Imuran w/ allopurinol? Remicade? What's next?

I have an appointment with my GI next week and I'm trying to decide what to ask for.

I've been fighting UC (left-sided) for a few years and have slowly got worse as the standard treatments have been tried. Started with the standard mesalamines (Asacol, then HD, then added enemas...gave me bad leg cramps and made me feel bad) which never really helped much then not at all really. Prednisone is great for relief but side effects stink. Now on Imuran going on 5 months with no real signs of improvement.

The most relief I've had came from a 6-month run of prednisone, starting at 20mg and holding at 10mg for most of that time. Weaning off of it was miserable. So much so I requested seeing a cardiologist to make sure I wasn't having heart trouble. The pains in my legs and shoulders and feeling of a heavy weight on my chest were terrible. The cardiologist hooked me up to all his whiz-bangs, patted me on the head and told me I was fine, and said to come see him when I have a heart attack.

What improvement I *thought* I saw with the Imuran I think was the lingering effects of the prednisone. The benefits of the prednisone slowly dissipated long after I had stopped taking it. I would say even as much as 3 months after I stopped. So I think I may have mistakenly attributed any relief I had to the Imuran as I've been getting worse over time. As of last week I requested my GI allow me back on a short quick run of prednisone (20mg w/ 5mg steps every 5 days) to ease my symptoms until my next appointment (next week). I've had nausea and a want to vomit every morning while cleaning out the bowels for the day. All of the other non-pharmaceutical stuff that had helped in the past doesn't seem to be helping anymore...(VSL#3, L-Glutamine, Psyllium Seed powder).

After a lot of reading here I think I'm prepared for pretty much anything treatment-wise. I feel like I've even come to grips with surgery and in some ways welcome the relief, although I know that is not the next step in treatment. If other things the GI wants to try don't work I'm not particularly worried about surgery. I'm in my early 40s, happily married and stable, and even having a bag hooked onto me wouldn't change my life a great deal like it might for younger folks who are more active, or single, or otherwise feel that such a huge change in their body might affect their social and sex lives. My wife and I frequently remind each other that we're "stuck" with each other for the long term no matter what.

I am feeling a bit of pressure to change or advance my treatment at this point as the wife is planning a big trip/cruise in a year with our 5 year old. The whole Disney package...a day at the park then 3 days on the boat. It *should* be fun. I'm terrified that I'm going to ruin this trip with this disease and be stuck in a hotel or boat while they're out having fun. In this line of thinking I sometimes feel like an absentee dad because of parking myself on the toilet so much. All that aside, I have a timeline of a year in which I'm trying to either get in remission or get through surgery to get my life back.

My options as I see them are:
1) Talk about adding allopurinol to the Imuran.
2) Move on up to Remicade.
3) Ask for a referral to a surgeon.

My questions about the above options:
1) How long for allopurinol to kick in / How long do I give it before moving onto something else?
2) Same questions for Remicade. How long before I see results? It seems like many see improvement after the first two infusions. What is your experience?
3) Surgery opens a whole other list of questions I won't ask here. I honestly think, given my failure with the standards of treatment so far, this is where I'm headed. I'm okay with that. Bring on the relief.

I'm open to LDN but not so sure my GI is. Plus, maybe I'm being a little negative, but the off the wall stuff hasn't helped. I tried nicotine patches before...didn't help. I've tried many of the supplements...didn't really help. I'm glad some of these things have helped people. Honestly, I'm sick of wishing my life away and want to get back to living. That's why surgery doesn't scare me. I just want my life back.

Thanks for reading...and for any responses.

Brent

The several steps of surgery take a while and the final healing in and settling of the j-pouch can take some time too. IF you begin the surgery 6 months form now, it might be pushing it to be on an extended trip just 6 months later. Your wife should take this into account so as not to add to your stress.

As I understand the benefit of allopurinol is that it can shift the proportion of the two metabolites of 6-mp. The goal is to get more of the helpful metabolite. IF blood tests show that you are doing OK proportion-wise, then allopurinol may not add further symptom relief - it would mostly let you take less 6mp.

It is worth trying Remicade in my view. You should continue the 6mp so you don't develop antibodies. There are good odds of remission.

I got leg cramps from mesalamine too. It made trying to sleep really hard. But, I was taking Lialda which is fewer pills. By taking 3 instead of 4 and taking all 3 before breakfast, I avoided the nighttime cramps. It might be possible you could use some early morning mesalamine, and it would help a little too.

good luck

iPoop said...
1) How long for allopurinol to kick in / How long do I give it before moving onto something else? Allopurinol is another strong immunosuppressive medication that boosts the effectiveness of Imuran for those who have not reached therapeutic levels. Have you been tested to see if you've reached therapeutic levels? A few people here use it, but not many.

iPoop, thanks for responding. I've seen your tag a lot on these forums and your insight and information is very helpful. The only blood tests I've had since starting imuran is blood count and liver functions. Is the test to check the therapeutic levels another Prometheus lab test (read: expensive)? I'm not opposed to the cost but I think my GI got stuck holding the bag on the last one since he didn't get pre-approval from the insurance company. What did I know? I'm just some dumb guy with UC.

It seems to me that if the stuff isn't working and I'm not getting any relief then I have not reached a therapeutic level. But perhaps I'm misunderstanding what that really means. I'm already taking more than is generally indicated. When I started I weighed 220lb so he put me on 250mg per day. Then the prednisone weight started coming off and with the flaring, etc, I'm down to 200lb but he said to keep going at 250mg when I adivsed him of the weight loss. My bloodwork from 5 days ago just popped up on the computer this morning and all the blood counts were in normal range with no liver function issues. So at least my liver isn't angry...yet.

One of the frustrations I have, and my wife tries to keep me in check on this, is when I go to the doctor in a situation like this where whatever I've been doing isn't working and I feel like I've given it a chance and no changes or different strategies are presented. For the longest time with my first GI I would see him and tell him my problems were getting worse. His solution was to just keep throwing more mesalamine at me....which wasn't working. I decided to switch from him when his solution was to stop drinking coffee. Really? That's all you've got? I honestly don't think I've been out of a flare since this whole party started 5 or so years ago.

So next week when I go I want a change and a timeline. I'm ready for Remicade but will consider other avenues if they make sense and I feel they are forward progress. I think I would see him ordering a test to check therapeutic levels a waste of time at this point. It would be 2-3 weeks waiting for results. Two more weeks to a month to get an appointment with another GI since my guy is leaving the country for two months sometime next month. And seeing someone else means someone is going to see an opportunity for another colonoscopy since it's been a year since my last one. The last one was done by a new (to me) GI when I asked for a referral to someone more local. She performed the scope and when I went to her office for follow up they informed me that she was closing her practice and retiring. So I lost 5-6 months there. I wasn't happy. Maybe I'm just grumpy and it's time for a new scope. I'd love to see some improvement first, though, before I spend that time and money for folks to tell me that my insides want to be outsides. I know that already.

Thanks for listening to me vent. Mentally, I think I've held up pretty well through all of this but in the past few months some cracks are starting to show. It's nice to blow off a little steam here and know I'm not alone.

iPoop, how long have you been on the Remicade? Are you on imuran or 6mp as well? Any side effects? Any shortening of the timeframe of relief (i.e. Worked for 8 weeks starting out but need it every 7 weeks now)? On a personal level (if you feel like answering), if the Remicade stops working next week what is your next step?

ByeByeUC said...
Remicade has been a life saver for many people. It didn't help me but I gave it a try. That drug was my last option. I had J pouch surgery after that and I wish I had done it much sooner. I've been UC free going on 5 years now. If you're willing to give the remicade a try I woukd suggest that first. AND go for a surgery consult with a highly skilled/experienced surgeon to get all the info you may need and the facts in case the remicade doesn't work. If you have any questions about surgery please feel free to ask. Good luck.

Thanks Marianne. I have a feeling I'll be taking you up on that offer before too long. I am going to ask for a referral so both my wife and I can get an idea of what the next step might be if it comes down to it.

Btw, remistart can be extended indefinitely, I'm on my second year of remistart.

Yes going on allopurinol is pointless, unless Prometheus tests indicate you are unable to safety reach therapeutic levels without encountering toxicity issues with your liver. You are not.

I just got a call from my GI's office. They have put in orders for me to get a TB skin test and a chest xray in anticipation of beginning....Humira.

I asked the nurse why Humira all of a sudden after all the talk about Remicade. She said had talked to doctor about that before calling and said it would be best to talk to him at my appointment next week to go over my options. I asked if the testing prerequisites for remicade were the same and she said yes. They will submit a pre-auth to insurance for whichever medication after my appointment.

I had mentioned to his Physician's Assistant last month that I was basically happy to try any of the biologics and that giving myself shots was no big deal. So maybe she made a note of it and took it to mean I wanted Humira. Maybe it's something else.

Are there any symptomatic reasons that a GI would choose starting on one biologic instead of another? He seemed to make it clear from the start that he preferred Remicade so I'm just wondering.

Anyway, PROGRESS! :)

Just a bit about my experience on imuran and allopurinol. Firstly allopurinol is NOT an immunosuppressant. It is actually a non-toxic drug used for the treatment of gout as it reduces uric acid. It's function as treatment for uc is that it increases the effectiveness of azathioprine. For those of us that can't metabolise aza alone (approx 20 per cent of the population) then allopurinol can get our bodies to metabolise the drug via the correct pathway. My GI says it's actually safer to use a lower dose of aza with allopurinol than using a high dose of aza. As with allopurinol there is no risk of blood cancers or anything like that.

I've been on the combo since October and have had no side effects. It's also worked in getting me to a fantastic therapeutic level with aza and has almost eliminated the risk to my liver. I am now in remission with my uc thanks to the combo and it's fine to continue with it as a long term med. my GI wanted me to save the option of biologics and see if this worked first and it has.

I took allopurinol w ith 6mp but like ipoop mentioned, it is for specific cases. If you're not having trouble with high toxicity and low therapeutic benefit, it won't do anything for you. In my case, I didn't metabolize the drop properly so allopurinol helped. I had blood tests that showed I wasn't getting into the correct range for the medication to be effective. Without those tests, adding allopurinol is pointless. As for Humira, i think it's a good step in the right direction. I hope you have great luck with it. it sounds like you're in a good place regardless and you will come out with a positive outlook no matter what you face - that's a really great way to be