6mp is failing me

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Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/24/2008 1:34 PM (GMT -6)   
I took my gma into my and her GI today so I asked him about my 6mp and my recent Prometheus test.  He said basically that I am not metabolizing it correctly.  He used some technical terms that I couldn't follow but basically 6mp is not working properly for me.  He is keeping me at the current dose but in a couple weeks after I taper off the steroid enemas to call him and let him know how I'm doing.  He said that when the time comes he will discuss other options.  sad


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/24/2008 1:46 PM (GMT -6)   
Oh, Sherry, I'm sorry to hear that! On the other hand, is it possible your worsening colon condition has contributed to some of your other recent issues? My musculoskeletal pain always gets worse when my colon decides to have a blip. Maybe getting the UC under better control will also help some of the other problems.

Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/24/2008 1:48 PM (GMT -6)   
I'm really sorry to hear that Red :( What other options are you thinking about? Have you tried Remicade yet or do you want to? Why does he want to keep you on the 6-MP for a few more weeks if it's not working instead of just trying something else right away??
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/24/2008 1:55 PM (GMT -6)   
I think he wants to see if the steroid enemas are going to put me back in remission before he steps up the game plan. I'm open to trying Remicade because even though I would love to have my colon removed, I just can't take the down time right now. So if it comes to me trying Remi then at least it might give me some more time. I'm not quite sure what he has in mind because the appt I went to today was for my gma and he didn't have my chart in front of him. So we will discuss it in a few weeks I guess.

Judy, actually my back and neck pain started while I was in remission. I know that my hips and back get worse while flaring but when I was in remission the back pain intensified and I knew that something wasn't right. Which is why I'm still persuing the matter - just had another MRI yesterday and I meet with my neurologist on Thursday for the results.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 6/24/2008 5:37 PM (GMT -6)   
Sherry, Sorry to hear the 6mp is not working. Hang in there.
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 6/24/2008 5:55 PM (GMT -6)   
Ah man! That stinks! You hang in there and keep us posted. Sending happy thoughts your way!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/24/2008 5:55 PM (GMT -6)   
Sherry - we must be on some similar time line! Ah! These darn meds failing us - but at least we had some good months in remission :)

It took about two weeks for my doctor and insurance to get on the same page for my Remi treatments. I hope it doesn't take that long for everyone!

Fingers crossed that some down time and the steroid Es will get you back in remission...
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
20mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion:  06/17/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


piper_chris
Regular Member


Date Joined Jun 2008
Total Posts : 73
   Posted 6/24/2008 6:28 PM (GMT -6)   
I am told Remicade is effective for a lot of people. I'm sending you well wishes!  I took a Prometheus test before starting 6-MP to see if I have a certain enzyme.  My doctor hasn't mentioned anything about any more Prometheus tests.  How often were you doing it and do you know what they test for?  The only stuff my doctor is testing me for is CBC (complete blood count) and CMP (comprehensive metabolic panel) every 2 or 3 weeks.

- diagnosed ulcerative colitis Feb 2005
- currently 25mg prednisone (tapering down), 75 mg 6-MP/mercaptopurine/purinethol (just started), asacol/mesalamine 4800mg (4 pills x 3 times day), 1 Canasa 1000 nightly, VSL#3, multivitamin, calcium, fish oil, sometimes digestive enzymes


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/24/2008 8:20 PM (GMT -6)   
I'm sorry, Sherry! I hope steriod e's work for you!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/24/2008 9:19 PM (GMT -6)   
Piper_chris, after you've been on 6mp for a while and if you are still flaring, the doctor can do a metabolites test to see how your body is metabolizing the medication. If you are on the low end, your doctor can then up the dose to try to get you at the proper level. Of course taking the proper precautions such as doing other blood tests such as CBC and liver function after a dosage increase.

Thanks everyone for the kind words. I do believe that 6mp is helping me but now I know at least why I am still flaring. I'm just grateful that the 6mp is keeping the worse flares at bay for me. But I'm also a bit depressed knowing that it's not doing the correct job in which it was intended. :( So we shall see what happens after I get off the steroid E's.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/24/2008 9:36 PM (GMT -6)   

Sherry,

I am sorry the 6mp is not working for you.  It did not work for me either and I had such high hopes.  At least today there are additional medications to try.  Back when I was on 6mp it was considered the final straw before surgery.  I do hope you are to find something that will put you in remission.  However, if you should have to opt for surgery at some point please know that it's not the end of the world.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/24/2008 10:02 PM (GMT -6)   
Oh Sue I know that if I had my colon removed that it wouldn't be the end of the world :) I've been researching surgery options for the past year or two. But, truthfully, I am scared witless of it. Not the surgery itself but the aftermath. I'm scared on how it may change my life - maybe for the better but maybe for the worse too. If the time comes, I want to be at peace with my decision and I'm slowly getting there. I've also have been thinking of ways to have someone care for Gma if in the event I do have it done. Not only would having the surgery be a huge impact on me but everyone around me. And to have someone come in and help care for Gma until I recovered would be a huge undertaking for anyone. LOL She's a sweet lady but not quite an easy one. :) My hubby has told me that if I wanted to have surgery that he would take his vacation time to take care of the kids and Gma so that is an option too.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 6/24/2008 10:14 PM (GMT -6)   
So sorry to hear that, Sherry.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/25/2008 8:15 AM (GMT -6)   
Hi Sherry,

I am sorry to hear that, it is very scary. My last two tests showed high enzymes for my liver and I have to do a third, so I don't really know what is going on too much either. I will opt for remicade before surgery, I need to know that I have tried everything.

That is great that your family is so supportive and that you are there for your Gma. Sounds like you really take care of everyone else and I am sure that they will totally be happy to be there for you if you go the surgery route and let them take care of you.

For your Gma also check into local agencies to see what things she is eligible for, for instance I used to work for a company that would go grocery shopping, clean, 'babysit' elderly w/dementia, take them to appointments and/or just be there with elderly for a few hours a day. I would go to their homes and these people did not have money, I think it was funded by the state of NH or medicaid or something.

Just a thought of something to look into. Unfortunately there are no handbooks on programs that are available out there and it is very difficult to find info sometimes, but there are things out there than can help.

I really hope that everything goes well for you and please keep us posted, as I am also interested b/c I think I am going down the same road (kind of).
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 6/25/2008 10:43 AM (GMT -6)   
Doesn't sound good Sherry, but hopefully surgery isn't going to be the next step.Have you tried Remicade? Maybe things will improve soon and you won't have this worry hanging over you.

Hoping things get better real soon.
Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
            http://www.myspace.com/martybuzz1<FONT]


pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 6/25/2008 2:06 PM (GMT -6)   

Sherry, i'm so sorry about the 6mp situation. I think i am having the same situation with Imuran. They are going to have to do another Prometheus test for me. But the last time it was done, it was so close to theraputic range and I'm still flaring to often. If you are so inclined, keep us informed on your progress and what next step may be.

Good Luck to you!


Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins

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