I’m on Immuran 150 mgm. A day with no side effects. I would think you need to discuss your concerns with your doctor. All of the immunosuppressants have side effects.
Hi Sparrow! It's great to hear that you are doing so much better with treatment. I am, especially, happy to hear about your experience with Imuran. You are the first person I have heard from with experience taking this medication. I agree that I need to discuss my concerns with my doctor. I wish I could do that. Unfortunately, he does not seem to know much about them and has repeatedly given me inaccurate information. (I'm, actually, in the process of trying to get in to see a different neurologist, one who specializes in neuromuscular diseases.) In the meantime, I an my own and only have what I can find online. My primary care physician was, somewhat, helpful, but this is not his area of expertise so he was limited in his ability to advise me. All this to say, thank you so much for sharing your experience! This is helpful.
Hi
I was diagnosed with MG in May 2023. I am LRP4 positive. I’m taking Mestion, Immuran and IVIVG now every 8 weeks for 2 days at a lower dose. I was on IVIVGG every 6 weeks for 5 days. I am doing much better.
Yes it is getting better for now. December 1&2 are my infusion dates. I will see how well it’s going. I just got my appointment for my swallow study for 12/20.
Hi Sparrow! It's great to hear that you are doing so much better with treatment. I am, especially, happy to hear about your experience with Imuran. You are the first person I have heard from with experience taking this medication. I agree that I need to discuss my concerns with my doctor. I wish I could do that. Unfortunately, he does not seem to know much about them and has repeatedly given me inaccurate information. (I'm, actually, in the process of trying to get in to see a different neurologist, one who specializes in neuromuscular diseases.) In the meantime, I an my own and only have what I can find online. My primary care physician was, somewhat, helpful, but this is not his area of expertise so he was limited in his ability to advise me. All this to say, thank you so much for sharing your experience! This is helpful.
That is the best to see a neuromuscular doctor can you check to make sure he has experience with MG. Call his office they can tell you. I started on Imuran at 50 mg once a day. At first you may have some nausea so eat when you take it then later my dose was increased to 100 mg. 50 mg in morning the 50 my at bedtime. Them 150 mg 50 in morning and 100 mg at bedtime. Your labs cbc and chemistry have to be checked periodically. Best of luck with it. Prayers for you.
A member of my MG support group was on plasmapheresis. He found a neuorologist who knew MG and with proper medication, he no longer needs the very expensive, and difficult to get to a facility that provides this treatment. He has been stable since he started the recommended medication and is back to a 'normal' life. When he was getting frequent plasmapheresis, his symptoms were such that he could not drive, just stayed dependent on that treatment but never improved to a 'normal'. The medication he now takes eliminated the need for Plasmapheresis, IVig, and stabilized his MG. He is much happier not being dependent on plasmapheresis. This is the first case of MG that I have heard of being on such treatments as you are receiving for so long.
Labs, ct/mri evaluate for thymoma, Nerve conduction detects weaknesses, depending on your symptoms, neuromuscular doctor can order these tests. They rule out, rule in, diagnose, there is another I can’t recall.
Nerve problems can take a while to diagnose. Slow and steady wins the accurate diagnosis.
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Hi Sparrow! It's great to hear that you are doing so much better with treatment. I am, especially, happy to hear about your experience with Imuran. You are the first person I have heard from with experience taking this medication. I agree that I need to discuss my concerns with my doctor. I wish I could do that. Unfortunately, he does not seem to know much about them and has repeatedly given me inaccurate information. (I'm, actually, in the process of trying to get in to see a different neurologist, one who specializes in neuromuscular diseases.) In the meantime, I an my own and only have what I can find online. My primary care physician was, somewhat, helpful, but this is not his area of expertise so he was limited in his ability to advise me. All this to say, thank you so much for sharing your experience! This is helpful.
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1 Reaction@sparrow I’m glad to hear that things are better with the lower IVIGG regimen.
Is everything else going OK for you?
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1 ReactionYes it is getting better for now. December 1&2 are my infusion dates. I will see how well it’s going. I just got my appointment for my swallow study for 12/20.
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1 ReactionThat is the best to see a neuromuscular doctor can you check to make sure he has experience with MG. Call his office they can tell you. I started on Imuran at 50 mg once a day. At first you may have some nausea so eat when you take it then later my dose was increased to 100 mg. 50 mg in morning the 50 my at bedtime. Them 150 mg 50 in morning and 100 mg at bedtime. Your labs cbc and chemistry have to be checked periodically. Best of luck with it. Prayers for you.
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1 ReactionOK, you've peaked my interest. What's the medication you refer to ?
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1 ReactionLabs, ct/mri evaluate for thymoma, Nerve conduction detects weaknesses, depending on your symptoms, neuromuscular doctor can order these tests. They rule out, rule in, diagnose, there is another I can’t recall.
Nerve problems can take a while to diagnose. Slow and steady wins the accurate diagnosis.
Good luck in your quest for help.
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