Starting back on 6MP-- again

[Caldotis]

Hey, I have a few questions about starting back on 6MP. A little history: I was originally taking 75mg of 6MP for about 3-4 years (this was back in 2002) and it worked really well for me. Yes, I had side-effects. I was tired a lot, I caught more colds and the monthly blood draws to check my levels were a real pain to accomodate (I also noticed that I bruised quite a lot from those draws). But I didn't flare.

After 6 years of just being on Colazal, I started flaring up again about a year ago. I was on and off prednisone for months until I was taking a constant 5 mg of pred per day just to not flare. My GI wanted me off the prednisone so he prescribed me 6MP again (at the 75mg/day dosage). I've put off taking it for the last 5 months while I tried alternatives (the SCD diet). Despite some initial progress on SCD for the first 2 months, I'm now having 4-5 BM each morning along with the cramping/blood/mucus. I can just 'feel' the inflammation (people think I'm crazy when I say that, but I can just tell where it is and how inflammed it is).

I think that I've reached my breaking point. I'm wondering if maybe I should just start at taking 50mg/day of the 6MP and see if that will do it. Why? Despite the 'success' of 6MP years ago, I really wonder what effect it will have on my body. I'd prefer to take the lowest dose possible that will still have therapeutic effect. Also, I like to drink. No, I'm not an alcoholic or anything...but on the weekend I'd like to be able to have a glass of wine or two with my dinner. But 6MP can be harsh on the liver-- as can alcohol. And I don't want 6MP to be my 'forever plan'. I still believe (and hope) that I can find that 'magic' balance between medication, diet & lifestyle that doesn't fall too heavily on the medication side of things.

So I'm interested to hear any thought/advice you might have. Thanks!

 

[Patricia56]

My honest opinion is that you are probably going to need something like 6-MP until they find a cure. FWIW

I think you should have a straightforward discussion with your doctor about the reason you don't want to take 6-MP. He probably likes having a glass of wine on the weekend too and will completely understand. Perhaps there's an alternative that will meet your needs instead of 6-MP.

One possibility you could ask about is taking Allopurinol and Imuran instead. This combo is easier on the liver than straight 6-MP. I am not a doctor and can't say whether this would be enough to make it safer for you to drink at the same time but it's worth asking about.

I feel comfortable saying that not taking any meds at all is a recipe for disaster that makes drinking on 6-MP look safe.

Hope you work this out with the doc.

 

[Jennifer]

I have to agree with the above post that you should really discuss your feelings with your GI. Maybe a lower dose would work, maybe it wont do anything but they may be willing to try it out.

The thing is that you are in an active flare and not a mild one since you're bleeding. I fear a lower dose wont be enough and that perhaps trying what worked in the past may be best. This is coming from someone who has taken 6MP for ~15 years and am now taking 100mg of 6MP. As long as you keep up with the blood work, should there be any change in your liver, you'll know right away. The important thing now is to get the flare under control and maybe then you might be able to lower the dose or switch medications. Its all unknown at this point. I'd start by telling your GI that you haven't taken the 6MP since they prescribed it 5 months ago and let them know your symptoms have changed and that you're bleeding now. Who knows, maybe 6MP wont be enough now.

Keep us posted. Hope it does work for you.

 

[Caldotis]

Thanks for the advice. I have told my doctor that I didn't take the 6MP he prescribed. He was not at all pleased. He does not think the SCD diet is legitimate. He's told me many times that he feels diet has no effect on Crohn's. He tells me constantly that I'm lucky because I respond well to medication and that I don't have it 'that bad' (no surgeries, etc...)

I told my doctor all my worries about 6MP. His suggestion was that I could either do 6MP or Remicade, but the choice was mine. He recommends 6MP because it worked before. He knows that I'd like to be able to have a glass or two of wine a week... I'm pretty open with my GI. But sometimes fellow 'crohnies' have a much better insight into this disease than even doctors.

 

[Patricia56]

Perhaps it's time to bump up to Remicade then.

 

[Jennifer]

To me it would be better to take a pill that your body can filter rather than a medication that goes directly in with no chance of filtering. Its obviously your decision though. Do you feel like you're getting closer to making a decision? I'm just curious about what you're leaning towards.

 

[ThatsWhatSheSaid]

I'm curious too! Please keep us posted.

The doctor I saw on Monday at the Mayo Clinic in MN wants to start me on 6mp and Humira (I couldn't handle IV transfusion, so no remicade). He said that all the information out there indicates that the best odds of inducing and maintaining remission are with use of a 6mp and anti-TNF concurrently. I'm still nervous though. I was nervous to do even one 'big-gun' drug, much less two.

But I can't keep going on like this either. Anyway, the Mayo Clinic is at the forefront of research and education particularly their GI specialist which rank (I believe) in the top 3 in the US. So I also trust that he knows what he is talking about...

I am waiting to hear back about the MRI I had yesterday. I called at lunch and the nurse said there is a note in the system that the doctor is going to call me. Makes me a little nervous...I feel like usually when there is not much to be said about test results, the doctors just approve and hand off the information for the nurses to relay to the patient. I'm probably over-thinking things, as I am wont to do. Ehhh.....I hate the anticipation.

 

[Caldotis]

I decided to take the 6MP. I started taking the pills earlier this week. But I am already seeing some side-effects. Yesterday I slept 16 hours, I was soooo exhausted. I realized that I need to take the 6MP in the evening so I'm going to try that tonight (I had been taking it in the a.m.).

But today I feel very queasy and the idea of eating is not appealing at all. I'm worried that I might not take to the medication as well as I did years ago... Basically I'm just worried (something I always seem to be when my crohn's is flaring). Thanks for all the support as always. It's the one thing that makes me worry less

 

[Jennifer]

Some side effects do tend to go away with time. Hopefully those ones will and it will work for you.

 

[gew1345]

When you got off the 6MP for those couple of months, and then returned to 6MP, did that work well or you? Or is the 6MP now, no longer working for you're body anymore?

My sons doctor has told us to use the Specific Carbohydrate diet with 6MP. However the goal is to get off the 6MP eventually and just stay on the Specific carbohydrate diet.

I am attempting to get off 6MP this week and use only the Specific Carbohydrate diet for my son, however I feel worried that the Specific Carbohydrate diet will fail to keep away the flair ups with out 6MP.

If the specific carbohydrate diet does not work, can I just return to using the 6MP again? I am worried that my son will not be able to work for him when he returns to it again because he has been off 6MP for so long.

I dont want him to end up in the hospital.

My son has only been on 6MP for a month.

 

[ronroush7]

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I am going to tag Maya 142, my little penguin. Check out the section on the forum called Parents of Kids with ibd

 

[Maya142]

Yes, generally you can go back on 6MP. However, 6MP takes a long time to work- about 3-4 months. So if he really flares, you will probably need steroids in addition 6MP or EEN to induce remission, while you wait for 6MP to work.

Some kids are able to manage with just diet, but it's rare. Most kids need medications in addition to diet. Make sure your doctor is monitoring your son carefully when he goes off 6MP.

 

[my little penguin]

If he has only been on 6-months a month then it really hasn't had a chance to work yet
Is he is remission ?
Changing to a diet only option prior to being stable could make a flare worse
Does his GI JKNOW you stopped 6-mp and has the doctor discussed what risks would be involved if you stopped given your child's current state

I dont think a single parent here signs up for meds for the kids easily
And all of us want diet to work
Scd is very hard for kids most lose weight
A new study out shows scd does not heal the gut

http://www.crohnsforum.com/showthread.php?t=82366


And

http://www.crohnsforum.com/showthread.php?t=82033


Tagging pilgrim

 

[spursfan323]

aza was the best thing that happened to me and stopping it after a decade of peace and quiet was the worst thing that happened to me......