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CLIPPERS: Looking to connect with others

Autoimmune Diseases | Last Active: Dec 7 10:15pm | Replies (323)
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@dustymi11er

Thanks so much for the quick response. I’m ok just a little overwhelmed. I’ve been fit and healthy all my life and can’t believe how fast I deteriorate. I’m now on a strong course of steroids for the next 3 weeks while my symptoms are monitored. I’m making progress with my walking and swallowing. Still getting double vision in both eyes. This is the start of a long journey I suppose and I believe I have a good set of doctors looking after me. Any info on this would be great as there isn’t much about on line

Thanks again

G

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Replies to "Thanks so much for the quick response. I’m ok just a little overwhelmed. I’ve been fit..."
Becky, Volunteer Mentor | @becsbuddy | Jul 2, 2022

@dustymi11er I’m so glad to hear from you again, and you’re sounding more positive to boot. Couple of things for you to do/remember: 1. what dose of steroids are you on? A BIG side effect of high dose steroids is osteoporosis (a thinning of the bones). I developed it after approximately 2 months of medium to high dose steroids. Ask your doctors for a DEXA scan which is a specialized x-ray to look at the health of bones. There is a class of drugs, called bisphosphamates, which can help protect the bones. You want to ask for a prescription. And keep up the walking! 2. Learn as much as you can about clippers so you can have discussions with your doctor. And, don’t be afraid to ask questions and advocate for yourself.
3. Keep a notebook of every doctor’s visit and test. This becomes a great reference tool!
Too many suggestions for you? I know you can do it! Keep me posted

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