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stressed, depressed, and flaring!! but hesitant about 6mp...HELP

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Ulcerative Colitis
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Posted 11/8/2010 9:54 PM (GMT 0)
Hi all! So long story short, I was diagnosed w/ uc in feb 2009 and responded well to my steroid treatment (4-5months to taper) then apriso to keep me in check... I was doing well until I started flaring again january of this year... I really did not want to go on steroids again so my GI prescribed rowasa but it barely helped so I had to eventually go on steroids again in march and I've been on them ever since!!! So I've been on prevacid, prednisone, apriso, and rowasa as needed since march and every time I try to taper the pred (when i get to around 5mg) I flare again... (it's been 3x already) I dont get it and it's really pissing me off!
My GI has mentioned 6mp before and I've just brushed it off b/c I always thought it would get better but now he's really pushing it and I just dont think i can deal with all those side effects i read about.. (hair loss, infection, joint pain, hepatitis, etc) He even tells me its safe to get preggers on but Im still hesitant (and i really want kids soon)
Anyway, Ive tried everything alternative that I can think of: acupuncture, herbs, probiotics, aloe juice, scd diet, gluten free, meditating, chiropractic, and I've even tried going to a healing center... my next step was to try the maker's diet and if that doesn't work I don't know what else to do! I've even thought of taking off work for a few months just to de-stress and focus on dealing with this darn disease...
So I guess my question is for anyone who's tried 6mp: how long did it take to kick in? did u have to be on pred at the same time? side effects? can i just stop it if the side effects are too hard to handle? do i have any other options?
I should probably mention that being on all these prescription meds has given me stress, anxiety, and depression which is probably a vicious cycle for my uc... another reason for me not to want to go on 6mp... am I being stubborn or what??
Posted 11/8/2010 10:22 PM (GMT 0)
Aww. Poor thing. You sound like me. I didn't want to start 6mp either and I don't like that I am on it but I was in the same position you're in and nothing seemed to help get me off prednisone. I am still trying to get my dose of 6mp to be in the theraputic range and hoping this taper works out but I am not too hopeful. I try to think positive but I've had such bad luck in the past that I have to be realistic. I don't think you're bing stubborn, it is a big decision, it's a big deal taking these drugs. I want off but I know it could potentially help me so I am sticking with it. I haven't had too many terrible side effects other than fatigue. I've always been pretty wiped out so I am used to it. Have you tried increasing the rectal meds? Using Canasa in the morning and a steriod foam at night? I think that's been helpful to me. Have you tried other 5ASAs besides Apriso? Some people do better on Colazal or Pentasa, depending on where the inflammation is active. When was your last colonoscopy?
Posted 11/8/2010 10:35 PM (GMT 0)
6mp takes about 3-6 months before it starts working. I've been on it for 4 years and I was steroid enema dependent (was on them for a year or so). The initial side effects are mild hair loss, headaches, nausea and fatigue. But once your body gets used to it, the side effects go away except maybe the fatigue. I have a problem with fatigue too but I work around it or I don't notice it as much. It's sort of a pain but you will have to go in for frequent blood testing in the beginning and once it's proven that your body can handle it, your blood tests should go to every 3 months or so.

I didn't want to go on it either, but I couldn't get off the steroid enemas without flaring. And approximately around the 7 week mark I started feeling better Uc wise.
Posted 11/9/2010 3:46 PM (GMT 0)
Hi,, you sound just like my son, who was on Asacol, and 6mp  and prednisone  for a couple years,,,until some wonderful woman on this site

told me about Remicade,,and how if you qualify financially, you get help for free.   Well, my son did,,he is starting his 3rd year on Remicade infusions,

and it has been a miracle for him.   He takes no other medicine but Vitamins,,and he hasn't had a flare or pain or nothing since he is on Remicade.

He goes one time every 8 weeks for a couple hours,,and then, that's it,,,until he goes back 8 weeks later.  We are eternally grateful for this site,,

and the help it provided.    Maybe you should ask your doctor about the Remicade infusions.  It may help.  Good luck.

Posted 11/10/2010 4:57 AM (GMT 0)
thanx guys that makes me feel somewhat better about 6mp now... i'm fatigued all the time too so i guess i can deal w/ that but i've dealt w/ hair loss before from lialda and i was not a happy person @ that time... i lost about 50% of my hair where u can see right thru to my scalp... and i'm actually a hairstylist so my whole life revolves around hair and not being able to do anything for myself was depressing...

notsosicklygirl: my last colonoscopy was in march 2010 and when i go to my dr appt this monday ill ask him exactly where my inflammation was and if there are any other meds to try b4 6mp... thx!
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