Humira - Joint Pain - Unbearable? - Please help...have to make a decision to continue

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/22/2009 10:38 PM (GMT 0)   
Did anyone else have SEVERE joint/muscle pain while on Humira? I am practically bedridden without the narcotic. I started weaning off the narcotic as my gut already seems better. I was down to 4 pain pills from roughly 8-10. That was drastic for me! Well, then I had a rare side effect of Humira - flu-like symptoms which now I'm still fighting the soreness. The pain is crippling. I hurt from head to toe. Just trying to get up and down on my knees to bath my daughter or pick something off the floor or just to go up the stairs to bed is a CHORE. I hurt ALL over.

My last 2 options are Tsyabri and then a total colectomy. I guess they are skipping Cimzia because it's so similar to Humira and given my side effects? I CAN chose to stay on Humira, but I don't know how much longer I can tolerate the pain. 2 hydrocodones are NOT cutting the pain....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


Betagirl
Veteran Member


Date Joined Jan 2003
Total Posts : 1928
   Posted 3/23/2009 4:27 AM (GMT -7)   
Hi Kaycie,

Has your doctor tried using pre-treatment with prednisone and benedryl, similar to what they do with Remicade? I had a reaction, though not nearly as severe as yours, and we went this route. I would start the pred/benedryl a few days before the shot and continue for about 5 days and taper off. It worked like a charm thankfully. Eventually I didn't need the pre-treatment any more. I'm sorry you're facing such a decision!
"Only the meek get pinched...the bold survive."


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 3/23/2009 6:12 AM (GMT -7)   
My husband is on remicade, and for a while there, he was on both remicade and prednisone. But once he tapered to below 10 mgs of pred, for about 2 days after a remicade infusion, he was feverish, joint pain, muscle pain, just completely miserable. They were pretreating him with just tylenol and benydrl at this point.

We mentioned this to his doctor, and now when he gets an infusion, he gets 40 mgs of iv solumedrol and iv benydrl. And he has no problems at all, no fever, no joint pain, no muscle aches. In fact, he can even work out after a remicade infusion, when in the past, I've had to give him warm compresses, and even some vicodin.

I also think if you haven't tried it yet, pre-treating with something to dampen down your immune reaction would be a good idea. Though with the 2 week frequency of humira, I'm not sure you'd want to take steroids every 2 weeks. Please check with your doctor to see what meds can help suppress the immune reaction.

Also, is it possible that you have developed antibodies to humira? I know that humira is a lot more human based than remicade, but is it still possible to develop antibodies to humira? Perhaps someone on this forum with more experience with humira can answer that. If you have developed antibodies, perhaps cimzia is worth a shot.

Another possibility is humira induced lupus like syndrome, which can cause a lot of joint pain I've heard. There are some folks on this board who've had to deal with lupus caused by the anti-tnf agents. I think humira is less likely to cause this syndrome. Perhaps folks on the board with some experience with this can chime in. Do get your doctor to test you for this though. I think if you test positive for this lupus like syndrome, then, staying away from anti-tnf agents may be a good idea.

I'm so sorry you're going through such a rough time. I hope you get some answers and some relief soon.

Take care,
PV

Post Edited (PV) : 3/23/2009 7:16:08 AM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/23/2009 6:55 AM (GMT -7)   
I hate to tell you this, but get your ANA checked it sounds like you might have the anti-TNF induced lupus like syndrome.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


xraygrrl
Regular Member


Date Joined Aug 2004
Total Posts : 102
   Posted 3/23/2009 7:30 AM (GMT -7)   
I had that too, Kaycie. I could barely walk. I ended up stopping Humira and flared up again pretty quickly, although the joint pain went away just as quickly. I'm on Remicaide now but it doesn't seem to be working as well as the Humira did.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 3/23/2009 9:30 AM (GMT -7)   

Kaycie, I am also on Humira and went through a period of about a month in late January where I was in extreme pain with my joints.  I could not work, could not dress/undress myself or get in/out of the bathtub or bed without my husband's help for about a week of that month.  The days I did work, I was in tears by the time I got home.  My problem was supposedly just an arthritis flare...hydrocodone didn't touch it and I only got relief when taking a bunch of prednisone.  The Humira shots made no effect.  Finally, after a very long month, the next Humira shot I did helped greatly and I got out of my flare. 

I have been doing well for a month...back down to ultracet instead of hydrocodone and able to work out almost every day again.  Until this weekend...seems like the arthritis is about to start a bad flare again.  I am also at the point of trying to decide if I should stay on Humira or switch to something else.  Tysabri scares me too much and I don't know that I can do Cimzia just once a month, since I used to get it biweekly on a clinical trial.  According to my rheumy, mine is just Crohn's related arthritis, not anything caused by the Humira. 

I don't really have any point to this post other than to tell you that I am in the same boat, trying to decide if I should stick it out longer or switch to something else.  It is truly a difficult decision.  But, if you are not scared of Tsyabri like I am, that may be something to try next.  From what my GI told me, you should know within a few months and, if it isn't working, then you can try something else.   


Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/23/2009 10:10 AM (GMT -7)   
Thanks everyone.

My GI is pretty firm this is Crohn's-induced, but I don't know anymore. If it is, I'm SHOCKED at how crippling the Crohn's arthritis can hurt. I am a VERY busy, not the sit-down kind of person and I had my life back for 2 years while I was in remission and now I'm MISERABLE. I'm not at work for the 3rd in a row. I can't stop sleeping..and I hurt all over.

Navy - As much as I HOPE you are wrong, I think that's the next step. Just need to rule it out, so it' snot a worry.

Everyone else - Thanks for the tips on pred before. Unfortunately because I've had just bad side effects to Pred (cataracts, high blood pressure, weigh gain, insomnia, the list goes on), the GI will not let me anymore. The tip of the iceberg was my blood pressure shooting up. That's when he said enough was enough. I travel to Barnes Jewish to see my doc.

My hands even hurt. I've been losing weight since peaking at 265, I'm now down to 255. (darn steroids) I used to weigh 234 about 6years ago and was FAR more active before. My goal is 150 where I used to be and was healthy at that weight. Anyway, something is just NOT right... too weak to explain much more...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 13 months old


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/23/2009 12:26 PM (GMT -7)   
Have you tried enteral nutrition (using a special liquid diet instead of regular food for several weeks in order to induce remission)? Doesn't work for everyone, but those who are going to respond will usually see at least some improvement within the first 10 days or so, so you don't have to stick with it for a long time if it's not effective for you.
 
There have been some posts about this lately, especially by Colin, who has been doing well on enteral nutrition. (I don't know where you're located. He's using a formula that is not available in the US, but there are plenty of comparable products available in the U.S. and elsewhere that you could use.) Anyway, this is just a thought, since you seem to have tried most of the other therapies for Crohn's. Good luck.

boomersdad
New Member


Date Joined Aug 2012
Total Posts : 1
   Posted 8/23/2012 9:48 AM (GMT -7)   
Hi, I am new to HealingWell but I am intrigued with all the members responses. I have had Crohn's since 1983. I had an ileectomy in 1989, a colectomy in 1999 and now I just got an ileostomy. As you can see I have been through the ringer. I have been on Humira for a year now and I have the normal fatigue and muscle pain but the pain in my feet and hands are the worst. The pain is so bad I have to stand for awhile and let the pain subside before I try to walk/ shuffle. I did not have this pain before Humira. I am also on Coumadin so I do not know if the pain is from that drug. The information on the web alludes to both being able to cause this pain. Is anyone else taking this combination of Humira and Coumadin? confused

JavaJay
Regular Member


Date Joined Mar 2009
Total Posts : 452
   Posted 8/23/2012 10:55 AM (GMT -7)   
Kaycie - I have to agree with MMMNavy.  I know someone that got Lupis effects due to Humira.  They were and still in severe pain even after stopping the meds.  I am sorry you are going through this.  Remember you know your body best and if you feel you can't handle it...stop taking Humira.  I am finding it is one nasty medicine.  I myself am on it and trying to get off it.
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