I don't really consider the red spots to indicate a flare, although they may show up during one. I notice them the most when I'm trying to taper pred, and my body has not gotten used to the drop in dosage, and maybe I didn't sleep well or am otherwise a little run down or stressed. I don't consider it a flare unless it continues for more than a few days and is accompanied by night sweats, markedly increased fatigue, a feverish feeling, and things like increased mucus, consistent blood in the mucus, and increased coughing. Then I see the doc, get my blood looked at, and get my meds increased. I think it is normal when tapering pred at the lower doses, as I am, to get some mild increases in symptoms that last no more than 2 or 3 days. My red spots seem capricious and there are usually just a very few of them, on one arm at a time, and they are mostly very small. I still have no red spots as I speak or any other troubling symptoms, and am sure I'm not currently in a flare. I plan to taper from 12mg. to 11mg. in about a week and down to 10mg. no later than the end of the month. I get blood work at the end of the month and see my doc in early March.
Anne, dx'ed April 2011
Blake, I, too was very unhappy to hear your mom's nephrologist had "given up on her" after only two months of RTX, and that he expected her to just "waste away". Now it sounds like that was not the same nephrologist as you have now. But the new one doesn't sound that great, either, if he seems not to be too concerned about getting her into remission since she has emphysema. If they are going to treat her as a lost cause, then why not take a chance on the CTX, to see if could improve her kidney function? Maybe they fear losing her due to the toxicity and then getting sued or whatever. But my understanding is that the toxicity of CTX builds up over time, so maybe a couple of good infusions a month apart or so wouldn't hurt her. I wish you could find a team where you live who is willing to consult with experts such as Dr. Langford or the docs at Mayo. And it would be nice to have someone who specializes in MPA, but I'd think any good vasculitis doc would know the differences between that and Wegs and be able to treat them both. I do appreciate the difficulty of getting your mom in her condition to anywhere at much of a distance. So maybe a consulting relationship would be the best. If you could just find local docs who would cooperate with that. Or I guess you said your rheumy had consulted with Dr. Langford. Maybe more than one expert opinion is in order with MPA, as it seems to be a lot less common than Wegs.
Happy Birthday to your mom from me, too! And I don't have a problem with her not posting herself. There have been many on here who post on behalf of a parent, child, or spouse who is unable or unwilling to do it themselves.
Anne, dx'ed April 2011
I'm so impressed by the level of caring here on this site. Bless all you caring souls!
some of the posts here made me "shrink". I was relieved to read later that the misunderstanding was settled.
please, my precious friends, you are all dear to me, to us, to each other.
please, let us hold hands, embrace each other, accept each one with his way of handling things.
I love you all. peace.
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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