Anyone been on Immunomodulators for a long time now?

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nancerini
Regular Member


Date Joined Mar 2003
Total Posts : 100
   Posted 3/22/2010 10:52 AM (GMT -7)   
Hello, My Crohn's just won't seem to settle down for long and I've been on steroids on and off for the past 5yrs. Docs recommend immunomodulators. I would like to know if you've been on them for a long time and what side effects you have suffered from. Plus, do you have any long-term side effects from being on it so long? Thanks, nancy

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 3/22/2010 12:22 PM (GMT -7)   
Remicade for 1 year (only). No side effects so far.

Good luck!
 
-------------------------------------------
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 mg Imuran + Iron (sort of remission, not sure at all)
 


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/22/2010 12:36 PM (GMT -7)   
Remicade isn't an immunomodulator.

6-mp and MTX are.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/22/2010 2:21 PM (GMT -7)   
Immuran is also another modulator.

However, no disrespect meant, but let us be a little more clear "Anti-TNF therapy reduces inflammation and modulates cellular immune response."

It would help us to know what immune modulators you are looking at takeing?


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

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debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/22/2010 2:25 PM (GMT -7)   
Agree with Navy.

6-mp and MTX or Imuran are Immunomods.
They are Chemotherapy type medications.

Anti TNF only Suppress "TNF actions" of an immune "response"

Chemo drugs Slow down ALL aspects of Immune system. Which is why they "modulators"
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 3/22/2010 4:24 PM (GMT -7)   
Hi nancerini,
 
You might want to repost this and instead of using the term you used, use the actual name of the medication to get better responses.
 

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 3/22/2010 6:31 PM (GMT -7)   
If you are talking an immunosuppressant such as Imuran (azithiorpine) I've been on Imuran 7 years. Given my choice between steroids and Imuran I've opted for the Imuran. Steroids are NOT a reasonable long-term option unless absolutely nothing else available works and the steroid does. Long-term steroid therapy is much more hazardous to my way of thinking than Imuran - but to each their own.
My computer says I need to upgrade my brain to be compatible with its new software.


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 3/23/2010 2:28 AM (GMT -7)   
I've been on methotrexate for 8 years, helped give me my life, back during the last 8 years I've finished school, gone to uni and held down several jobs as well as leading an active social life and being able to get back into sports again. I used to get side-effects with the tablet form but this would only last a day or two and got better over time, now I'm on injections and experience no side-effects except a little sleepiness. Steroids never worked for me so can't really comment there but from what I understand they're not supposed to be a long term treatment method.
 
 


nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 3/23/2010 1:09 PM (GMT -7)   
I've been on 50mg daily (a fairly minimal dosage) of 6-MP (an immunomodulator) for six years now, and I haven't had any side effects at all. I did just have to have a small basal cell carcinoma removed from my face in December, but that could have happened whether I'd been on 6-MP or not; I'm fairskinned and have gotten severely sunburnt many times in my life. Even on the 6-MP, I seem to get sick much less often than the people around me. But I do worry about being at a much higher risk of cancer because I take this drug. I'm going to talk to my doctor about my situation.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/23/2010 1:16 PM (GMT -7)   
I've been on 6MP for over 12 years and prednisone at varying doses for most of the last 20. I can't seem to get off the prednisone, it really is the one drug that works wonders for me, I have been lucky that I have been able to get to a low dose for most of the time. But the 6MP seems to be doing its job too. I do tend to run high on my liver function tests and just had to go see my GI because my levels went way high, but they came back down again. This seems to be my only side effect and it seems to be consistent for me. I run high, then spike, go back to just high of normal. For me, the combination of pred and 6MP has kept me relatively stable for the last 12+ years and I have been able to avoid the hospital for the most part and live a really good life. Before I added the 6MP the prednisone didn't seem to be enough to keep things under control.
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.....


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 3/23/2010 5:50 PM (GMT -7)   
i was on 6-mp for over a decade. i cannot say it worked at all. as for side effects, i bruised easily. long term side effects are really unknown as it is a cancer drug given for a short period of time (ie year or less). supposedly it can cause liver and bone marrow toxicity...

i took remicade for 6+ years. i felt stronger soon after an infusion, but in a few months i'd start to flare again. it is supposed to heal and prevent fistulas, but while on it i developed a fistula from my colon to my bladder that required surgery. so i dont think this med helped me either. i think all it did was mask the symptoms so i could function better. you hear scary stories of how it can cause lupus...

that is my opinion from my experience. we all respond to this stuff differently.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

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