Lupus, Fibro plus losing most of my hair

Posted by leannestork @leannestork, Jun 19, 2023

Just wondering if Lupus has had an effect on anyone one else’s bones. Surgeon said it is causing holes in my hip so now needs replacement. It has also caused inflammation around my heart of course medication but on top of that I lost most of my hair and they put me on chemo to stop my immune system. Kidneys were not doing well so switched to the medication they give heart lung transplant patients for anti rejection. A lot going on I know but I truly think this medication is the reason my heart is doing 17,000 extra harsh beats a day (proven)
Has anyone stopped taking an anti rejection drug and it helped their heart. Has anyone had holes in their bones due to lupus. How are you going with it and is there light at the end of the tunnel.

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Are you taking a steroid like prednisone or methylprednisolone? That could contribute to osteoporosis, which could make your bones porous ("holes' in your bone is a dramatic way to put it!). Steroids also speed up the heart for some of us. I cannot tolerate a therapeutic dose at all for that reason. But given what is going on, it would seem your immune system needs to be suppressed. Can you talk to your doctor about alternative medications?

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Hi there No Steriods, funny you mention this because my surgeon actually said lucky it hasn't been somthing i have ever been on ... and never do. Pain meds at the moment is Palexia which is a form of morphine. he did say that medicinal marajuana might be good but here in Australia you can't yet drive legally with it unfortunatly. Yes will be asking the doc this time if i can come off one of the tablets because they just make you so tired and i did notice a big difference dropping one already. fingers crossed she says yes but i don't want all my hair to fall out again as it has just grown back and only have the odd patches now. Thankyou for taking the time to reply and take care

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@windyshores

Are you taking a steroid like prednisone or methylprednisolone? That could contribute to osteoporosis, which could make your bones porous ("holes' in your bone is a dramatic way to put it!). Steroids also speed up the heart for some of us. I cannot tolerate a therapeutic dose at all for that reason. But given what is going on, it would seem your immune system needs to be suppressed. Can you talk to your doctor about alternative medications?

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Hi there Luckily No is the answer. The surgeon said the same thing as you have as well so I am very glad i have never had them. Thankyou so much for your information though. The surgeon has found lots of actual holes in my Hip, doubling in size and amount each year so off for a replacement in the next month ord so. The rest looks how you say porous though yes and looks very different to the other hip.

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Hi, I have Lupus and as many of the autoimmune diseases share problems with osteoporosis and other like Sjogren and RA. Luckily I got a scan for bone density three years ago that showed osteoporosis in my column so the gynecologist started me on Fosamax and Caltrate, for two years and it got better but I suspect that this year I will have to restart treatment for osteoporosis again. I also walk daily as I been told it’s the best for keeping your bones healthy. I take Plaquenil to lower my immune system and it has helped, still I have bad days when I feel so tired I get depressed, I also take indometacin to help inflammation and pain, my thyroid has also been affected so I take Karet(levotiroxin), this disease is very complicated and I feel lucky I found a very good rheumatologist that has kept my overall health good, but I do have to take many medicines and keep it up with the bad days.

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