G. James....Doc took me off Azth

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Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/24/2007 12:28 PM (GMT -7)   
Hey James; I had a call from my doc's office the other day because I had ordered another prescription of the az and he said he wanted me to either stop the az or the remicade; my choice but he preferred if I stayed on the Remi. I chose the Remi too, but he said the reason was the high incidence of lymphoma if taking the two together. So my question to you is....did you have any symptoms when you stopped taking the azth cold turkey? I asked if I needed to slowly stop, and he said no, just stop. I've had a few cramping pains, but I can't tell if it's because of stopping the az or if it's the antibiotic I had to start taking on Friday for a sinus infection. Geez, one thing or another, huh? Thanks for any info James! :-)
Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 464
   Posted 12/26/2007 5:08 AM (GMT -7)   

Carol - I believe different people react in different ways.  Some see their symptoms worsen whilst others do not.  I stopped it cold turkey a few years back and nothing happened.  But, a couple of years later I had a serious flare, which I have not been able to get out of... And aza has not helped as much starting it a 2nd time as it did when I first went on it - which quite a few people have also said has also been the case for them...

But, as you are on Remicade, I very much doubt your symptoms will worsen


Back on Pred - 6mg - Steroid Dependent :-(
Azathioprine 125mg
Actonel 35mg
Predfoam Enema
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 12/26/2007 6:11 PM (GMT -7)   
Hi Carol, I stopped Az cold turkey and didn't notice anything. I did, however start Methotrexate once a week a few days later.
I'm glad your GI took you off of it. BTW, from what I understand it's not a HIGH incidence of lymphoma, but still not worth the risk
My GI said they're begining to think there might not be any benefit to taking the two together anyway.
:)
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
Eleventh Remicade infusion End of January


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/26/2007 6:21 PM (GMT -7)   
Great, thanks for the info James and KSU! I'm feeling much better; maybe it was all the sugar I was consuming that caused the cramping! :-) Well, tomorrow is another infusion so it could be it's just time for that too. None the less, thanks for your input!

Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4819
   Posted 12/26/2007 8:59 PM (GMT -7)   
Carol,

Isn't one of the reasons that they give you Imuran is to prevent Remicade Antibodies from building up and thus making the Remicade ineffective? My thinking would be to stay on the Imuran and drop the Remicade for a couple of reasons.... 1) Imuran has been around for since the 1950's or 60' and there is a lot of data on Imuran/6-mp. 2) Your body might build up antibodies to Remicade without the Imuran; if you take Imuran alone you would not build up antibodies to the Remicade since you are not on it....if you needed it down the road you can start it back up again.

Prometheus Labs has diagnostic tests for both Remicade and Imuran....maybe your GI can have both tests run and the tests might tell you which medication you should continue with.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 12/26/2007 9:30 PM (GMT -7)   
That's a great idea Keith. It's a hard decision because I've had such great success with the Remi, and I don't want to go backwards! :-) I'll email him tomorrow and ask for the tests. I'm glad to hear from you -- hope you are doing well?
Carol

Remicade - will have my 19th infusion on December 27.
Imuran - 100 mgs....taken before bedtime
Vitamin B-12/Biotin, Probiotics

"Life is short -- make fun of it"
 
Co-Moderator for the UC Forum
 
 


GardenerJames
Veteran Member


Date Joined Jan 2006
Total Posts : 616
   Posted 12/26/2007 9:40 PM (GMT -7)   
Just a note - you can develop antibodies to Remicade by going on and off it too.
But I also am interested in your GIs thoughts :-)
James
Asacol 4 tabs 2x daily www.myspace.com/gardenerjames
Forvia once a day
Probiotic twice daily
Methotrexate 3 pills once a week
Actonel once a week
Calcium supp.
1 mg Folic Acid daily
Omega-3 once daily
Eleventh Remicade infusion End of January


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4819
   Posted 12/27/2007 3:53 AM (GMT -7)   
The GI that I use told me a few years ago that Remicade can lose its effectiveness overtime, he also has patients on only 6-mp/immuran for 20+ years without problems. Plus I would rather pop a couple of pills than going for an Infusion every 6-8 weeks.

Carol,

On-top of all of my health problems I ended up with the Flu 2 days before Christmas.... errrr. right now I am just trying to work out the logistics of surgery. I chose a surgeon but he doesn't take insurance, actually most of the CR surgeons in the NY area do not take insurance, so I am in the process of finding out how I am going to get the insurance company to pay for surgery. I am hoping for a 1-step laproscopic J-pouch. The family isn't happy with my decision they want me to try other things first before I go for surgery but I am just tired of UC and want it to be over.... I am really happy with my decision to have surgery (not that I have had it yet) but I am looking forward to being "Cured", I'm just so tired of it and tired from it. I'm at the point of having UC where I have just thrown up my hands and said enough all-ready.

Happy Holidays

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 12/27/2007 6:24 AM (GMT -7)   
Surgeons who don't take insurance? What are you supposed to do, pay for it yourself? I don't get that. It's got to be several thousand dollars. How are folks supposed to come up with that kind of dough?

Enlighten me, please.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 12/27/2007 6:55 AM (GMT -7)   

My doc is actually in the process of weaning me off the Remicade and is going to leave me just on the Aza.  However, he is not going to let me go completely off the Remicade until Humira is approved for UC.  This way - in case I have a flare up again while on the just the Aza - I'll have a fall-back plan if the Remicade won't work the second time around.   I'm now going for Remicade at about 12-14 week intervals and am overall doing fine.  

Mitz - many good docs don't accept insurance.  My GI does not.  However, my insurance will reimburse me for the visit.  It's just like visiting out of network docs.  For me it's worth it because I still get covered at 80/20 and I get to see the doctor I want.

Keith - will your insurance reimburse you for the cost of the surgery even if you use an out of network doctor?


KTM

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