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I just started Humira on the 18th. Had the four injections done in my legs and this past week my legs have been feeling kind of achy especially my knees. Just wondering if this a possible side effect from the injections or what? Is it something I will feel after every injection?


💜💛 Jen Hebert 💜💛
 
mrshebert11,

I too experienced this. I just had my 3rd dosage, it seems to only last a couple of hours and will typically go away. However, I experience back pain/soreness almost everyday ever since starting Humira but it is tolerable and doesn't seem too serious yet.

How is Humira working for you?
 
@newbie4- I am actually feeling pretty good but my doc still has me taking prednisone and Lialda with the Humira injections so I am hoping once I am only doing the injections I will continue to feel good. I have been on Lialda since July when I was first diagnosed with Crohn's but it just doesn't seem to be working the way it should.


💜💛 Jen Hebert 💜💛
 
@newbie4 and MrsHebert11 I too Am on Humira however I give my injections in my abdomen That's the location I was shown how to inject them at I have tried my legs twice tho and as you both said I noticed aches in my legs. With doing my injections in my abdomen I don't seem to notice as much pain. I have been on Humira almost a year now and about half way through I switched to the self injection syringes because the pens hurt way to much. That could always be an option to try too. Also I am on Lialda as well and have been for also almost a year I never noticed much of a difference when taking it but my doctor has explained to me that it is more of a preventive medication for me because it goes and breaks down and coats and protects the colon. Seeing so my major crohns problems are in my terminal ileum what he says makes sense to me and the medication try's to protect the colon. Also I know I'm writing a lot sorry I thought it might help to know some background I was diagnosed last October!! Did not respond to most medication and then that's how I was put on Lialda and Humira by Nov and Dec. A year later I can honestly say Humira has greatly improved my quality of life it's not perfect by no means but much much better also I am now on bentyl I was still recently having a lot of abdominal pain and cramping even tho my inflammation is way way down. We tried some other meds but this bentyl has helped a lot so if you are still having abdominal pain bentyl is awesome. I have stricturing so this medication helps with the cramping from that. One last thing don't get discouraged of you have some rocky moments with your Humira. I have had times where it randomly felt like it wasn't working but in the end I'm doing much better and overall it works great sometimes you just have to find the right combination of stuff to do and take! Good luck to y'all :)
 
HI i had been in the study with remicade and humira remicade nearly killed me and humira works great now for 5 years and bc i did the study and that i have a rare type of crohns i get it for free as long as it works:) as well I have tried many other treatments
 
Hi guys.

I was on Remicade from 2000 through 2009. I then started Humira. I started the Remicade for anus to skin fistulas, which it closed. I started Humira because by the time i was pregnant in 2009 i'd stopped and started remicade twice before and she didnt want me to take a chance on building up the immunities. I've not noticed any significant improvements with Humira. In a recent MRI, for something unrelated, it was discovered that i had complex / communicating fistulae in the rectum area.

I have Hidradenitis and Psoriasis, which Humira is supposed to help with. I think it is helping the Psoriasis but it didnt seem to help with the Hidradenitis. I also take Asacol for inflamation.

My question is, what is Humira for other than fistulas? If i still have complex fistulae then it seems to me there is no point in taking Humira.

Any feedback? Thank you.
 
I have no fistulas. I am newly diagnosed Crohns at the ileum. I've been prescribed it because I am failing prednisone weaning. It's supposed to have the least side affects of the biologics.I've only had my first 4 starter shots. Next two are this Friday. I did notice some relief during the first week. Hoping it helps me get off the pred. Best of luck to you.
 
mish2575 said:
Hi guys.

I was on Remicade from 2000 through 2009. I then started Humira. I started the Remicade for anus to skin fistulas, which it closed. I started Humira because by the time i was pregnant in 2009 i'd stopped and started remicade twice before and she didnt want me to take a chance on building up the immunities. I've not noticed any significant improvements with Humira. In a recent MRI, for something unrelated, it was discovered that i had complex / communicating fistulae in the rectum area.

I have Hidradenitis and Psoriasis, which Humira is supposed to help with. I think it is helping the Psoriasis but it didnt seem to help with the Hidradenitis. I also take Asacol for inflamation.

My question is, what is Humira for other than fistulas? If i still have complex fistulae then it seems to me there is no point in taking Humira.

Any feedback? Thank you.
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well i have been on both remicade and humira both seems to work for all symtoms of crohhs and other illness. have you tried methotrexate with it? or predisone? both these drugs can work together very well. ive been on it all and its hard to find the right mix when you got a rare type and 100% full of crohns
 
I was diagnosed with severe Crohn's/Colitis in May of 13 after almost a year of misery and pain. My doctor left me no options other than Humira. I started with four shots, two in my stomach and one in each leg. (The leg shots killed me, never again). I began to get relief two days after the first four shots and have been pretty much been sympton free ever since.

I also take Florastor every day as well, which is a pro-biotic. Side effects have varied, I still feel run down easily, i get an occasional headache, I also get cramps in my feet really bad, but have not found where that is a side effect. Overall, I think it was the right choice, I have gained all of my weight back and have a life.

I have been reading this forum since my diagnosis, and today I decided to share my story. :) This is where I have gotten most of my info about my disease. Thanks!
 
Titanette, I've had sore feet and hands since I've started Humira. It's a constant discomfort and some days I can't do much because of pain. A few weeks ago, 1 hand hurt so much I couldn't even do the easiest chores, even picking up a fork.
And welcome to to forum :)
 
Thank you for the welcome :) mine are just cramps at the end of the day once I sit down or go to bed.
Before diagnosis I suffered major pain in my feet and my hands. I had to get up hours before work because I was in so much pain I could not walk or hold a toothbrush. Humira fixed that as fast as 48 hours. It was crazy and I hope to never be there again. I still do not know how I worked during all of that.
 
forum contributor said:
Yup yup, very true - freeze the area and take the pen/needle out of the fridge for a bit to warm up a little (at least take the chill off!).
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When I was on it I used to take the pen out of the fridge and leave it out for 30 mins before injecting. Freeze the injection site for at least 2 mins with ice in a plastic bag to numb it. This procedure worked well for me.

Currently I am not on it, recovering from resection, surgeon doesn't want me on Humira until surgery site is healed completely.

Gra

2
 
SylvieA said:
Titanette, I've had sore feet and hands since I've started Humira. It's a constant discomfort and some days I can't do much because of pain. A few weeks ago, 1 hand hurt so much I couldn't even do the easiest chores, even picking up a fork.
And welcome to to forum :)
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Silvie, are you sure this pain is not a reaction to the Humira?
Gra

2
 
SylvieA said:
I never had aches like this before. It all started with remicade, and it continues with humira.
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So I assume that on balance the Humira is helping you in other ways, and so you put up with the pains. Have you tried maybe a lower dose of Humira (eg: taking it less often?)

Gra

2
 
I never really had symptoms other than fatigue and fistulas, but the fistulas never bothered me. I never had the typical crohns symptoms at all. It pretty much just started last winter, where I got stomach pains, then one day I was woken up by pain on my lower right side. Ended up being an abscess, tried over a month of cipro and flagyl, wasn't doing anything at all. So surgery was done. Got loads of problems after surgery, but once healed I was fine, then started remicade, was allergic, then humira, loads of side effects, which got better other than discomfort to my hands and feet. Doctor doesn't want me off humira, and he prescribed purinethol to take daily, but I've never taken it because I don't want more side effect than I already have/had. I've noticed that my diet makes a huge difference how I feel, but doesn't get rid of that pain. So I'm really just on humira to prevent fistulas. But it's not healing a fistula I've had for over 11yrs, but it's not really active, so no leakage, other than occasional gas.
 
That will eventually go away. After my second dose even the fatigue wasn't as bad. I am already seeing improvement. Hang in there.
 
Good afternoon! I've been on Humira for almost 4 yrs and just started flaring. The doc has scheduled me for a new blood test (Prometheus Anser ADA) that is supposed to tell if I have developed the antibodies to Humira and what the levels of Humira are in my body (or something like that). If the results come back that the Humira is no longer effective, I need to start either Cimzia or Remicade.

How long has Humira lasted for you? I'm kind of bummed and really hating this flare.
 
Hey all, I wanted to post some encouraging news for once - it's been about 10 months that I have been drug free with life getting more normal everyday. I believe the humira did help (6 months of bi-weekly doses with little to no change - then 2 months of double dosing - then I just stuck to the 'no sugar, no starch, and lots of homemade yogurt' diet (SCD) and i've been holding steady. 2 movements a day and less urgent, but it took time. I even travelled to Europe (Sweden!). In the last month, some days it just have 1 movement a day.

Like everyone with CD CL, i was down and out. I was pissed i could get on top of my sh*t and it angered me to read when others said they were able to do it. I'm knocking on wood and hoping you all find the right balance that works for you.

Strength to everybody and thanks for posting - always helpful.
 
Agent99 said:
Good afternoon! I've been on Humira for almost 4 yrs and just started flaring. The doc has scheduled me for a new blood test (Prometheus Anser ADA) that is supposed to tell if I have developed the antibodies to Humira and what the levels of Humira are in my body (or something like that). If the results come back that the Humira is no longer effective, I need to start either Cimzia or Remicade.

How long has Humira lasted for you? I'm kind of bummed and really hating this flare.
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Agent99, I'd ask your doctor about MTX/methotrexate. It helps with the antibodies and makes Humira ( I think 30%) more effective.
 
My Mayo doctor has me on 25mg of 6-MP to help my body not develop anti-bodies to the Humira. Cutting edge protocol from Mayo???

Agent99, I hope you are feeling better! Flares suck!

I've been in a flare for two years and just started Humira yesterday. Though I had plenty of trepidation, the loading dose was just fine. I let the shots get to room temp and did 2 in the tummy and 2 in the legs. The tummy was easier, less painful. No side effects today! I'm SO grateful and hopeful the Humira will get me into remission. I need to gain back 20lbs.

okmontreal, thanks for posting good news. That was a heck of journey with the dosage. I have been following the Auto Immune Paleo food protocol and I have to say it has really helped me tremendously. I will slowly add foods back in one at a time once my flare symptoms go away, BUT, I will probably stick with no sugar, legumes, beans, nightshades, no grain, seeds or nuts. I just do way way better without those foods and I want to give my plumbing at least two years to repair itself.

Thanks everyone for all the posts. It really helps me to not feel so isolated.
 
Scaryman - How do I post my medication history in my profile like you have it? I find it very helpful to see what others have tried and what works. I'm a bit computer challenged...it's probably really simple, but has alluded me this week when I try to figure it out. :)
 
Michelley said:
Scaryman - How do I post my medication history in my profile like you have it? I find it very helpful to see what others have tried and what works. I'm a bit computer challenged...it's probably really simple, but has alluded me this week when I try to figure it out. :)
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When you click your name at the top right side of the page where your notifications are, click on "about me" then edit there. let me know.
 
It is common to add an immunosuppressant while on Humira either MTX or 6-mp.
This reduces the risk of antibodies forming to the humira.
but increases the risk of t-cell lymphoma for young male children.
it also makes the biologic more effective for some people.
 
Scaryman said:
When you click your name at the top right side of the page where your notifications are, click on "about me" then edit there. let me know.
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I tried this but can only put one line in. How did you get so many lines in yours? is it in Biography?
 
Just got permission from BC Pharmacare to increase Humira to weekly injections. Today will be day 11 since my last injection. Not sure if now I am supposed to take it every Saturday (instead of Tuesday). I see my GI doc on Thursday.

He wants me to have a fecal cal-protectin test too. I had this done about six months ago in his lab for free (he was working on a research grant). Now I have to go to the lab and it costs $110! Not sure if it is covered by my extended health.

Hope weekly Humira works as if it doesn't I don't know what the next step is :(
 
Is the immunosuppressant only added if Humira is not working? Or are they supposed to be given together. My doc only mentioned getting off the Pentasa if I'm doing well ( after my pred wean) on Humira.
 
LodgeLady said:
Is the immunosuppressant only added if Humira is not working? Or are they supposed to be given together. My doc only mentioned getting off the Pentasa if I'm doing well ( after my pred wean) on Humira.
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My GI and Rheumatologist both told me that I have to take methotrexate with the Humira so that I don't develop antibodies to the Humira. I started on Methotrexate alone for almost one year and then the Humira was added 10 months ago. I did decrease the Methotrexate when I started Humira though.

I have been on Salofalk (like Pentasa) for 20 years. I was also told that I could stop it once I was on Metho and then again when I started Humira but so far I have not been able to even decrease it, let alone stop it. Maybe when i"m on weekly Humira I will?? Hopefully you have more luck! :)
 
I have been a member of this site since July, but just got back on it and am I glad I did. I just started Humira October 29th, and have felt like I have no one to talk to. Starting Humira was scary for me since I prefer to try homeopathic versus putting synthetics into my body. However, I will say that once my GI doc talked me into it, it has started to work. I feel better, not 100% yet but more than 2 days can go by and I am not in bed. Some symptoms are still present, but I can live with them.

One question I have, after starting Humira is it normal for joint pain to increase? I have noticed that my back, ankle, elbow, and finger joints started burning, and it feels like I almost feel them swelling. Weird.
 
Sandi Creek said:
I have been a member of this site since July, but just got back on it and am I glad I did. I just started Humira October 29th, and have felt like I have no one to talk to. Starting Humira was scary for me since I prefer to try homeopathic versus putting synthetics into my body. However, I will say that once my GI doc talked me into it, it has started to work. I feel better, not 100% yet but more than 2 days can go by and I am not in bed. Some symptoms are still present, but I can live with them.

One question I have, after starting Humira is it normal for joint pain to increase? I have noticed that my back, ankle, elbow, and finger joints started burning, and it feels like I almost feel them swelling. Weird.
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Sandi-

Yes that is normal, plus the tiredness and the possible skin breaking out, if that skin issues happen then go to CVS and get "hibiclens" it works wonders.
Its imperative that you give Humira at least 6 months to run its course in order to properly grade its effectiveness. I went through hell getting used to it. Over 1 year later, I'm thankfull I stuck with it.
 
Thank you Scaryman, that helps a lot.
I have been off work for 3 years now and would like to get back to work outside of the house. I have been in what I like to call my sporadic flare/remission. Since 2007 when I was dx, I would be fine for a few months, then sick for a few months, fine for a few weeks, sick a few weeks (you get the picture.)

Started 6mp in Feb 2013 along with prednisone for flare, the next flare is when I started the Humira.
 
Sandi Creek said:
Thank you Scaryman, that helps a lot.
I have been off work for 3 years now and would like to get back to work outside of the house. I have been in what I like to call my sporadic flare/remission. Since 2007 when I was dx, I would be fine for a few months, then sick for a few months, fine for a few weeks, sick a few weeks (you get the picture.)

Started 6mp in Feb 2013 along with prednisone for flare, the next flare is when I started the Humira.
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Just do yourself a favor, as your doctor about Mtx (methotrexate) to use with humira. Makes it 30% stronger handling your bodies anti-bodies against Humira. I'd do it even with the warning on the drug, like I am currently. It gives you more bang for each Humira dose. However, it is another immune suppressant.
 
Other than the drug not working, how do you know if your body is producing anti-bodies? How soon would one produce anti-bodies after starting Humira? Everything I am reading on methotrexate suggests it's to use for arthritis.
 
Hi everyone. I am waiting for everything to get ironed out between my insurance and the specialty pharmacy, but should be starting humira any day now. I am really nervous about side effects after my loading doses. Any advice/experiences anyone wants to share with this newbie?
 
LodgeLady said:
Other than the drug not working, how do you know if your body is producing anti-bodies? How soon would one produce anti-bodies after starting Humira? Everything I am reading on methotrexate suggests it's to use for arthritis.
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MTX is used for crohns as well. It's properties reduce antibodies. The human defense system, will reduce humira's effectiveness.
 
kateel said:
Hi everyone. I am waiting for everything to get ironed out between my insurance and the specialty pharmacy, but should be starting humira any day now. I am really nervous about side effects after my loading doses. Any advice/experiences anyone wants to share with this newbie?
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I'd be prepared for tiredness, joint pain and skin breaking out. These are extremes I would read the black label on humira but these are just the extremes. It is the cleanest drug out there biologic wise in my opinion. I wouldn't worry. Look I am extremely hyper sensitive and went through it and don't look back. Remember to commit to giving humira at least 6 months to grade proper effectiveness with it. Yes it's a powerful drug that may pack a punch, but you have to ask yourself you want to do the Crohn's flare and or inflammation and scaring of the intestines thus leading to resection or a not serious drug reaction. That's a question only you can answer.
 
Thanks again for the suggestions. I emailed my doc today, last night I started to get a sore throat and coughing like crazy. Both throat and chest burn, feel as if the cold is really hitting the lungs pretty hard. If I don't hear back from them today, I will go to urgent care for a lung x-ray. I am supposed to be going out of town this weekend and do not want to start on the road sick.
 
Hi everyone,
I was diagnosed with Crohn's in '99 when I was 20. I had two resection surgeries shortly thereafter. My surgeon left an inflamed area alone that he removed about 13 mos. after the first surgery. After the surgeries, I was pretty much symptom free for about 13 years. I'd have a "flare" very very rarely that would only last a few hours. Lots of severe cramping that would eventually subside. Usually because I ate something I shouldn't have.
Anyway, I became complacent and in my mind I was "cured". I usually was able to eat whatever I wanted. For a long time Crohn's was the farthest thing from my mind.
This September, however, I had one of the worst episodes I'd experienced. It landed me in the hospital for a night. Ct scan showed some narrowing at my resection sites, but like before pain and symptoms gone after giving my systems time to rest. Went on a small regimen of prednisone (1st time) and soon felt back to normal.
Well, here I am now writing this from another hospital bed. Thanksgiving was awful. Had a few mild bouts on turkey day and the days after the last of which was really bad and lasted for more than 24 hours (severe cramping, and vomiting). I had a colonoscopy, which gave evidence of more disease at my resection sites.
So, after all that I'll finally get to my point. I'm uneducated on Humira, and only see the severe side effects (which after more of my own investigation realize they rarely occur). I told my gastro, who's great by the way, my feelings and he suggested Imuran. (Even though he and his PA's all said if they were in my situation they'd go with Humira.) Anyway, I've read many of the posts here and now I'm not sure what to do. I've read that Imuran isn't really a great alternative, as it can have similar side affects. I refused it when they brought it to my room from the hospital pharmacy. I'm very interested in what you all think.
Thanks for reading!
 
Hey Minickjr52,
I know exactly what you are going through. Well, maybe not exactly but dang close. The last time i was hospitalized i told the intake nurse that i had been diagnosed with Crohns disease but i didnt think i actually had it! Just a few hours later i had collapsed on the floor from sepsis shock. My intestines were so mangled that i had an intestinal hernia perforate the wall of my intestine! I was completely septic and for lack of a better word.. Dead. Thanks to the unbelievable efforts of several nurses all taking turns giving me what my surgeon said was and i quote "the best CPR i have ever seen" i pulled through. (Obviously! LOL) but i learned a very important lesson... there is a reason my friends don't call me Dr Green! I didnt go to med school. The team of doctors i surround myself with now DID! And although i make sure to ask tons of questions until i understand every bit of anything that is going into my body, i do trust their recommendations. I have been on Humira for about a year and a half. Although my case may differ from yours i have found Humira to be one of the easier medications in terms of side effects. Remicade was disasterous for me! i was rushed to the ER with Heart attack like symptoms that didnt subside for over 2 hours. Very scary! But i hear reactions to Remicade are common. I choose to think about it this way... they have to warn you of every possible side effect a drug could possible have on a person...and yes its kinds scary to read just how many there possibly are... but this does not mean that they will happen or even that it commonly occurs. It is nothing more than a drug company trying to avoid law suits by claiming that we were fair warned of the worst case scenario, should something happen. For me the only negative would be the bone and joint pain i get right around the time im due for an injection. But i have always battled Juvenile Rheumatoid Arthritis on top of everything else, so i dont really know where to draw the line.. is it the JRA acting up or does it have something to do with the medication? Either way, when i consider the other option, which is not to take anything and risk loosing what little bit of working intestine i have left (72cm to be exact) Humira's possible side effects dont seem so big and bad after all. Dont be afraid to ask a thousand questions and make sure you understand the doctors answers. There is no shame in being a well informed patient before agreeing to go on a new medication. Do some research, ask around, and make your choice only when you feel comfortable in your decision. Good luck.. hope you get to feeling better soon :) prayers are with you.
 
I've been on Humira nearly 4 years. I was very leery of it at first but I actually feel better on it. Unfortunatley, I *think* I'm flaring now. I just had a special (new) blood test done that tests whether I've built up any antibodies to the Humira and I haven't, which is good. Off to get a colonoscopy done before the end of the year now to determine why I'm having so much pain. Minickjr52.... Humira (or any drug like it) is a scary venture. All you can do is research and weigh your options. Since you've already had surgery, I think you are at a higher risk of having more surgery (only my opinion), so you'll need to take that into consideration. I've found it to be beneficial and my son (21 yrs old) is also on it after being dx with a severe case of CD last year. I hate it that my young son is on such a medication, but it's either that or he could lose his colon completely. Good luck!
 
Just remember to consider in case you didn't know. When you have surgical resection, this lovely non linear disease COMES BACK.
 
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?
 
Scaryman said:
Just remember to consider in case you didn't know. When you have surgical resection, this lovely non linear disease COMES BACK.
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Scaryman. That is a scary statement. I don't know that I've ever had Crohns symptoms. What I had for a few years was diarrhea while I was taking GERD medicine for 7 years .....they said my vitamin etc levels were low so I weaned myself off it. Suffered severe constipation for a number of years. Then started having bowel blockage like symptoms ending up with a real one thus the resection. No symptoms since. Everything prior to those years fell into irritable bowel diagnoses....crampy responses to "roughage" and stress from time to time. Hope it stays away because I don't know that I will ever opt for the scary medicines. There are a lot of people having luck with the diets and I would resort to that first I think. But never say never...
 
Scaryman said:
MTX is used for crohns as well. It's properties reduce antibodies. The human defense system, will reduce humira's effectiveness.
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It seems that you can develop immunity towards Humira...what's to take after that? Although some docs take a hard hitting approach to Crohns up front, I'm always wondering what happens when it ceases to work. My thoughts are save the heavy hitter for the years when I need it -- which are not now with no Crohns symptoms and a few joint pains that are annoying. Any feedback on that?
 
I understand your logic and have thought about this as well. My Doc is taking a top down hard hit approach. However I have been suffering a long time not mild symptoms. He did not want to start with the other drugs as they can take 3-6 months to start working. I was also prednisone dependent. I really don't know the answer. I'm putting it all in God's hands.
 
I wonder then does it go like this? You take the heavy hitter and you begin to taper off....? It's been my experience that bad things happen when you taper off as in my case with entacort and I developed arthritis. I think there is an important component missing in this process ...like the elephant in the room.....that should be seen, but is still not seen. One day, I'm hoping some really astute scientist will see the elephant. It appears that all our troubles would be resolved if we could fix what's scaring the immune system. For instance, the patient has chronic cough and is not responding to antibiotics and cough medicine....why is the patient constantly coughing? Perhaps we should open her up and take a look. OH wait! It could be the cat litter dust sitting behind her in the next room. (i.e., The Elephant) I'm hoping maybe one day with DNA technology - they can alter the illness causing genes and all these things will go away. :)

I hope you continue to improve with the medication! Wish you the best!
 
I definitely do not want any parts of Methotrexate. I'm going Humira is all I need. Biological ok but not methotrexate. I don't even want to try 6MP
 
mish2575 said:
I've been on it for a couple years. . . no news is good news, right?
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Have you had any issues -- infections? I know nothing about it only that it depresses your immune system and some different side effects. What happens when you catch a cold? Or the flu?
 
Sparkle2012 said:
Have you had any issues -- infections? I know nothing about it only that it depresses your immune system and some different side effects. What happens when you catch a cold? Or the flu?
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I did catch a cold right at the same time I started my 4 shot starter kit. The cold was not due to the Humira. However it took two weeks to get over along with Xopenex nebulizer treatments and an antibiotic all to treat bronchitis/ asthma. Now this just could be me but I have not had a cold get me that sick in a long time.
 
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.
 
Sparkle2012, My docs told me not to go off of the Humira, even if I had a cold or flu. However, they did also say that if it lasted for a bit or got severe, then to come and see them as they have a better idea of how to treat you and your detailed history than a general practitioner would.

Oddly enough, I have gotten less frequent colds and and no flus at all since starting on Humira around a year ago, but it could also be that I quit smoking at the same time and started eating better....so in general took better care of myself....partly because I was scared that I would take longer to heal and because my Crohn's had gotten worse and I had to do something to take control!

Always talk to your doc before deciding to not take the meds, they will better be able to judge if you should or not.
 
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?
 
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.


Sent from my iPhone using Tapatalk
 
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.
 
Very frustrated with my doctor right now. I have had bronchitis since last Monday (12/2), I was given an inhaler. A week later and the bronchitis is not getting any better and I was supposed to take my Humira injection tomorrow, but the GI doc is saying not to since it is a immuno-suppressant. I get that I shouldn't take humira if I have certain other symptoms, but it is so frustrating that I am unable to take anything else to help me get over bronchitis (other than the inhaler that is not doing its job), but I really feel like I am just dangling by my doctors puppet strings. I do not want to go back into another flare up (just starting to come out of this last one with humira.) I am ready to fire this doctor and find me a new one.

Thanks for listening to me vent.
 
Sandi Creek said:
Very frustrated with my doctor right now. I have had bronchitis since last Monday (12/2), I was given an inhaler. A week later and the bronchitis is not getting any better and I was supposed to take my Humira injection tomorrow, but the GI doc is saying not to since it is a immuno-suppressant. I get that I shouldn't take humira if I have certain other symptoms, but it is so frustrating that I am unable to take anything else to help me get over bronchitis (other than the inhaler that is not doing its job), but I really feel like I am just dangling by my doctors puppet strings. I do not want to go back into another flare up (just starting to come out of this last one with humira.) I am ready to fire this doctor and find me a new one.

Thanks for listening to me vent.
Click to expand...

How far a drive is it from you to Chicago?
 
Scaryman; About 3 hours, a little more than I am willing to drive. Madison/Milwaukee would be a better fit for me.

how did you get my message in your reply to me?
 
Sparkle2012 said:
Have you had any issues -- infections? I know nothing about it only that it depresses your immune system and some different side effects. What happens when you catch a cold? Or the flu?
Click to expand...

I'm certain that it actually helps me by depressing my immune system. Cold symptoms are due to your body fighting the bugs. I think my body (due to humira) doesnt fight as much. I seem to get the colds much less severely than anyone else I know. I've never had a serious infection or any reaction to Humira.

Unfortunately it is not helping my fistulas or hidradenitis (its supposed to help both) so I may ask for the next bilogic during my next GI visit.
 
Sparkle2012 said:
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.
Click to expand...

you can't go off it and back on multiple times. it allows your body to build up immunities to the drug. :(
 
ey218 said:
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.
Click to expand...

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.
 
DougUte said:
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?
Click to expand...

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.
 
Aura said:
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.


Sent from my iPhone using Tapatalk
Click to expand...

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


Sent from my iPhone using Tapatalk
 
ey218 said:
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.
Click to expand...

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.
 
mish2575 said:
you can't go off it and back on multiple times. it allows your body to build up immunities to the drug. :(
Click to expand...

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!!!
 
Sparkle2012 said:
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.
Click to expand...

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
 
LodgeLady said:
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!!!
Click to expand...

Wow. Thats 100X what my doctors do. What is subclass immunodeficiency?
 
mish2575 said:
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.
Click to expand...

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.
 
Sparkle2012 said:
In fact why are you seeing a allergist/immunologist? I never heard of that. Maybe I need one too!
Click to expand...

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.
 
LodgeLady said:
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.
Click to expand...

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!
 
Stardust_Fiddle said:
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!
Click to expand...

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!!!
 
LodgeLady said:
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!!!
Click to expand...

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?
 
LodgeLady said:
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?
Click to expand...

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! ;)
 
LodgeLady said:
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.
Click to expand...

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.
 
DougUte said:
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?
Click to expand...

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.
 
ey218 said:
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.
Click to expand...

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.
 

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