Question about Humira

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jagwebb
New Member


Date Joined May 2008
Total Posts : 8
   Posted 5/20/2008 7:50 PM (GMT -7)   
Hi.  I am a newbie here!  My husband was diagnosed with Crohn's about 11 years ago at the age of 22.  At that time - he was very sick, had lost a lot of weight, vomiting constantly, etc...His GI prescribed Asacol and he got well pretty quick.  He had a few flare ups those first couple of years but has been relatively symptom free for at least 7 - 8 years.  He has taken Asacol daily during this whole time.  He has had colonoscopies every three years since diagnosis.  His most recent one being last week.  The GI keeps saying that his disease is progressing and that his ileocecal valve is closing up.  But he can't explain why my husband has no symptoms and why his blood test also show no inflammation markers.  Long story...but basically the GI is saying that Asacol is not effective for remission and that he would like to put my husband either on a 6-MP or Humira.  Both of these drugs seem to have very serious side efffects and we are having a hard time committing to these medications when we don't see any effects of the disease - even though the dr. is saying it is still there.
 
Has anyone else dealt with this?  Feeling like your disease is in remission but your dr. saying it is not?  Also, for those of you on 6-MP or Humira - what side effects have you experienced?

Irish Red
Regular Member


Date Joined Nov 2007
Total Posts : 54
   Posted 5/20/2008 7:56 PM (GMT -7)   
I am on Humira and have not had any side effects. I just took my fourth injection tonight.
I was also in remission for 4 years but since Oct 2007 I have been in a flare up. I would recommend that if your dr. is saying he needs medication before things get worse I would take him/her up on it. When the symptoms do come back they may not be as easy to treat. There is no incentive for the Dr. to have a patient on Humira other than to best treat the patient and avoid what may come to the future. If the disease is progressing be thankful you found out now.

This is my opinion !

CD since 1988,

Cocktail of medications ( Remicade included) and have explored many herbal remedies.

Currently experiencing another flair up after 4 years of remission.

 

"Life is like a box of chocolates you never know what your going to get inside" 

Everyone knows that quote... how true how true.


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 5/20/2008 8:55 PM (GMT -7)   
I have been on Humira for two years now with great results. I have no symptoms except for a bit of reddness and itching at the site of the injection, which I can certainly deal with.

I was previously on 6-MP and had horrible flu-like symptoms the entire time. I had fevers, body aches and severe fatigue that made it hard to function and even get off the couch. It just wasn't a good drug for me at all. But there are many who are helped by it and who do not have symptoms. Good luck in your decision.

Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 5/20/2008 9:49 PM (GMT -7)   
Wow, what an odd situation. Or maybe it's not unusual for Crohnnies and I've just not been aware of it. Have you considered consulting a second opinion?

I suppose the other option might be to try Humira and go back in a year and see if there is a change in the colonoscopy.

I have been on Humira for over a year - I LOVE it. I was not symptom free, though, so it was easy for me to take a chance on it. I've yet to have a side effect and it's been a fantastic option for me. I can understand your hesitation since he's not feeling any effects of the disease right now...

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/20/2008 10:07 PM (GMT -7)   
Even if he isn't experiencing obvious symptoms, the ramifications of untreated disease and inflammation can be severe. For instance, scar tissue can develop and lead to blockages. It sounds as if that's what's happening to your husband, and might explain why your doctor is keen to try him on a stronger med.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/20/2008 10:07 PM (GMT -7)   
PS. Welcome!
Co-Moderator Crohn's Forum.


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 5/21/2008 1:57 AM (GMT -7)   
I've not been on Hiruma yet (I think I'm headed that way very soon here) but I did take 6-mp back several years ago. I've
had crohn's now for 10 years. 6-mp worked great for me, however my joints got really tight on it and hurt. Mainly my lower ankle joints. I wasn't sure it was from the 6-mp but when I was able to stop it, the joint pain went away. When I would go back on it, I had the joint pain.
So my doctor doesn't want to put me back on it now that I'm having issues again. But it did work great for my gut. It also takes a few months to start working once your on it. Good luck!

jagwebb
New Member


Date Joined May 2008
Total Posts : 8
   Posted 5/21/2008 10:38 AM (GMT -7)   
Thanks for all the responses!
 
Right - I think that is what the dr. thinks is happening with my husband - that the inflammation is not being controlled with the Asacol and that he will eventually wind up with an obstruction.  That is what he told us.  I really like his GI and I trust him and don't think that he is suggesting the new medication for any reason other than the well being of my husband. 
 
It is just that we are relatively young with a young toddler and all of these rare but fatal side effects of the medications are really scary to us!  And when you feel fine - it doesn't seem like a good trade off.  We aren't doubting the dr.'s diagnosis - it would just be easier to chance the odds if his quality of life were suffering.  But he is relatively symptom free, except for occasional joint pain.  Even his dr. can't explain how he remains symptom free with no inflammation markers on his blood tests.  I think that is why he is really pushing for a stronger drug because he said that he has no way to monitor the progression of his disease except with a colonoscopy.  There are no other markers in my husband.  My husband was really only sick when he was first diagnosed and seemed to get well very quick.  He has never been on steriods or anything other than the Asacol and has never been to the hospital for it or had any kind of surgery.   
 
We have thought about getting a second opinion and will likely do that before we start any of these new med's.  We are just curious about the side effects and how "rare" they actually are.     

Post Edited (jagwebb) : 5/21/2008 11:50:10 AM (GMT-6)


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 5/21/2008 12:30 PM (GMT -7)   
i bet the side effects are actually pretty rare, but if he's not too sick, you may be right about balancing the risk vs. gain
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


not creative
Regular Member


Date Joined Mar 2007
Total Posts : 466
   Posted 5/21/2008 1:40 PM (GMT -7)   
When I had my colonoscopy about a year ago, I was taking asacol/lialda and feeling pretty good. My doctor told me that based on the results I’m a candidate for remicade. I worried about this especially since I was feeling pretty good and I knew that remicade was a hardcore drug. He reassured me that we wouldn’t switch until it was necessary- I would stay on the asacol until it no longer worked. Lo, and behold, about 9 months later I started into a flare that caused my doc to start me on Humira. I felt better immediately and though Im currently in a stress-induced mini-flare, he’s put me back on lialda as well as Humira to get me thru th end of the school year.

I didn’t feel like I was having any trouble when I had my scope but based on the way things looked to the doctor, he could apparently see what was coming. If you still don’t think it’s the right thing, get a second opinion, it couldn’t hurt!

Also, I think the major side effects (lymphoma, TB, etc…) are really rare, however, your hubby should definitely watch his skin closely if he starts an anti-TNF because I developed rosacea and others have reported eczema and psoriasis.
Laurenne, 23 Student @ University of California, Davis.
Dx'd w/ IBS and CD in 2002
On Humira, Strattera, Zoloft, (Multivitamin, Flax Oil, and Omega complex when I remember.)


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/21/2008 3:20 PM (GMT -7)   
Given the choice, I would go with 6-mp. The risk of side effects is a little lower than with biologic drugs like Humira, and that gives you to the chance to wait for the big guns until you really need them. The efficacy of the biologic drugs seems to wane after you've used them for a while, so there is a case to be made for waiting to start them until you have run out of other options.

jagwebb
New Member


Date Joined May 2008
Total Posts : 8
   Posted 6/1/2008 12:02 PM (GMT -7)   
I have been reading many of the posts on this board just to get a feel for what others are experiencing with their CD and have learned a lot.  Interestingly, one thing I keep seeing repeated over and over is regarding joint pain.  This seems to be the only symptom of my husband's disease and we never knew it could be so related to the Crohn's.  Thanks for all the responses on Humira and all of the other meds.  We have decided to go for a second opinion at Mayo Clinic and will hopefully be given more options.  I will post the results but we are not going until the end of June.  Just wanted to let everyone know I appreciate all of the activity on this board.

Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/2/2008 5:31 AM (GMT -7)   
I am on Humira and absolutely no side effects (knock on wood) I am glad of taking that along with one cipro a day to keep it in check as I have only been on it 2 months and still have the odd minor flare. I hated it when I was in a major flare, I was taking a ton of pills a day and no one knows which drug is working or not...not to mention side effects. 6mp or Imuran I was on and didnt work. I have had crohns diagnosed 15 years but had it since i was 17, on and off. Good luck and welcome, we are your best for answering questions, even more than docs, cause in less you have this disease, they DONT understand, not one bit. Take care.
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