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have UC for 40 years, 6MP suggested by scared to use

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Ulcerative Colitis
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Posted 3/15/2009 9:43 PM (GMT 0)
I have had UC for 40 years generally have maintained good for a long time, running into some problems now and Dr. wants to try 6MP, afraid to use need feedback from other using this medication
Posted 3/15/2009 10:18 PM (GMT 0)

6MP is  a safe drug.  Back when I took it in the late 1990s there were some concerns about it's long term side effects but in the early 2000s they deemed this drug safe.  UCers take a lower dose than cancer patients.  Honestly, I never had any side effects from taking the drug and now 8 years after my last dose I have noticed no long term side effects.

Sue

Posted 3/15/2009 10:29 PM (GMT 0)
     Hi Molly...like the name, by the way.  I have been on 6MP for over five years.  Your GI doctor will want to monitor your white count as it will decrease.  The only time my doctor took me off the drug was when I suffered a major flare last year and when admitted to the hospital my pancreatic enzyme levels (amylase and lipase) were extremely elevated and he thought the 6MP was affecting my pancreas.  However, by the end of my hospitalization the levels had returned to normal.  The doctor placed me back on the 6MP about a month later with careful observations of my CBC and pancreatic enzyme levels.  My white count was very low 2.4, so I lowered my dosage from 75 mgm to 50 mgm and 25 mgm every other day.  I have my CBC drawn monthly.  I go to my GI doctor on Wednesday and it will be interesting to see if my white count has improved.  Your white cells are the ones that fight infection so I wasn't too happy with it being that low.  I feel good.  The only side effect from the 6MP is thinning of my hair sad .  Oh well, so I wear a wig..lol.
Posted 3/15/2009 10:53 PM (GMT 0)
     I just wanted to add one more thing Molly.  I was just reading through the posts and you mentioned about having your colon removed.  Well, I was extremely ill last year, a seven month flare...lots of bleeding, pain even down into my legs, diarrhea.  After I was discharged from the hospital I went to see a GI surgeon.  Well, he looked over my hospital records and said that he did not recommend surgery for me.  I have ulcerative proctitis.  He said that although I was suffering quite a bit that surgery was a last resort.  It took three months for the 6MP to kick in with the prednisone once my GI doctor placed me back on it but I am so grateful I waited it out.  See, with surgery comes another whole list of possible complications.  So, go the route of the 6MP and see if that helps.
Posted 3/16/2009 12:20 AM (GMT 0)
Thank you Christine 1946.  It was good to hear what you had to say.  I haven't been able to sleep over this.  I am so thankful for your positive feedback.  I am here in Northern California.  I am going to get another opinion at UCSF hospital.

Posted 3/16/2009 12:22 AM (GMT 0)
suebear thank you for writing me.  I am so grateful for your imput.  I am having a difficult time emotionally and am grateful for any help. 

Posted 3/16/2009 12:52 AM (GMT 0)

UCSF has a fantastic gastro program.  Good choice!

Sue

Posted 3/16/2009 2:29 AM (GMT 0)

Sue,

Because I hear this drug may lower white blood cell count, I work in a hospital and don't know too if this would affect my job working.  Do you know anything about this?  I have had weird effects to other drugs that don't normally affect others like Motrin, which one made me vomit for hours and also had an effect of throat closing due to half tab of ace inhibitor.  This is why I am so afraid of 6Mp and also its long time affect

Posted 3/16/2009 2:33 AM (GMT 0)

Again, I think because of our low dose for treating UC you don't have to worry so much about the immune system.  I was on 6MP for over 1.5 years and never caught even a head cold.  You will want to share your history of side effects with your GI.  But I don't think you need to worry about compromising your immune system.  Are you seeing Dr. Varna?

Sue

Posted 3/16/2009 4:02 AM (GMT 0)
Is Dr. Varna a UCSF dr.  No, that is not his name it begins with a T and is a long name, I can't remember.  I was supposed to see him a long time ago, but at the time I was supposed to go I had herniated 4 discs in my back.  I was going to have to have possible surgery but went to a spine rehab for decompression and core buildup for the last 6 months, finally am able to sit in the car and go the distance to UCSF.  The only time I was ever hospitalized with my colitis was when I was first diagnosed at 17.  I have a colonscopy every year since then.  A lot of scopes.  It is really the proctitis that is causing most of the problems with some bleeding, not a lot to affect my labs and the feeling of having to go to the bathroom even if it is really nothing.  Most of my problems affect mostly in the morning time, take Colazal, taking a round of prednisone right now, if I take a lomotil, things usually calm down.

Posted 3/16/2009 11:19 AM (GMT 0)
I too take 6mp...a higher dose than most because i have the HLA-B27 gene (apparently to slow the disease down and stop it from spreading through my body)...have been on the drug for approx 6 months and have started to flare so thankfully have a specialist appointment on Wednesday ...you will need to have regular blood tests and stay out of the sunshine I hope it works for you
Posted 3/16/2009 2:40 PM (GMT 0)
Hi there to New Zealand, thanks for writing.  I am wondering too if I am starting to develop iritis, what is that like? Is it an eye itching problem.  Did 6MP work for you?  Much side effects for you? 

I hope all goes well with your drs appt.

Posted 3/16/2009 2:43 PM (GMT 0)
suebear

You mentioned that you didn't have much side effects from 6MP, but did you notice it significantly helping you?

Molly
Posted 3/16/2009 2:58 PM (GMT 0)
No. I was given 6MP to get off prednisone. It didn't work in my case and back then that was the last drug for UC. I opted for surgery when it became apparent that I was not responding to treatment.

Sue
Posted 3/16/2009 3:00 PM (GMT 0)
Suebear,

Was looking into the J pouch surgery, that sounds like it was the answer to everything, maybe the way to go instead of trying 6MP, or would you say give the 6MP a shot first? So don't know what to do. Hard choices to make after all these years...MollyMcB
Posted 3/16/2009 3:10 PM (GMT 0)
I don't know if it was this site or another, but really didn't find too many if any that this drug really helped, seemed like more with side effects than anything else. Does anyone have any positive reactions using 6MP that it really helped them?
Posted 3/16/2009 3:17 PM (GMT 0)

Hi Sue,

Would you be willing to share your experience with the J pouch.  How well pleased you are with it or more of a headache.  Did you recover quickly without any problems?

suebear said...
No. I was given 6MP to get off prednisone. It didn't work in my case and back then that was the last drug for UC. I opted for surgery when it became apparent that I was not responding to treatment.

Sue

Posted 3/16/2009 3:44 PM (GMT 0)
Jpouch surgery was the best health decision I have made to date. I am an avid hiker and backpacker and since having surgery have accomplished several 100-200 mile international hikes as well as trips in and out of the Grand Canyon and an 80 mile hike on the John Muir trail. It's not perfect but it's far better than living with the unpredicatbility of UC as well as with the UC drugs. I have never seen my GI since surgery and have been in the best health for the past 8 years. I have never regretted my decision and feel fortunate that 6MP was the last drug of choice because I would have tried ANY drug to get in remission.

Sue
Posted 3/16/2009 3:50 PM (GMT 0)
Did you have your surgery in a two part stage?  DId you have it done laprascopily.  How long to take to recover to be able to work or do anything

suebear said...
Jpouch surgery was the best health decision I have made to date. I am an avid hiker and backpacker and since having surgery have accomplished several 100-200 mile international hikes as well as trips in and out of the Grand Canyon and an 80 mile hike on the John Muir trail. It's not perfect but it's far better than living with the unpredicatbility of UC as well as with the UC drugs. I have never seen my GI since surgery and have been in the best health for the past 8 years. I have never regretted my decision and feel fortunate that 6MP was the last drug of choice because I would have tried ANY drug to get in remission.

Sue

Posted 3/16/2009 4:32 PM (GMT 0)
Yes, I had a traditional open 2-step open by the best surgeon on the west coast. I went back to work 3 weeks after my first surgery, worked for 5 weeks and went back for my reversal. I stayed home an additional 3 weeks after the second surgery. I got back to walking and hiking immediately. I hiked with my ileostomy (not well as it filled very quickly with exercise) but by 6 weeks post the second surgery I was able to walk 10 miles at a stretch. I went camping six weeks after my reversal, traveled through Europe 3 months post surgery, and did a half marathon a 6 months post surgery.

Sue
Posted 3/16/2009 5:56 PM (GMT 0)
I have positives and negatives about 6mp. I started taking it little over 2 years ago. At first it was wonderful. I was finally in remission after flaring for a year. I was steroid enema dependant which is why my GI put me on 6mp. I was doing really good for a while, sure I had the typical start up side effects such as nausea, headaches, fatigue but that didn't last long - maybe a month or so. My daughter then gave me a stomach virus and I was thrown into a flare. Now my 6mp seems to do weird things. It like it's keeping me at a low simmer from flaring. I have been tested and I found out that I am at the low end of the theurpeudic(sp?) level and I can't raise my dosage anymore due to possible liver toxicity. BUT due to 6mp, I haven't seen any active Uc bleeding in a while. I can say that 6mp has kept me out of the more severe flares but it didn't keep me completely flare free. My GI seems a bit disappointed that I am not responding as well as he hoped. He has even brought up the option of Remicade once but I vetoed the idea. Personally I would rather have surgery then be put on Remicade. I haven't had Uc as long as you but I am getting tired of fighting this beast after 16 years.
Posted 3/16/2009 6:25 PM (GMT 0)
Thank you Sue for being patient and answering my questions and anyone else who wrote about 6MP thank you.  Today has been a particularly difficult day with depression I hope my doctor bears with me about my fear and phobias about starting 6MP.  I know I need to trust him, but this is such a huge step after all these years.  So anyone else who has any 6MP input would be glad to hear about it.  Thank you again Sue....Molly

suebear said...
Yes, I had a traditional open 2-step open by the best surgeon on the west coast. I went back to work 3 weeks after my first surgery, worked for 5 weeks and went back for my reversal. I stayed home an additional 3 weeks after the second surgery. I got back to walking and hiking immediately. I hiked with my ileostomy (not well as it filled very quickly with exercise) but by 6 weeks post the second surgery I was able to walk 10 miles at a stretch. I went camping six weeks after my reversal, traveled through Europe 3 months post surgery, and did a half marathon a 6 months post surgery.

Sue

Posted 3/16/2009 6:31 PM (GMT 0)
Thank you for your feedback.  It's great to finally have people to talk with about this

Red_34 said...
I have positives and negatives about 6mp. I started taking it little over 2 years ago. At first it was wonderful. I was finally in remission after flaring for a year. I was steroid enema dependant which is why my GI put me on 6mp. I was doing really good for a while, sure I had the typical start up side effects such as nausea, headaches, fatigue but that didn't last long - maybe a month or so. My daughter then gave me a stomach virus and I was thrown into a flare. Now my 6mp seems to do weird things. It like it's keeping me at a low simmer from flaring. I have been tested and I found out that I am at the low end of the theurpeudic(sp?) level and I can't raise my dosage anymore due to possible liver toxicity. BUT due to 6mp, I haven't seen any active Uc bleeding in a while. I can say that 6mp has kept me out of the more severe flares but it didn't keep me completely flare free. My GI seems a bit disappointed that I am not responding as well as he hoped. He has even brought up the option of Remicade once but I vetoed the idea. Personally I would rather have surgery then be put on Remicade. I haven't had Uc as long as you but I am getting tired of fighting this beast after 16 years.

Posted 3/16/2009 10:15 PM (GMT 0)
Hey Molly....Sorry for the delay in replying...(its this time difference thing)....6MP worked well for 6 months for me...Its certainly worth a try....As long as you have your blood tests so your doctor can monitor your levels....I do get nausea but remember I am on a higher dose than usual....You need to make sure you dont spend too much time in the sun....let us know how you get on wont you?
Posted 3/16/2009 10:21 PM (GMT 0)
I forgot to say .....Molly the Iritis isnt to be taken lightly...I started out with a sore left eye and it was a little red and felt tired....for a couple of days ..then I woke up and I couldnt see properly out of it..I was tld if this is to happen again not to go tot he doctor ...but to go immediately to the hospital...it can cause blindness
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