Humira question

[littlemary]

I was diagnosed with microscopic colitis about 4 years ago, and it is relatively well-controlled on sulphasalazine. I also had episodes of iritis and severe joint pain over the past few years. I go to a very good rheumatologist at Johns Hopkins who started me on Humira in September for the sacroilitis and other joint pain. It has been like a miracle drug to me, working almost overnight.
My question is, the GI doc seems to think the Humira will make the microscopic colitis much better. I seem to think that this is not the case, that it is strictly for the inflammatory arthritis. I still have some flares of my colitis, it doesn't seem to have had an effect on that. Does anyone out there have any ideas about this. I go back to the GI doc in February, and am worried that he will take me off the sulphasalazine, or reduce it, thinking that Humira will help everything. Please let me know if anyone has any ideas on this. This is my first post in a long time.
I find this group so helpful when I am having a bad flare or feeling down or scared. Let me know what you think. Thanks a lot!

The world breaks everyone, but afterward, many are strong at the broken places.

[tex]

Hi Mary, and welcome to the board.

Most GI doctors believe that microscopic colitis is caused by an overactive immune system, and that it can be controlled by suppressing the immune system. The anti-TNF drugs, (including Humira, Remicade, Enbrel, etc.), are some of the most effective immune system suppressants available, (that's why they work for RA). Therefore, theoretically, at least, they should very effectively control MC. The problem is, we have only one other member who is using an anti-TNF drug, (Remicade, if I recall correctly), and not only did the Remicade not control her MC symptoms, but it seemed to make them much worse. She continued to take the drug, because she was taking it for RA and related issues, but at last report, her MC was completely out of control.

So, you definitely have a reason to be concerned, if your doctor insists that you stop taking the sulfasalazine. Maybe he will allow you to continue taking it. If he won't, you might be able to get a prescription from your GP. If that fails, you may need to switch GI docs.

Of course, there is a chance that the Humira may start helping to control the MC symptoms, but I would think that if it were going to help, it should have shown some benefits by now.

Good luck with this, and please keep us posted. Never hesitate to post if you have any questions, or if you need a shoulder to lean on.

Tex

[littlemary]

Yes, so far that seems to be the case with me too. The humira works like a miracle for the inflammatory arthritis. I was having elevated body temps into the triple digits and great pain from this and scary, scary fatigue. Humira helped overnight. But my MC seems to have gotten a little worse, and I went back also, in addition to the sulfasalazine, entocort also, because I have had some severe flares with nausea, and at times even vomiting. I also take Levsin for the abdominal cramping. The MC is not out of control yet, and I have a very understanding GI doc (not bad-looking either by the way). Hopefully when I go to see him in February he will at least keep me on the sulfasalazine, if not the entocort. It seems little is known about this disease and doctors are fairly new at treating this. I am also HLA-B27 positive, x-ray negative so far, but the arthritis is possibly ankylosing spondylitis or undifferentiated spondylarthropathy. All this stuff started about the same time several years ago, so I am sure they are all inter-related. I get so scared sometimes and feel very alone, as I am single and only have my dogs and parrot to keep me company. That's when I come to this board, because you, especially, seem to be an expert on these symptoms. I will show my GI doc what you wrote, because he is very receptive to someone doing their own research, and I am a Medical Technologist, so he listens to me. Thanks for helping me. If you find out anything else, please let me know! Thanks again.

[tex]

Do you monitor your C-reactive protein level? I'm not a huge fan of statins, but I find myself in the awkward position of apparently benefiting from the use of one, and since you are HLA-B27 positive, I wonder if taking a statin might preempt, or at least delay the development of ankylosing spondylitis. At the very least, you might want to keep it in mind in the event that AS becomes a reality.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1798123/

Please don't interpret this as a recommendation to start taking a statin, because as you know, I'm not a medical professional, but you might want to discuss this possibility with your doctors, (preferably, get the opinion of more than one doctor).

Good luck with this, and keep us posted.

Tex

[littlemary]

My CRP level, when I had it checked, was normal, but I was already on Humira, Sulphasalazine, and Entocort, so I couldn't have had an elevated level if someone pointed a gun at my head.
I did, at one time, before all this started, have a very abnormal protein electrophoresis, and elevated haptoglobins, indicating a chronic inflammatory process going on. I sure would like to stay away from statins, but I definitely will check out the link you showed me. Thanks so much. Your information is so helpful. Let me know if you find out anything else about TNF inhibitors and MC.

[tex]

Do you by any chance have paid access to the online publication Gastroenterology? The article at the following link is titled W1144 Anti-TNF Therapy for Refractory Microscopic Colitis, but since no abstract is available, and I don't have a subscription, I have no idea if it actually contains any worthwhile information.

http://www.gastrojournal.org/article/S0 ... 4/abstract

Tex

[littlemary]

It was $30 to purchase the article. Wasn't sure if I wanted to spend that much. But I am a member of Medscape, and found a very similar article and printed it out for free. It is pretty long, so I will read it this weekend, and see if it contains anything of interest. Thanks again for your help, and if you hear anything else, please let me know!

[ant]

Dear Littlemary

I cannot add to this discussion, but just wanted to say hello and to the family.

Wishing you all the best, Ant

[debontl]

I am also taking Humira and Sulfasalazine. I dont know which has helped, but I am doing better. I started Humira first for my spondylosis and then she started the Sulfasalazine and I did notice some slight improvement. I just stopped taking my Entocort recently after being on it for years. So far, so good. Still have to take my Metamucil every day or I'm in trouble.

[littlemary]

Dear Ant, thanks for the warm welcome! Debontil, thanks for your input, I really appreciate all your help. Tex, sorry I haven't replied recently, but I did read that article. It was very difficult to read, but just amounted to TNF inhibitors helping undifferentiated colitis sufferers. Big deal. I bet it helped someone with a clipboard keep their job! I gave myself another Humira injection the other night, and again, it is like a miracle to me. Joints feel great, tummy not so good. I had a bad flare on Thanksgiving day, of all days. I was running low on Sulfasalazine, drugstore not open on the holiday, blah, blah, blah. So I lowered my dose for a day or two, and took an extra Entocort. Sat on the pot all morning Thanksgiving morning. I have no family, so I was spending the day at a friends house with her family, but told her it was a bad tummy day, so beware! My GI doc prescribed me Levsin for the abdominal pain and cramping, kind of like Imodium on steroids, and I shared a blood supply with the sofa for awhile, and felt pretty good, and actually had an appetite when I got to my friend's house. I had a great time. Got a call an hour after I got home that my friend's granddaughter, stunningly beautiful 17 year old girl, drove home, right after me, had a car accident, slipped on some leaves and rainy roads, went over an embankment, and was trapped in the car, upside down, unconscious. She is in Hershey Medical Center. Please everyone say a prayer for her. This makes my problems feel minor by comparison.

[starfire]

Glad you had a decent Thanksgiving after all the problems.

VERY, VERY sorry to hear about the 17 yr old. Please post updates when you get more information on her condition.

Love, Shirley

[ant]

Ditto.

Hope things go well for you, and I say a prayer for the 17yr old.

Best, ant

[tex]

but just amounted to TNF inhibitors helping undifferentiated colitis sufferers. Big deal. I bet it helped someone with a clipboard keep their job!

I'm sure you're right about that.

I'm glad your Thanksgiving day improved so much after such a "shakey" start, but I'm very sorry to hear of your friend's granddaughter's accident. We'll certainly send our prayers and best wishes.

Tex

[Gloria]

Littlemary,

You had quite a day - going from enjoyment and relief, to a tragedy. I hope your friend's granddaughter recovers. I will keep her in my prayers.

Gloria

[Linda in BC]

Hello Mary,
I'll be thinking of you friend's granddaughter too and sending prayers her way.
Please let us know how she is doing. Such tragedies certainly do put a different perspective on our illness.

Linda