So I am waiting for approval for Humira after experiencing a flare up of my CD for first time in 12 years (immuran has kept me well up to this year). I got a call from the Humira person today and it seems I will have it within a week or so. I would like to give you all a snapshot of my situation and then ask the question: is this really the best time to start Humira?? It is a lot of info and I apologize. I just feel so alone in this situation... no one expect those who have been there can grasp it. So I am coming to you all for your comments.
I started flaring in Feb 2010 and they increased my immuran from 75mg to 100mg April 2010 (Constipation no D) (diet unaffected)
Colonoscopy in March 2010 showed active CD and significant narrowing, no cancer
I was sick on and off since Feb, lost 40lbs total despite eating well, fatigue, missed some work but mostly plugged through it, felt miserable most days (you know, the usual)
Saw GI in May 2010 and things were seeming to improve then despite ongoing weight loss and fatigue so she wanted me to give the immuran increase some more time and see her in august.
Treated in emergency in July 2010 due to severe pain and C
Finally saw GI in August 2010 and she Increased immuran to 150mg due to ongoing complaints
Mid September 2010 my flare took on a life of its own: I got very very sick, didn't eat, lost 10 lbs in one week(40 total), on tyl 3s, gravol, vomiting with the pain, not able to sit up, felt like i was dying and i probably was, was sent to emergency for colonoscopy and was put on 50mg pred. and my GI said the following:
- You are very sick, the immuran is not working, do not return to work until I tell you and you need to start humira and start weaning the pred by 5mg a week (even though I had only been on it 6 days and it hadn't even started working at that point).
Okay so I came home, been resting, on predisone (down to 40mg now from 50mg) and I haven't gone back to work yet (on 4th week off work).
The last few days I have been feeling much better. The pred. is working I guess. I am eating. I even gained 2 lbs back. I went for a walk in the park today and although it winded me and I feel sore and tired, because I have been bed ridden for weeks, I know I am on the mend. It is the pred. most likely... which i am not sure if i can trust as really "recovery" or not.
I have been doing my research on Humira. I have been talking with family and using this site as a source of strength. I have been feeling like I can work again soon. However I have also been waiting to start Humira.
Most of us know it takes 2-4 months for immuran to work. I started the higher dose (which is more appropriate for my weight) in august 2010. So it hasn't really had time to be tested to see if it is working.
I spoke with the case manager for Humira today and frankly it scared the @#$ out of me. All this talk about the special rules about travelling with it, having a travel letter, the pain involved in the injections, the risk of infection, the cost of the drug (I will likely have to pay $340monthly for it plus the immuran), and the care you need to take with it. It just seems very intimidating.
I had never heard of Humira before the colonoscopy I had in emergency with my GI 2 weeks ago. She gave me very little info. as I outlined above.
So my question is: Do you think it is reasonable for me to ask and maybe to try to give the increase in immuran a bit more time before starting this Humira drug? I could be risking another flare once the pred. is down to say, 20mg. Or maybe the pred. has boosted my system enough to give the immuran a chance to work.
If I am asking a reasonable question, how do I approach my dr with this question?? I am a little indimidated by her as she is the expert and was very clear that she wanted me to start the Humira. She is apparently the top of her field and I am lucky to have her. But I think the bedside manner is not the best- she doesnt have a lot of time to talk. I will likely not see her again for a couple months but will be followed by my GP who can call and ask my questions for me I guess.
Question for myself: Is this even a reasonable thought process or am I just starting to feel better and so maybe I am just less willing to take big risks when I am feeling better? Can I trust this pred. recovery?
Any feedback would be welcome and I know, I wrote a lot of info here. Hopefully it makes some sense.