hi everyone. i was diagnosed with crohn's last month after a few years of symptoms. i was started on prednisolone and pentasa. i started on 30mg for two weeks, then dropped 5mg a week for and im so far down to 20mg. unbelievably i have gained 22lbs!!! and i do not need to as i seem to be a rare plump crohn's person. :eek2: i have also noticed that as i drop down the dosage my symptoms come back a little and i seem to get more side effects. is this normal? like yesterday i went down to 20mg and felt all shaky and weird? i have been given a prescription for mecaptopurine which im going to start on wednesday when im off work. im really worried about this and hair loss. i know its vain and there are far worse side effects but does anyone have any info on this? is it common. the nurse was very blase about it and i forgot to ask about the hair loss. i have fine hair already and dont want to lose any more:confused2: thanks xx
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Newly diagnosed worried about mecaptopurine
- Thread starter kellynruby
- Start date
Hi Kelly,
Has your GI talked about the different meds you are taking respectively starting? If not I think you should ask to be walked through all the currently standard medication used for Crohn's, the why behind them, side effects and benefits.
On your current medication: Pentasa is a medication that works superficially and helps some Crohn's patients, but not many. Many Docs still prescribe it though, many GIs have, however, also dropped it entirely for Crohn's (it is still an important drug for UC patients and can help Crohn's patients - it normally has little in terms of side effects).
Prednisolone is definitely the most powerful drug for short term use to fight inflammation for Crohn's. it has all kind of short term and long term side effects. It is tapered off as you do in small steps. If your symtoms come back you should talk to your GI and up again, then taper down again.
6-mecaptopurine or 6-mp is an immunosuppressive drug and one of two types of drugs used for long term Crohn's management (the other being biologics like remicade or humira). I have been on azathioprine which is basically the same drug as 6mp since 2003 (with a 2 year hiatus) and never experienced any side effects, but most are very rare including hair loss which is a very rare side effect - more commonly people 10-20% of the patients don't tolerate 6-mp right away and of those who tolerate and for those for which 6-mp works the serious side effects that are most commonly mentioned in literature are an in increase in certain cancer types (but not a worrysome increase, for lymphomia it's 4 in 10,000 compared to 2 in 10,000 in the general population), a higher likelihood of infections (again in rare cases severe infections) and problems for your liver (that is why you do regular blood tests to check for problems that may start to develop). most people accept the side effects because they are rare and if 6mp helps you with getting healthy the benefits far outweight any risks. A whole forum sub group is dedicated to these drugs http://www.crohnsforum.com/forumdisplay.php?f=64
My suggestion would be, altough this right now must seem to be a complete information overload, to just read as much as you can (on the internet and on this forum) to really get informed about the drugs you are taking, but also all the other things you can and should do to manage your Crohn's. when it comes to managing it, good information is truly power.
All the best,
Alex
Has your GI talked about the different meds you are taking respectively starting? If not I think you should ask to be walked through all the currently standard medication used for Crohn's, the why behind them, side effects and benefits.
On your current medication: Pentasa is a medication that works superficially and helps some Crohn's patients, but not many. Many Docs still prescribe it though, many GIs have, however, also dropped it entirely for Crohn's (it is still an important drug for UC patients and can help Crohn's patients - it normally has little in terms of side effects).
Prednisolone is definitely the most powerful drug for short term use to fight inflammation for Crohn's. it has all kind of short term and long term side effects. It is tapered off as you do in small steps. If your symtoms come back you should talk to your GI and up again, then taper down again.
6-mecaptopurine or 6-mp is an immunosuppressive drug and one of two types of drugs used for long term Crohn's management (the other being biologics like remicade or humira). I have been on azathioprine which is basically the same drug as 6mp since 2003 (with a 2 year hiatus) and never experienced any side effects, but most are very rare including hair loss which is a very rare side effect - more commonly people 10-20% of the patients don't tolerate 6-mp right away and of those who tolerate and for those for which 6-mp works the serious side effects that are most commonly mentioned in literature are an in increase in certain cancer types (but not a worrysome increase, for lymphomia it's 4 in 10,000 compared to 2 in 10,000 in the general population), a higher likelihood of infections (again in rare cases severe infections) and problems for your liver (that is why you do regular blood tests to check for problems that may start to develop). most people accept the side effects because they are rare and if 6mp helps you with getting healthy the benefits far outweight any risks. A whole forum sub group is dedicated to these drugs http://www.crohnsforum.com/forumdisplay.php?f=64
My suggestion would be, altough this right now must seem to be a complete information overload, to just read as much as you can (on the internet and on this forum) to really get informed about the drugs you are taking, but also all the other things you can and should do to manage your Crohn's. when it comes to managing it, good information is truly power.
All the best,
Alex
Thank you so much for your reply. You're right about information overload. When you hear about the bad side effects of 6-mp you have no clue how common they are or not. I like statistics 
they rush you through it at the hospital and I didn't feel I had any choice about the treatment plan. I feel better about starting the 6-mp now thanks again
they rush you through it at the hospital and I didn't feel I had any choice about the treatment plan. I feel better about starting the 6-mp now thanks again