Not sure what to do about 6mp

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/31/2009 9:11 AM (GMT -6)   
I didn't finish the loading dose of Remicade, I had 2 infusions and then a major reaction that landed me in hospital for 3 days.
2 doctors came straight out and said it was the Remicade, 2 others said no one could know for sure.

Onto my visit with my GI, he didn't know for sure either. He said I could finish the loading dose by having the 3rd infusion,
I was too scared and said no. They found an enlarged lymph node in my chest on the CT in the hospital. Of course I am freaking that
its early lymphoma.

So, I am in remission with my UC and feeling GREAT after a 4 month long flare. I'm even off of steroids for 3 days now! I'm also going
on vacation to the Bahamas in 3 weeks. My GI wants me to start on 6mp immediately and come for weekly blood tests. I read that people
who got lymphoma were on 6mp and Remicade and I'm sure the Remicade is still in my system, but not only that the 6mp seems like it
has all of its own side effects and risks. I just don't know if I should start this before I'm going out of the country and if I should start it
at all if I"m feeling well. GI thinks I am feeling well because of the Remicade and because I am going away it is all the more reason to start the 6mp immediately.

What would you do?

I'm not trying to be overly anxious, just get your thoughts. I just picked up the 6mp from the pharmacy today.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, starting 6MP

Discontinued: Prednisone, Remicade (bad reaction to second Remicade infusion)


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 5/31/2009 9:26 AM (GMT -6)   
I think the risks of Remicade and 6mp combined are higher only if it's for long periods of time so I wouldn't worry about that. I would be torn too about the 6mp while going out of town. How long are you going to be gone? My GI said the side effects with 6mp go away if you discontinue taking it, so I guess you could start and see how you do. Or, not take it until you get back and bring some pred with you in case you start flaring. Best of luck with you decision!
32 yr old female
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon?


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 5/31/2009 9:26 AM (GMT -6)   
If you do decide to take the 6mp (which I think you should), you should take it ASAP so that you can start the usual estimatetd 3 month kick in. 

I was given the option of taking 6mp or Remicade.  I chose 6mp becuase it has more of a history then Remicade which makes me feel a little more comfortable.  I didnt feel comfortable starting a drug that has only been around for 11 years.
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
6MP - 50mg - started 5/04/09
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3  
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/31/2009 9:59 AM (GMT -6)   
Shadam said...
If you do decide to take the 6mp (which I think you should), you should take it ASAP so that you can start the usual estimatetd 3 month kick in.

I was given the option of taking 6mp or Remicade. I chose 6mp becuase it has more of a history then Remicade which makes me feel a little more comfortable. I didnt feel comfortable starting a drug that has only been around for 11 years.


This is what my GI said. He said its even more important for me to take the 6mp now before vacation. I was just afraid of getting sick while I am away (with the low white count, etc.)
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, starting 6MP

Discontinued: Prednisone, Remicade (bad reaction to second Remicade infusion)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/31/2009 10:35 AM (GMT -6)   

Ok, I have been on 6 MP for three months.  I do believe it may finally be working for me.  My experience with side effects is that I can take 50 mg. with little problems - some nausea in morning and tired.  However, when I raised the 6 MP to 75 mg. as the doctor wants, I get dizzy, nauseated, headaches, etc.  I am very sensitive to all medication however and 69 years old.  So, I am staying on 50 mg. - had blood tests and should be back soon to see how I metabolize the medications.  The main thing is to be blood tests for your white count after a week and if ok - probably get tests every month or anybe just before you leave on vacation to be sure.  6MP can be stopped safely at any time and your body will return to what it was before you started it.

Hard to know what is best for you!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 5/31/2009 1:01 PM (GMT -6)   
     I have probably been on the 6MP longer than anyone in here, six years.  I was under the impression that the 6MP is started while flaring along with prednisone.  I may be wrong but that is how I started.  To be honest with you, the 6MP has NOT kept me out of flares.  As a matter of fact, I am starting to flare now...again.  I did enjoy seven complete months of remission, no urgency, no diarrhea, no bleeding.  My problem is ulcerative proctitis.  As far as I know the UC has not traveled further into the colon, which is a good thing.  My symptoms now are mucus in the stool and pressure in the rectum.  I KNOW that is a beginning flare.  I started on the Cort enemas but they seem to burn.  Think I will just stick to the Canasa instead.  By the way, I cut my dose of the 6MP down from 75 mgm to 50 mgm  because my white count was down to 2.4.  NOT GOOD.  Have a great vacation in the Bahamas.  Have you ever been there before?  We were there a few times on cruises...just loved it!!!
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.


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 5/31/2009 7:19 PM (GMT -6)   
goodluck staying in remission. I don't know what I would do if I were in your shoes. Can you use some 5ASAs to help keep you in remission?
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa at night + Probiotics + Iron - So far so good!!!
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 5/31/2009 8:01 PM (GMT -6)   
I don't have all of the answers, but share my experiences. The 6mp has few to no side affects for my daughter. It takes so long to kick in, that it makes sense to start it soon. The Lymphoma issues seem to be concentrated in males, in people on both medicines, but it is still quite a RARE occurrence. Ask for the stat's. I am surprised they didn't start you on the 6mp BEFORE the Remi, as that is more "traditional". The 6mp has to be monitored, but not weekly(think it is every 2 months or so).They need to see if your kidney's can eliminate it, and they also test to see what dosing gets you to what level---somewhere around 200 is therapeutic. I'd be more afraid to be out of the country in a big flare, than on 6mp, but that is just me.
Goodluck
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/31/2009 8:04 PM (GMT -6)   
You mean people are usually on as high as 200 mg. of 6MP for it to worK? I cannot even tolerate 75mg. Maybe it is not for me. I am starting on 4th month. ElaineNY
 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 5/31/2009 9:17 PM (GMT -6)   
no, no---not 200mg. My daughter started at 50mg(one pill), and then went to 75, then alternated, and now back to 50mg. The 200 number comes from the Prometheus lab to indicate its effectiveness---it is some kind of level in your system, where 200-400ish is considered therapeutic. Sorry, my doctors training is limited, so my communication on the exact details is sketchy.
Daughter,15 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Prevacid, Flagyl, Prednisone- 50mg to 0, 4 major flares '08.Hospital four x. Low residue diet,
6MP, Colazal , Cortifoam enemas,
Trying probiotics, Niferex, fish oil, Magnesium, Acupuncture.
Remicade 10mg per kilo@ 8wks, since 10-08. Still on 6mp and Colazal


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/1/2009 9:21 AM (GMT -6)   

That is ok - maybe sometimes we know TOO much!  Anyway, I am waiting for the prometheus results for me.  NP is supposed to call me - been long enough but no word!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 - staying on 10 mg. prednisone also until visit with specialist.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 6/1/2009 12:45 PM (GMT -6)   
My GI is very conservative. Starting the flare he just watched while I was on colazol and when that wasn't responsive, he started me on prednisone. He wanted to give that a while to become effective. I was hospitalized twice and given the fact that the prednisone wasn't working and I was so ill, they didn't want to do 6mp because it can take so long to work so they started me on Remicade because it can take effect quickly.

We are going to Atlantis on Paradise Island. We went there last year and honestly after being so sick (and in the hospital 3 times in 2 months) I don't want to jeopardize this vacation in any way!

Hubby thinks I should try the 3rd infusion of Remicade but I'm so scared that will put me back in the hospital! Given what I know about allergies, I really think I have a Remicade allergy but again, no one can say for sure if my whole infection was Remicade related.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, starting 6MP

Discontinued: Prednisone, Remicade (bad reaction to second Remicade infusion)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 6/2/2009 12:09 PM (GMT -6)   
     I agree with you Shellie.  I would stay off the Remicade too.
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.


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 6/2/2009 2:32 PM (GMT -6)   
Christine1946 said...
I agree with you Shellie. I would stay off the Remicade too.


I was supposed to go for third Remicade tomorrow. Spent all night reading studies and just made decision (an hour ago) to go with 6mp.
Took my first pill today! Praying for NO relapses and that I made the right decision about Remicade!

Wish me luck!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, starting 6MP

Discontinued: Prednisone, Remicade (bad reaction to second Remicade infusion)


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 6/2/2009 2:59 PM (GMT -6)   
     Good luck and God bless!
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.

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