My husband has MG, diagnosed about a year ago. You’re not alone in your struggle, it took him a while to realize it’s sometimes an “experiment of one”, with support from all.
He found a great website: Myasthenia.org
This website is where he found a list of drugs NOT to take, and the articles are very educational. Just be patient and start at the beginning.
It seems everyone’s symptoms are a little different.
Be patient with yourself.
I am an MG newby (very recently diagnosed although I’ve had symptoms for years) and would love to learn of reputable resources for information. My neurologist is not good at providing education about this disease. I have so many questions and feel like I’m on my own. Information found online is sometimes conflicting, especially regarding medications I should avoid. Any direction you can provide will be greatly appreciated!
I’ve had MG for 50 years. I don’t know of any medications you need to avoid. Never came across any that worsened my symptoms. For me the 2 crucial positive things were having a Thymectomy early on and taking Mestinon, as much as I felt I needed. In daily life, it’s tough I know but try to avoid extremes - eg of emotion (eg anxiety), temperature (being too hot or cold), food (too much/too little). These seem to exacerbate symptoms. I wish you luck. It’s a drag isn’t it.
I’ve had MG for 50 years. I don’t know of any medications you need to avoid. Never came across any that worsened my symptoms. For me the 2 crucial positive things were having a Thymectomy early on and taking Mestinon, as much as I felt I needed. In daily life, it’s tough I know but try to avoid extremes - eg of emotion (eg anxiety), temperature (being too hot or cold), food (too much/too little). These seem to exacerbate symptoms. I wish you luck. It’s a drag isn’t it.
Thank you so much for your response, @pmci! I have been struggling with this for at least 7 years, but was only diagnosed about 3 months ago. I’m seronegative which I know contributed to the delayed diagnosis. Your advice about avoiding extremes is so helpful. I have definitely noticed an exacerbation when hot. … hot weather, overheated room, hot shower.
If you don’t mind, I have a couple questions. Have you taken medications in addition to Mestinon? Have any medications been particularly helpful? Did any have intolerable side effects? I am on Mestinon and my doctor is recommending we add Imuran. I have a lot of concerns about Imuran but don’t know if the concern is warranted?
Also, what medical specialty do you recommend as most knowledgeable in treating MG? General Neurologist?Neuromuscular specialist? Rheumatologist?
I know no one with this confusing disease and am feeling quite alone on this journey. Thank you, again, for your response!!
Thank you so much for your response, @pmci! I have been struggling with this for at least 7 years, but was only diagnosed about 3 months ago. I’m seronegative which I know contributed to the delayed diagnosis. Your advice about avoiding extremes is so helpful. I have definitely noticed an exacerbation when hot. … hot weather, overheated room, hot shower.
If you don’t mind, I have a couple questions. Have you taken medications in addition to Mestinon? Have any medications been particularly helpful? Did any have intolerable side effects? I am on Mestinon and my doctor is recommending we add Imuran. I have a lot of concerns about Imuran but don’t know if the concern is warranted?
Also, what medical specialty do you recommend as most knowledgeable in treating MG? General Neurologist?Neuromuscular specialist? Rheumatologist?
I know no one with this confusing disease and am feeling quite alone on this journey. Thank you, again, for your response!!
Thank you, @becsbuddy, for the link to MG United! It looks like there might be some useful information there. I signed up and will go back to check out more of the information soon.
You asked what concerns me about Imuran. I may be overreacting, but the potential side effects sound a lot like that of the chemotherapy my father was on for treatment of his cancer years ago. I wonder if I would just be trading one set of problems for another and not improving my quality of life? Imuran also increases risk of skin cancer and lymphoma. My grandmother had lymphoma and I worry that I might be at increased risk already. I wonder if this medication could be the trigger to set it off if there is already a vulnerability there.
Thank you so much for your response, @pmci! I have been struggling with this for at least 7 years, but was only diagnosed about 3 months ago. I’m seronegative which I know contributed to the delayed diagnosis. Your advice about avoiding extremes is so helpful. I have definitely noticed an exacerbation when hot. … hot weather, overheated room, hot shower.
If you don’t mind, I have a couple questions. Have you taken medications in addition to Mestinon? Have any medications been particularly helpful? Did any have intolerable side effects? I am on Mestinon and my doctor is recommending we add Imuran. I have a lot of concerns about Imuran but don’t know if the concern is warranted?
Also, what medical specialty do you recommend as most knowledgeable in treating MG? General Neurologist?Neuromuscular specialist? Rheumatologist?
I know no one with this confusing disease and am feeling quite alone on this journey. Thank you, again, for your response!!
I wish I could give you more useful advice but I’m unfamiliar with Imuran, so can shed no light on its efficacy. As to the best specialist, I guess a neuromuscular specialist would be the best, but your doctor should be able to tell you this. As I’ve said, but want to emphasise, have a Thymectomy. When I was a young woman I was extremely weak, but over the years my symptoms subsided and then disappeared, and I can only assume the removal of my thymus gland made that possible. MG is different for each person who has it, so how you deal with it will depend on your particular symptoms. Do you mind me asking what they are? If we have an overlap I might be able to give you more specific advice.
I wish I could give you more useful advice but I’m unfamiliar with Imuran, so can shed no light on its efficacy. As to the best specialist, I guess a neuromuscular specialist would be the best, but your doctor should be able to tell you this. As I’ve said, but want to emphasise, have a Thymectomy. When I was a young woman I was extremely weak, but over the years my symptoms subsided and then disappeared, and I can only assume the removal of my thymus gland made that possible. MG is different for each person who has it, so how you deal with it will depend on your particular symptoms. Do you mind me asking what they are? If we have an overlap I might be able to give you more specific advice.
Congratulations on having your symptoms disappear! How long have you been in remission?
You asked about my symptoms. My primary symptom is profound fatigue that affects every aspect of my life and is very limiting. Something as simple as a shower is a major event that typically requires a rest before it can be completed. I am frequently short of breath and have had several episodes of respiratory distress. Fortunately, I have not required hospitalization. And, finally, I have trouble chewing and swallowing. I have significant vision problems, but it’s hard to sort out whether that is related to MG or due to another condition. Are these similar to to symptoms you had?
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.
Thank you, @becsbuddy, for the link to MG United! It looks like there might be some useful information there. I signed up and will go back to check out more of the information soon.
You asked what concerns me about Imuran. I may be overreacting, but the potential side effects sound a lot like that of the chemotherapy my father was on for treatment of his cancer years ago. I wonder if I would just be trading one set of problems for another and not improving my quality of life? Imuran also increases risk of skin cancer and lymphoma. My grandmother had lymphoma and I worry that I might be at increased risk already. I wonder if this medication could be the trigger to set it off if there is already a vulnerability there.
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.
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.
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My husband has MG, diagnosed about a year ago. You’re not alone in your struggle, it took him a while to realize it’s sometimes an “experiment of one”, with support from all.
He found a great website: Myasthenia.org
This website is where he found a list of drugs NOT to take, and the articles are very educational. Just be patient and start at the beginning.
It seems everyone’s symptoms are a little different.
Be patient with yourself.
-
Like -
Helpful -
Hug
1 ReactionI’ve had MG for 50 years. I don’t know of any medications you need to avoid. Never came across any that worsened my symptoms. For me the 2 crucial positive things were having a Thymectomy early on and taking Mestinon, as much as I felt I needed. In daily life, it’s tough I know but try to avoid extremes - eg of emotion (eg anxiety), temperature (being too hot or cold), food (too much/too little). These seem to exacerbate symptoms. I wish you luck. It’s a drag isn’t it.
-
Like -
Helpful -
Hug
1 ReactionThank you so much for your response, @pmci! I have been struggling with this for at least 7 years, but was only diagnosed about 3 months ago. I’m seronegative which I know contributed to the delayed diagnosis. Your advice about avoiding extremes is so helpful. I have definitely noticed an exacerbation when hot. … hot weather, overheated room, hot shower.
If you don’t mind, I have a couple questions. Have you taken medications in addition to Mestinon? Have any medications been particularly helpful? Did any have intolerable side effects? I am on Mestinon and my doctor is recommending we add Imuran. I have a lot of concerns about Imuran but don’t know if the concern is warranted?
Also, what medical specialty do you recommend as most knowledgeable in treating MG? General Neurologist?Neuromuscular specialist? Rheumatologist?
I know no one with this confusing disease and am feeling quite alone on this journey. Thank you, again, for your response!!
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Helpful -
Hug
1 Reaction@brighterday It all seems so difficult, doesn’t it? Finding the right doctor and right medicine. I found this site for you. It may have many of the facts that you are looking for.
https://www.mg-united.com/quizzes/what-to-look-for-in-a-doctor-quiz?mid=gawcamid=14402020317_gawadgrid=127713333538_gawadid=610728184936&gclid=Cj0KCQiApOyqBhDlARIsAGfnyMr9UhK0BevavoaRlXi9lgGIxQctFqjwDk_aE4Gyd3KXPe3b3ib6q20aAp2LEALw_wcB
What is your main concern about Imuran?
Thank you, @becsbuddy, for the link to MG United! It looks like there might be some useful information there. I signed up and will go back to check out more of the information soon.
You asked what concerns me about Imuran. I may be overreacting, but the potential side effects sound a lot like that of the chemotherapy my father was on for treatment of his cancer years ago. I wonder if I would just be trading one set of problems for another and not improving my quality of life? Imuran also increases risk of skin cancer and lymphoma. My grandmother had lymphoma and I worry that I might be at increased risk already. I wonder if this medication could be the trigger to set it off if there is already a vulnerability there.
-
Like -
Helpful -
Hug
2 ReactionsI wish I could give you more useful advice but I’m unfamiliar with Imuran, so can shed no light on its efficacy. As to the best specialist, I guess a neuromuscular specialist would be the best, but your doctor should be able to tell you this. As I’ve said, but want to emphasise, have a Thymectomy. When I was a young woman I was extremely weak, but over the years my symptoms subsided and then disappeared, and I can only assume the removal of my thymus gland made that possible. MG is different for each person who has it, so how you deal with it will depend on your particular symptoms. Do you mind me asking what they are? If we have an overlap I might be able to give you more specific advice.
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Like -
Helpful -
Hug
2 ReactionsCongratulations on having your symptoms disappear! How long have you been in remission?
You asked about my symptoms. My primary symptom is profound fatigue that affects every aspect of my life and is very limiting. Something as simple as a shower is a major event that typically requires a rest before it can be completed. I am frequently short of breath and have had several episodes of respiratory distress. Fortunately, I have not required hospitalization. And, finally, I have trouble chewing and swallowing. I have significant vision problems, but it’s hard to sort out whether that is related to MG or due to another condition. Are these similar to to symptoms you had?
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Like -
Helpful -
Hug
2 ReactionsHi
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.
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Helpful -
Hug
1 ReactionI’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.
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Hug
1 ReactionI also am on the MG United they have a great support group.
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