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My Rheumo is recommending Prednisone, mycophenolate with rituximab, any suggesstions?

Posted , 4 users are following.

Zee5252
Zee5252

I was diagnosed with SS 9 years ago and it has impacted my kidneys. I have stage 4 kidney disease with only 16% function. I am at verge of kidney dialysis and/or transplant. My last nephrologist put me on prednisone for 9 months and I had very bad side effects including weight gain (40lbs), high cholestrol, high BP, shortness of breath, etc. We moved to CA few months ago and my new Rheumotologist, Dr. Daniel Wallace is suggesting a therapy of  prednisone alomg with mycophenolate and rituximab. He is hoping that it may reverse my kidney disease but is not 100% sure. Has anyone been on this therapy or have any insight into this?

​I am really scared after my last experience with Prednisone and will appreciate your help and input. 

0 likes, 6 replies

6 Replies

  • lily65668
    lily65668 Zee5252

    Posted

    Hi Zee,

    I have nothing to offer but my sympathy. Most of us don't suffer too badly from SS and don't get organ damage, but you've really drawn the short straw. I've never been on any of those drugs as my own SS has never been anything more serious than a darned nuisance in the 20-odd years I've had it. However, I know a lot of people on these SS boards have been on prednisone and methotrexate, and I'm sure they'll be able to offer you some support.

    I hope you soon find a therapy that works for you.

  • katalin59838
    katalin59838 Zee5252

    Posted

    I am sorry but I don't taking any medication yet , only eyes drop for now
  • deidra40034
    deidra40034 Zee5252

    Posted

    Hello Zee,

    At the moment I have not heard of these two meds.  I am on Prednisone for both RA and Sjogren’s.  I was on Methotrexate for a year, first 7 pills a day, then the daily shots of 8mil., not only did it do nothing to stop the progression of my RA, but it caused my hair to start falling out, skin lesions, and was just making me overall sick.  It also caused a problem with my adrenal glands/kidneys, which was causing big problems with my blood pressure.  The one thing it did help a little with was the dry mouth.  My RA doctor finally took me off of it in January. 

    We are still working on getting all of that straightened out, and he wants to start me on Imuran, but have to wait to hear back from my Urologist and Gastro guy too.  Oh yes, this has also caused problems with my liver, and stomach too.  The meds cause more problems than the illness itself sometimes.  I think if I didn’t have the RA, and just the Sjogren’s, I would not take these meds.  I could not take the Plaquinil (sp) either, as it caused damage to my eyes in the first 3 months, had to be taken off that right away.  And that damage stays, won’t go back once you stop it. So, I have been limited so far, as to what meds I can take.  My body just does not like certain meds.  Most of these meds are just so toxic to our bodies.

    I’m sorry, I wish I could be of help to you. 

     

    • lily65668
      lily65668 deidra40034

      Posted

      Just so we're all on the same page, mycophenolate and rituximab are immunosuppressant drugs, as is methotrexate. I don't know exactly how they act - there might be differences. In case Zee is used to different trade names in the US, hydroxychloroquine is the generic name for Plaquenil, classed as a disease modifying anti-rheumatic drug (DMARD).
    • deidra40034
      deidra40034 lily65668

      Posted

      Thank You Lily!  I am still new to all of this...as I have only had Sjogren's for about 3 years.  It started with dry eyes, mouth and joints more painful along with my RA.  It seems to be moving along kind of fast, moving into the organs now.  I too am in the US, and only been on Paquenil first, then Methotrexate, then raising the dose of Pred a little higher, as I was already on that for my RA.  Now they want to try the Imuran.  So, I too am looking for all the info I can find, and trying to undterstand it all.  I have had "some sort of auto immune disease" for years, it just took so long to figure it all out.  Now they are thinking I have Lupus on top of it all.  The doctor did say that if we have one, we usually end up with both.  My Mom has Lupus, and was just told she now has Sjogren's on top of it.  So strange. 

      Again, thank you for the info!!

      Deidra

    • lily65668
      lily65668 deidra40034

      Posted

      Sorry to hear you've been unlucky too, Deidra. Most of us escape without organ damage - or at least the serious kind. I think you and Zee are at the extreme end of the spectrum. I know there are at least a couple of people on here who've been on methotrexate long-term and tolerate it well. I hope some of them will come in with more information for you two.
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