Has 6mp instead of prednisone put anyone into remission?

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NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 348
   Posted 2/19/2009 8:01 AM (GMT -6)   
I believe that someone said in the "I refuse prednisone" thread that she refused prednisone and used 6mp. And then it put her in remission? She said it took longer and possible put her in remission. I do not want to take prednisone either. I will ask my GI to put me on 6mp if it works. Has 6mp put anyone else into remission as well?
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


mtgman
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Date Joined Mar 2005
Total Posts : 1289
   Posted 2/19/2009 9:08 AM (GMT -6)   
i am on both right now...
i've been on 6-MP for appox 3 weeks...nothing yet.
the thing is- prednisone is ususally very good at getting symptoms under control fast while 6-MP may take 3-6 months before it starts working.
i hate prednisone too, but you really need to weigh the pros/cons depending on how you're feeling.
it really can be a "miracle drug" in the short term at times.

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/19/2009 9:11 AM (GMT -6)   

I believe that is what my doc has in mind.  With UC under control with prednisone at the smallest dose possible, adding 6 MP and going from there.  I have to call when down to 20 mg.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/19/2009 9:17 AM (GMT -6)   
I have never been on Pred for my Uc and 6mp has got me into remission when I first started taking it. I was doing great until my daughter gave me a stomach virus and then that set off a series of flares.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 348
   Posted 2/19/2009 9:49 AM (GMT -6)   
How long did it take to put you in remission? 3 months? What kind of symptoms were you having? Blood, pain, diarrhea?
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 2/19/2009 11:02 AM (GMT -6)   
It took my 6MP 3 months but it can also cause other problems. Liver damage, pancreatitis, kidney problems, and other issues. I am worried that my 6MP is responsible for a condition called porphyria which is very rare and I'm currently trying to find a doctor that will treat me. I have been to 2 doctors so far and they keep sending me on because they don't know anything about this condition. I am currently waiting on an appointment to a research hospital with a hematology/oncology specialist. Will update for others for their knowledge because it seems like no one has experienced anything like this.
  • 26 years old, married, Stay-at-home Mommy to 2 year old daughter 
  • Ulcerative Colitis since Sept. 2004
    • 1st flare Sept-Nov 2004
    • 2nd flare Aug. 2007-July 08 
  • Currently taking:75mg 6MP, 4 Lialda, Loestrin 24, Allergy meds., Maxalt for migraines and allergy shots once a month 
  • 10/6/08 Found a 1cm kidney stone in right kidney.  Had the stone blasted and passed the fragments.

 


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 348
   Posted 2/19/2009 11:06 AM (GMT -6)   
I am so sorry that you are having these problems. I hope you get better.
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/19/2009 11:13 AM (GMT -6)   

Mommy pooh - because I may soon go on 6MP I researched it some and found this forum for porphyria....

 

Hope you get help with this condition.  I am 68 and think my system is different than when young so who knows what will happen - just willing to try!  ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 2/19/2009 11:16 AM (GMT -6)   
Before I started on 6mp, I couldn't get off steroid enemas. I was having quite painful D, abdominal pain and a lot of bleeding. I would say I was going to the bathroom about 6 times a day. At 7 weeks, things started slowing down and I was finally able to taper off the steroid enemas which I wasn't able to before. Around 3 months I noticed that literally overnight, I woke up and absolutely all my symptoms were gone, even the abdominal pain. While I wasn't on Pred, I was on the steroid enemas. But if you were to go on 6mp, you don't have to rely on steroids to keep your symptoms stable until it kicks in. There are other rectal meds you can try such as Rowasa or Canasa.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/19/2009 11:19 AM (GMT -6)   
Can you think of any other rectal meds - especially low dose suppositories I could try?  You know I have done the Rowasa/Canasa/hydrocortisone with only BAD results!  ElaineNY

68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 2/19/2009 11:29 AM (GMT -6)   
I'll answer you on here since the other thread is mostly about Pred.

I don't seem to have flares as bad as some people. The most trips to the bathroom I've ever had in a day was 10. My flares start out as normal formed bowel movements with bloody mucus on the poo. I go on like that for a while before the stool becomes more loose, and I have more bloody mucus. My last flare, I took Entocort for a total of 11 months at either 3 or 2 pills a day. My bone density was fine when tested. Because I was only having 5-6 bathroom trips and no pain, my doctor wanted to try Entocort for a long time to give it time to work. I later found out that Entocort can't help inflamation toward the end of the bowel because it doesn't make it that far. My flare eventually got to where I was having urgency and only having gas, mucus, and blood. The Entocort made me really gassy and gas pain was the only pain I really had. We also tried steriod enemas for a week and Canasa for a few months. Neither helped me get any better. As we approached one year in flare, my doctor started talking about 6MP. I didn't like what I read on the internet about it but he claimes to have many patients doing great on it without side effects. He also says he's never seen a case of cancer caused by 6MP. I started on 50mg and then was increased to 75mg. Dosage is based on your weight and how your body handles it. I have since lost 30 pounds but still can't convince my doctor to let me drop to 50mg. I'm hoping the weight loss isn't a signal of further medical problems b/c I didn't do anything different to lose it and it came off fast. There is also much debate on the use of 6MP during pregnancy. There have been a few threads on here about that too. At this point I feel I need to reduce my dose or even stop it, but I do not want to flare again because that leaves only Remicade. Don't know if my ramblings helped any but I know I always like to read and learn from other people's experiences too.
  • 26 years old, married, Stay-at-home Mommy to 2 year old daughter 
  • Ulcerative Colitis since Sept. 2004
    • 1st flare Sept-Nov 2004
    • 2nd flare Aug. 2007-July 08 
  • Currently taking:75mg 6MP, 4 Lialda, Loestrin 24, Allergy meds., Maxalt for migraines and allergy shots once a month 
  • 10/6/08 Found a 1cm kidney stone in right kidney.  Had the stone blasted and passed the fragments.

 


Cadillac Lover
Regular Member


Date Joined Feb 2009
Total Posts : 235
   Posted 2/19/2009 12:45 PM (GMT -6)   
my gi just put me on 6mp after a 2-month flare, I have yet to take it because my white blood cell count was high in the blood test I took so she prescribed 2 antibiotics to take for 10 days first, then start on the 6mp. I'm taking 60mg of pred a day since tuesday. Hopefully the 60mg pred stops the flare so I don't even have to take 6mp. Guess we'll see.
Diagnosed with UC summer of 08.
Currently taking asacol 1600mg 3 x a day, Prednisone 60mg, 6MP 50mg.
Currently having a flare.


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 2/19/2009 2:42 PM (GMT -6)   
Mommy pooh said...
It took my 6MP 3 months but it can also cause other problems. Liver damage, pancreatitis, kidney problems, and other issues. I am worried that my 6MP is responsible for a condition called porphyria which is very rare and I'm currently trying to find a doctor that will treat me. I have been to 2 doctors so far and they keep sending me on because they don't know anything about this condition. I am currently waiting on an appointment to a research hospital with a hematology/oncology specialist. Will update for others for their knowledge because it seems like no one has experienced anything like this.

I was wondering if you could email me or talk to me more about this porphyria condition?
 
My aim is vin1382 and my email is vin1382@hotmail.com
 
I have been having unexplained fevers, diareha, fatigue, etc for about 5 weeks now.  it doesn't appear to be colitis/chrons based as my colonoscopy showed very mild proctitis. 
 
Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 30 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 2/19/2009 2:45 PM (GMT -6)   
Elaine, huge hug for sending me that link. I had not found that web site in all of my research. It seems the people on there are equally confused as me about porphyria and having a hrard time finding a doctor too. Again, I will update when I find something out which seems like forever!
  • 26 years old, married, Stay-at-home Mommy to 2 year old daughter 
  • Ulcerative Colitis since Sept. 2004
    • 1st flare Sept-Nov 2004
    • 2nd flare Aug. 2007-July 08 
  • Currently taking:75mg 6MP, 4 Lialda, Loestrin 24, Allergy meds., Maxalt for migraines and allergy shots once a month 
  • 10/6/08 Found a 1cm kidney stone in right kidney.  Had the stone blasted and passed the fragments.

 


ElizaLily
Regular Member


Date Joined Dec 2008
Total Posts : 34
   Posted 2/19/2009 9:40 PM (GMT -6)   

I was having real trouble around 7 years ago.  Pred didn't help and only made me feel weird emotionally and rotten about the moonface thing.  I started on 6MP and a month into it I was feeling much better.  That remission lasted about 6 years.  I didn't have any negative side effects from the 6MP (that I know about) and I would recommend it to anyone not wanting to go on Pred or having trouble with other meds.  about a year ago I had a very stressful time and a bad flare started and has continued through the year.  I've tried all sorts of things including Golimumab - with little change.  Funny enough, I was away in Bahamas over the last week and felt much better!!  Guess I just have to get away more often!  I hope if you do try 6MP that it works for you.  Good luck and good health to you.

 

Eliza


43 year old female
Left sided UC for 25 years
Remission with 6MP for the last 6 years - until now.
Flaring for several months - worst flare ever.
Meds:
4 Salofalk/day
6MP 4x a week
Golimumab Study
Currently trying the sunflower/spinach diet (thanks, cfromutah!)
 


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 348
   Posted 2/20/2009 8:07 AM (GMT -6)   
Thanks. I really appreciate the care and the responses. I am wondering what kind of dose you had to use to get UC under remission.
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg


Mommy pooh
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 2/20/2009 8:55 AM (GMT -6)   
The stmptoms I'm having that led my urologist to run the porphyria level urine test are: dark (coke like) urine, weakness, fatigue, anxiety, mood swings/depression, times where I get very shaky, chest and muscle pain, hallucinations, and constipation. Other symptoms that are listed but I am NOT having are abdominal pain, skin problems, painful skin when in the sun, seizures, vomitting, fever, paranoia, rapid pulse and high blood pressure

The only thing I know about porphyria now is what I have read on the internet. It has been over a week and a half and I still haven't heard from the research hospital that was supposed to be getting me an appointment. I am now taking steps to try to get an appointment with the Mayo Clinic in Jacksonville, FL. Their web site actually talks about treating porphyria and the team of doctors that deals with that. My doctor's office is closed until March 2 for vacation so I did a form on the Mayo Clinic's website to get an appointment. It says someone will contact me within 48 hours. I will update when I have my appointment and know anything. Again, I am thinging that this is medication induced and not the most popular kind which is genetic.
  • 26 years old, married, Stay-at-home Mommy to 2 year old daughter 
  • Ulcerative Colitis since Sept. 2004
    • 1st flare Sept-Nov 2004
    • 2nd flare Aug. 2007-July 08 
  • Currently taking:75mg 6MP, 4 Lialda, Loestrin 24, Allergy meds., Maxalt for migraines and allergy shots once a month 
  • 10/6/08 Found a 1cm kidney stone in right kidney.  Had the stone blasted and passed the fragments.

 


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 2/20/2009 10:39 AM (GMT -6)   
I recently went through a year long flare. I was hospitalized back in January for the 2nd time in less than a year. I am now on 75mgs of 6MP (today is ONE MONTH) and just got weened down to 5mgs of prednisone. My GI knows how much I hate the pred and I am completely dependant on it. she said the 6MP can take up to 3 months too and I should not give up hope. I am trying not too.....
I feel your frustration and pain! Good luck with your treatment and I am sorry about your condition porphyria.
severe ulcerative proctitis - march 05 diagnosed
proctosigmoiditis - january 09 diagnosed
hospitalized - 3/08 for 6 days of IV steriods
hospitalized - 1/09 for 5 days of IV steriods / put on 6MP (50 mgs)
past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
current meds: 6MP (50mgs), Asacol 12 pills,  Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 2/20/2009 10:52 AM (GMT -6)   

Hi wishful - are you doing ok on the 6MP and 5 mg. prednisone.  I am tapering to 20 mg. tomorrow but have not been started on anything else.  Doc said to call after a couple days at 20mg.  He said before considering 6MP or something like that for maintenance.  Hope it is working for you.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only few cm. left to heal in rectum - tried Proctofoam for weeks - no luck.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
Tried hydrocortisone for two weeks with no change.
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 
 
 
 
 
 


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 2/20/2009 1:14 PM (GMT -6)   
I am doing okay. Definitely in much better shape than I was on January 20th when I got admitted. Today after dropping from 10  to 5mgs...I can feel a lot of activity going on in my belly. I also have been chewing sugarless gum all day...which is a big no no for me. Anyway, I think the 6MP is starting to work. I still have blood when I wipe...but its not dripping. I think the real answer will be when I am off the prednisone.
 
Good luck Eliane!!
severe ulcerative proctitis - march 05 diagnosed
proctosigmoiditis - january 09 diagnosed
hospitalized - 3/08 for 6 days of IV steriods
hospitalized - 1/09 for 5 days of IV steriods / put on 6MP (50 mgs)
past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
current meds: 6MP (50mgs), Asacol 12 pills,  Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 2/20/2009 1:49 PM (GMT -6)   
     Nostra...my GI doctor had me take the 6MP along with the prednisone.  It took about 3 months to "kick in".  I started the 6MP about five years ago.  I still get yearly flares...at least for the last three years I have.  Last year I was admitted to the hospital and my GI doctor took me OFF the 6MP because my pancreatic enzyme levels were through the roof.  about six days later, my enzyme levels had returned to normal.  I must mention that I was on prednisone when admitted.  At my first GI doctors visit after my hospitalization, about a month later, my GI doctor put me BACK on the 6MP but carefully monitors my blood.  He started me back at 75 mg but my WBC went down to 2.4.  Being a former lab tech, I was NOT happy with this low of a white count and lowered my dosage to 50 mgm.  The only adverse effects I notice is the thinning of my hair.  It isn't actually falling out, just getting thinner. 
     I've been in remission since Nov 1st.  Feel wonderful.  I get my blood drawn..CBC, monthly and see my GI doctor every three months.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 2/20/2009 5:11 PM (GMT -6)   
I also hate prednisone, doctor put me on 6mp (I also have the HLA-B27 gene) and it has worked for about three months, just starting to flare again....i find this happens with every drug they give me...
HELLO FROM NEW ZEALAND

38 year old female
UC - Diagnosed 2006
HLA-B27 Gene
Iritis 2008
Asacol
Mercaptopurine


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 2/20/2009 10:13 PM (GMT -6)   
i am confused....6MP seems to work miracles...but everybody says they ultimately end up flaring at some point. Why is that? I know there is no cure for our disease...but I feel like these drugs are all just temporary. I am just scared and sad right now.
severe ulcerative proctitis - march 05 diagnosed
proctosigmoiditis - january 09 diagnosed
hospitalized - 3/08 for 6 days of IV steriods
hospitalized - 1/09 for 5 days of IV steriods / put on 6MP
past meds: colozol, sulfasalzine, hydrocortisone enemas, canasa, rowasa and prednisone 
current meds: 6MP (75mgs), Asacol 12 pills,  Rowasa Enema, Primal Defense Ultra Probiotic, fish oil, calcium w/ vitamin d 2x a day, prenatal vitamin & extra vitamin c and b12.
 
 


ElizaLily
Regular Member


Date Joined Dec 2008
Total Posts : 34
   Posted 2/20/2009 11:12 PM (GMT -6)   
It's scary and sad. This thing is no picnic. Thank god there are these medicines that can help us - even temporarily. I've had a good 6 year run in remission with 6MP and for me it just seemed to stop working at a certain point - probably when prompted by certain stresses. Now I'm looking for my next "6MP" to get me into remission for another 6 years. I hope you can get some relief from one of the meds out there.

Eliza
43 year old female
Left sided UC for 25 years
Remission with 6MP for the last 6 years - until now.
Flaring for several months - worst flare ever.
Meds:
4 Salofalk/day
6MP 4x a week
Golimumab Study
Currently trying the sunflower/spinach diet (thanks, cfromutah!)
 

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