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The medication debate... should I start Humira if I am feeling better? Feedback?

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Posted 10/13/2010 10:20 PM (GMT 0)
Hi everyone

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.

Thx

B 

Posted 10/13/2010 10:57 PM (GMT 0)
I read your whole post. I hope my response makes sense.

I think you are asking reasonable questions. You definitely have the option of presenting your case to your doc about waiting for the higher dose of Imuran to kick in and ask your questions. Don't be intimidated. You're the patient, it's your body, you have every right to ask these questions and your doc should be able to give you an answer as to why or why not she thinks that's the way (or not) to go. You can hope that your guts will hang on until then, but I personally wouldn't trust a pred recovery. I've been on it for about 20 years now and it will eventually let you down. :) Also - this flare doesn't seem like it's going away. You've been battling this since february and you've lost A LOT of weight. I think with your history of what has happened in the last year it's a logical conclusion for your doc to want to move on to the Humira. I don't know that the imuran alone is going to get you through this, but you do have the option of waiting it out.

2nd option - wait for the imuran to kick in while you taper down on the pred and make some diet modifications. I don't know if you've ever tried anything like that or if you even can. For some people dietary changes can make a huge difference. You might find that eating differently will cause things to chill out a little and maybe you can get by on just the imuran that way. In the past when the meds weren't doing everything to get my flares under control I have gone on the Specific Carbohydrate Diet and it has helped. I've never been med free, but it kept me from surgery. So, I just wanted to throw that idea out there in case it was something you might be able to consider.

3rd option - take the Humira. I've been on Humira for a little over 2 years. It helps. Or at least it helps me. I have 3 kids, two are in public school and I have not caught any crazy number of infections. In fact, other than normal head-colds I haven't caught anything. I do avoid people I know are sick/contagious and I wash my hands, but like I said - I have 3 kids and some germ catching is unavoidable - and I haven't gotten sick. I think it's a risk that is real, but as long as you are mindful you're going to be just fine. As for the cost - you can get help with that. There is a MY HUMIRA program and they will pay your co-pay up to $500/month. All you have to pay is $5. I'm dead serious. No catch, no income qualifications, nothing. You just have to call and sign up. It's awesome. That should help. It hurts pretty bad to get the shot, but it's not the needle, it's the medication. It burns and I hate it, but it's survivable. And it's worth it to feel better.

What does your gut tell you to do? (no pun intended) What are you leaning towards doing?
Posted 10/13/2010 11:14 PM (GMT 0)
I know humira is a scary drug. But I can see how you want to wait and the doc does not want to wait any more. I think both are logical questions.
Posted 10/14/2010 2:03 AM (GMT 0)
This is a tough one and only you can know how you feel. I have been in 2 spots like this before. The first time I listened to the docs and started Remicade. It made me better really quick, I got right off of the prednisone, and was flare free for several years and didn't have any side effects. (As far as long term side effects, still yet to come and see how that plays out, so far so good, my first infusion was 10 years ago and my last infusion was 4 years ago and no problems yet.)

The 2nd time I wasn't quite as sick but still a very bad flare. The Humira wasn't working and I was back on Prednisone for the 3rd time in 9 months. The doctor wanted me to stop Humira go back on Remicade, go on Cimzia or have surgery. This time I refused all of those options and continued on my current therapy of prednisone, sulfasalazine, and using alternative treatments and nutrition.

Now, the first time there is no way to know what would have happened if I hadn't done the Remicade but at that time I had been in the hospital, missed 2 weeks of work, and felt like I was on a dangerous path. The 2nd time something just told me that even though I was very unwell that the worst was behind me and this time the extreme measures weren't for me.

Both options have risks, but you know your body and have to do what you feel is best for you and your situation. I will say the 2nd time when I did more of it on my own and sticking with the medicine I was already on, it took a bit longer, it was not a quick fix, but 3 months later I am doing very well, down to 5 mg prednisone and feeling very good.

One thing I find is doctors see flares all the time that are out of control. They are taught to do what will get you well as quickly as possible. I think because I have been in the hospital a few times before and have an aggressive case the minute my doctor thinks it isn't a mild flare he pulls out the big guns because he is scared of what will happen if he doesn't. I have learned I have to take his suggestions and do my own research and really evaluate how I am feeling and what is best from me and then either agree with the doctor or state my case.
Posted 10/14/2010 2:50 AM (GMT 0)
thanks so much for the feedback so far. all is appreciated and truthfully just having my concerns out there for you all to read and comment on makes me feel better. i guess thats the benefit of a forum such as this.

I have not tried diets as I have not flared since I was originally sick when I was 20. At that time the crohns caused the usual problems (weight loss, anemia, ulcers, inability to eat, D etc) and i was hospitalized for months- but it also caused me to have blot clots in my brain and abdomin, bringing on seizures, memory loss and some slight brian damage (memory and speech were gone for weeks) which I regained. I know what can happen if I dont get my flare under control- it was so horrible back then that I think I have blocked some of it out. Later the blood thinners than they used to treat me for the clots caused my INR to get so bad that I bled out through my crohns related ulcers in my bowel and i was on blood tranfusions for a while until they could get me back under control. Then came the abcess/fistula, surgery,etc. I nearly lost my life twice due to CD but have been blessed with 12 years of hardly even thinking about it.

So I guess once they got all that stuff figured out, and imuran worked for me, I have never really had to think about dieting or medications or CD for 12 years... now I am no longer a student.... I am working and I have a child and I have so many different worries that I truely feel newly diagnosed.

To answer about which way I am leaning, I think I am leaning towards humira because I fear that the flare will come back again once pred. is weaned some more and I will risk a return of the clots and all those other lovely crohns symptoms.

What I am learning over the last few weeks is that we all have different but similar situations with this disease... and truthfully there is no set rule about treatment. I guess it comes down to a leap of faith at this point.

If imuran worked for me for so long maybe humira will also work. If not then I guess it's bye-bye colon. And so far it seems my CD is limited to the colon.

More rambling and sharing but I hope you don't mind... the pred. makes me even more chatty than usual and I do feel very much alone depsite all the support I do have at home and all my attempts to be positive.

Thanks so much and pls keep the comments coming if you have some to share. If anything u make me feel less alone.

B
Posted 10/14/2010 3:01 AM (GMT 0)
I also meant to add- Stef17 is MY HUMIRA a US program? I am in Canada...

B
Posted 10/14/2010 5:28 AM (GMT 0)
Stef17: I did a little digging and MY HUMERA is in the US and not Canada but I have found out that the remaining 20% my plan won't cover, will likely be covered by my local territorial government, so cost should not be an issue. :) I will have to pay up front but then submit my receipts for full reimbursement.

Thx again guys

B
Posted 10/14/2010 11:49 AM (GMT 0)
B - Holy cow!!! Blood clots and seizures???? You poor thing! I didn't even know that could happen with CD. Thank heavens for a 12 year reprieve! You are wise then to get right on this right away. The same thing will probably not happen again, but you certainly don't need the stress of wondering "what if" and it's always wise to jump right on a flare anyway. The faster it's under control, the better off you are.

I'm glad you found out the info about cost coverage. That is at least a relief knowing that if you decide to go with humira, you can afford it. My CD is in the colon as well and I have found that I get HUGE amounts of relief when I eliminate sugars and carby-stuff from my diet. That's the very watered-down version of the SCD - it's a very strict diet, but when I feel like I just can't do it all so strictly I cut out things like soda, cookies, obvious sugary food and I try to eat more proteins (eggs, meats, cheeses) and fruits and veggies. It sounds like one of those diets for people who are trying to lose weight, but I'm really just trying to keep out the things my body is not good at digesting. I just started doing this in July after being in a constant flare and it is helping a lot. I hate to sound like one of those cukoo's that get on their soapbox and don't shut up, but I have really found that making dietary changes helps. AND - it only costs the amount you'd spend on food anyway.

Stef
Posted 10/14/2010 12:39 PM (GMT 0)
Crohns comes with a higher risk of clotting- there are a few threads on here about it actually if u r interested. I think it is rare but know from experience it can happen. I was just unlucky enough to get the clots in my brain - fun times, and all the things that happened were caused by a severe crohns flare that went untreated for months (happened right after DX). I am otherwise a very healthy young woman... which also makes me think that Humira is the best way to go right now. However, I will also take a look at the diet you mentioned. I find that I crave salt, meat and cheese a lot since starting to eat again over the last week. Maybe my colon is trying to send me a message :)

Thx again

B
Posted 10/14/2010 2:31 PM (GMT 0)
Your cravings are more than likely from the Pred. It does the same to me. I think maybe the Pred has quieted things down and for "me" I think you should see if the increase dose of Imuran has started to kick in while on the Pred. Good luck!
Posted 10/14/2010 5:49 PM (GMT 0)
Yeah those Pred cravings are bad and I remember eating so much food when I was 20 and just outta hospital... doesn't seem as bad this time but I am still craving and eating (mostly crave ham and bacon!). Hubbie says he would like to take me to a buffet for a laugh... because generally I am not a meat eater. I see today I have regained 4lbs of the 10 I lost 2 weeks ago. So while I still have 36 gone, I am not really skinny or anything, I kept my Pred weight from 12 years ago all this time so I had it to lose. My hubbie is worried I will lose more because he has become accustomed to my puddin'! lol

Oh today I feel a bit better about everything thx in big part to this forum and though I haven't made up my mind 100% I am leaning more towards Humira. I guess it is about risk analysis at this point and I feel more and more strongly that I risk a bad flare if I dont take the next step...The Humira people called again today and I am starting to feel a little better about it. One thing I found strange was that the nurse left me her home # to call her back... does that seem strange to anyone else?

Thanks

B
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