HealingWell
Search Close Search
☰

Humira now? Seriously? I thought I was done with drugs

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/1/2012 3:15 AM (GMT 0)
Two months ago I had surgery (subtotal colectomy on my way to a jpouch). Because of my pred usage, my surgeon decided to go with a three-part surgery. Everything surgically went very well. But I still have about 8 inches of rectum/colon left with VERY active UC (this was planned and will be gone eventually). It has been making my life miserable!!

As I tapered down the pred, I developed horrible arthritis pain and loss of functionality. Like, can't open the toothpaste, sometimes can't walk level discomfort. I've also developed pyoderma gangrenosom (my body is attacking my skin giving me ulcers) and my mouth sores have returned with a vengeance. Oh, and even though my colon is not hooked up to anything I'm still pushing out blood/pus several times a day.

So, after talking with a Rheumatologist, it sounds like my best option is Humira. The next best option is methotrexate. I had used Remicade for my UC with dwindling success. I had surgery to get AWAY from drugs.

I'm just so miserable every day. I hurt like I have the flu...every day. I can deal with the limited UC symptoms, just not this horrible arthritis. To make matters worse, I have to lose 40 pounds before my next surgery. That will be hard to do when I don't even want to move. Humira is looking better and better but I'm also scared to get my hopes up.

Sorry...just had to whine. I was thinking that I would be getting "better"...getting my life back...etc. I was looking forward to being able to workout again. When I went on a walk one time, my feet swelled up so much and became so painful that I was seriously debating CRAWLING to the bathroom. This is just sooo frustrating! I thought I was done with roller-coasters. Stupid colon.
Posted 11/1/2012 3:57 AM (GMT 0)
You poor thing. I hate the idea of using drugs after surgery but I guess with arthritis that makes you unable to do anything, it may be your only option. Maybe you should just try to get out and walk a bit every day if you can? Try to take it slow. Maybe it's not possible if your really stiff and swollen. I think I'd opt for Humira over having debilitating stiffness and pain.
Posted 11/1/2012 9:23 AM (GMT 0)
I hope Humira will make you feel better

Hugs
Posted 11/1/2012 12:00 PM (GMT 0)
Kind of sounds like you have a yeast problem. I think this scenario is used way too much when it isn't true but in your case it makes me wonder.
Posted 11/1/2012 1:25 PM (GMT 0)
@garylouisville - Can you have yeast overgrowth in the small intestines only? Currently my digestive tract ends at the end of my small intestines..which empty into an ileostomy bag.

I've thought about re-examining the diet issue again.
Posted 11/1/2012 1:48 PM (GMT 0)
     Your profile says end ileo.  I have an end ileo.  I thought it meant that you had one operation and have a "bag" for life, like I do.

     So sorry you have to deal with arthritis issues that are so severe.  I have arthritis in my spine, shoulder and hip and it is NO fun.  However, Aleve seems to help me a lot.  Because of full blown osteoporosis (thanks to prednisone) and the arthritis in my spine, I find it difficult to stand for long periods of time.  I went to a bone specialist and he never even suggested taking Humira.  6MP, Remicade and Humira all failed when I suffered with UP.  He wasn't a big fan of Reclast either, just told me to read up on it since it is my only option of treatment for the osteoporosis.  Well, I did read up on it and NO THANKS. 

       Sounds like you are in a Catch 22.  Hoping and praying you find relief. 

Posted 11/1/2012 2:20 PM (GMT 0)
Thanks all.

Both GI and Rheumy think the arthritis is directly linked to the active UC. And the arthritis rotates around (one day two fingers on my left hand will be swollen, the next day one finger on my right, I go several nights in a row when my shoulders are killing me, then a few days with my elbows...).

I am on Celebrex (with GI's permission since it is an NSAID). It is helping quite a bit but not completely. The Humira should reduce the inflammatory response that is causing both the arthirits and UC (in my case). I asked the Rheumy if an anti-tnf didn't completely help my UC, then would it be able to help my arthritis. He didn't have an answer...didn't expect him too.

I'm sorry that you now have these issues to deal with (post UC pred effects, arthritis).
Posted 11/1/2012 3:03 PM (GMT 0)
ActiveUC: I'm having the same problem. No advice, just want you to know you're not alone and that I'm thinking about you and wishing you the best. I had my colectomy almost a year ago, but my arthritis never really went away. My rheumatologist put me on Methotrexate 3 weeks ago. Best of luck and I hope you can get it under control!
Posted 11/1/2012 3:12 PM (GMT 0)
just curious tiger, what kind of anti-inflammatory diet are you on ?
Posted 11/1/2012 3:29 PM (GMT 0)
I'm not an expert on yeast overgrowth but from my understanding it can happen almost anywhere in the body, including the small intestine.
Posted 11/1/2012 4:42 PM (GMT 0)
You might only need to take Humira until your second surgery. Once that nasty 8" is gone, your symptoms may improve.

Sue
Posted 11/2/2012 9:23 PM (GMT 0)
Definitely what I'm hoping!
Posted 11/2/2012 11:34 PM (GMT 0)
ActiveUCer,
What tests did your doctors run to determine if it was arthritis causing your pain? Do you have a positive ANA? I ask because a couple of years ago after tapering off a long course of high-dose prednisone, I developed excruciating joint pain in my hands, feet, elbows, etc and all-over body aches. I went to see my GP, a podiatrist, a rheumy, my GI, an acupuncturist, pretty much anyone that I thought might be able to help. At first they thought it was UC-related arthritis or just plain arthritis but I was on Remicade at the time and my symptoms weren't improving. Finally, a new rheumy told me that he thought it was related to prednisone "withdrawal." He said that in his experience, one can have these kinds of reactions for up to a year after stopping a long course of prednisone. It wasn't exactly what I wanted to hear, but sure enough, after about six months the pain went away. Another note, I also had developed adrenal insufficiency (actual adrenal insufficiency, not "adrenal fatigue") from taking the steroids, which contributed to the body aches.
Have you had your adrenals checked? Could it be related to prednisone withdrawal? If it is either of these, I wonder if Humira will help.
Wishing you lots of luck in getting to the bottom of things. I know just how crappy it feels to have your joints hurt beyond belief
B
Posted 11/3/2012 12:07 AM (GMT 0)
ActiveUCer, sorry to hear about your situation...

I used to have crazy painful joint pain in localized areas of my body this summer, until finally, I got rid of gluten for good, cut sugar, grains, and started taking Zyflamend. It's a natural anti-inflammatory. Try InflaGuard too, there is a study on this one and its effectiveness with inflammation vs. prednisone.

I feel like regardless of your situation right now, NSAIDS are only doing more damage, I would really ditch that and try a pain reliever or what I mentioned above if you can.

I think you could benefit from incorporating more natural alternatives into your daily regimen to assist the drugs.

Herbs and teas like Turmeric, Boswellia, Devils Claw, apple cider vinegar, licorice root, marshmallow root, slippery elm.
Posted 11/4/2012 12:19 AM (GMT 0)
Hmm, I hadn't thought about the prednisone withdrawal. When I was tapering, I started having horrible body aches. We upped my pred back up and slowed the taper. I'm still on 7.5 megs. I do have lots of random swelling that fits in with arthritis a bit more than steroid withdrawal. I will bring it up with my GI at the next appointment though. I have had a blood panel with ANA and other immune indicators. I had one slightly elevated level (forget which one) that is consistent with UC. But there are no signs of other autoimmune issues.

I do have a strong pain reliever (Vicodin) but I need to use that in addition to the Celebrex. I would prefer not to be on it, but I wouldn't be functional without it. I'll look into the other alternatives - definitely thinking about changing my diet again.
✚ New Topic ✚ Reply