Getting off Mercaptopurine and Prednisone

So I had my first flare starting a couple months ago. Took suppositories and enemas which provided no help. Went on Prednisone, which would pretend to help for a couple days and then completely give up for a couple days. Started on Mercaptopurine, which from what I've been told wasn't given enough time to start doing anything before I was admitted into the hospital. While in the hospital I was given IV steroids, which did the exact same thing as oral Prednisone... couple days of getting better, couple days of numerous full blown bloody BM's.

I have a friend with Crohns whom I had been speaking with about this, and his basic reaction to everything is that steroids never worked for him and that all his problems persisted until he got on Humira which immediately fixed everything. Excited at the possibility of this, my doctor and I decided I would start on Humira upon my discharge from the hospital.

Now, 3 weeks out from my stint in the hospital and just after taking my 2nd loading dose of Humira, I no longer have symptoms. I have 1 BM a day, no blood at all and completely formed. I am still taking Prednisone and Mercaptopurine, but want to stop.

So that is my question. My doctor seems to be on board with getting me off Prednisone and is currently tapering me off, but seems to also be very cautious about getting me off. I was taking 40mg a day when I left the hospital and am now down to 15mg a day. To me, Prednisone never really did anything and I want to be off it asap. From what I understand however, the taper off is pretty important and should go somewhat slowly. Is dropping 5mg per week, ie 15-10-5-0 realistic?

What I'm more worried about is the Mercaptopurine. My GI has expressed that he plans to keep me on it, but as far as I'm concerned it never did anything and it hasnt even had enough time to be effective. It is my belief that the Humira is doing all the work and Im just taking Mercaptopurine because it "could" be doing something. Are there many people on here who take Humira AND Mercaptopurine? Anyone just taking Humira? What do people think about me trying to get off of the Mercaptopurine?

Thanks for the input. As I said this is all very new for me. The response did fade a bit between my 1st and 2nd Humira injections, but to me that's just a sign that the Humira is doing a bulk of the work.

I think you're right though. Maybe I'll fully taper off Prednisone, see how things are off of it, and then try to get off the Mercaptopurine. In the end though, I feel like I'd rather try to get off Mercaptopurine and have to go back on it, than just stay on Mercaptopurine indefinitely because I'm being cautious. Not that you're saying I should do that.

Considering I've only been on Mercaptopurine for about a month, I would argue that it hasnt reached an effective level in my body yet and isnt even having an effect. Thus it should make no difference if I go off it!

Also from the Humira FAQ: "A rare type of cancer called hepatosplenic T-cell lymphoma, often resulting in death, has developed in some people. Most were male teenagers or young men with inflammatory bowel disease who were being treated with another medicine called IMURAN (azathioprine) or PURINETHOL (6‐mercaptopurine, 6‐MP)."

Post Edited (awesomecgreat) : 8/31/2015 4:07:09 PM (GMT-6)

I am leaning towards staying on it mainly because I'm scheduled to go on a trip out of the country in 3 weeks and I would hate for it to be ruined.

That it's a common dual therapy isn't a great reason to stay on both though. It certainly ads validity to taking both, but I think we'd all agree that the end goal is to be on the least amount of drugs that keeps us in remission.

Does anyone think the Mercaptopurine is actually doing anything considering I've been on it for about 5 weeks? If it's generally accepted that it's had no effect yet, and I'm essentially symptom free, I don't see the logic behind continuing to take it.

Through an upcoming vacation/holiday, I'd stay stable with your medications and not risk anything.

Yes, nobody wants to be over medicated, unnecessarily. However, a flare is always a risk whenever reducing medications. Some choose to stay at the doses and medications that got him/her into remission (minus prednisone) for that reason. Some schools of thought are reduce until you find what you really need. Both are legitimate.

Whether mercacaptopurine (6mp for short) is doing anything at this point, at 5 weeks it might have a small effect but doesn't reach full therapeutic range in most individuals until 8 to 12 weeks. There are blood drug tests (thiopurine metabolites) that can say whether you're in therapeutic range yet.

The better question is will 6mp be helping you at the time you've fully tapered off of prednisone? That tapering process takes weeks or months (by then you'll be in therapeutic range for 6mp). See if you're stable with humira and 6mp without prednisone for a month or so. Then, if you insist, slowly, slowly reduce your 6mp dosage. One change in 6mp dosage takes 6 weeks to register (6mp intentionally reduces/slows the production rate of white blood cells in your body but cannot remove those already within your bloodstream) . Just remember about flares and be hyper aware of regression and returning uc symptoms (if you see signs of blood, mucus, increased urgency or frequency then huge, waving, red flag) when you see them then you've gone too far, and need to add things back.

iPoop said...

The better question is will 6mp be helping you at the time you've fully tapered off of prednisone? That tapering process takes weeks or months (by then you'll be in therapeutic range for 6mp). See if you're stable with humira and 6mp without prednisone for a month or so. Then, if you insist, slowly, slowly reduce your 6mp dosage. One change in 6mp dosage takes 6 weeks to register (6mp intentionally reduces/slows the production rate of white blood cells in your body but cannot remove those already within your bloodstream) . Just remember about flares and be hyper aware of regression and returning uc symptoms (if you see signs of blood, mucus, increased urgency or frequency then huge, waving, red flag) when you see them then you've gone too far, and need to add things back.

This is what I'm worried about. By the time I'm off prednisone I'll be in the effective range of the Mercaptopurine, so surely my doctor will see this as indicative that the Mercaptopurine is keeping me symptom free. This will give him "proof" that I should stay on it. Then as you so aptly put it, I'll have to insist that I try to taper off, which will take what sounds like at least 6 months to a year. Or, I could just stop it now and have my question answered by the time I taper off prednisone.

It would be one thing if it I had been on Mercaptopurine for 3 months and then with the inclusion of Humira I achieved remission. But when I started Humira, slightly over 3 weeks ago, I had only been on Mercaptopurine for 2 weeks. Upon taking Humira I pretty much immediately started getting better in a linear progression to being basically symptom free as of a couple days after my 2nd dosing.

Post Edited (awesomecgreat) : 9/1/2015 1:24:58 PM (GMT-6)

6MP does not and will not put you in remission, so you have to use something else like prednisone to get you to remission while the 6mp gets fully in your system where it can then keep you in remission.

Ah, gotcha, perhaps I misunderstood. You can try for one medication only for uc. However, looking at most of our signatures here will underline the point that multiple medications are often necessary for uc. Can't hurt to try for one I suppose. Good luck to you, just don't rush to the one medication theory. Be slow, cautious, and accept that multiple medications might infact be needed, if it comes to it.

I'm willing to consider all types of different methodologies to achieve remission. It's not that I'm specifically looking to be on 1 drug, because if I was specifically trying to be on anything it would be NO drugs!

The reason I feel like being only on Humira is a possibility for me is because:

1) My best friend was diagnosed with Crohn's disease a little over a year ago and after trying a few steroids for a very short period with no luck, he went straight to Humira alone which put him in remission and he's had to take no other drugs since.

2) I went on steroids for a short period of time with no luck, and went straight onto Humira which has taken away all of my symptoms.

Its not that I refuse to be on Mercaptopurine or anything else for that matter... its that I dont think it's done anything to help me become symptomless, and if I can achieve remission with Humira alone I'd much rather do that. Conversely, if I could acheive remission on Mercaptopurine alone perhaps I'd rather do that...

I know you're excited and see a parallel to your uc case and you're friends crohn's case. Just be aware, no two cases of uc are identical (everyone responds differently and needs different medications and dosages in order to achieve remission) never mind a uc and crohn's case which are even more different. At face-level the cases appear similar (in that you both appear to respond to humira not steroids), but I would not assume both you and your friend have the same exact solution. I wish it was that easy, many of us suffer from uc and we'd all like a one size fits all solution.