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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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Grand Magnate
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I have known people who have been on Pred for a long time. It can come with all sorts of side effects. I'm not sure what you mean by a negative "spinal reaction" to IVIG. Can you explain that? Was it a fluid issue? Have you ever had an MRI of your brain or spine? Who told you that you have "systemic tendonitis?" Your primary doctor? It may be a good idea to see a rheumatologist to confirm that and to rule out any other inflammatory condition. People with MG can have other autoimmune diseases. A rheumatologist deals with the "itis" or "inflammation" diseases and knows good treatments for them. Try to find a good one! Oh, have you taken a Quinolone that might've brought on the systemic tendonitis? Do you know that drug is now contraindicated in people with MG? It's hard to say what is from the Pred use. Your internist can run some basic tests like a vitamin D level, vitamin B12, anemia profile and comprehensive metabolic panel to see how your basic nutrition picture is looking. One thing that Pred does is to reduce the gel coating of the stomach. It's an antiprostaglandin, which is why having daily good prostaglandins (omega 3's, etc.) is a good idea. Like flax or fish oil. Are you on calcium and vitamin D3 (separate vitamin D capsule)? I think a thorough appointment with your primary doctor is warranted. Go over everything, including supplements! Even supplements aren't benign and may interact with any drugs you are on. They can look at the big picture of your care and then send you to specialists like a rheumatologist. I hope this helps. Please ask more questions of others too. It sounds like you need some more doctoring and defining of what is really going on. Do you have a good neurologist too? Annie |
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