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Re: Azathioprine - Mycophenolate mofetil
Hi everyone.
Update - Seem to be getting a lot of heartburn constantly from the mycophenolate. Eating and even drinking water brings it on. Read on info that came with medication, not to maybe take antacids I think I will get my dr to verify this so to see if I can get relief from the heartburn/reflux/gord.
Also Have very chesty cough. No cold or flu symptoms but, so thinking its related to the meds also. Unless Wg is smouldering.
Not a total fan of this stuff so far. i See my dr in about a week. I guess more time may be needed to see if it's helping or not.
Anyway fun and games.
Thanks again,
Angela.
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Re: Azathioprine - Mycophenolate mofetil
I get terrible GERD from the meds. My rheumy prescribed Prevacid. Works great. Hope you get better soon!!
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Re: Azathioprine - Mycophenolate mofetil
Hi Angela,
Have you/can you take Nexium?
Nexium is recommended when taking high doses of prednisone.
I take it in the morning of the day I take methrotrexate.
Ed.
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Re: Azathioprine - Mycophenolate mofetil
Have Somac which I guess is similar.
Seeing Dr tomorrow. See what happens. Guessing He will leave me stay on the Myco for a while
Angela.
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Re: Azathioprine - Mycophenolate mofetil
Originally Posted by
bdawg212
I have major nose crusting. There's actually a hole through my septum now. An ENT prescribed a sesame oil concoction made at the Mayo Clinic and shipped to me that really has helped the crusting, and the hole hasn't gotten bigger thank goodness. I just always try to tell myself, it could be worse. I could have lung and kidney involvement again.
Rituxan didn't work for me, neither did CellCept or methotrexate, and after my pregnancy, neither did azathioprine. The only thing they could use for months to control my high sed and CRP was Prednisone. So I can actually tell you what happens when they run out of immunosuppressants...they try DMARDs. Right now I'm on Plaquenil and somehow, SOMEHOW, it seems to be working. Fingers crossed it continues as I come off the prednisone.
I will send good vibes that CellCept works for you!!! <3
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I tag @freakyschizogirl who also started Plaquenil.
Btw, there is another wg med that you didn't try yet - it is called Arava. Ask your dr.
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Re: Azathioprine - Mycophenolate mofetil
I actually was on Leflunomide for less than a month. Had a bad reaction to it and had to come off. Sorry, forgot to mention that. I was so wary to start it because of the staying in your system for two years thing, but it was the last one to try apparently.
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Re: Azathioprine - Mycophenolate mofetil
Thanks everybody for your advice and input. Very much appreciated. It is good to compare treatments available and outcomes/side effects.
Saw my Dr. (Renal) They are leaving me on the Myco to give it more time to see if it helps. I said I felt worse since on it but they want to continue for now. Said about my chesty cough. Questioned whether I have the flu or cold. No I said no flu or cold symptoms at all. They said a lot of flu virus around (winter in Aus). But I know its not that. But oh well. Will continue taking the Myco and see them again in another 4 weeks. I asked about Rituximab but I don't think that will be offered any time soon.
Will see how I go on the Myco.
Have a great day and keep on smiling . .
Angela
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Re: Azathioprine - Mycophenolate mofetil
Further update
Went along to see my drs again at Renal Clinic. On the Myco now for a couple of months and My Anca is still rising.
Also white cell count is a bit too low. They are leaving things as is for now until next visit but mentioned
stimulating bone marrow injection to try to boost wbc count.
Apparently considering increasing dosage of the Myco but of course then that could decrease more my wbc count. A vicious circle.
I have to keep in mind that there are worse things out there affecting other people which helps me get over feeling a little
down about this journey.
So I will take time to smell the roses, my roses, and enjoy the little things in life that are great and we shouldn't take for granted.
Take care all,
Angela.
Remember to take time to smell the roses .......
And keep on smiling
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Re: Azathioprine - Mycophenolate mofetil
Originally Posted by
Angela
Further update
Went along to see my drs again at Renal Clinic. On the Myco now for a couple of months and My Anca is still rising.
Also white cell count is a bit too low. They are leaving things as is for now until next visit but mentioned
stimulating bone marrow injection to try to boost wbc count.
Apparently considering increasing dosage of the Myco but of course then that could decrease more my wbc count. A vicious circle.
I have to keep in mind that there are worse things out there affecting other people which helps me get over feeling a little
down about this journey.
So I will take time to smell the roses, my roses, and enjoy the little things in life that are great and we shouldn't take for granted.
Take care all,
Angela.
If it seems that cellcept is not stopping the wg activity, I would ask to switch to rtx.
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Re: Azathioprine - Mycophenolate mofetil
This is interesting news, as I am have been on Rtx since the hospital (2 years ago in November). By that I mean I have had my doses every 6 months, starting at 2 units, now up to 4. I was on methotrexate as maintenance which didn't work that well, then we went to arava (leflunomide) which I have been on for over a year. Yesterday I saw my rhuemy and he said our next option given my continued sinus issues, persistent hip pain, and marginal improvements since my infusions in July/August, was to go with Imuran (azathioprine). We did a blood test to confirm that I am able to metabolize it, and we will see what that says. At this point I don't know what to think. I know Imuran can make you feel like crap, especially after your initial load dose. On top of that the continued blood tests just frustrate me. I can only imagine what it must be like for you having gone through all of this. I had a very severe case of Wegners, and its frustrating that it is so hard to control after such a short period of time.
I hope that your myco treatments have helped. Cheers!
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