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Started 6MP today....scared!

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Crohn's Disease
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Posted 6/22/2009 4:35 AM (GMT 0)
Hi everyone,

I'm new to this forum (and Crohn's in general...definitively diagnosed on Tuesday after my 3rd colonoscopy. Was hospitalized in  March for a week, diagnosed then with UC. Was put on IV steroids, Asacol, suppositories, etc. Only temporary relief). I'm 29 years old, and have had bowel issues my whole life, but it got way worse in the last year or so.

Anyway, I've been losing a lot of hair, I assume that's a mixture of the Asacol and stress. Thankfully, i started out with very thick hair. If it was already thin, i'd be bald right now I'm losing so much! Does anyone know if this goes away? I'm concerned that the Asacol, coupled with the 6MP, will make it much worse.

Of course, my health is my priority. But you ladies know, losing our hair adds more stress and can make a rough situation even worse. I've already lopped off a good 6 inches to try and disguise the problem for now. Any words of advice?

My dr. told me 6MP is a form of chemo, so I was petrified to take it. I took my 1st 50mg dose earlier tonight, and so far, so good. Just a bit of nausea, bit nothing horrible. Hopefully this works!

Thank you for any words of encouragement or advice! I'm glad I found this group.

Posted 6/22/2009 5:33 AM (GMT 0)
Welcome.
6MP:
I tried 6MP and it turned out to NOT like me because I developed acute jaundice. Have your blood tests done faithfully and if you get nausea that anti-nausea meds won't control, tell your Dr. That was the start of my jaundice. However, I didn't develop problems until AFTER we doubled my 6MP dose. I had been doing very well with 6MP, and even better when we doubled it, I guess my liver just couldn't handle it.
Things I'm doing now:
I tried Remicade and it did nothing for me and I was finally miserable enough to accept surgery. Thankfully, that removed the immediate pain issues I was having. I am now giving myself once/weekly chemo shots of MTX (methotrexate) and responding well. I also take 2 Immodium caplets twice a day, in addition to a probiotic capsule.
I *really* feel the probiotic has been a tremendous help.
Hair:
Anyhow, my hair has always been straight and fine. Certainly not thick, and the prednisone, 6MP and MTX did cause me to lose handfuls of hair in the shower. I decided to cut about 18" off my hair and keep it at chin length in a sort of 'modified bob'. With layers and cuts angled into the ends, I can give it plenty of volume to make it appear I have more hair than I actually do. Also, I didn't notice it so much in the shower when my hair length was under 8". Mostly, I would say increasing my "folic acid" vitamin helped halt the hair loss. I plan on asking my PCP for a folic acid Rx. It may be cheaper than me taking 4 regular folic acid vitamin pills.
Best of luck,
Heidi
Posted 6/22/2009 1:45 PM (GMT 0)
These meds are some of the best for most people to get their crohns into remission and maintaining it. As Heidi said be sure to get your blood work done regularly as directed by your doctor. For the hair loss you will have some more with the 6mp many take at least 1 mg of Folic Acid a day. Also taking Biotin seems to help too. To avoid any side effects, I took it right at bedtime, and seemed to avoid any of the side effects by sleeping thru them. Good luck!
Posted 6/22/2009 5:50 PM (GMT 0)
I took this for years, and it worked for a long time with no side effects. I didn't notice any side effects. Just please keep your blood work appointments and let the doctor know if you experience anything out of the ordinary.
Posted 6/22/2009 9:15 PM (GMT 0)
Just wanted to let you know I have been on 6MP for over a decade. I haven't had any real side effects, except when my dose was increased. I know we all react differently, but thought it might ease your mind to hear from someone who has been on it long term.
Posted 6/23/2009 3:54 AM (GMT 0)
I've been on 50 mg daily of 6MP for 5 years, with no noticeable side effects. Although I still have the usual Crohn's symptoms, it's kept me from developing any strictures since I started taking it. It's been a lifesaver for me. When I went on the 6MP, I was able to stop taking Pentasa, which hadn't been helping; I'd also had bad reactions to Asacol.

Don't worry--but, as everyone's said, make sure to get your liver function tests whenever you're supposed to. Some people don't react well to 6MP, but if you do, it may really help you.
Posted 6/23/2009 4:57 AM (GMT 0)
Thank you so much for these responses! I started poking around on these forums (and other sites) when I was diagnosed, and needless to say, it's very hard to remain positive and hopeful when you read other people's "horror stories" regarding UC and CD. I actually stopped going online for info a few days ago because I was so scared! It seems the sucess stories are few and far between, so it's great to get these reponses! They eased my mind a bit.
I began the 6MP 2 days ago, and besides SLIGHT nausea an hour or so after taking it (nothing major) I haven't had any bad side effects so far. I am still worried about my hair as it seems more and more falls out every day (it's a mini-handful with every shower now....Im taking 12 Asacol a day, and have been for the last 3 months. I think it's related to that) so I'm hoping that doesn't increase with the 6MP. This stuff takes several weeks to start working though, right?
Posted 6/23/2009 12:20 PM (GMT 0)
6mp can take up to 90 days to reach full effectiveness but it remains probably he best maintence drug for Crohns, with side effects in only a small percentage of patients. The chemo worry is not real; purinethol when used in leukemia patients is taken in much larger doses than what is used for Crohns. The blood work is key, since white cell supression is the biggest worry. But be optimistic . . . this drug has been used for decades now in Crohns therapy with very good long term results.

Posted 6/23/2009 12:25 PM (GMT 0)
hey there...i tried 6-mp for about 6 months and then gave up on it...wasn't helping at all and my liver functions were getting really bad on the 6-mp and asacol...asacol tends to exacerbate the effects on the liver...my dr. had me stop asacol IMMIDIETLY and he's not one to panic. I tried the 6-MP for a couple of months longer and then decided to stop. The only bad thing other than the liver issues was an infection under my fingernail that wouldn't go away- had to go on antibiotics, so watch out for infections etc.
Posted 6/23/2009 5:48 PM (GMT 0)

6MP has been my miracle drug.  I have been on 75mg a day for about 4 or 5 years now.  I have had no problems or side effects from it.  I get my bloodwork (CBC) done every three months so the dr can watch my white blood count.  Then I also have bloodwork done yearly to check my liver enzymes. 

My hair takes spells of coming out to the point I think something else is wrong (someone suggested my thyroid).  Usually I can tell it is stress related and it goes away after a couple months.  Like you, my hair is think so you can't really tell unless you get out of the shower and there is enough hair inthe shower or on the bathroom floor to make a child's wig!  My hairdresser has been able to tell sometimes when it is really bad that it is thinner.  It comes and goes so I have just learned to deal with it.

Good luck on 6MP! 

Posted 6/24/2009 3:06 AM (GMT 0)
I would start taking Folic Acid and/or a Biotin product right away, to help your hair. I absolutely notice a difference when I take it, vs when I don't.
I go through rebellious periods where I get so sick/tired of taking pills that I refuse to take anything but the required Rx's. I know this isn't a good attitude to have, and I've also seen the same attitude manifest itself with my bathroom habits. I get so darn sick/tired of *having* to spend so much time in there...that I will put OFF tinkle-trips until I'm almost floating. Again, that is just a bad, rebellious habit of me acting out against the things I can (minimally) control.
I noticed on 6MP that things didn't 'taste right'. I developed a liking for mustard on my sandwiches (hated mustard, previously) and other strong flavored things, like pink lemonade or Chef Boyardee mini raviolis. Tart or acidic to cut that *odd* flavor.
Best of luck,
Heidi
Posted 6/24/2009 11:39 AM (GMT 0)
I am about to start 6MP with Cimzia after having been on Remicade and prior to that Humira. I also take daily 24 drops of Opium, 12 Lialda and 2 Pamine as well as Sythroid, Cybalta, Flora Q, Topamax, Neuronton, Lipitor, etc. I am devastated that the Remicade stopped working. I am now about to put all my faith into the Cimzia and the 6MP. Has anyone ever combined those 2 before?
Posted 6/25/2009 6:04 PM (GMT 0)

Hi everyone,

Ok, so I started the 6MP 4 days ago (as you know!) and have not had any side effcts yet, for the most part. But today, I noticed my trips to the bathroom have become WAY more frequent...I'm also having major abdominal cramps and achy joints. My stomach feels like it's "in knots", almost like it's in a muscle spasm that won't relax. Did this happen to anyone else? It could be unrelated, but I just thought I'd check. If it is from the 6MP, hopefully it will pass soon. I haven't been to the bathroom this much in months!

Posted 6/25/2009 6:06 PM (GMT 0)
ps. I forgot to mention, my dr. told me last week that I had a partial obstruction. Could it be that the 6MP is already working a bit and freeing up the obstruction? (hence the bathroom issues....)
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