure/pain behind my eyes.

Before the shots I was/am on 25/30 Pred but I was getting quite a lot of stomach pain even when eating my safe food :(. CRP was at 77. This seems to fluctuate a lot, anywhere from 30-114.

I'm really hoping this new drug helps me, I was feeling so down this week because I got the impression if I ate my safe food I wouldn't get any pain.

New to crohns (symptoms started in Sep 2013, diagnosed Oct 2013)
 
@Jag23: I must say it was a relatively quick diagnosis. It typically takes months, if not longer, before one is conclusively diagnosed.

I have been prescribed Humira recently too and see considerable improvement. Wish you well.
 
@Jag23: I must say it was a relatively quick diagnosis. It typically takes months, if not longer, before one is conclusively diagnosed.

I have been prescribed Humira recently too and see considerable improvement. Wish you well.

I was in hospital with suspected appendicitis and from there I had a camera OP and then CT scan and then a colonoscopy confirmed crohns. Since then my GI has said I may have had crohns around 2 years due to my weight loss but my main symptoms only started in September.

I wish you well too, so far I have seen an improvement but it's difficult to tell yet, when my Pred is lower I will then know because I've never gone lower than 4 tablets without my pain increasing a lot
 
I am looking for a portable electronic medical cooler for travel with 2 or 3 humira injections. Does anyone have any advice on a brand or where to get it?
 
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