Sent to Manitoba for testing

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Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 12/3/2009 7:26 PM (GMT -7)   
Looks like in the near future I'm going to be sent out of province (Manitoba) for testing.  My rheumatologist is looking at putting me on Imuran (Azathioprine)...what I don't understand is exactly what this test is for...I know they're testing for TPMT Enzymes..but I don't get the why.  Did anyone else have to get special testing to go on this drug?   They give me bloodwork to do here in the city/province where I live...and then if it's satisfactory to them, then I'll be sent to this lab in Manitoba to do the final test...I find it quite fascinating to be sent out of province...weird too..almost makes me feel special *L* but who wants to be sick in order to be made to feel special.  Kind of backwards don't you think?  I've never been to Manitoba before.  It'll be a first for me if I go.  Originally they said that they were going to have to send me to the states to the Mayo Clinic, but looks like they've made a place available in Canada to do the testing.  I know that my Rheumy said that Plaquenil doesn't appear to be working fully for me..so this is the next step.  To see if I can go on this.  Just looking for others stories on it.  Also just wanting to share my story :)  Thanks everyone for reading.
 
Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops
<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/3/2009 8:27 PM (GMT -7)   
Learn something new every day.  This is testing for possible azathioprine (imuran) toxicity problems. 
 
 
I have been on imuran for 4 years but have never heard of this testing.  Some patients reject imuran immediately and further treatment with it is stopped immediately.  Others, like myself, encounter toxicity after being on it for a long time.  It forced a reduction in dosage for me to stabilize my blood numbers (wbc, rbc, and platelets).
 
Maybe those tests would have predicted my reaction?????
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 12/3/2009 9:02 PM (GMT -7)   
From what I understand they're testing me for an enzyme called thiopurine methyltransferase (TMPT) here in town and sending my bloodwork away on packed in ice...I'm pretty sure that they said they were sending me somewhere for testing....but maybe I'm confused? We'll see...I don't fully understand this med...kinda scary to hear about the toxicity problems...was it a horrible experience for you when your body started to react to the meds?

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops
<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7022
   Posted 12/3/2009 9:08 PM (GMT -7)   
I was on Imuran for about 18 months -- for me there were no side effects at all, but also no beneficial results. If they can now do testing ahead of time to see if it will work for you or not that would be great.

With Lupus, all of us manifest different symptoms in different ways - unfortunately we also react to the different medications in different ways. Cellcept was the one that worked for me, for others it is Imuran or MTX or....it's pretty much trial and error -- so if testing helps cut down on the guesswork that would be great!

In any case, hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/4/2009 8:23 AM (GMT -7)   
Ellie,
 
Imuran is an old med (been around for 30 or 40 years) and has been taken by millions of patients, mostly without problems.  Some react to the drug immediately and are taken off and another tried.  Others have problems over time and it usually hits the blood which is why you should get tested every 2-3 months with CBC tests....not the one you are getting.
 
Probably the biggest risk is an increased risk of cancer. Cancer screening that is age and gender appropriate is wise.  However, all of the suppression meds carry a higher risk of infection and cancer so you can't get away from that risk entirely no matter what you take.  When deciding on any med there is a risk/benefit analysis that should be done....does the benefit of taking the drug outweigh the risk of side effects.  That is true with every drug we might take including aspirin.
 
It is also used as a transplant med.  It is very well known and documented unlike newer drugs so it is not that scary.  I am still on it after 4 years and will probably be off in the next year.  Other than lowering my rbc, wbc and platelets I had no side effects whatsoever.  Blood tests caught the problem and my rheumy reduced the dosage and all is well.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 12/4/2009 9:11 AM (GMT -7)   
I was on Imuran for 10 days. Before I started the bloodwork was done to test for possible problems. Rheumy found no problems so we started the treatment. I lasted 10 days, then had a full blown systemic reaction. Very bad. Make sure you stay up to date on the bloodwork and let the doc know if you start feeling badly! I was taken off the Imuran immediately and the reaction subsided. I am now on CellCept which, so far (fingers crossed), is turning out to be my wonder drug. Now if we could just get insurance to cover it!
Good Luck. I hope the Imuran is your wonder drug!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/4/2009 9:25 AM (GMT -7)   
Fran,
 
You are a good example of someone who has hypersensitivity to imuran which is discovered quickly.  Most patients have no reaction but still need periodic blood work to make sure nothing detrimental is happening while on it.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 12/5/2009 12:57 PM (GMT -7)   
I guess I just have to count my lucky stars for the availability for this expensive blood test, and that it's even possible...I know now that there could be an adverse reaction in my body and to watch out for it when I start the med...I don't know if/when that'll be, but all in time. I'm thrilled with the possibility of being able to feel better with the addition of a new med, but not thrilled with the effect it's going to have on my paycheck...I just added up what I pay on meds p/month and it's sick...But, then I think of how lucky I am that I don't have to pay for docs appnt's and such..I truly am thankful, and therefore I have no complaints. I'm going to get the bloodwork done on Mon. Here we go :) Thanks for your comments everyone.

-Ellie
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops
<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 12/5/2009 1:05 PM (GMT -7)   
Ellie,
 
If you do take imuran don't be inpatient.  It can take up to 6 months or more to reach full effect.  It is not a fast acting med like prednisone.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


Ellie27
Regular Member


Date Joined Oct 2008
Total Posts : 119
   Posted 12/5/2009 3:16 PM (GMT -7)   
Thanks for the tip...I've never used Prednisone before...my only experience is Plaquenil...I am just hoping that with time I will be able to do more and more physical activities..like longer walks, maybe running a bit? We'll see...I'm just hopeful, and willing to try something new to see if it makes a change. That's all:)
It is God that gives me the strength to carry on in the valleys of life and the wings to fly to the mountain tops
<FONT color=#008000>Dx: Diagnosed with Epilepsy Jan 2005, SLE July 2007, since then, Raynauds, Alopetia Areta, Vasculitis, discoid lesions, Endemetriosis March 2008. Meds: Tegretol, Plaquenil, quite often Flurbiprofen and Rabeprezole, as well as various other supplements/vitamins.

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