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Posted 3/17/2009 6:52 PM (GMT 0)
I have read the comments people have written back which has helped some, but if anyone else has anything to add please let me know as tomorrow is the day that I am to start mine and stomach is in knots over this.  Thanks for any help you can give and thanks to those who already have...Molly McB
Posted 3/17/2009 6:53 PM (GMT 0)
Don't know if I said this is regarding the 6MP use...Molly McB
Posted 3/17/2009 8:54 PM (GMT 0)

I'm taking 6MP since four months now. I started out on 75 mg, but after my blood tests have been so bad and I had unbearable side-effects, I am now on 50 mg a day. If someone would ask me whether I opted for 6MP again with all the side-effects, I'd say yes.

The big "PRO" is that it has put me into remission after almost 6 months of a bad bad flare. The "CONS" are that it makes me so tired and exhausted; I often get dizzy and get dull headaches that last days; my hair has thinned out tremendously; I developed rashes and skin problems, most prominent on my most visible part - my face (that is a vanity thing though); I don't have much energy, esp. when it comes to physical activity like exercising. Heck, sometimes it wears me out to clean the bathroom or chase after my dogs. I also do not like to have my blood drawn so often to test liver enzymes and CBC (complete blood count), but I need to know where I stand on these things. Another thing is that I have gotten very depressed. I have never been so depressed my entire life and I don't know whether 6MP causes this, but it is a possibility. Something else? Let me think ... I need at least 10 hours of sleep per night, otherwise I feel like poop.

All in all, taking 6MP is worth it for me. When I think about the symptoms of colitis on one hand and the side-effects of 6MP on the other hand, I vote for 6MP. I can go out and do stuff, have a social life and function much better, even when I am fatigued, but at least I don't have any pain and need to run to the bathroom several times a day.

Just give it a fair try - you can always stop it if it doesn't agree with you, but you really don't know how good or how bad it is for you unless you tried.

Keeping my fingers crossed and hang in there!

P. S. I take it in the evening - it turned out to be a great sleeping aid for me! Never had a better/deeper sleep than on 6MP.

Posted 3/17/2009 9:28 PM (GMT 0)
     Don't be afraid to start 6MP.  I've been on it for over five years.  The only thing I noticed is the thinning of my hair.  I have to be honest to tell you that I still get yearly flares.  The GI surgeon I consulted in addition to my regular GI doctor told me that he believes my UC would have traveled throughout my colon had it not been for the 6MP.  I have ulcerative proctitis.

     So, all in all, the pros far outweigh the cons.  I don't have all those side effects that Scarlett described.  I did decrease my dosage to 50 mgm from 75 mgm because my white count was down to 2.4.  This I did on my own.  Being a former lab tech, I wasn't comfortable with such a low white count.

Posted 3/17/2009 10:07 PM (GMT 0)
THank you for your feedback.  So are you saying then even on the 50 mg. the side effects as far as having fatigue, do you think working then would almost even be not possible and what about nausea has that been a factor also.  Did these side effects start the moment you took the first dose like I will be tomorrow.

Scarlet504 said...

I'm taking 6MP since four months now. I started out on 75 mg, but after my blood tests have been so bad and I had unbearable side-effects, I am now on 50 mg a day. If someone would ask me whether I opted for 6MP again with all the side-effects, I'd say yes.

The big "PRO" is that it has put me into remission after almost 6 months of a bad bad flare. The "CONS" are that it makes me so tired and exhausted; I often get dizzy and get dull headaches that last days; my hair has thinned out tremendously; I developed rashes and skin problems, most prominent on my most visible part - my face (that is a vanity thing though); I don't have much energy, esp. when it comes to physical activity like exercising. Heck, sometimes it wears me out to clean the bathroom or chase after my dogs. I also do not like to have my blood drawn so often to test liver enzymes and CBC (complete blood count), but I need to know where I stand on these things. Another thing is that I have gotten very depressed. I have never been so depressed my entire life and I don't know whether 6MP causes this, but it is a possibility. Something else? Let me think ... I need at least 10 hours of sleep per night, otherwise I feel like poop.

All in all, taking 6MP is worth it for me. When I think about the symptoms of colitis on one hand and the side-effects of 6MP on the other hand, I vote for 6MP. I can go out and do stuff, have a social life and function much better, even when I am fatigued, but at least I don't have any pain and need to run to the bathroom several times a day.

Just give it a fair try - you can always stop it if it doesn't agree with you, but you really don't know how good or how bad it is for you unless you tried.

Keeping my fingers crossed and hang in there!

P. S. I take it in the evening - it turned out to be a great sleeping aid for me! Never had a better/deeper sleep than on 6MP.


Posted 3/17/2009 10:09 PM (GMT 0)
I am so grateful to all who have written back. I also work in a hospital and wonder if I will be able to continue to do so.  I have never fretted over something so much as this.  I will be having monthly labs so hope this will be enough to keep things on track.

Christine1946 said...
     Don't be afraid to start 6MP.  I've been on it for over five years.  The only thing I noticed is the thinning of my hair.  I have to be honest to tell you that I still get yearly flares.  The GI surgeon I consulted in addition to my regular GI doctor told me that he believes my UC would have traveled throughout my colon had it not been for the 6MP.  I have ulcerative proctitis.

     So, all in all, the pros far outweigh the cons.  I don't have all those side effects that Scarlett described.  I did decrease my dosage to 50 mgm from 75 mgm because my white count was down to 2.4.  This I did on my own.  Being a former lab tech, I wasn't comfortable with such a low white count.

Posted 3/17/2009 10:38 PM (GMT 0)

Hey Molly McButter (love the name!),

no, I didn't have side-effects from the first day I took it - maybe tiredness and a strange feeling in my stomach. The heavy side-effects came much later - the longer I took 75 mg, the worse the side-effects got.

I forgot to mention that the side-effects have gotten tremendously better on 50 mg and I apologize for that. There is hardly any nausea anymore, but I am pretty much tired most of the time. Working is possible. You should just be careful, because 6MP may suppress your immune system and you can basically catch everything that goes around with ease (stomach bugs, colds etc.). I have never gotten anything so far - knock on wood! I just use hand sanitizer a lot and refrain from touching anything anywhere when not at home (door handles, shopping carts at the grocery store etc. - and these I sanitize with wipes, better be safe than sorry!).

about the nausea: I actually was able to avoid it most of the time when I ate a sufficient amount of food with my 6MP. Others say that taking it right before bed makes them sleep through the nausea. It never gotten so bad that I threw up, but I was close sometimes. I don't mean to scare you. I personally think that the key is not to take it on an empty stomach.

And by the way, I just heard back from my doctor and my blood work came back normal. Another proof that 75 mg was too much for me and things smooth themselves out on 50 mg ... phew!

I just saw that you work at a hospital. That sounds like as if you have easy access to sanitizing everything and a sterile workspace or am I wrong?

Don't worry too much - just go with the flow! The lab work will keep tabs on things going on in your blood and with your body. Just don't skimp on blood tests. I hate to constantly show up for blood work, but that is just a small price to pay compared to be not monitored on 6MP.

Best of luck!

Posted 3/17/2009 11:09 PM (GMT 0)
Hi Scarlet, thank you for your advice and good wishes.  I would say hospitals can be a very dangerous place to be.  I know people get the idea because it is a hospital everything is so sanitized but there are a lot of very serious bugs to be caught in a lot of different places and the hospital in no exception.  My Dr. said it won't be a problem, so who knows.  I was due to go to Lake Tahoe coming up, but now wonder do I go in the crowds of these casinos.  It is making be double think everything I do, and I don't like that.  I am glad that 50 mg. has worked better for you and I truly hope things as far as fatigue will also get better.  I understand the thing about depression as I suffer from that already and wonder how much this will all add to it.  It's funny after having ulcerative colitis for 40 years you kind of know how the day will be but it is what you are used to after all this time, this is something so different for me and so much more (in my head) difficult for me to deal with.  I guess like you say, all you can do is try and hope for the best...MollyMcB

Scarlet504 said...

Hey Molly McButter (love the name!),

no, I didn't have side-effects from the first day I took it - maybe tiredness and a strange feeling in my stomach. The heavy side-effects came much later - the longer I took 75 mg, the worse the side-effects got.

I forgot to mention that the side-effects have gotten tremendously better on 50 mg and I apologize for that. There is hardly any nausea anymore, but I am pretty much tired most of the time. Working is possible. You should just be careful, because 6MP may suppress your immune system and you can basically catch everything that goes around with ease (stomach bugs, colds etc.). I have never gotten anything so far - knock on wood! I just use hand sanitizer a lot and refrain from touching anything anywhere when not at home (door handles, shopping carts at the grocery store etc. - and these I sanitize with wipes, better be safe than sorry!).

about the nausea: I actually was able to avoid it most of the time when I ate a sufficient amount of food with my 6MP. Others say that taking it right before bed makes them sleep through the nausea. It never gotten so bad that I threw up, but I was close sometimes. I don't mean to scare you. I personally think that the key is not to take it on an empty stomach.

And by the way, I just heard back from my doctor and my blood work came back normal. Another proof that 75 mg was too much for me and things smooth themselves out on 50 mg ... phew!

I just saw that you work at a hospital. That sounds like as if you have easy access to sanitizing everything and a sterile workspace or am I wrong?

Don't worry too much - just go with the flow! The lab work will keep tabs on things going on in your blood and with your body. Just don't skimp on blood tests. I hate to constantly show up for blood work, but that is just a small price to pay compared to be not monitored on 6MP.

Best of luck!


Posted 3/17/2009 11:35 PM (GMT 0)

Not a lot of experience except to tell you that I am on my 18th day of 50mg.  Never took it before.  Also, on 20 mg. prednisone tapering to 1.5 in a couple weeks.  I have had no serious side effects - certainly no worse than UC so far.  I know the doctor wants to up the dose to 75 mg. but he knows how sensitive Iam to medications since I cannot tolerate many.  I tell him I am a 100 lb. kid in a 240lb. body when it comes to medicine.  I saw him yesterday and he feels the 6MP is already helping me - all symptoms have gotten better.  I had nausea months before being diagnosed so the little I have now early mornings - not every day - is really nothing.  When I had UC before diagnosis sometimes I could not decide which end to put over the toilet!  I guess prednisone is still keeping me awake as I have no fatigue.  I am 69, tired and can nap anytime so of course that helps.

Good luck with the 6MP and hope we both get to remission.  I need knee replacement as you know working in a hospital it is not good with an immune suppressant and I will have to get off it for a while for surgery - to be safe.  You are right - so many germs in hospitals.  My doctor said I should just take the precautions we all should - wash your hands a lot!

ElaineNY

Posted 3/18/2009 12:01 AM (GMT 0)
Hi, thanks for the input.  I'm glad you are doing well it gives me hope.  I too am taking prednisone tapering down to 30mg. tomorrow.  Well, I guess all of us with UC know the fight we have all been fighting some of us for a long time, and it's true those toilets you know all too well.  This has been a wonderful forum for me because I tend to hold so much in that I feel that I can't stop writing on here.  I hope you continue to do well and with your knee surgery as well.  I worked for an Orthopaedic surgeon for many years and did come across a few of those.  I just escaped having back surgery.  Had 4 herniated discs but didn't want surgery, so for 6 months have been going to spine rehab.  I must say I was sceptical, but I am doing very well, and didn't have surgery.  Hope all goes well with your surgery.  Good thoughts sent your way.

kops2da said...

Not a lot of experience except to tell you that I am on my 18th day of 50mg.  Never took it before.  Also, on 20 mg. prednisone tapering to 1.5 in a couple weeks.  I have had no serious side effects - certainly no worse than UC so far.  I know the doctor wants to up the dose to 75 mg. but he knows how sensitive Iam to medications since I cannot tolerate many.  I tell him I am a 100 lb. kid in a 240lb. body when it comes to medicine.  I saw him yesterday and he feels the 6MP is already helping me - all symptoms have gotten better.  I had nausea months before being diagnosed so the little I have now early mornings - not every day - is really nothing.  When I had UC before diagnosis sometimes I could not decide which end to put over the toilet!  I guess prednisone is still keeping me awake as I have no fatigue.  I am 69, tired and can nap anytime so of course that helps.

Good luck with the 6MP and hope we both get to remission.  I need knee replacement as you know working in a hospital it is not good with an immune suppressant and I will have to get off it for a while for surgery - to be safe.  You are right - so many germs in hospitals.  My doctor said I should just take the precautions we all should - wash your hands a lot!

ElaineNY


Posted 3/18/2009 1:57 AM (GMT 0)

molly - did those you came across have good luck with both UC and knee surgery?  As for your back - good luck.  My husband has a work injury - lower back - and is starting physical therapy in a couple weeks.  Hope it helps as he is unable to have surgery and is taking Norco and Topomax and only helps a little!

ElaineNY

Posted 3/18/2009 2:59 AM (GMT 0)

Hi Elaine, not sure if I am understanding your question.  I have the UC and have been dealing with it for 40 years.  When I worked with the Orthopaedic surgeon and working now in the hospital, I am an EKG tech so I see people who are coming in for surgery, but know there is a lot of success with knee surgeries.  As for the back, that is like a whole other ball game.  The backs are very tricky.  At the beginning of back problems physical therapy did help, but a couple of little things I did, gave me such sciatica down my leg it was the worst pain I have ever been in.  I took high end pain meds, acupuncture, cortisone shots in my back the whole thing.  The herniated disc down at the L5-S1 level was huge.  I defintely did not want surgery.  I saw a Chiropractor who didn't do much for me (it took a lot for me to go to a Chiropractor) being in the medical profession they are usually frowned upon.  I could hardly drive and had to hold one leg up in order to drive.  Finally I heard about this place that did spinal decompression and build up your core muscles.  I did not see any improvement for at least 3 months and was very discouraged.  When I started to build the core muscles (so important in getting back into shape) that is when I started to see improvement.  I was going every day for months, then 3 times a week, and now once and I am just about done, but will keep up maintainance.  My pain level is now scale of 0-1.  To be honest about the UC this is the most exposure I have had with people who share this awful disease.  I had to have an x-ray recently and the girl who took it had the J pouch surgery, what are the odds of that.  She was doing really well.  She had the surgery about 10 years ago.  Another person through the chrons and colitis foundation (don't know if you have been on their site, lots of information there and a support group here once a month, haven't attended but am going to.  You don't realize how many people are going through what you are until you got into these forums.  And each of us some way can all identify what the other is going through.  I hope this helps a little, feel free to write if there is anything else I can help with

kops2da said...

molly - did those you came across have good luck with both UC and knee surgery?  As for your back - good luck.  My husband has a work injury - lower back - and is starting physical therapy in a couple weeks.  Hope it helps as he is unable to have surgery and is taking Norco and Topomax and only helps a little!

ElaineNY


Posted 3/18/2009 3:03 AM (GMT 0)
Thanks!  Good info!  I guess I was wondering if you saw many who had knee surgery and taking an immune suppressant.  I so fear infection!

ElaineNY

Posted 3/18/2009 3:11 AM (GMT 0)
Well, I can tell you that I have had a couple of surgeries myself and was fine.  Even if I ran a slight fever after the surgery it cleared up with whatever they gave me, so nothing at that end.  Being I have not been on the immunosuppresent I can't say from that stand point, but I am sure I have had to do EKG's on a lot of people who were on Chemo meds or whatever, but unfortunetly working in the hospital in this capacity, I see the patients before surgery and never see the followup of how they did.  I hope it all turns out great.  When is your surgery?

kops2da said...
Thanks!  Good info!  I guess I was wondering if you saw many who had knee surgery and taking an immune suppressant.  I so fear infection!

ElaineNY

Posted 3/18/2009 3:14 AM (GMT 0)

Elaine,

One more thing you can always ask your surgeon if he is thinking about putting you on antibiotics before the surgery happens so you are already on board with them.   I think some doctors have mixed feelings about this, but I think I read it somewhere that it was a good thing to ask your doctor.

Posted 3/18/2009 3:20 AM (GMT 0)

Thanks molly - my gastro doc says I should wait to have the knee surgery when I am in full remission, nearly off or off the prednisone and the 6MP kicks in.  I think he would then take me off the 6MP for surgery and rehab - not sure yet.

ElaineNY

Posted 3/18/2009 3:35 AM (GMT 0)
i've been on 6-mp for a month and a half now...
my TERRIBLE flare seems to be easing up a bit- tapered from 60 to currently 20 on pred
on 100 mcg of 6-MP
i'm not sure if my "side effects" are from 6-mp or pred, but i am tired and muscles are very weak
but all in all i feel a lot better than i did a few weeks ago...i've even put a few pounds on lately.
i don't think the 6-mp has been bad...i am scared about getting a cold or infection though...
Posted 3/18/2009 3:58 AM (GMT 0)
Wow, I haven't read about anyone taking 100mg of 6MP.  Do they always increase your dose because I don't want to take more than 50 and probably will fight it if they were to say they needed to increase.  I am not keen on all this med stuff.  By your labs, wouldn't they be able to tell if it is 6MP? How often do you need to have labs done

mtgman said...
i've been on 6-mp for a month and a half now...
my TERRIBLE flare seems to be easing up a bit- tapered from 60 to currently 20 on pred
on 100 mcg of 6-MP
i'm not sure if my "side effects" are from 6-mp or pred, but i am tired and muscles are very weak
but all in all i feel a lot better than i did a few weeks ago...i've even put a few pounds on lately.
i don't think the 6-mp has been bad...i am scared about getting a cold or infection though...

Posted 3/18/2009 6:13 AM (GMT 0)
My daughter was on 50 mg for two weeks and developed terrible joint pain. She couldn't even walk for a few days. We stopped it and 2 days later she was fine. I guess this isn't very common, but you never know how you are going to react on a medication. I did a lot of research beforehand and the majority of it was positive. The drug really has helped a lot of people. good luck to you
Posted 3/18/2009 6:44 AM (GMT 0)
Thank you Gwen for the feedback.  I hope it will be okay.  I hope for your daughter as well that she will get and feel better soon.  I'm sorry about that awful adverse reaction.  I am hoping for the best but am quite concerned.  I concur though with MUSTLOVEDOGS, that is an awesome name.

MustLoveDogs said...
My daughter was on 50 mg for two weeks and developed terrible joint pain. She couldn't even walk for a few days. We stopped it and 2 days later she was fine. I guess this isn't very common, but you never know how you are going to react on a medication. I did a lot of research beforehand and the majority of it was positive. The drug really has helped a lot of people. good luck to you

Posted 3/18/2009 8:57 AM (GMT 0)
I'm have to take 100ml of 6MP because of this HLA-B27 gene...and I'm still flaring so you just never know what works and what wont...good luck Molly
Posted 3/18/2009 11:57 AM (GMT 0)
I too am on 100mg of 6mp and have been for about 4 1/2 months. I concur with all on the board so far about the dull headaches and tiredness, but those side effects I can function with rather than the multiple trips to the restroom. I am now working my way into remission after a year long flare which was difficult to deal with. The lab work ups are sometimes an inconvienence, but are necessary to keep everything in check.

I to was very worried about going onto 6-mp, but would do it again with no reservations. Good luck and keep in touch. 

Posted 3/18/2009 1:33 PM (GMT 0)

My doctor said he would increase the 6MP to 75mg when I taper the prednisone more- probably at 10 mg.  Then blood tests routinely once a month unless I have "symptoms" more than now - like more tired or headaches, etc.  So far - looks good and glad I started on it 3 weeks ago.

ElaineNY

Posted 3/18/2009 2:05 PM (GMT 0)
After two weeks on 6mp I found I could not tolerate the drug, which caused severe vomiting and diarrhea, but despite feeling like I was going to die  :-)   my blood work was fine!  I think it is fairly rare to have a serious reaction to the drug.  Considering how well others have done on the drug, I am glad I tried it.
Posted 3/18/2009 3:37 PM (GMT 0)
Thank you for your input, it is so appreciated.  I also wonder has everyone been able to manage to continue to work while on this and also because the immune system is suppressed do people tend to not be around much in crowds due to colds and that sort of thing

UC_Dad said...
I too am on 100mg of 6mp and have been for about 4 1/2 months. I concur with all on the board so far about the dull headaches and tiredness, but those side effects I can function with rather than the multiple trips to the restroom. I am now working my way into remission after a year long flare which was difficult to deal with. The lab work ups are sometimes an inconvienence, but are necessary to keep everything in check.

I to was very worried about going onto 6-mp, but would do it again with no reservations. Good luck and keep in touch. 

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