Humira and still having symptoms

[Jilly]

I was diagnosed with UC and UP about 13 years ago. At the end of 2011 I started having severe symptoms again, while on Asacol and Canasa. In December I had a colonoscopy, it still just showed UC and severe UP. So I was put on prednisone and Imuran. Well the Imuran made me sick and elevated my liver functions very high. So I went off of that and just took my Asascol and pred along with pred ememas. Went off the pred in July and within 2 weeks was back on it. So in August I had another scope done. This time the biopsies showed crohns. Stayed on the Asacol and added Himira while weening off of the pred. I seemed to be doing well at first. I now have been diagnosed with inflammatory arthritis. The rhumalogist added 15 mg of methotrexate to help with the inflammation in my joints. So I am now using Humira 2 times a month and taking the MTX 1 time a week. Both of these meds are used to treat both illnesses, but I feel like the crohns is slowly returning and after 7 weeks on the MTX I am still having terrible joint pain. By the way I think my body is now immune to the Asacol and Canasa. Just wondering if anyone else has the same issues with the arthritis and crohns together and having a hard time getting them under control. I will be 50 in April and can no longer do my job that I did for 20 years, home childcare provider. So I am waiting on a decision for disability.

 

[alisonwilkinson]

Hi i have had crohns since 1999. I got iritis in 2010 and am just starting with my hands locking. I sometimes find it hard to write with a pen. I am due to start Humira soon when my liver function comes down from being on 6mp for one week. Im currently on 6mg of budesonide been on 9mg for 6 months until 2nd January 2013. Got appointment with GI next week which i think is related to the locking of my hands. I just wanted to let you know its part of the crohns disease. Take care.

Alison

 

[Jilly]

Thanks Alison. I have been dealing IBD for many years and now find out it's crohns. Does anyone know if colitis and proctitis can turn into crohns or have I had it all along but just not diagnosed correctly?

 

[David]

Hi Jilly and welcome to the community. I'm sorry to hear of your struggles

One option you may want to discuss with your doctor if you're still flaring is moving to Humira once a week. See if that helps get things under control.

Have you had your vitamin D level tested? Have you thought about supplementing magnesium? Anytime I hear people with Crohn's with bone, joint, or muscle pain, those are two things I think of checking out as deficiency in both are VERY common and proper supplementation can make a big difference.

You likely had Crohn's all along although there are anecdotal reports of some people having both Crohn's disease AND Ulcerative Colitis.

 

[Jilly]

Thanks David for the advise. I will talk to my GI about everything. For now he put me back on the cortisone enamas. Those are always fun.

 

[Dawnmg]

Hi Jilly, sorry you're having such problems. I don't have arthritis, well not diagnosed or severe enough to diagnose however I do have crohns and have been on Humira for about 4 months now. At first it seemed as if it worked however, I felt like it would wear off halfway through the next week. I would take it on a Friday then by Tuesday or Wednesday my symptoms would return. I am now on Humira once a week and it seems to be helping. I do still have a lot of stomach pain but my GI doesn't think its from my crohns. They also told me to be patient and wait another month for it to truely start working. Be patient, ha easier said then done. Good luck! Hope you get to feeling better!

 

[Jilly]

Dawnmg, thanks for the support. I have been on the Humira for about 5 months . I mentioned increasing my dose about a month ago and he dosent want to do that. He has me using the dreaded cort enamas instead. I do think I need to do it every week also. Having you and David tell me that just gives me more backbone to tell him again. Thanks I sometimes need a little shove to get things done.

 

[Dawnmg]

Your welcome Jilly, no worries I need a lot of shoves all the time. I am very timid when it comes to talking with my GI. I find myself always getting upset and unable to finish the list of questions I had written down . Its frustrating. The forum has helped my tremendously because I never feel alone, there is always at least one person who has the same symptoms or situation going on at the same time. Hope you are able to increase the Humira and I am sorry to here you are on any enema, I know they can't be enjoyable. Hope you feel well soon!