HealingWell
Search Close Search
☰

Time to add 6-MP - experience, etc.??

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/26/2009 12:30 AM (GMT 0)
Well, today the doctor called he is adding the 6-MP I have been expecting.  I will start it Saturday.  I have been on prednisone - 40, 30, each one week and now 20 mg. for one week and until March 16 when I see him.  He is adding 6-MP, 50mg.

I have read a TON of material online, this forum, etc. and know (like all other medications) the side effects and long range effects CAN be bad.  Prednisone has me feeling the best in almost a year - so loving that for now.  As far as long term - I am almost 69 so not concerned about too much.  I have great bones, liver, etc.  My only problem is osteoarthritis mostly in knees and controlled hypertension.  I really need a knee replacement.  I read one place where I might have to go off the 6-MP for that - I sure hope it can be arranged.

I NEED new knees!

Love to hear especially good reports and/or anything special to "look" for when starting out.  Any experience with surgery or illness. 

Thanks, ElaineNY

Posted 2/26/2009 1:23 AM (GMT 0)
My son took 6-mp a few years ago and couldn't tolerate it - white count dropped too low and his liver tests showed distress (we only knew this from blood work - he had no noticeable side effects), but he tolerates azathioprine (Imuran/Azasan which is similar to 6-mp) no problem.

My 10 year old daughter has been on 6-mp for 18 months now with no problems and no noticeable side effects.

I know what you mean about long range concerns. I cried when I had to put my kids on these drugs, but what am I to do? Tough decisions!!! Both my kids are doing well at this time.

I hope it works for you and that you have no problems with it. On the advice from this board, my kids take their 6-mp/Azasan with dinner for the least likely side effects.
Posted 2/26/2009 2:31 AM (GMT 0)
6mp was my miracle drug! I was flaring every year until I went on it and then went into remission for 4 full years. It was wonderful. My only side effect was sensitivity to sun. Good luck!
Posted 2/26/2009 2:43 AM (GMT 0)
hi there. i have been on 6-MP for about a month...no results yet, but i know it can take longer to work.
in the middle of a long bad flare...prednisone doesn't seem to be working anymore.
I was on asacol also, but my doc pulled me off quick because my liver functions were wacky due to the asacol/6-MP combo.
now that i'm off of asacol levels are returning to normal.
no other side effects that i have noticed.
just waiting for the 6-MP to kick in so i can get involved with life again!
good luck with you decision!
Posted 2/26/2009 3:12 AM (GMT 0)
I'm sure you've read my history of 6mp - been on it for over 2 years. It has helped me tremendously but not what I expected. I still have minor symptoms and I do still flare, just not as bad as before. You might want to take it night so any side effects won't be noticable or as noticable. Expect the side effects (if you have any) to start after the first week and last about a month or so. The most noticable is fatigue and headaches.

As for surgery, I have had a couple of surgeries while on 6mp and I had no problems with healing or anything whatsoever. Of course, I haven't had a major surgery such as knee replacement but mostly what you read online states that in these cases, the dosages are much higher then what we take for our Uc. I say just discuss this with your surgeon and see what he/she says when the time comes.
Posted 2/26/2009 3:01 PM (GMT 0)

Thanks all and "red" - the nurse said take it with the prednisone in the morning but I have read here that evening is better (in a couple of posts).  If it does not make any difference in how it "works" I am wondering which would be best for me.  Maybe I will call the nurse back.  What would it help taking in evening - fatigue?  Prednisone has kept me so "up" - hate for that to change.  Anyway,  trying it - just don't have a lot of other choices left for me.

ElaineNY

Posted 2/26/2009 3:09 PM (GMT 0)
When I first started taking it, my GI said to take it in the morning. I found that I just couldn't function. I was so tired and had major brain fog. So then, by suggestion of members here, I started taking it at night and the fatigue wasn't as bad because I slept thru most of the side effect.
Posted 2/26/2009 4:45 PM (GMT 0)
Been on it for awhile. It got my daughter off the pred., which was a major goal. Only side affects were hair loss at the high doses, but all else was fine. Don't really know how bad she would have been without it, as she wasn't doing great on it. The Remicade has kicked in, and she is finally feeling relief. Still on 6mp alternating doses of 50 and 75 mg. Good luck with the 6mp, and do the tests required to keep checking your levels. It does take a few months to kick in.
K
Posted 2/26/2009 6:03 PM (GMT 0)
Hey hun!
I would def. recommend taking it at night. I have been on it since January 20th when I got admittted to the hospital. I just got off the prednisone yesterday. Unfortunately I am not yet in remission. I am trying NOT to get discouraged through. Its been over a month but I heard it may take up to 3 months to work. Your immune system gets shot so you need to be careful when you are around other sick people.

I wish I had more advice but I am very new to this drug as well.

:) Good Luck!
Posted 2/26/2009 6:23 PM (GMT 0)

Thanks!  I am checking with my NP to be sure night is ok.  Online it says to take on empty stomach - do you?

Sorry you are not in remission but this is sometimes a very slow process as we see here on this forum - if it is going in the right direction that is what counts.  Prednisone has put me nearly in remission but I am aware it is still around - lurking! I feel so much better I hate to think of upsetting the applecart as they say.

  As for being around sick people I am careful now as my husband has lung cancer and I don't want to give him anything!  I hardly EVER have a cold or anything so I am hoping it continues!!

ElaineNY

Posted 2/26/2009 6:24 PM (GMT 0)
That's not necessarily so Wishful - about the immune system. It CAN lower the white blood count but it doesn't mean it will. That is why we have frequent blood tests so we can avoid this. We do have to be a bit more careful around sick people but not neurotically so - just extra precaution. Also we have to be careful we don't cut ourselves because not only can we heal slower we are more prone to infection. However this all depends on how low our WBC drops. I will keep my fingers crossed and hope that the 6mp kicks in for you soon - hang in there and don't give up hope! :)
Posted 2/26/2009 6:29 PM (GMT 0)

You talk about cutting and bleeding and healing so looks like that could cause a problem with knee replacement.  Maybe I would have to go off it for a while.  I want the knee replacement so bad in April - maybe I should put off the 6MP.  Geez, this is hard!  Just go by what my two doctors say - they ARE the experts!  My knee surgeon has 25 years or more experience so I am sure this has come up before.

ElaineNY

Posted 2/26/2009 6:37 PM (GMT 0)
Elaine, can you call your surgeon and just ask him whether or not you should start this med before the surgery?
Posted 2/26/2009 6:53 PM (GMT 0)

I am seeing him on Tuesday.  He approved using prednisone already.

Putting in a call to gastro nurse - easier to get to - and see what she says about delaying 6MP until next week also.  I am still on 20 mg. prednisone and it is working so seems like a few days would not make a difference. Just talked to nurse and she said doctor said 'start it immediately" so I will and deal with surgeon and knee surgeon when/if it happens.  Seems like my knees have been in pain for years and UC control is so much more important to me - to most anyone! Nurse also said no problem taking it at night - do you take on empty stomach or with dinner?

Thanks so much - just having someone to talk to that has some knowledge helps for me to decide about calls, etc.

ElaineNY

Posted 2/26/2009 8:08 PM (GMT 0)
I eat my dinner around 5pm and I go to bed at 10pm. That is when I take the 6mp. I might still have food in my stomach from dinner when I take mine. I've been doing that for 2 years with no troubles. Oh wait, I do remember my GI mentioning to take it with food to prevent nausea.
Posted 2/26/2009 8:58 PM (GMT 0)
     Hi Elaine....you know I have been on 6MP for several years now.  It hasn't kept me out of flares and the doctor took me off it for about six weeks last May because my pancreatic enzyme levels were extremely  high when I was admitted to the hospital and he thought it was because of the 6MP.  I really don't know what caused that because my levels returned to normal within a week and even after he put me back on the 6MP they have remained normal.

     Ooops...forgot that you shouldn't drink while on 6MP.  I have been a bad girl and every time we go to Atlantic City (every week), I have a mudslide ..one drink per week.  They are so good.  I better cut it out to be safe though.  Haven't had my liver function tests done for a few months.

     I cut my 6MP down to 50 mgm one day and 25 the next because my white count was WAY down....2.4.  I don't care whether my GI doctor was concerned or not...I sure was.  It still is working.  I take 6 Colazal a day....no enemas or suppositories and I eat anything I like within moderation.  I do stay away from spicey and fried foods.

     If I may ask...if you are doing well tapering with the prednisone, why is he putting you on the 6MP?  I couldn't get off the prednisone without flaring and that is why my GI doctor put me on the 6MP.

Posted 2/26/2009 9:04 PM (GMT 0)

I understand that the 6MP is for maintenance since I can't take or use any mesalamine medications or enemas, etc.  I know he wants to lower my prednisone and probably get off it - not sure.  I am still on 20 mg. and doing ok but UC is still there and have my bad and good days.  Since 6MP take a while he said you start on it while tapering.  Timing must be important.  I am just so happy no bleeding since Feb. 11!!  Doc may have a few concerns as I have had hepatitis years ago and also fungal infections (skin/outside my body).  Not sure.  I will compile more questions for him on March 16.

By the way, I gave up alcohol years ago!

ElaineNY

Posted 2/26/2009 9:18 PM (GMT 0)
     Okay...it takes about 3 to 6 months to "kick in" while in conjunction with the prednisone.  I'm really not a drinker either....but I do enjoy that mudslide..lol.
Posted 2/26/2009 9:24 PM (GMT 0)
Christine - I have to tell you sometimes when I am really feeling bad and my husband who had lung cancer is having a bad day - one of us will say what we need is a good stiff drink of something like Jack Daniels and then we just wouldn't care - haa haa!!  We try really hard to keep our sense of humor around here.

Posted 2/27/2009 4:35 PM (GMT 0)
Every time I mention 6 mp, I worry about jinxing my son.  Anyway......MIRACLE DRUG. He has his blood tested regularly, and once in a while he gets a little nauseas, but he is in complete remission.  It took 6 months, but he finally got there. He has been great for 6 months, and I pray it continues. I am the happiest Mom ever:) Good luck to you.

Posted 2/27/2009 4:59 PM (GMT 0)
Thanks UC MOM - picking up the 6 MP today.  Hoping I have the same results as your son - you never know.  Can only try!  All mesalamines made me very sick but I tried!  Next hurdle will be knee replacement.  Seeing surgeon on Tuesday to find out about it and the medications for UC.

ElaineNY

Posted 2/27/2009 7:02 PM (GMT 0)
     Elaine, what dose are you starting at with the 6MP?  He had me on 75 mgm but my white count went down to 2.4.  I remember my GI doctor telling me just last year when I took 50 mgm of 6MP and my white count was 3.5 that he didn't want it lower than that!  So I wonder why he wasn't concerned with it being at 2.4!!!  Well, I AM concerned and lowered it myself to 50 mgm one day and 25 the next.  Been doing that for three months and still in remission.
Posted 2/27/2009 10:00 PM (GMT 0)

Starting on 50 mg. a day - tomorrow.  Taking it with my prednisone at breakfast as instructed.  NP told me if I have a problem I can take it at night - but starting it tomorrow.  What time of day do you take it?

ElaineNY

Posted 2/27/2009 11:13 PM (GMT 0)
     I take it with lunch.  I don't think it makes any difference what time of day you take it.
Posted 2/28/2009 12:10 AM (GMT 0)
i take 1 pill in the am and 1 in the evening. i also split my pred into two doses same times...
✚ New Topic ✚ Reply
123