Humira Club Support Group

Crohn's Disease Forum

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That's good!

I figure as long as I feel this way, I should be able to
have a little fantasy in my life. Reality makes me tired right now!

Lauren
 
Aura said:
I'll raise you Doug, asthma, diabetics, arthritis spine and hip, reflux disease, endometriosis, over active bladder, polycyistic ovaries syndrome oh and crohns :)
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I left off my Essential Tremor. But even with that I think my Humira buddy has me beat.
 
Hello
I am new to the group and I am suppose to start humira next week. I am really freaked out by all the possible side effect. I am also on 20mg prednisone and 25 mg of 6mp which will be increased to 125mg.
 
Hi EPD, and everyone else freaking out about possible side effects. Don't talk yourselves into being anxious. Yes, there are many a terrible thing that can happen because you have taken a certain medication, but the odds are very much in your favor that everything will be just fine. Everyone worries, that is normal. I worried a lot too. Nothing good comes from it. Get informed and do your research, just don't let it make you stress too much, you already have enough on your mind. A positive attitude will help you so much more than being anxious and stressed. You're gonna make it through this.

That being said, I joined to Humira club yesterday. I took the meds out of the fridge 30 minutes before the time to inject and I didn't pinch the fat too tightly either. It all went well. It stung slightly as the medicine was injected but I have had allergy shots and prednisone shots hurt much worse.

FWIW, the nurse said to NOT ice the area before injection stating that you may be slightly numbing the area where the needle will be going in and helping to lessen the pain slightly, but you are also slowing the blood flow to the area and therefor making it more difficult for the medicine to be absorbed, leading to more stinging pain. I didn't use the ice and the shot sting/medicine sting wasn't bad...3 seconds at most.

I haven't had any reactions so far, thankfully. Good luck everyone!
 
^ definitely found it much more tolerable without icing first.

I'm switching to the syringes with my new prescription next month, pretty excited for that.

Had a colonoscopy a couple of weeks ago and although there are still patches of severe inflammation, I'm feeling much better than when I started on Humira a few years ago.
I've just reached my goal weight of 60kg which I never thought would happen (was about 48kg and thought I'd be lucky to get to 55kg when I started). :)
 
I vote for one disease per person
I would settle for two at this point
DS has six specialists at this point .
I used to think one was alot .
 
Dear Humira Club Support Group, You may like to know the latest about AbbVie, the maker of Humira refusing to release their clinical trial data. Please take a look at this story: http://bit.ly/12Azwrr. People are encouraged to visit rxisk.org to report side effects.
 
This video is new to youtube. It outlines one patient's fight against the side effects of Humira. http://bit.ly/1aIypLx

It might be a good idea to discuss with a physician an exit plan for the drug as well as how to treat possible infections.
 
OMG kss!

Wish I hadn't watched those videos! No, I can't say that because informed consent is always the best consent, but it scared the &^$% out of me!

I did a LOT of research before starting to take the drug. Read all the possible side effects. I'm very familiar with reading drug side effects in nursing, but seeing it on a video really brings it home.

Been on it for about 8 weeks now and think I will continue since so far very few side effects. But really, thanks for bringing this to the folks here!
 
Traumanurse, You're very very welcome! I was Remicade for years without major issues. And I had no idea of how serious the drug really was. The lack of informed consent makes me angry. You have a right to know. You have a right to see all that data that AbbVie has collected!

The founder of rxisk.org (Dr. David Healy) is ambitious with the campaign so if you have any ideas about spreading the word please let me know. I figured the Humira Support group where would be a good place to start.

Best of luck with your treatment! If you need to report side effects it looks like Rxisk is doing an excellent job of maintaining an archive: http://bit.ly/18jUeQC
 
I'm getting ready to take the last 2 injection of my loading dose!! Today is day 12 of the 1st 4 injections. The only thing that I have noticed is that the number of times I go to the bathroom in a day I still go about 13 times but that is half of what I use to. Still have the cramping and the pain in the joints today no appetite and tired and bright yellow stools is that normal?????
 
unfortunately the side effects shown in the you Tube video can also happen with ANY drug- IT is called Serum sickness for a reason
Serum sickness

Last reviewed: May 30, 2012.

Serum sickness is a reaction that is similar to an allergy. The immune system reacts to medications that contain injected proteins used to treat immune conditions. Or it can react to antiserum, the liquid part of blood that contains antibodies given to a person to help protect them against germs or poisonous substances.
See also: Immune response

Causes, incidence, and risk factors

Plasma is the clear fluid portion of blood. It does not contain blood cells. However, it does contain many proteins, including antibodies, which are formed as part of the immune response to protect against infection.

Antiserum is produced from the plasma of a person or animal that has immunity against an infection or poisonous substance. Antiserum may be used to protect a person who has been exposed to a germ he or she has not been vaccinated again.

For example, you may receive a certain type of antiserum injection if you have been exposed to tetanus or rabies. This is called passive immunization. It gives you immediate, but temporary, protection while your body develops an active immune response against the toxin or germ.

During serum sickness, the immune system falsely identifies a protein in antiserum as a potentially harmful substance (antigen). The result is an immune system response that attacks the antiserum. Immune system elements and the antiserum combine to form immune complexes, which cause the inflammation and other symptoms of serum sickness.

Certain medications (such as penicillin, cefaclor, and sulfa) can cause a similar reaction. Unlike other drug allergies, which occur very soon after receiving the medication, serum sickness develops 7 - 21 days after the first exposure to a medication.

Injected proteins such as antithymocyte globulin (used to treat organ transplant rejection) and rituximab (used to treat immune disorders and cancers) can cause serum sickness reactions.

Blood products may also cause serum sickness.
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from:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001823/

it can happen from allergy shots, abx etc...not just TNF-Alpha blockers.

IT is good to be informed but also to know the complete facts

Ds had a mild version to remicade with skin peeling and rashes, blisters and later allergic reaction to remicade during actual infusions.
 
Hi all my fellow Crohnie's. I am new to the site and started Humira on Friday. Four injections (not as bad as I thought it would be) in the stomach. So far so good, no immediate side effects and the med started working over night. I have been sleeping through the night for the first time in years, no more waking up 5 times to run to the toilet. I was scared to start the drug but the oral meds no longer work for me after 22 years so this was my final resort and I am pleasantly surprised after all the horror stories I heard about the side effects. I do believe this is the solution for me.:)
 
I was on inflixamab for 4 years and needed no other medication . i became convinced i must not have crohns or was in remission so after considerable thought and my consultant refusing to advise either way i came off the drug in June 2012. By NOv 2012 i had full blown Crohns symptoms again , i had forgotton had bad it was ..! Its taken me until May to get back on meds .. i was fearful of reactions but have now been on Humira since June and so far so good , just a few side effects , tolerable .. And injecting is nothing like as bad as i had thought it would be . So i just want to say stay positive ...
 
Hi everyone:) I am new here and I have a couple of question that maybe you can answer. I have crohns for about three years and I am finally starting on humira, since nothing else seemed to help. Since I have had crohns I can't put on any weight. I am usually at 125 pounds and I am now weighing 113 pounds, my question is after you started humira where you able to gain weigh again and if it helps with diarrhea? Sorry this is so long.
 
Hi Everyone!!
Last night I took the last 2 shots from the Starter pack. Today I'm so tired muscles aches and dizzy a little headache is this normal I didn't have it when I took the 1st 4 shots!!

Also yesterday 22 trips to the bathroom today 1 and it was semi normal which is scary lol!!!!

Is this normal??

Thanks
 
Lisa - A lot of people mention fatigue and muscle aches after taking a dose of Humira. I get migraines, which I have attributed to the Humira, although they come at random, not in any connection to when I have a shot. Sometimes I have a little fatigue, but in my case I think it's just annoyance at having to take an injection :p Anyway, what you describe doesn't sound unusual, but make sure you keep an eye on it, and when in doubt make a call. I know Humira has an 800 number, I think 24/7, you can call with questions or concerns.
 
Thanks I went to my family dr today and she said that these were common side effects or it could even be part of the Crohn's I did call the GI today and he didn't seem to alarmed about it. i just wish that I had more good days then bad.
 
lblair said:
Thanks I went to my family dr today and she said that these were common side effects or it could even be part of the Crohn's I did call the GI today and he didn't seem to alarmed about it. i just wish that I had more good days then bad.
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Don't be impatient with it. For some people Humira is an overnight miracle, with others it takes time to start working. We are all different, remember?

With me it took 8 weeks before I noticed any improvement (sleeping thru the night most nights, instead of being awake and in pain), and now, 9 months in, it's like a miracle.
Back at work again (part time), still on a restricted diet, but slowly expanding the list of "normal" foods that I can eat again, very little pain and fairly normal bm's.
If I'd given up on Humira after 6 weeks, I wouldn't have experienced this transformation.

So hang in there, keep taking your shots, give it a fair trial, and hopefully it will work for you as it has for so many others.

Gra

2
 
lblair said:
Hi Everyone!!
Last night I took the last 2 shots from the Starter pack. Today I'm so tired muscles aches and dizzy a little headache is this normal I didn't have it when I took the 1st 4 shots!!

Also yesterday 22 trips to the bathroom today 1 and it was semi normal which is scary lol!!!!

Is this normal??

Thanks
Click to expand...

Loss of people have headaches, tiredness and altered bm's soon after starting Humira. As your body becomes accustomed to it these should settle down. The tiredness is particularly common, lots of people get that, I had it too, as well as increased bm's for a while. You'll also notice that some injections hurt more than others, make sure you leave the pen at room temperature for 30 mins before use, and ice the area that you are going to inject for 1 to 2 mins prior to injecting. Remember that even if it hurts, the pain usually fades very quickly.

Gra

2
 
Alexmom said:
Hi everyone:) I am new here and I have a couple of question that maybe you can answer. I have crohns for about three years and I am finally starting on humira, since nothing else seemed to help. Since I have had crohns I can't put on any weight. I am usually at 125 pounds and I am now weighing 113 pounds, my question is after you started humira where you able to gain weigh again and if it helps with diarrhea? Sorry this is so long.
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Alexmom, it's typical that people lose weight, and find it hard to pt back on again. Humira can help by stopping the inflammation in your gut, which will enable you to eat better, but if you have a stricture (like me), it will possibly eventually require surgery

2
 
lblair said:
Thanks I went to my family dr today and she said that these were common side effects or it could even be part of the Crohn's I did call the GI today and he didn't seem to alarmed about it. i just wish that I had more good days then bad.
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The aches can definitely be Crohn's-related. I get joint aches somewhat frequently. I've attributed them to the Crohns, though, because they come and go with no connection to the Humira injections, and started before I went on Humira.
 
Alexmom said:
Hi everyone:) I am new here and I have a couple of question that maybe you can answer. I have crohns for about three years and I am finally starting on humira, since nothing else seemed to help. Since I have had crohns I can't put on any weight. I am usually at 125 pounds and I am now weighing 113 pounds, my question is after you started humira where you able to gain weigh again and if it helps with diarrhea? Sorry this is so long.
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HI, I was diagnosed in 1989 at the age of 17. Treatment for crohns has come a long way during this time. I have had a sub total colectomy and a foot of the small bowel removed. I have struggled with being vastly under weight for years. I was put on Humira last September, I am now a perfect weight and feel much healthier although I am currently flared, but I will fight it off.:smile: get well soon.xxx
 
This last Wednesday makes it two months since I became a Humi! Seems to be going pretty well so far! My stomach has not hurt at all this month, and I have noticed an increase in my appetite! over all this is making me pretty happy because I think it will be a good match- and hopefully I will stay in remission! (I have a history of having a flare every two years like clockwork...)
Hope everyone is doing ok!
 
I'm in my third week on Humira. It started working overnight for me. My greater issue was arthritis but it also quelled issues in my gut related to Crohns. The only side effect I have experienced is fatigue. I'll take that in exchange for the pain free existence I have been afforded by Humira. The fatigue has not stopped me from running a law practice, running or biking each day or otherwise enjoying life.
 
I have good days and bad days last 2 days have been bad I just took the the last loading dose of Humira I'm not on predsione anymore I didn't see any changes when I was on it and didn't like the side effects!!!! I pray that Humira will work for me I would like more good days then bad I think that we all would and bless the ones that are in remission!!
Have a good day!!!!!!!
 
Note to self (and anyone who hasn't tried it yet): a little bit toward the outside (instead of right on top) of right thigh was almost pain-free. I tried there today because it seemed to be soft/fatty, and not very sensitive. I think that's where I'm going to stab from now on.
 
3 months now and still waiting to see SOME kind of results from Humira. I'm told it could take up to 6 months, so I'm not giving up!

I get so jealous reading the posts that say it worked right away. I'm glad for you guys, I just want to join that club!
 
I haven't read any of these posts yet. Just starting my first dose of humira tomorrow so will be reading some posts to get an idea what to expect. I'm just hoping I don't get a severe allergic reaction like I did with remicade.
 
lblair said:
I have good days and bad days last 2 days have been bad I just took the the last loading dose of Humira I'm not on predsione anymore I didn't see any changes when I was on it and didn't like the side effects!!!! I pray that Humira will work for me I would like more good days then bad I think that we all would and bless the ones that are in remission!!
Have a good day!!!!!!!
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I hope it works for you and soon.


2
 
lblair said:
Hi Everyone!!
Last night I took the last 2 shots from the Starter pack. Today I'm so tired muscles aches and dizzy a little headache is this normal I didn't have it when I took the 1st 4 shots!!

Also yesterday 22 trips to the bathroom today 1 and it was semi normal which is scary lol!!!!

Is this normal??

Thanks
Click to expand...

It can take a while to start working for you. Don't give up on it :))


2
 
I agree don't give up on it, I took three months to start working and it has significantly reduced my ulcers in small bowel
 
I guess I would say relief is relative if you know what I mean.

My strictures are now gone after surgery, so the pain is definitely better. The D is still a problem most of the time with bleeding. I've been able to gain almost 5 pounds over the last 6 weeks since surgery, so I must be a bit better.

I've now developed another eye problem that I am assuming is an extra intestinal symptom from what I hear.

The best part is that I am able to work again most days full time.

I guess I shouldn't gritch. Maybe this is the new "normal" for me. We will see. I'm not giving up on Humira until I've tried it for 6 months though. Some of the posts here say it can take that long.

Thanks for the encouragement though you guys, I really appreciate it!
 
I would log how you are doing so your GI can see it in black and white. Mine finally changed my dosage to weekly after week 10 so starting with week 11. Many others here are also on weekly dosing too. Sometimes every 2 isn't enough. If you can see a pattern in symptoms to dosing it helps.

hugs
 
Rash is listed as an possible allergic reaction. Some have mentioned taking an antihistamine when a mild rash was the only reaction they had but they always spoke with their doctor (from what I remember reading). Definitely want to make sure it doesn't become anything more serious. Good move on putting in the call.
 
Hi all. Today I am not a happy chappy :(. I have picked up the flu and I am far from pleased. Gathering it is a result of humira and how it effects the immune system or am I wrong. Everything else is on track and take my second loading dose on Friday. Can I take it with the flu or must I rather wait.
 
Shantelle, I've read posts where some GI's had them go ahead and some where they had them wait. So your GI will probably base it on your situation and symptoms. It's no fun getting something on top of everything else. :(
 
Good Evening

So I talked to my GI today and he said the rash is normal he is not concerned! I also told him that I have been keeping a daily log on how many times I go to the bathroom he laughed he said that he usually talks to his patients at the 2 month check up. I said that I have been reading on the message board and thought it would be a good idea.

I told him the patterns I was seeing and he increased my Humira to weekly gosh I hope this helps!!! Also told him about the body aches and I'm so tired he said that is all part of the Crohn's and everybody has different symptoms!!

I'm wondering if I should take a shot as soon as my meds come on fri or wait till tues and then go every tues??? He said it didn't matter. Also when do you totally know that you are in remission???


Have a good night
 
my son was given 2 options, surgery or humira. we are wondering which way to go. he has 'atypical' symptons for crohns i understand. He throws up constantly, no diarrheah. the crohns is right below is stomach. we are happy there are options, just scared of both of them.
p.s. hopefully noone gets mad that i posted but don't have crohns myself.
 
Hi beaches. :welcome:

No worries about a non Crohnies posting on the forum. There is a parents forum you might want to check out. http://www.crohnsforum.com/forumdisplay.php?f=49

I wish I had the opportunity to pick Humira before I had my surgery. Personally, I would have picked Humira first. Humira is a good med. I have been on it for two years and I have been in remission for most of that time. You only have a limited amount of bowel, and the small bowel absorbs the nutrients. If too much is removed you can't survive. I would do Humira first if I had the option, which I didn't.

Good luck. Please stick around the forum. There its support for both the Crohnies and caregivers here.
 
the surgery being suggested is a bypass not removal due to the location, duodenum. But i hear so much about creating problems with scar tissue. And my other son had a resection of his colon and it perforated and he ended up with a colostomy for 6 months. I also have read as you note, priority is to preserve what we have.
Other option, Humira is just such a scary drug.
I know we are fortunate to have options, they are just both very scary options.
 
Hi beaches, here's my opinion. He should go for humira. From my experience, unfortunately, for me it was to late to have the choice, and I'm just getting better 4 months after an emergency surgery. I even got a remicade infusion prior to surgery, but it was to late for it to work in time. I then developed an allergic reaction to remicade as there was to much time between infusions. Just got my first humira injection a few days ago, and I'm thinking its already working. I had inflammation and pain for the last few weeks, and I don't have anymore pain, I just feel a bit fatigued.
Avoid surgery as much as possible. Have you spoken to the surgeon? A lot of them (the good ones) will advise you not to get it unless absolutely necessary.
How old is your son? What does he think? If he's old enough to understand the 2 options I guess. Best of luck to both of you. I can't imagine how hard it must be for you to make that decision for your son. Hugs! Just follow your instinct, mom always knows best ;)
 
My two cents
humira
my son has crohn's in his duo as well as other areas
if its inflamed lots of vomiting

good luck with your choice
 
ml penguin, did the humira help your son? my son has been on prendisone for the inflamation but not working well now. combination i understnad of inflamation and scar tissue. the operation is supposed to bypass the part that is bad. said it will give him relief as the food should follow the path of least resistance, in this case the bypass.
 
I think it's worth trying the Humira. In either case, it won't fix things instantly...recovery time from surgery, or time for the Humira to start working. If the Humira doesn't help, surgery still remains an option.
In my case, which is Crohn's colitis (my entire large intestine was severely inflamed) the doctors were hoping to avoid surgery (although it may have been a full colectomy). Prednisone wasn't helping a whole lot on its own, but they started me on Remicade, and I started to improve the next day--if I remember right, they discharged me just a couple of days after the Remicade. Ultimately, the Remicade was wearing off too fast, which lead to switching to the much more convenient Humira.

I haven't really gone into remission, but with some attention to what I eat and taking some extra supplements, I pretty much live normally. Worst Humira-related problem I've had is occasional migraines, but I have medication for that, too.

Given the severity of my condition when I went to the hospital, it's likely I'll need surgery eventually, but it's at least delayed, and hopefully by then procedures and technology will be improved--who knows, we might even have artificial organs by then!
 
my dr increased mine to every week took a shot yesterday i'm tired and my body aches today and a little stomach cramps but only one trip to the bathroom and it was normal!!!! So I had my 4 shots July 7 then 2 15 days later and then one yesterday tuesday would have been 2 weeks seems like I have a couple good days after the shot then down hill from there so I'm hoping this works!!
 
Hi Folks. I took my second dose of Humira last Friday. Thus far, I have noticed it gives me migraines, makes me tired, makes my legs feel weak (from what I read here, that's normal), but yesterday I awoke with a rash all over my back. I also had severe cramps the day before I got the rash and I just tried to rest until it went away, but when I woke up with pain in my abdomen, pain from the rash, and pain from a migraine I called my GI and wound up in the ER. He was concerned I had a blockage. CT scan was normal so I was given pain meds and sent home. Nobody seemed concerned about the rash and the doc said severe cramps are unfortunately a part of Crohn's. So far, the Humira doesn't seem to be working but it is early in the process.

I heard Crohn's can be painful but had no idea it could bring me to my knees like that!
 
The cramps can be a real bugger mine also send the pain thru to my left shoulder tip, man they hurt. I take tramal for them for the pain. It takes the edge off. If I'm constipated the cramps are more intense so I got to make sure I never get constipated. I'm a chronnie with functional constipation. Humira took about three months to work well for me. Keep an eye on the rash and keep your gi posted on it.
 
Thanks Aura for your response; I hope to see my GI sometime Monday since neither the rash nor the cramps are getting any better. My older sister had surgery for Crohn's over twenty years ago and she is also a mother so when she explained that the cramps can be as bad as labor pains I guess I should believe her. The rash is now all over my back and mostly "red and angry" where I have hair growing. I do not have a hairy back, just little patches that started growing after I turned 40. My wife rubbed cortisone cream all over my back and I took some Benadryl, and both helped, but it was very painful when she was touching my back. Also, my scalp hurts...meaning it hurts to comb my hair or run my fingers through it. Very weird.
 
tots said:
Has anyone ever been off Humira for being sick, with something
other than Crohns? If so how long ?


Thanks

Lauren
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I've been on Humara for three months and have had a constant upper respiratory infection the entire time, however I'm finally in remission from both the crohns and RA so I'm in the middle of deciding what to do. I see you live in Austin, i'm in Georgetown and there has been a booger of a cold making the rounds in my neighborhood.
Is there a local support group? thanks, Mary
 
justonlyjohn said:
Thanks Aura for your response; I hope to see my GI sometime Monday since neither the rash nor the cramps are getting any better. My older sister had surgery for Crohn's over twenty years ago and she is also a mother so when she explained that the cramps can be as bad as labor pains I guess I should believe her. The rash is now all over my back and mostly "red and angry" where I have hair growing. I do not have a hairy back, just little patches that started growing after I turned 40. My wife rubbed cortisone cream all over my back and I took some Benadryl, and both helped, but it was very painful when she was touching my back. Also, my scalp hurts...meaning it hurts to comb my hair or run my fingers through it. Very weird.
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Update: last night I awoke several times shivering like crazy. I was so cold and could do nothing to warm myself. This morning I have mild chills as well as a low grade fever. It feels like I have the flu. Neither the rash nor the cramps have improved. I am just going to rest and hope I can get in to see my GI tomorrow...I cannot afford another ER co-pay!
 
I have been on Humira for about 5 years and have recently been diagnosed with psoriasis. I know Humira is used to treat psoriasis but my GI is telling me it is most likely causing the psoriasis since it is such a new issue. Anybody else have this problem?
 
Hi John. Was just feeling bad for you after reading your posts, and wanted to check in with you. What did the GI say?

I was also thinking about my own symptoms when I read yours. I get the exact same problems when I'm having a really bad flare and it's not from the Humira, but from the disease. Any chance of that?

Good Luck and wishing you the best!
 
Hello Traumanurse. Thank you for your kind thoughts. I never got an appointment to see my GI but he called me Monday evening to see how I was doing. I was rather impressed by both the phone call and his line of questioning. He had received the report from the ER's CT scan which showed there exists more scar tissue in my lower intestine than there was before. He said he could take me off of the Humira if I wanted to do so, and move me to Remicade, but he would rather give the Humira more time to work. I actually agree with him, so I will stay on it for now.

I saw my Primary Care doc yesterday and he prescribed some lortab to get me through this spell, but he said he probably will not prescribe more since narcotics are bad for Crohn's apparently. He also instructed me to up my prednisone back up to 60mg/day for the next four days, then drop to 40mg/day for three days, and then return to 20mg/day as usual. Yay...moon face here I come!

Finally, I saw a dermatologist today and was told my rash all over my back is not a reaction to Humira, it is a reaction to taking prednisone. My rash has little pimples everywhere and he said Humira never causes pimples, but prednisone is famous for it, especially when dosages go from high to low. Since the prednisone is supposed to help stop the severe cramping, I guess I'll keep taking it and wear very soft t-shirts.

My GI did say that if cramps are still an issue after six months on Humira, we may have to start talking about surgery. I sure hope it works!

Thanks again for your concern and sharing that you sometimes feel the same...it makes me feel like I not so abnormal after all. I do wish you weren't going through it though.
 
Next month will be my two year anniversary on Humira!! *touch wood*

Life is good, I'm sometimes I forget I have Crohn's, which is awesome and worrying because if it comes back bad, I'll keep thinking of how awesome things are now and probably sink into near depression.

Quick question for long term Humirites. Does anyone notice that as time goes by, the injection (pens) are more painful? I used to just ice the area for the first year or so, inject, and be on my way.

Now, it can be really painful for a good 8-10 seconds when injecting and afterwards. Anyone the same ??
 
I'm not a longer termer yet, but I want to be :). I'm a year and 3 months. The pens hurt like a bee sting for 8 - 10 seconds each time, no matter what I do. Now I just reward myself with a treat after each jab :)
 
I have heard - not sure if it works
to place the syringe under your armpit- hold it there to warm it up to body temp - then inject-
going to try this one this next week.
 
Aura said:
I'm not a longer termer yet, but I want to be :). I'm a year and 3 months. The pens hurt like a bee sting for 8 - 10 seconds each time, no matter what I do. Now I just reward myself with a treat after each jab :)
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I play relaxing music and get in the zone with it.The more uptight I am the more the shot hurts.:ycool:
 
Do you long termers take Methotrexate or Imuran with the Humira? I'm on Humira 6 months now with Methotrexate (been on that for 16 months). The methotrexate causes a of fatigue so I want to stop it, or at least reduce it a lot. Currently on 15 mg per week. I'm interested to know if long termers need it to keep the Humira working.
 
So here I am having resisted for a long time taking Humira, but I have no choice now, I will be starting in 2 or 3 weeks from now.

I was wondering for those who take it, how long did you wait to see any improvement, I am in a bad flare right now and don't want to return on prednisone.
 
I'm on Humira and I cannot believe how well I am doing. I have been on it for a year and 5 months. In December 2012, I went to a pen each week. I was sick through March--down to 99 lbs, in massive pain, and facing another surgery. By the end of April, I was gaining weight and my chemistry numbers were improving. I no longer need procrit. My kidney function is the best it's been in years (my creatinine was 9 at one point) and my albumin is almost normal!! I haven't been on prednisone since March. I haven't needed fluids for hydration since March. Last week, I walked 3 miles in 85 degree weather with humidity. I drank lots of fluids and I was fine! For the first time in 10 years, I am overweight by 10 lbs and I am eating salads daily. I can at ice cream again (maybe too often).

I wish you well. I hope Humira will work for you and that it continues to work for me. Indeed, it took a long time for me.

My tip (learned from other on this board): i take the pen out of the refrigerator and let it sit for 30 mins. For 10-15 of those minutes, I ice my leg. When I inject the pen, it barely hurts and rarely bleeds. I am fortunate and thankful.
 
I wonder if any of you on Humira for prevention reasons. Based on the the colonoscopy I had last month, all looked normal, no inflammation and didn't have dilate, and everything healed well where I had the resection. I've had fistulas, still have one, but had it for years but it's not active and not in an area that bothers me. There is scar tissue and based on scans, they can tell I've had some that healed on their own that I didn't even know I ever had.
I just find it odd that I've been put on humira to prevent the formation of other fistulas as I've been just fine without meds for 11 years prior and I don't have any kind of symptoms now or before I started Humira.
 
SylvieA said:
I wonder if any of you on Humira for prevention reasons. Based on the the colonoscopy I had last month, all looked normal, no inflammation and didn't have dilate, and everything healed well where I had the resection. I've had fistulas, still have one, but had it for years but it's not active and not in an area that bothers me. There is scar tissue and based on scans, they can tell I've had some that healed on their own that I didn't even know I ever had.
I just find it odd that I've been put on humira to prevent the formation of other fistulas as I've been just fine without meds for 11 years prior and I don't have any kind of symptoms now or before I started Humira.
Click to expand...

If I were you I would ask for a second opinion.
Gra

2
 
Hi All,

It's been approximately 6 months since I started on the Humira. The prescription was for 6 months so they have renewed it for another 6. It worked well for me during most of that time. The shots are one every other week on Friday.

About two months ago I started to feel a little off on the day before a scheduled shot which progressed over time to several. Now I start to feel bad 5 days before a shot and the real pain begins 2 days before. After a shot (I do them in the morning before work) I begin to feel almost normal by lunch time. So the first week after a shot is good the second not so good.

I have an appointment with the Gastro Doc on 16 September...I'm really hoping I can wait that long!
 
Hi Tired,

To answer your question, I started to feel better in about a week after starting Humira (I thought at first it was a day or two but that was wishful thinking).

I've heard others took several weeks.

I hope it works quick for you.
 
Mike be sure and press the point or show a log of symptoms. Based on this they moved me to weekly.
 
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Hi All!
We are newbies to the site and to Humira. My son has been taking it for 5 weeks now and we are hopeful that it will help close a perianal fistula.
Is there anyone here that the Humira did close a fistula and how long did it take.
As a mom the watching and waiting of tis disease is killing me:ybatty:
 
Gmama, good luck to your son. I'm new to humira so can't say it worked for my fistula yet. Had the same one for over 11yrs, but its not bothersome unless I have diarrhea for more than a few days then reopens. Looking at his meds list, Flagyl and cipro never worked for me either for fistulas and didn't even work for abscess. Although, I'm on humira to prevent future ones to develope. But based on my track record, I don't respond well to any meds.

Just a quick question. How many of you have severe abdominal pain a few days after injection. I've just got woken up with severe pain, took 2mg of dilaudid and 500mg Tylenol, and didn't to much for pain. It's constant, with bouts of extreme pain. I'd rather be having labour pain right now. Doesn't happen every time. Last injection was fine and didn't even have any pain and didn't even feel tired.
I've cheated on my diet in last week and wonder if its related. But then again, it's not my first diet cheat and I'm usually fine.
 
I've been on Humira for 4 years now. I do think the shots sting more now than they did when I first started. Sometime the sting lasts a little longer. sometimes a get a little bruise. It does help a lot when I take the shot out of the frig 2-3 hours before administering it.
 
Claire617 said:
Heya, I honestly don't know why I didn't try joining a place like this sooner, had the most terrible time in 2009 with my crohn's nothings working and like really can get sucky at times.
Was put on Humira but the funding didn't come through so I'm only allowed it when I get hospitalized, nhs eh!? lol
Anyway haven't had an injection since September but from time to time I get really bad pains in my legs and joints up to the knee so much I can't move them and regular pain killers aren't any use. Just wondering if anyone else has suffered from this side affect and if there's anything around that might ease the pain??
Click to expand...

I remember having terrible pain in my joints and bones the day after I had a few drinks at a restaurant, and I'm pretty sure it was a side-effect of the prednisone. I remember it was incredibly painful!
I was on either remicde or humiria at the time, pentasa, maybe 6mp and prednisone. Currently, I take humiria every week or about 7-10 days, depending on how I feel. I have never had much success with pain killers because they can affect the stomach and cause nausea. Not to mention can be addicting. Could try the medical mary jane? Idk. Feels really strange to say that, but I know some states allow it.
 
Just started on Humira this week. I did three of my loading doses in the stomach, and although it stung horrifically for the few seconds it was in, the pain dissipated much faster than in my leg (no fat on my legs thanks to Crohns). I've felt an increase in fatigue, particularly in the early afternoon. Otherwise, I haven't noted any other significant side effects from my loading dose...haven't noticed any improvement in symptoms, but from what I've read here, that is to be expected. Thanks for providing me with a community of fellow sufferers and Adalimumab hopefuls.
 
My next injection (18th of September) will be my two year anniversary on Humira. She's been good to me. Thanks for making me forget I have IBD. Although it hasn't helped much with perianal abscesses, but they're not as bad and usually clear up relatively quickly.

Thanks, Humira, you sexy bastard. <3
 
aeolious said:
Just started on Humira this week. I did three of my loading doses in the stomach, and although it stung horrifically for the few seconds it was in, the pain dissipated much faster than in my leg (no fat on my legs thanks to Crohns). I've felt an increase in fatigue, particularly in the early afternoon. Otherwise, I haven't noted any other significant side effects from my loading dose...haven't noticed any improvement in symptoms, but from what I've read here, that is to be expected. Thanks for providing me with a community of fellow sufferers and Adalimumab hopefuls.
Click to expand...

Same here! I just did my first four pens last Tuesday. I am hoping and praying for results! It would be great if it didn't take as long as 2-3 months for me to know if it's working, but if it does work, the waiting will be worth it! I can't live like this forever! Best of luck to you!
 
Just had my first ever panic attack, not Crohns related, and it was scary! Never experienced anything like it before. Light headed, tight chest, lump in throat, dry mouth, hyperventilating.

:(
 
I feel ya on the panic attacks. I have one every year or so, but the first one was the scariest. I thought I was having a heart attack, then thought I needed to vomit, then thought I was gonna pass out. My first panic attack occured in a crowded club for a concert. I was freaking out so bad and my vision was so blurred that I blindly shoved people out of the way to get to a bathroom stall, where I was finally able to calm myself down enough to realize I wasn't going to die. Ever since, I've always kept a small amount of xanax with me in my wallet as a safety net against panic attacks.
 
aeolious said:
I feel ya on the panic attacks. I have one every year or so, but the first one was the scariest. I thought I was having a heart attack, then thought I needed to vomit, then thought I was gonna pass out. My first panic attack occured in a crowded club for a concert. I was freaking out so bad and my vision was so blurred that I blindly shoved people out of the way to get to a bathroom stall, where I was finally able to calm myself down enough to realize I wasn't going to die. Ever since, I've always kept a small amount of xanax with me in my wallet as a safety net against panic attacks.
Click to expand...

Man, I feel EXHAUSTED, body aches, no energy, I feel "meh". I heard this is common the day after a panic attack. Did you suffer from after effects? How long did it last?
 
I don't remember any day-after effects from my panic attacks. I usually blame fatigue and "meh" feelings on the Crohns. Speaking of fatigue...its one of those days...
On another note, went into the GI doc today. I had to wait 2 hours after the scheduled appointment time to see him. He complemented my recovery since the last time he'd seen me in May, noting that I'd regained my weight and color. I don't feel much better, as the past few weeks Crohns symptoms have reemerged, but its always a good feeling when the doc is impressed with your recovery.

Week 2 double shot of Humira coming up this weekend. Wish me luck.
 
Its shot day for me. Please pray that things go well. I havepain in my ankles and knees, and have swelling.Tests showed its not my heart, but I an nervous about Humira anyway.
 
Ug... Symptoms persisting and my doc wants to do another round of steroids to "help the Humira get started". This will be the third/fourth round of steroids this year and I'm absolutely sick of the side effects of prednisone. I truly believe the negative side-effects are worse than the benefit I get from it. I'm thinking of defying my docs orders and just deal with the symptoms (bleeding, cramps, loose stools, frequent urgent need to BM without much result).
In other news, my second round of loading dosses of Humira went smoothly. I applied a topical anesthetic a few minutes before cleaning and injecting, which helped lessen the burning pain.
 
Hoping to join the Humira club... Just found out today that Humira is the way I am going to be going as Insurance company didn't approve Remicade. I am nervous about starting and the injections. I'm sure eventually i'll get used to it. I absolutely appreciate all of the posts and suggestions on how to make it better.
 
Anyone else not getting much from humira other than side effects? I keep getting uncommon ones. I may have to give another call to my doctor. Last time, I told him of the abdominal pains I was getting, they used to be really bad, but has gotten better. I do have more bm than I used to, which was never a real problem before. I get vaginal bleeding almost daily, but the doc tells me it's just me being nervous about the meds. Believe me, I've had lots of stress in my life and I've never had prop lens with bleeding other than being late or skip months. I'm exhausted for 2-3 days to the point of missing work. I get constant headaches. Another new symptom, I get these lumps on my head and neck. They're sensitive at first, then start to go away, but not completely. Just took my last injection Wednesday, new lumps appeared. I also have joint pain, especially in my ankles/feet and wrists/ hands. I was prescribed something else 2 weeks ago, which I still didn't start taking because of side effects that could be long term with the new med, plus still getting unpleasant side effects with humira. Not sure why I should put myself through so much to not make me better. The other med, which he said works well with humira, it's called purinethol. He's a well respected doctor in the area, but I've lost confidence in him. I'm wondering if he relies on these expensive meds for a larger pay check, or if he's right and to give it 3 months. I'm on my 3rd month now.

I was allergic to remicade and wonder if I just can't tolerate humira. I guess its rare to have these symptoms. I may need to go see my family doctor and get his opinion. And call back the humira help line with these new symptoms.

Michelle, sorry, don't want to scare you with my symptoms. Most people are fine with it. Hope it works out well for you. The injections aren't that bad, I barely feel a thing when I inject. When are you starting?
 
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Wow. I'm sure you're well aware that Remicade and Humira are extremely similar. It doesn't seem reasonable for your physician to discount your reaction to Humira given you were allergic to Remicade. You seem justified in losing faith in your physician. You are not alone there.

A great place to report your side effects is rxisk.org

Here's a few things you may want to read (it's a lot but hey, it's important):
http://www.ihaveuc.com/humira-reviews/
http://diyehr.com/uncategorized/the-humira-studies-charm-and-gain
http://davidhealy.org/neal-parker-avoiding-adverse-events/
http://adverseevents.com/drugdetail.php?AEDrugID=257&BrandName=HUMIRA

There's also a recent petition at change.org to get AbbVie, the maker of Humira, to release more data on adverse events from their clinical trials. It's possible that what you and/or your physician think is rare is quite common. AbbVie currently hide adverse event data from everyone and it's unfortunately legal. Here's the link:
http://chn.ge/13clTyF

I know from having written a recent research report about Fecal Microbiota Transplantation that some IBD patients are finding it helps. Here's the link:
http://bit.ly/1bm7R2y
 
I'm aware it's similar. But thought humira would be better because of the different cells used.
Thank you for those links, I'll be doing some reading :)
 

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