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M&Mmommy
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/1/2010 8:47 AM (GMT -7)   
Hi all! I've been perusing the forum for the last week and decided it was time to join in the fun...
I was diagnosed with Crohn's my sophomore year of college after nine months of misdiagnosis and frustration. My first (and so far only!) bowel resection was six months after my diagnosis.
I moved to the Capital Region of New York less than two years ago and found a wonderful new gastro who has been very aggressive in treating my disease. I have moderate to severe CD, and have been treating it with Remicade since October (5 mg/kg; upping it to 10 mg/kg at my March infusion) after Pentasa and Entocort seemed to have little to no effect. I'm a "hard stick," so the infusions are always an adventure - first time in, the nurse stuck me five times before she found a vein! Anyone else in a similar situation?
My gastro just started me on 6MP on Friday, at the lowest dose (50 mg/day), and I've been shocked at how much it takes out of me - I slept until noon on Sunday (my usual weekend wake-up time is 7:30!), and I got a full 8 hours of sleep last night, but am at work now and feel like I could nap at my desk until it's time to go home... Anyone have a similar experience? Will it get better as my body gets used to the drug?
Thanks for reading, and thanks for the existance of this forum - it's great to have an online support group!

Michele
Diagnosed with Crohn's at age 19, October 1999.
Bowel resection, April 2000.
Current meds: Remicade (10 mg/kg every 8 weeks), 6MP (just started phasing in; currently at 50 mg/day), Entocort (phasing out; 3 mg/day), Lexapro, TriNessa, Digestive Advantage Crohn's & Colitis daily supplement, multivitamin, B-12 supplement, daily anti-diarrheal pill


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/1/2010 8:52 AM (GMT -7)   
Hey Michele and welcome to Healingwell, only sorry for the reason you have to be here. I think you will find alot of support here, I know I do. When are you taking the 6mp? In the morning or at night? I had to take it at night to avoid any side effects. Yes, the 6mp can cause fatigue and will get better with time. It can also cause some hair shedding, but if you add in some Folic Acid that should help to reduce it some. Also, if you can tolerate it Biotin will help with the hair shedding too. Be sure to get your blood tests as ordered, and I hope this med does the trick for you.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

M&Mmommy
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/1/2010 9:06 AM (GMT -7)   
Hi Nanners - Thanks for the quick response! I've tried taking it at night (Friday), mid-afternoon (Saturday and Sunday) and in the morning (today)... I'll try sticking to a nighttime schedule and see if that helps. Also, thanks for the tips on Biotin and folic acid - I'll try those too!
Michele
Diagnosed with Crohn's at age 19, October 1999.
Bowel resection, April 2000.
Current meds: Remicade (10 mg/kg every 8 weeks), 6MP (just started phasing in; currently at 50 mg/day), Entocort (phasing out; 3 mg/day), Lexapro, TriNessa, Digestive Advantage Crohn's & Colitis daily supplement, multivitamin, B-12 supplement, daily anti-diarrheal pill


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 3/1/2010 9:25 AM (GMT -7)   
I'm on imuran and from what I understand it is very similar to 6mp. I get fatigue too nowadays especially now that the prednisone is coming down. I'm hoping it gets better... I am taking folic acid and biotin like Nanners said to help my thinning hair. Good luck!
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone(tapering) & 100 mg imuran, probiotics, calcium w/d3, biotin, folic acid, zinc, omega 3s, digestive enzymes & prenatal multivitamin


MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 3/1/2010 10:06 AM (GMT -7)   

My daughter is on 6MP now too. She started taking it a month ago and to be honest, I hadn't noticed any side effects at all until I read your post about being tired. Now that I think about it, she has been very tired in the mornings...even compared to normal. I have to tell  her to "get moving" about 5 times before she actually does anything. Maybe that's from the 6MP. She takes hers at night b4 bed, as recommended on the RX bottle. 

As for thinning hair, we did initially notice that there seemed to be more in the brush but that has stopped.  I did mention it to the GI Doc and he said, as he said last time when she had thinning hair after being on prednisone for 3 months, that the hair loss is probably not from the med but more likely from the disease state she is in.  When one is malabsorbing, hair loss can be a result due to lack of nutrition, says he.

At any rate, welcome and sure hope the 6MP works for you. From what I hear it generally can take 2-3 months before you see any results from it. We are trying hard to be patient here too, and are praying this puts my daughter into remission so she feels like she can EAT again. I'm so emotionally sapped from seeing her so thin and finicky at the table. Most of her friends at her age (10) are weighing at around 75 - 85+ pounds and she is only 60. She looks so tiny compared to the rest and that was never the case for her. So frustrating. I think I might be losing hair myself! sad



  • MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 3/1/2010 10:07 AM (GMT -7)   
    And I forgot to add... don't forget to read up on vitamin D3 and Crohn's. Lots of great information out there. I give my 10 yr old 4000 IU daily.

  • MMMNAVY
    Veteran Member


    Date Joined Jul 2006
    Total Posts : 6927
       Posted 3/1/2010 10:57 AM (GMT -7)   
    Michele,
    Welcome to healingwell! One thing you might want to think about is getting your vit level checked. With crohns there is always a concern about malnutrition issues.
    Navy
    Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

    I will find a way or make one. –Phillip Sidney 1554-1586

    All that I am and all that I shall ever be, I owe to my Angel Mother.

    The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

    Make sure your suffering has meaning…


    Zanne
    Veteran Member


    Date Joined Apr 2005
    Total Posts : 3763
       Posted 3/1/2010 1:32 PM (GMT -7)   
    Hello and Welcome. I just wanted to say that I am one of the ones who has had good results from 6MP. I have been on it for over 12 years, in combination with other medications and at various levels. I don't really remember having side effects when I first started, but I had little kids, so if I was tired I would have just thought it went with the territory. wink A few things you may already know. It takes a few months to really kick in, so give it time. Also you do need to keep up with your blood work to make sure that it doesn't affect your liver function. I hope you have good luck with it and that the side effects wear off after a few days/weeks. Looking forward to hearing how you are doing.
    Suzanne

    CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
    Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


    Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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