Humira Club Support Group

Crohn's Disease Forum

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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, 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!!!!!!!
 
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.
 
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!!!!!!!

I hope it works for you and soon.


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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

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


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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.
 
Has anyone ever been off Humira for being sick, with something
other than Crohns? If so how long ?


Thanks

Lauren

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
 
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.

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 *** :)
 
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.
 
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 *** :)

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.
 
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.

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

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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.
 
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??

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
 
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.

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.
 
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.

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 :)
 
I'm not sure how to join the Humira club? I don't see a link, but anyway I have been on Humira for six weeks, and I feel fine. I was on a 4-3 2-1 prednisone taper just before I started the injections so I'm not sure if it is the Humira or that the pred had reduced the inflammation to the point that my BM were ok. The first injection that the nurse did hurt like hell. I think she was pinching the skin to tightly and pressing the pen to hard. When I did the next three they were not as bad, and the biweekly injections are a breeze. I had issues with the Pred. It gave me an irregular pulse . Faster sometimes and skipping a beat sometimes. Once it went up to 120 bpm for two hours. I ride a bike so having a HR of over 120 bpm for hours is not that big a deal, but not while I am sleeping=). My GI was concerned so he had a friend of his call me and schedule an appointment for the next day. They did all kinds of tests and all seemed well. Next I had to wear a heart rate monitor around the clock to see what was going on. They wanted me to trigger an "event" so I did that by riding my bike and walla
It showed an Afib event. Scared all of us. They wanted me to go on drugs to help regulate my HR right away. But at the age of 62 and never having had anything like this happen before, I suggested we wait until I was off the Pred, and BP meds along with not taking a
statin fo 60 days, and agreed to no exercise until the Pred course was complete. So I did all that and started exercising three weeks ago, and you guessed it. I'm doing fine with no meds. My BP went down from 150/90 to 135/75 when I stopped taking Lisinapril ?? Go figure. My heart has not skipped a beat since I stopped the Pred, and I have had my HR up to 155 bpm, and again no issues. I mention this only because the Doctors did not see heart rate as a side effect of the Pred and to tell the truth they kind of did not want to listen to be. Now I'll probably croak
of a heart attack tomorrow and they will say "told you so", but if I don't ???? Sometimes I think we need a break/reset on our meds to know what is going on with our bodies. I have CD and UC and was diagnosed about 15 months ago. Aetna has been wonderful and my hats off to them. Can anyone tell me how long these different meds seem to work? I have noticed that everyone seems to do ok for a period of time and then they relapse and have to start a different drug.
All smiles in TX. (at least for now)
 
kurtflies12, There are a few studies which might answer your question about how long Humira will last if it's working for you. You can find them collected here: http://bit.ly/18i9cmQ

I recall reading a study about Remicade, which is similar, and it seems like about 15% of people were still talking it 7 years later. The reference is here: http://bit.ly/14AuVDH

In my own experience Remicade lost its efficacy slowly over about 5 years to the point were it was useless. It's a fairly common result for people who benefit from it and don't have side effects.

Do you feel like you're aware of the potential side effects of Humira? Here's a link to a timeline of how the disclosure has changed since the drug was approved: http://bit.ly/17y811I
Just FYI it appears from reading through people's treads on this side that physicians aren't always aware of latest list of side effects and FDA disclosures.
 
Thanks Kss. I'll check out the links for sure. When I went from mild to moderate to severe with the CD, my GI wanted me to try a gluten free diet so I have been doing that (95%) and I have also been juicing in the mornings. I started all of this at about the same time, so it is kind of hard to tell what is working or what caused the improvement . I'd like to stop taking the Humira at some point to see if the diet could be playing a part in my illness, but I also don't want to screw up the process with the Humira. It just seem to me that I made it 62 years with very few problems, so if I change my diet in a healthy way I wonder how long it will take before either the CD of UC come back? If I stay on the drug until the CD does come back, then how do I know it would not have come back anyway, even it I were not taking the drug? Most doctors that I know, once they start you on a drug treatment plan they don't want you to change it, but I don't know if that is such a good idea. I know I feel 100% better now that I have stopped the statin and BP meds. I guess time will tell.
Thanks again
 
Wow kurtflies12! I think you bring up a lot of very important points. And that's great your doctor suggested a gluten free diet. There's a site called Crohnology.com which asks everyone about different diets they're tried. Gluten free gets a lot of positive response. So does avoiding beer and meat. You can see some of the results here: http://bit.ly/T7taG7 For up to date diet info you'll have to log in and search around for the latest chart.

As for stopping medication I have an experience you might like to read. It's about azathioprine but you might appreciate the sentiment given you stopped the statin and BP meds: http://bit.ly/PL03Je

If you end up stopping Humira please let us know how it goes.

Also, you mentioned you were diagnosed with Crohn's and UC about 15 months ago. Was there any sort of extremely stressful event that happened around then? I ask because it seems like when people in their 60's are being diagnosis its around the time they lose a spouse or have some other tragic event happen.
 
Just restarted on Humira after about 2 and a half months off with 'mystery' illness. I'm on weekly injections for 4 weeks and then back to fortnightly, hopefully still works for me (feeling pretty yuck ATM).

Anyone been through similar?
 
After months of going against my doctor's wishes I finally started humira 1 1/2 weeks ago. The shots were not as bad as I was expecting. I noticed some improvement after one week in regards to the amount of intestinal pain I was in.

However, the day following the first dosage (4 shots) I woke up with lower back pain. This pain has been persistent and hasn't gotten any better. Has anyone else had this side effect?:sign0085:

I will be due for my second dosage (2 shots) in a few days

Note: I was originally prescribed a 6MP but ended up having an allergic reaction. So after exhausting my Entocort prescriptions I had no other choice but to start Humira.
 
newbie4,

Others have had back pain problems, too. If you like you can take a look at rxisk.org and type in Humira. You can then view the side effects. Here's the link directly to a wordcloud that's in alphabetical order: http://bit.ly/1627N1x
It looks like there are 2,120 reports of back pain.

You can report your side effects using the site.

Also, I think there are other alternatives to explore other than Humira. FMT comes to mind: http://bit.ly/1bm7R2y

FYI there's still the AbbVie petition you might like to sign. http://chn.ge/13clTyF
 
I am about to start Humira :dance: I have been off of it for 2.5 years and more than ready to be back on it. I had great success with it in the past. My question is... How many of you give it in the thigh? I can not safely inject it into my abdomen, and I imagine the thigh will be more painful. Just trying to figure out what to expect
Thanks!
 
I refuse to ever put an injection pen in my thigh again. It is a much more intense pain, but as with the stomach, it dissipates within 30 seconds. I've heard of some people doing it in the back of their arm, which seems like it would be a bit more tolerable than the leg.
I just did my injection last night. I'm on month 2 and I haven't experienced any notable side effects except for fatigue following the injections. Best of luck with this powerful medication.
 
Doctor will be prescribing Humira tomorrow. I have signed up for the Humira protection plan. I am a little concerned because my GI uses a company that does all the insurance verification and ordering the medicine. I have all the information I need. And will give this to the doctor tomorrow. I fear the "company" will miss using this info. Anyone have any experience with the Humira Protection plan and such "companies"?
 
I'm a little confused as to why it's called a Protection Plan. What exactly is protected?

The link just isn't clear to me. Are they trying to get you to purchase insurance against someday potentially not having insurance that covers Humira? Is that right? Or are you paying for a discount on your co-pay for Humira?

What is the cost?
 
This is a service provided by the manufacturer. The plan helps offset the costs associated with using Humira. Depending on one's insurance company, the cost to use Humira can be as much as $4000 for the starter kit with no insurance. The protection plan helps offset copays. One could get it for as little as $5.

If you click on the link and go to the faqs it talks about this.

They will contact your insurance company should you be denied coverage and try to work out something.

Also they have a financial fund available for those with no insurance.

There is no cost to you for the protection plan.
 
That's interesting. AbbVie, by the way, makes Humira. It's a spin-off of Abbott. I'll take a look at the FAQs. I missed that part.

Just so you're aware there's a petition at change.org about getting AbbVie to release clinical trial data. You also might like to check out the Humira timeline just so you're well informed about how Humira's risk profile has been adjusted over the years. http://davidhealy.org/abbvie-humira-timeline/

Also, rxisk.org has a collection of side effect information you might want to review before taking it. You can also report your side effect info there.
 
I've been using the humira protection plan for years. I do have to remind my specialty pharmacy to use it when I refill my medication. I can get 3 months at a time for $5 versus my $50/mo copay. Can't beat that! A lot of drug companies offer these savings cards, which are basically coupons off your copays. They can't be used with state/federally funded insurance. Whenever your provider prescribes a brand name drug I would suggest checking out their website to see if they have a savings card/plan.
 
I have a question for KSS,

As I find your insight very helpful (thank you), I am a bit curious on your intentions. It seems as though you are against the use of Humira, do you have any personal experience while on the drug that didn't go so well?

I must be speaking for others who also found the courage to start using the drug and must, once again, start worrying about these side effects when coming to this support group due to the warnings you post about the drug after someone states they will be starting its use.
 
I have a question for KSS,

As I find your insight very helpful (thank you), I am a bit curious on your intentions. It seems as though you are against the use of Humira, do you have any personal experience while on the drug that didn't go so well?

I must be speaking for others who also found the courage to start using the drug and must, once again, start worrying about these side effects when coming to this support group due to the warnings you post about the drug after someone states they will be starting its use.

Thank you for this reply. I was wondering the same thing.
 
Oh, I'm not for or against Humira. I'm for patient's informed consent. Humira certainly has its place as a treatment option but it's an extremely aggressive solution. And it's very easy for physicians to prescribe. (Certainly a lot easier and less time consuming than trying to help a patient manage an elimination diet, for example. Distorted incentives, no?)

What I'm against are drug companies claiming clinical trial data is proprietary. That's wrong. AbbVie/Abbott is a top offender. They've also recently had to pay 1.5 billion in fines over marketing deception (May 2012 under Abbott). See Big Pharma's Big Fines at Pro Publica. The fines were for illegal promotion of Depokote. Why think Humira, a much more lucrative product for AbbVie than Depokete, is any different?

And just FYI there's at least a dozen lawsuits in Cook County, IL, USA against AbbVie/Abbott because of Humira. I should probably collect them into a blog post and share. Here's news about one of the recent lawsuits. And there's more you can find at the Vickery Law Firm website. They posted some of case filings on their site.

And I've never taken Humira. I had Remicade for years and was blissfully unaware of the dangers. The only hint I got about its side effects was a nurse who insisted than an Epi pen be within arms reach of my IV. Had I known what the side effects were I probably would've been more proactive at finding a way to control my Crohn's w/o it. I did not give informed consent because I was not informed.

Lately I've been leaning toward a pharmaceutical company's culpability as a part of a patient's informed consent. I also think AbbVie's culpability should be a factor in the physician's understanding of a drug's risk profile. What do you think?

:)
 
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Starting Humira next week. I am very nervous. Feel like crap between weaning off prednisone and Crohn's symptoms. I don't want another side effect.....:depressed::depressed:
 
Starting Humira next week. I am very nervous. Feel like crap between weaning off prednisone and Crohn's symptoms. I don't want another side effect.....:depressed::depressed:

Good luck! I was very nervous too when I started years ago (mainly stemming from issues I had with remicade). I even brought a friend with me to my appt for moral support. The first few years that I used it were my best ever. I had forgotten what it felt like to be "normal". I haven't had any major issues with it since (just a little site reaction, and it stings for about 20sec), it just has become less effective over time for me. I'm afraid of an increased risk infections, I try to be as careful as I can be, get my flu vaccine, I can work from home, etc and I haven't noticed that I catch anything any more frequently than before. Hope all goes well, I know it's a big step!
 
I've been using the humira protection plan for years. I do have to remind my specialty pharmacy to use it when I refill my medication. I can get 3 months at a time for $5 versus my $50/mo copay. Can't beat that! A lot of drug companies offer these savings cards, which are basically coupons off your copays. They can't be used with state/federally funded insurance. Whenever your provider prescribes a brand name drug I would suggest checking out their website to see if they have a savings card/plan.

How did you get the three month supply. I was told that they would only do one month at a time. Sure would be nice to know your secret?
Regards Kurt
 
How did you get the three month supply. I was told that they would only do one month at a time. Sure would be nice to know your secret?
Regards Kurt

If you use mail order you can get a 90 day supply for the one copayment. Your doctor needs to make the prescription for 90 days with 3 refills. That's how I get it with other prescriptions. Hope it can be done with Humira. I'll soon find out!
 
kss, just wondering, are you on any treatments now? And what works for you? I'm thinking of giving it up. After 3 months, I still have more discomfort with humira than without.
I've been following a diet reduced in grains, mostly wheat, sugar and dairy. My guts feel better when I don't eat much of those foods.
 
How did you get the three month supply. I was told that they would only do one month at a time. Sure would be nice to know your secret?
Regards Kurt

In addition to what is noted above, it also depends on your insurance plan as they vary widely. Some plans only allow 30 days for a specialty drug regardless if they obtain it through a retail pharmacy or through mail order. You can ask your pharmacy benefit manager/mail order company if your plan covers 90 days at a time. They can also tell you if your provider will need to call in a prescription with appropriate refills.
 
SylviaA,

kss, just wondering, are you on any treatments now?
I stopped taking prescription meds 2 1/2 years ago. I've posted more info here.

I've been following a diet reduced in grains, mostly wheat, sugar and dairy. My guts feel better when I don't eat much of those foods.

I eat mostly gluten free and vegan with low added sugar. Seems similar to you. And I don't eat processed foods or drink alcohol. And I've recently tried L-Glutamie which seems to help.

But before we get too off topic I know of one other user who reported stopping Humira: Paul Cronk in this tread. There are probably lots more. Let me know if you come across any.

I just checked Crohnology.com for what those patients have said about Humira and the site has a section on what patients try after Humira with a nice pie chart. There's the link but I'm sure you'll have to sign up to see it. The biggest slice of the pie is Remicade.
 
I am about to start Humira :dance: I have been off of it for 2.5 years and more than ready to be back on it. I had great success with it in the past. My question is... How many of you give it in the thigh? I can not safely inject it into my abdomen, and I imagine the thigh will be more painful. Just trying to figure out what to expect
Thanks!

I do them in my thighs. I admit it is painful. I have my husband do it so I just focus on relaxing as much as possible for the 10 or so seconds and then it's done. Immediately following I treat my self to a yummy snack and a funny show/movie and go to bed :)

Hope you have returned success with it!
 
Afldz
I do DS's in the thigh.
It does really hurt.
His rhuemo gave us a script for lidocaine to mix with the humira to reduce the pain of the injection.
It really works for him.


kss-
As far as risks of humira and going drug free-
it is wonderful IF that works for you
BUT most people who are on humira have tried all the other drugs and food elimination diets and still did not find relief.

my child's doc tried every possible combination before he was placed on remicade and only after TWO allergic reactions ( with steroids ) did he switch him to humira.

I am upset that you would suggest that ALL doctors prescribe it easily without trying other options ( and yes my son was no foods for over 9 weeks).
I am also upset that you think that others are not informed of the many many things that could go wrong by using drugs like humira.

Risks well just pull the studies - most of the biologics have similar known risks.
Some are better and some are worse but that doesnt mean a whole lot if the drug does not help you get to remission. If all drugs work well for a person then you can chose to take the less risky drug ( I mean who wouldn't). But crohn's doesn't work that way for some.
The one risk I know is that without crohns disease that is under control my child who was dx at age 7 has a severe clinical course predicted period.
No other drug or food diet etc... has slowed down his disease except for TNF-Alpha blockers.

It is not kind to constantly comment/judge those of us who take those risks either for ourselves or others that you do not have confront at this point.

AND Yes I have pulled lots and lots of technical papers on biologics and children.

I also put my child in a car every day - the risk of dying is 1 in 250 in the US for kids under 14.
The is risk of the T-cell lymphoma 4 in 10,000 for those on biologics plus immunosuppressants.

I am sticking with the humira for now since it is the only drug choice we have left until something better and safer that works comes along.


I think its important to focus on the benefits as well.
I get my kid back.
He can play , go to school, and not be in pain twenty-four seven.
 
I'm not sure where kss stated that all doctors prescribe it easily, or did I miss something :/
I find the info he put out there is great for the ones that Humira doesn't work well for. And as he said, it has it's place.....I feel, for me, my doc was quick to prescribe biologics, I had been doing just fine for over 11yrs without meds, then got an abscess then all went downhill from there on with all the wrong decisions made. My surgery could of been avoided if only a different approach would of been done, and my doc admitted that.
And diet seems to be more effective for me than meds.
I'm really happy it works great for your son though, if only everyone could respond to it as he does. Hope he's coping well with this disease. Can't be easy for a child and for mom either.

A bit off topic:
kss, I'm not vegan, far from it. But I do not eat highly processed foods, mostly veggies, pasture raised meats/eggs and as far as dairy, only yogurt and a bit of organic cream in coffee(I need to eliminate, but it's hard) and avoid GMO I could go on and on about food, but I'll leave it at that.....And thanks for those links :)
 
I also think it depends on the doctor's philosophy to manage Crohn's from the "top" down or "bottom" up. Top down is more aggressive and try's to manage it hard and fast. Bottom up is starting with least effects then switching or adding once those drugs don't work.

I have tried to manage with diet. Prednisone for 3 months. My doctor is a "top" down approach physician. He wants to get it undercontrol as soon as possible. I have to have faith because for so long I had a doctor who didn't even rule Crohn's out. Not until I suffered long enough and switched doctors did I finally get an answer.

I have to pray this Humira works and or I don't get sicker from side effects. I have learned that we can not control everything in our lives.
 
Humira has been a life saver for me. I've been on it for almost 2 months and have been virtually symptom free. I don't know what I would have done without it so for me it's worth the side effects.
 
mylittlepenguin

That's great Humira is working for your little penguin. Remicade worked for me for about 5 years.
:)

BUT most people who are on humira have tried all the other drugs and food elimination diets and still did not find relief.

How do you know? (ref, please) And fyi that's not inline with my experience.

I am upset that you would suggest that ALL doctors prescribe it easily without trying other options

I said it was less time consuming to prescribe Humira than to manage a patient's elimination diet. It's not a contentious statement. It's nearly always easier to prescribe a drug than to rely on a patient to change their behavior. It's the convenience factor (see Ch1 of Big Pharma by Jacky Law for an excellent discussion).

I am also upset that you think that others are not informed of the many many things that could go wrong by using drugs like humira.

My evidence are the recent Humira lawsuits and the company's recent criminal culpability. Given the marketing habits of AbbVie/Abbott and fines they've paid lately it's better to make sure patients are as honestly informed as possible. Abbott/AbbVie paid a criminal fine levied by the Department of Justice of 1.5B just last year. And fyi the recent lawsuits against AbbVie/Abbott wrt Humira also contend with physicians not making their patients aware. So not only are patients not aware but neither are some physicians! There's currently litigation in Europe which is trying to get AbbVie/Abbott to disclose clinical trial data. It fact there's a very transparent dialogue between Neal Parker of AbbVie and Flamina Macchia of Eurordis you might like to read. It's recent. I think it was just last month. It gives a lot of insight about how the company thinks.

And please don't forget about the Humira timeline! It's a lot of work for physicians to stay up to date on all this sort of info. They're swamped with work and things have changed a lot since it was first approved by the FDA.

mylittlepenguin, If you might humor me, ask your physician about the "Dear Doctor" letter they received from Abbott regarding Humira. If you get a blank stare say "Drug Safety Communication Letter back in 2011". If you get a second blank stare you can be upset at someone other than me.
 

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