Back on Imuran

[mshistory]

I was supposed to have my 3 month follow up with my rheumy last Thursday which got cancelled because of meetings; got his MA to get me in for this Thursday (yesterday) but Isaac decided to set up camp down here so THAT appointment was cancelled. His MA said he wants me to start taking 50 mg of Imuran daily (half the dose I was taking before), and tonight is night 3 of our new treatment plan.

Meanwhile, dryness problems getting so much worse  It's time to get a Rx for Salagen (because I can't afford Evoxac) but in addition to all the lupus-like symptoms I've had in the past, the dryness problems have caught up with me. I feel like my whole body is drying out.

Please keep your fingers crossed I can tolerate Imuran this time around - something needs to work!

In other news, I am amassing quite the wig collection 

[quietdynamics]

I hear you mshistory....I fell like I will soon be a cranraisin. I'm still using olive oil and taking some over for mom tomorrow as well...with her dehydration ..Iv roller-coaster.

Wish you good tolerance and "tides" with the Imuran.

[mshistory]

Thank you!

I think I have pleurisy again too. Stupid Sjogren's just won't stop throwing curve balls at me!

[gurs]

I cant believe how much these allergens drying me out...oh my gosh..setting off flares, making dryness even worse?
what to do? wish i had some answers. Cant explain the dryness to anyone, they just dont get it either..sick of people telling
me to drink more water? yeah right! if only it were that easy.

Gursie

[Cindy]

I really hope Imuran works for you with no side effects, 

Im so glad wigs are working for you, I may need a few in a few months. I have lost more than half of my hair in just 3 months. The curious thing is that I can see baby hair but is falling too. Does this happens to you?

[mshistory]

I really hope Imuran works for you with no side effects, 

Im so glad wigs are working for you, I may need a few in a few months. I have lost more than half of my hair in just 3 months. The curious thing is that I can see baby hair but is falling too. Does this happens to you?

My hair is so short that I can't really tell if little hairs are growing in or not - I do know that I lose hairs of all lengths but I don't know if those are hairs that were just cut shorter or were growing in?

If you decide to start wearing wigs, wigsupport.com is an awesome support group and there is so much valuable information there.

[Styx]

mshistory, best of luck with the imuran again. I know that when I stop taking it for a month, all of my problems come rushing back, and it takes at least 6 months before I'm feeling back to normal :-/ Boy imuran is great but slow!

Best of luck!

[SueAnn]

I read that Evoxac will start being available in generic around December.    I also am on Imuran and it really does help, but it took a long time to get to a full dose.  Then it took a while to kick in.

Best of Luck,

SueAnn

[gmomjuju]

Styx,

My rheumy left the practice and now I am seeing another one in the same practice.  I have been on Imuran since 11/09.  They do blood tests every 6 weeks.  There were some issues but my neutrofils were OK.  This new woman decided to change my dose and I have not been "right" since she did that.  My sed rates rose in July so she put me back on 1 in the am and and 1.5 every other night.  Whereas...before I was always 1 in the am and 1.5 EVERY night.  I am still not "right".  I see her again on 9/24.  Who knows what she will do then!

Judy

[Styx]

gmomjuju (and others),

I've found that rheumatologists are less experienced than gastroenterologists when it comes to AZA administration for immune-mediated diseases, which is likely due to AZA's prominence in IBD whereas MTX is preferred for most other conditions (i.e. try talking to a GI about MTX, and watch his eyes glaze over). I am fortunate to have initially had a gastroenterologist prescribe my AZA. They not only did TPMT testing, but they also did a few metabolite measurements (measuring 6TG and 6MeMP in the blood) as I took the drug. The latter is helpful for predicting therapeutic effectiveness and toxicity.

For instance, the test revealed that despite normal TPMT activity I had sub-therapeutic metabolite levels, even at 150mg so I was put at 200mg. Even at that dose, I have not had any leukpenia, etc. though my liver hasn't always been happy.

Just a thought. It might be good to talk to your rheumy about that test for all those on AZA.

Styx

[mshistory]

I read that Evoxac will start being available in generic around December.    I also am on Imuran and it really does help, but it took a long time to get to a full dose.  Then it took a while to kick in.

Best of Luck,

SueAnn

That would be wonderful! I could wait until December if that is the case. At this rate, it may take that long to see my rheumy anyway!! 

[mshistory]

gmomjuju (and others),

I've found that rheumatologists are less experienced than gastroenterologists when it comes to AZA administration for immune-mediated diseases, which is likely due to AZA's prominence in IBD whereas MTX is preferred for most other conditions (i.e. try talking to a GI about MTX, and watch his eyes glaze over). I am fortunate to have initially had a gastroenterologist prescribe my AZA. They not only did TPMT testing, but they also did a few metabolite measurements (measuring 6TG and 6MeMP in the blood) as I took the drug. The latter is helpful for predicting therapeutic effectiveness and toxicity.

For instance, the test revealed that despite normal TPMT activity I had sub-therapeutic metabolite levels, even at 150mg so I was put at 200mg. Even at that dose, I have not had any leukpenia, etc. though my liver hasn't always been happy.

Just a thought. It might be good to talk to your rheumy about that test for all those on AZA.

Styx

I already have leukopenia thanks to SjS. I have lung issues, probably early ILD, so can't take MTX; I can't take large doses of Imuran (or any immunosuppresant) because of the leukopenia... I'm a fun one to treat  Oh, and I'm allergic to steroids. How that is possible, I have no idea, but when I am given most oral steroids and some of the shots, I break out in a sunburn like rash (that actually feels hot to the touch too).

What is the therapeutic dose for IBD? I did see a gastro earlier this year and was supposed to have some tests done but had to cancel them for financial reasons - but we do suspect some sort of disease process. I will have to reschedule at some point. It's always something 

[Styx]

Hey mshistory, I'm quoting off the top of my head around 1.5-2.5 mg/kg, though it may be even higher than that these days. The metabolite tests demonstrate that a substantial number of patients were being underdosed historically.

Thing is, AZA metabolism is pretty complex, and even the metabolite tests don't tell the full story.

Yay for s#%^ against the wall pharmacology

Styx