LUPUS UK

news: myco, nephritis & sjogrens

This article is mainly about primary sjogrens, but I like its analysis of how myco works (my daily relatively low dose (1000mg) myco has been helping me a lot for several years now)...my feeling is that any of us with lupus + sjogrens + kidney involvement may find this piece useful...I'd love to know what you think about it!

medpagetoday.com/Rheumatolo...

🍀 Coco

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Thanks BC, that's interesting. I'd heard that MMF tended to be used when there was kidney involvement and this sort of confirms that. I've been on quite a high dose (3000mg) for some time for a lupus-like form of vasculitis and although my kidneys are only mildly affected I've still noticed improved renal function over the time I've been on MMF.

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Hi richard. It's great when mmf really helps. I've been counting myself lucky to be able to get by as well as I do on daily maintenance low dose mmf + pred + full dose hydroxy. and knowing you've been doing well on higher dose mmf for years is greatly encouraging - especially cause I seem to have a Vasculitis-like form of lupus! am guessing your maintenance plan includes more than mmf?

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Yes, MMF is certainly my immunosuppressant of choice :)

My maintenance plan actually only includes MMF now. I managed to eventually taper off pred about a couple of years ago and have never taken hydroxy. So aside from the MMF I'm just left taking a handful of other drugs for the damage that the vasculitis (and the steroids) caused whilst it was active.

But it's good to hear that you're doing well on the lower maintenance dose of MMF. That's the next stage for me that I've been discussing with my Rheumy. Come spring time if all is stable then we'll look to reduce the MMF to 2000mg and see how it goes.

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Gosh: good going! And good luck🍀

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Very interesting article!

I have suspected renal tubular acidosis and resultant permanent low potassium levels so that I have to take 5 Grams of potassium a day just to keep levels normal.

As I am about to start the Myco I wonder if it will help that, or once the damage is done will it be permanent.

I have had this potassium problem for ten years now.

In many ways the medics don't bother with it as long as I take the dailly potassium .The kidneys in other respects still seem to be ok , but is good to know the positive effects of Myco before I start it soon.

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I very much hope myco can help you🍀🍀🍀🍀...hope you'll keep us posted!

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