Has 6mp instead of prednisone put anyone into remission?

I believe that someone said in the "I refuse prednisone" thread that she refused prednisone and used 6mp. And then it put her in remission? She said it took longer and possible put her in remission. I do not want to take prednisone either. I will ask my GI to put me on 6mp if it works. Has 6mp put anyone else into remission as well?

I believe that is what my doc has in mind.  With UC under control with prednisone at the smallest dose possible, adding 6 MP and going from there.  I have to call when down to 20 mg.

ElaineNY

How long did it take to put you in remission? 3 months? What kind of symptoms were you having? Blood, pain, diarrhea?

I am so sorry that you are having these problems. I hope you get better.

Before I started on 6mp, I couldn't get off steroid enemas. I was having quite painful D, abdominal pain and a lot of bleeding. I would say I was going to the bathroom about 6 times a day. At 7 weeks, things started slowing down and I was finally able to taper off the steroid enemas which I wasn't able to before. Around 3 months I noticed that literally overnight, I woke up and absolutely all my symptoms were gone, even the abdominal pain. While I wasn't on Pred, I was on the steroid enemas. But if you were to go on 6mp, you don't have to rely on steroids to keep your symptoms stable until it kicks in. There are other rectal meds you can try such as Rowasa or Canasa.

I'll answer you on here since the other thread is mostly about Pred.

I don't seem to have flares as bad as some people. The most trips to the bathroom I've ever had in a day was 10. My flares start out as normal formed bowel movements with bloody mucus on the poo. I go on like that for a while before the stool becomes more loose, and I have more bloody mucus. My last flare, I took Entocort for a total of 11 months at either 3 or 2 pills a day. My bone density was fine when tested. Because I was only having 5-6 bathroom trips and no pain, my doctor wanted to try Entocort for a long time to give it time to work. I later found out that Entocort can't help inflamation toward the end of the bowel because it doesn't make it that far. My flare eventually got to where I was having urgency and only having gas, mucus, and blood. The Entocort made me really gassy and gas pain was the only pain I really had. We also tried steriod enemas for a week and Canasa for a few months. Neither helped me get any better. As we approached one year in flare, my doctor started talking about 6MP. I didn't like what I read on the internet about it but he claimes to have many patients doing great on it without side effects. He also says he's never seen a case of cancer caused by 6MP. I started on 50mg and then was increased to 75mg. Dosage is based on your weight and how your body handles it. I have since lost 30 pounds but still can't convince my doctor to let me drop to 50mg. I'm hoping the weight loss isn't a signal of further medical problems b/c I didn't do anything different to lose it and it came off fast. There is also much debate on the use of 6MP during pregnancy. There have been a few threads on here about that too. At this point I feel I need to reduce my dose or even stop it, but I do not want to flare again because that leaves only Remicade. Don't know if my ramblings helped any but I know I always like to read and learn from other people's experiences too.

Mommy pooh said...
It took my 6MP 3 months but it can also cause other problems. Liver damage, pancreatitis, kidney problems, and other issues. I am worried that my 6MP is responsible for a condition called porphyria which is very rare and I'm currently trying to find a doctor that will treat me. I have been to 2 doctors so far and they keep sending me on because they don't know anything about this condition. I am currently waiting on an appointment to a research hospital with a hematology/oncology specialist. Will update for others for their knowledge because it seems like no one has experienced anything like this.

I was wondering if you could email me or talk to me more about this porphyria condition?

My aim is vin1382 and my email is [email protected]

I have been having unexplained fevers, diareha, fatigue, etc for about 5 weeks now.  it doesn't appear to be colitis/chrons based as my colonoscopy showed very mild proctitis. 

Vin

I was having real trouble around 7 years ago.  Pred didn't help and only made me feel weird emotionally and rotten about the moonface thing.  I started on 6MP and a month into it I was feeling much better.  That remission lasted about 6 years.  I didn't have any negative side effects from the 6MP (that I know about) and I would recommend it to anyone not wanting to go on Pred or having trouble with other meds.  about a year ago I had a very stressful time and a bad flare started and has continued through the year.  I've tried all sorts of things including Golimumab - with little change.  Funny enough, I was away in Bahamas over the last week and felt much better!!  Guess I just have to get away more often!  I hope if you do try 6MP that it works for you.  Good luck and good health to you.

Eliza

The stmptoms I'm having that led my urologist to run the porphyria level urine test are: dark (coke like) urine, weakness, fatigue, anxiety, mood swings/depression, times where I get very shaky, chest and muscle pain, hallucinations, and constipation. Other symptoms that are listed but I am NOT having are abdominal pain, skin problems, painful skin when in the sun, seizures, vomitting, fever, paranoia, rapid pulse and high blood pressure

The only thing I know about porphyria now is what I have read on the internet. It has been over a week and a half and I still haven't heard from the research hospital that was supposed to be getting me an appointment. I am now taking steps to try to get an appointment with the Mayo Clinic in Jacksonville, FL. Their web site actually talks about treating porphyria and the team of doctors that deals with that. My doctor's office is closed until March 2 for vacation so I did a form on the Mayo Clinic's website to get an appointment. It says someone will contact me within 48 hours. I will update when I have my appointment and know anything. Again, I am thinging that this is medication induced and not the most popular kind which is genetic.

Hi wishful - are you doing ok on the 6MP and 5 mg. prednisone.  I am tapering to 20 mg. tomorrow but have not been started on anything else.  Doc said to call after a couple days at 20mg.  He said before considering 6MP or something like that for maintenance.  Hope it is working for you.

ElaineNY

     Nostra...my GI doctor had me take the 6MP along with the prednisone.  It took about 3 months to "kick in".  I started the 6MP about five years ago.  I still get yearly flares...at least for the last three years I have.  Last year I was admitted to the hospital and my GI doctor took me OFF the 6MP because my pancreatic enzyme levels were through the roof.  about six days later, my enzyme levels had returned to normal.  I must mention that I was on prednisone when admitted.  At my first GI doctors visit after my hospitalization, about a month later, my GI doctor put me BACK on the 6MP but carefully monitors my blood.  He started me back at 75 mg but my WBC went down to 2.4.  Being a former lab tech, I was NOT happy with this low of a white count and lowered my dosage to 50 mgm.  The only adverse effects I notice is the thinning of my hair.  It isn't actually falling out, just getting thinner. 

     I've been in remission since Nov 1st.  Feel wonderful.  I get my blood drawn..CBC, monthly and see my GI doctor every three months.

i am confused....6MP seems to work miracles...but everybody says they ultimately end up flaring at some point. Why is that? I know there is no cure for our disease...but I feel like these drugs are all just temporary. I am just scared and sad right now.