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Thread: Azathioprine - Mycophenolate mofetil

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    Red face Azathioprine - Mycophenolate mofetil

    Hi. Angela from Australia here. Was diagnosed with Wegeners Gpa (severe)4 years ago or so. Had cyclophosamide infusions for first 6 mths or so alongwith usual high dose prednisone. Since that initial time have been on Azathioprine 200 mg and varying lower doses alongwith off and on pred.

    Doctors now realise the Azathioprine hasn't been working. Anca has been going up gradually. And have now prescribed mycophenolate mofetil 1000 mg daily which I start on Monday. They have also said I may go on Rituximab in future.

    Looked up some info on the myco mof and its side effects - aren't very attractive at all. Has anybody had experience being on this and did it help? And did you experience side effects? - serious ones?

    Not looking forward to going on this medication.
    Already have low white cell count and shot liver enzymes , low globulin, stomach problems, gerd, thinning hair from wegeners treatment

    Kind regards and thanks for any info on the mycophenolate mofetil

    angela

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    Default Re: Azathioprine - Mycophenolate mofetil

    Hi Angela,

    I was never on the Mycophenolate.

    Actually most of our meds have scary list of side effects.

    But I suggest you to ask for rituximab, for 2 reasons:

    1. Less side effects for most of us.

    2. It works much better, it is stronger then Aza or Mycophenolate.

    Good luck and please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: Azathioprine - Mycophenolate mofetil

    Thanks Alysia for replying. Very much appreciated.
    And yes, it seems that our medication options all have many unwanted
    nasty side effects. I wish I could go off all medication and have a break
    but I guess that's not very advisable.
    My doctor has suggested Rituximab next. But first wants to try
    the mycophenolate.
    Will start taking it on Monday as prescribed I guess. Hopefully its only
    short term and I fare ok on it.
    Thanks once again, Alysia for taking the time to reply.

    Angela

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    Default Re: Azathioprine - Mycophenolate mofetil

    Hi Angela,
    I was started on Cyclophosphamide and prednisolone, but couldn't tolerate Cyclo. I was moved on to pred and Azathioprine and this worked well for many years.
    But after my last relapse/flare Azathioprine was holding my flare back, but I couldn't achieve remission. I was then started on Rituximab.

    But I do now have experience of Mycophenolate Mofetil as I am on this medication since I had my kidney transplant. My side effects to this drug was very loose stools. To combat this make sure that you take with food. The other recommendation would be to split your dose throughout the day (I take 500mg 3 times/day). It still took about 6 weeks for my body to get used to this drug. My stools are still soft, but for most days they don't cause any concern.

    As a last resort, I was told that Mycophenolate Mofetil could be changed for Mycophenolate Sodium (Myfortic) as the gastrointestinal symptoms are much better. The only reason this was not offered earlier on and the transplant nurses wanted to see if I could get used to the drug (which I have) was purely down to cost (I am an NHS patient so the cheapest, yet still effective, option will be chosen).
    Diagnosed April 1995

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    Default Re: Azathioprine - Mycophenolate mofetil

    Hi gilders,

    Thanks so much for your reply and relaying your experience with this medication.
    I start on it tomorrow morning - only 1000 mg per day though taken twice a day.
    Will look out for the loose stools. Also the stomach problems that seem to plague me
    from my treatment.

    I did note some of the horrendous common side effects listed for this particular medicine
    I guess it's good to be aware, but also a bit daunting.

    Probably, I am in a similar situation over here with costs etc, hence staying on the azathioprine for 4 yrs

    All the best to you for your journey through this maze,

    Angela

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    Default Re: Azathioprine - Mycophenolate mofetil

    Hi Angela

    I have been taking Mycophenolate for 5 years now with virtually no side effects. I started on one tablet a day for two weeks, then it was upped to two tablets a day for two weeks and I have been on three tablets a day ever since. I did have stomach pains and felt very tired every time they upped the tablets for about one week. I now have no side effects from them. I am also taking 5mg of steriods a day.

    Hope they work for you.

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    Default Re: Azathioprine - Mycophenolate mofetil

    Thanks Donnak

    i have started on two tablets per day. (1000 mg)
    So far have had a bit of Gerd and chest pain this morning for about two hours.
    Sometimes with Wegeners, you wonder if its the disease or the meds causing
    problems. But at the moment, I think its the myco.

    I am glad they have worked for you. I hope they do for me too, despite the side effects especially
    seeing the Aza didn't work.

    Thanks for replying and all the best to you.

    Angela.

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    Default Re: Azathioprine - Mycophenolate mofetil

    I was on myco (CellCept) for about six months for Wegeners a few years ago. Had no positive effect on my inflammation and made me straight up MEAN. I asked my rheumy to take me off of it because the mood swings were absolutely terrible.

    Good luck!!

    Sent from my SM-G955U using Tapatalk

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    Default Re: Azathioprine - Mycophenolate mofetil

    Thanks for your reply bdawg
    will look out for the mood swings.
    Had an interim blood test this week but won't know the results until I see the doctors in couple weeks
    so far have had some bits and pieces (lol) chesty cough /sore chest but that could have been from a chill,
    touch of dizziness, general cough, aches and pains (is it Wg, the myco or Getting older) tiny red dots which I think are called petechae or something - not a lot but, bit of blood in nose and touch of crusting.
    What I think I have learned from reading others experiences with treatment, is that sometimes we get ummmm resistant
    to the particular medication after a while and it doesn't then keep things at bay. And then our doctors try out an alternative to see if that works/helps which I guess is what is happening with my treatment at the moment. They did suggest rituximab next maybe. What I wonder is what happens if we become resistant to all these........
    - probably best to not think like that and be positive instead.
    Seems though its a hard road cause I have also read that everybody with Wg can be different. Hard for the doctors to work out best treatment.

    Anyway see what my doctors say in a couple of weeks. I wish Wg medication was not so toxic but.
    Thanks everybody for your input on this. It helps to compare and see what others are experiencing with their treatment too. It is very much appreciated.

    Thanks

    Angela.

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    Default Re: Azathioprine - Mycophenolate mofetil

    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

    Sent from my SM-G955U using Tapatalk

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