Hi, new here and am enjoying reading others' posts! Got a very recent diagnosis of MCTD with lupus-like features and secondary Raynaud's. I have a pretty mild case so far but have had some serious recurring bouts of something like flu. About to go to Royal Free for a five-day outpatient iloprost infusion. I'll be sure to write a long post about how it went, what to expect, what to bring and how to plan ahead etc.
For Raynaud's I've tried losartan (made me too dizzy) and sildenafil (caused face flushing, headache, nausea without helping the actual Raynaud's). Now I've just become used to wearing gloves at work, wearing double socks to bed, and using heated hand warmers if I'll be outside in the cold. I also have carpal tunnel which does not help!
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JodieBelll
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Welcome! I’ll be interested to know how the infusions go. Like you, I’ve tried the other medications which didn’t help. They just made me very dizzy because they lowered my, already low, blood pressure too much.
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