the day has come to start Imuran

[irish]

Well, appt at immunology today during my monthly IVIG infusion and the decision was made to start the Imuran. We have all been talking about it for 5 years and putting it off, but my neurologist saw me during a bad spell end of January and said that we have "dinked around long enough and it is time for the Imuran"

I am sort of concerned but at the same time by doc says that they have over 30 year of documentation on the use of Imuran and it is the safest drug for now. The research indicates that people with autoimmune disease untreated have pretty much the same cancer rate a those who took imuran. This is because people who have autoimmune disease are at a higher risk for cancer in general.

This drug changes the way the teacher cells train the t,b and nk cells to identify dangerous cells and teach them not to overkill--in other words not try to kill us off by killing all our cells. My doc gave a really cool explaination about this but I didn't remember it for 2 minutes. I will be starting the drug on Thursday-50 mgm twice a day for 2 weeks and then blood work.

If blood work is ok then I will up the dose a little and when I have my infusion 2 week after that they will do blood work prior to infusion to see how I am doing liver and white cell wise. After that blood work once a month. This drug works slowly so once a month blood work is acceptable. She said that in 4 months I should start to show some improvement. According to her the reasearch shows that 10% of patients will have some effects that will cause them to stop the treatment. This is low according to her.

So, time will tell. Can't put it off any longer a I was on the 20 mgm of prednisone and when I dropped down to15 mgm my nasal cartilege ( septum) started in be afffected again. This is getting worse and causing pain and probably connective tissue damage from my nose to heavens knows where in my head. Pain goes through to the back of my head. This is just one of the many issues I have been facing. Such is life. Could be worse. Let you know how it goes. I will be on prednisone, plaquenil and the imuran and hopefully get rid of the prednisone as soon as possible.. Irish

[Styx]

Congrats on starting AZA, irish! I consider myself a bit of an AZA expert so my unsolicited 2 cents follow

I am sort of concerned but at the same time by doc says that they have over 30 year of documentation on the use of Imuran and it is the safest drug for now. The research indicates that people with autoimmune disease untreated have pretty much the same cancer rate a those who took imuran. This is because people who have autoimmune disease are at a higher risk for cancer in general.

I wouldn't accept that as true nor false. There is evidence suggesting that, particularly in the context of Sjogren's, you/we might be considerably increasing your/our risk of lymphoma using AZA, but the quality of evidence either way is low.

This drug changes the way the teacher cells train the t,b and nk cells to identify dangerous cells and teach them not to overkill--in other words not try to kill us off by killing all our cells. My doc gave a really cool explaination about this but I didn't remember it for 2 minutes.

Yeah so he probably made up half of that and the other half is based on supposition from unconfirmed in vitro data. The truth is we know very little about why cytotoxic drugs are such effective immunosuppressants, particularly since lower blood counts doesn't typically correlate with effectiveness.

She said that in 4 months I should start to show some improvement.

AZA is the slowest drug on the planet (or at least it will feel that way). You won't see maximum benefit for 6-12 months so don't despair if you go even 6 months without seeing benefit.

However, have you performed a TMPT test? Also, if you can convince your rheumy to get 6-TG and 6-MMP measurements a month after you start to possibly adjust the dose, that might save you a lot of time.

I was on the 20 mgm of prednisone and when I dropped down to15 mgm my nasal cartilege ( septum) started in be afffected again.

Off topic: irish, our symptoms are so similar. Have you ever had an anti-pr3 test to look for Wegener's?

Best of luck!

Styx

[gurs]

Irish..

Guess we have to bite the bullet...I tried Imuran several years ago, and felt better overnight..it was a miracle for me!!!

Sadly, two months later I got candida in my esophagues and had to stop it..when I tried to take it after that, I got super sick.

I would start the lowest dose possible and go from there...take it in the evening incase of side effects etc.

Im sure you will do fine..dont worry..maybe your miracle drug?

gursie

[Joe S.]

I wish you good luck with this new for you medication. I hope that it helps you feel like a new person and ready for all the activities you wish you could do. No side effects or interaction or cancers, only the best of options.

[CMNK12]

Irish,
   I was on Imuran for about 5 years And did not realize how much it helped until we stopped it.   New meds do not hold a candle so far to Imuran. I felt a lot better mouth, eyes, skin, joints and this crazy tingling in my legs when I was on it. My left thigh muscle is killing me with spasm because my hip is so tight now.   I only hope to go back on it because I can't deal with this any more along with the dyspnea.
   So, In other words, I hope it is a wonder drug for you too. CK

[sjenny]

Irish:

Like everybody here, I sure hope this will be the wonder drug for you!  Praying that everything goes well for you - it sounds very promising!

Sue

[Dolly Dimples]

Irish, thanks on the update.  So sorry things have gotten this far, but the others here who have tried it seem to have nothing bad to say about Imuran.
Dont know anything about this drug, but you are so wised up on things Irish, if anyone can go the full battle it is you !!
        Best of luck and keep us posted, Dolly x.

[Carebear]

Irish,

It sounds like you are in excellent hands, and that this drug will offer great improvement for you.  Wishing you the best.

[mshistory]

Good luck, Irish! I just went off Imuran after nine months - it did start to cause liver problems for me, but I'm also very sensitive to medication side effects. It is a big help to many, and I hope it works well for you!

[eyeamdry]

Irish, you are about 4 or 5 days ahead of me on the Imuran.  I am taking one 50 mg tablet for 2 weeks and then I'll have to get bloodwork before they up the dosage.  I expect them to as their goal is 3 50mg pills a day.  Also prednisone (not quite sure on the dosing yet)  probably 30 mg a day and I'm going to build up to that.  I am taking a pred pill tomorrow for the first time on this round.

Good luck to you and I hope this works for you.  I'm still on plaquenil and have no notice of being taken off that.  I have felt no bad effects of Imuran yet in 5 days.  I'm doing 1 pill at a time so I can see which one causes trouble if one does.  Lucy

[gardenlover]

Best of luck with this!!  Please let us know how it goes for you. 

[Ark mom]

Irish, I really hope this works for you.  I am still struggling with finding the right med for me, too.  This may be next on my list.  Take care.

[Nancy60]

Irish,

I hope this work for you.  Please let us know how you are doing.

Nancy

[Mellie]

How's the Imuran working for you?  I didn't notice a difference when I took it for a few months. 

[gurs]

Lucy,

Glad to hear your doing ok in Imuran......Its just amazing how everything effects us all so differently..I, like most seem hyper sensitive to everything..even a motrin...my whole body just flips out...yucky.

Anyways, all we can do is try right...sometimes, medicine is a godsend and can really help.

Gursie