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Suggest Treatment For Breathing Difficulty While Having Myasthenia Gravis
Question: Hello I am a 25 year old female with myasthenia Gravis. I was diagnosed over a year ago, (MuSk positive). My old NEURO put me on mestinon 3 times a day and it did not work I ended up in the hospital and under went IVIG treatment and started on prednisone. I have been only on prednisone since then I have been weaning off it since last summer. I'm on 15 mg every other day. Since last night I have had a hard time breathing I barely slept I called off or work today and still feel like I am having trouble breathing. I also am having a hard time holding up my neck. I am not sure what to do I no longer have a Neuro I can't see one until May 16th. I do not want to up my dosage of prednisone . I'm not sure if I should go to the ER please help
Brief Answer:
Difficulty in breathing requires you visit ER at the earliest
Detailed Answer:
Hi,
I am Dr.Bruno Mascarenhas. I have read your question with care and understand your concerns. Let me try to help you
I understand that you are suffering from Myasthenia Gravis (antibodies against muscle-specific tyrosine kinase) and you are on Prednisolone 15 mg every other day. Since Last Night, you have trouble breathing.
What you have described resembles Myasthenia crisis.
Myasthenia Crisis is a complication of Myasthenia Gravis characterized by worsening muscle weakness, resulting in respiratory failure .
According to studies, Myasthenic patients with MuSK antibodies preferentially exhibit bulbar weakness before respiratory muscle weakness. This is what is making you have a hard time holding up your neck.
Since you have the classical features of Myasthenia Crisis, I would request you to kindly go to ER Immediately for Help. This is a Medical Emergency. Please do not delay
Hope you found the answer helpful.
If you need any clarification / have doubts / have additional questions / have follow up questions, then please do not hesitate in asking again. I will be happy to answer your questions.
Let me know if I can assist you further.
Take care.
Difficulty in breathing requires you visit ER at the earliest
Detailed Answer:
Hi,
I am Dr.Bruno Mascarenhas. I have read your question with care and understand your concerns. Let me try to help you
I understand that you are suffering from Myasthenia Gravis (antibodies against muscle-specific tyrosine kinase) and you are on Prednisolone 15 mg every other day. Since Last Night, you have trouble breathing.
What you have described resembles Myasthenia crisis.
Myasthenia Crisis is a complication of Myasthenia Gravis characterized by worsening muscle weakness, resulting in respiratory failure .
According to studies, Myasthenic patients with MuSK antibodies preferentially exhibit bulbar weakness before respiratory muscle weakness. This is what is making you have a hard time holding up your neck.
Since you have the classical features of Myasthenia Crisis, I would request you to kindly go to ER Immediately for Help. This is a Medical Emergency. Please do not delay
Hope you found the answer helpful.
If you need any clarification / have doubts / have additional questions / have follow up questions, then please do not hesitate in asking again. I will be happy to answer your questions.
Let me know if I can assist you further.
Take care.
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
I have gone to the ER with trouble breathing about a month ago they did all the tests and it was normal. So I think it was anxiety I am trying to stay calm this time around . Very conflicted as if I should actually go or not I know this can get bad very quickly thank you for the feed back.
Brief Answer:
Don't Take Risk. Please visit ER
Detailed Answer:
Hi Dear Sir / Madam
(Gender: Male in Profile, but 25 year female in description)
Myasthenia Crisis is a potential Life threatening Complication
That you did not have Myasthenia Crisis Last time is good news.
But, we cannot take risk, especially since you are also having neck weakness this time.
My Suggestion would be to go to ER for each and every episode of Difficulty in breathing.
(1) If it is a Myasthenia Crisis and if you are in ER, your life is saved
(2) If it is not a Myasthenia Crisis and if you are in ER, you lose nothing
But
If it is a Myasthenia Crisis, and you are in Home, it will create an unpleasant situation which is to be best avoided
So
I request you to visit the ER now . . . Not Only Now, but on each occasion you get a difficulty in breathing . . . There may be few instances which will turn out to be not a crisis . . . But We have to be more cautious and err on the side of caution
If you need any clarification / have doubts / have additional questions / have follow up questions, then please do not hesitate in asking again. I will be happy to answer your questions. Let me know if I can assist you further.
Don't Take Risk. Please visit ER
Detailed Answer:
Hi Dear Sir / Madam
(Gender: Male in Profile, but 25 year female in description)
Myasthenia Crisis is a potential Life threatening Complication
That you did not have Myasthenia Crisis Last time is good news.
But, we cannot take risk, especially since you are also having neck weakness this time.
My Suggestion would be to go to ER for each and every episode of Difficulty in breathing.
(1) If it is a Myasthenia Crisis and if you are in ER, your life is saved
(2) If it is not a Myasthenia Crisis and if you are in ER, you lose nothing
But
If it is a Myasthenia Crisis, and you are in Home, it will create an unpleasant situation which is to be best avoided
So
I request you to visit the ER now . . . Not Only Now, but on each occasion you get a difficulty in breathing . . . There may be few instances which will turn out to be not a crisis . . . But We have to be more cautious and err on the side of caution
If you need any clarification / have doubts / have additional questions / have follow up questions, then please do not hesitate in asking again. I will be happy to answer your questions. Let me know if I can assist you further.
Above answer was peer-reviewed by :
Dr. Arnab Banerjee
Hi doctor I followed your directions I am now in the hospital. They did a breathing test on me which was low. However this Neuro at the hospital refuses to give me IVIG she says I do not need it and to take mestinon however I have taken that in the past and it does not help me at all. She insists that all ppl with MG have to take it and it DOES work. I am in a support group for mg and a number of them mestinon did no work for them in any dosage. They take other treatment including IVIG this Neuro says ivig cannot be possibly given as a form of treatment every 6 weeks even tho people in my support group do have it. I am very frustrated with this Neuro she seems to think all patients respond to the same form of treatment.
Brief Answer:
Pyridostigmine (Mestinon) is less suited for Your Type (MuSK) of MG
Detailed Answer:
Hi,
I am glad that you have reached the hospital.
I fully concur with you that Each Patient required different treatment. That is more so in your case where you have MuSK Type of Myasthenia Gravis.
About 5 % of patients with Myasthenia Gravis have this type and there has been published reports that " the cholinesterase inhibitors, such as pyridostigmine, appear less suitable for muscle-specific tyrosine kinase (MuSK) form of myasthenia gravis." (Reference is given at the end)
I understand that you are in a support group for MG and a for a number of those in your support group, Mestinon did no work for them in any dosage. It is probably because they also have MuSK Type MG or some other similar type of MG. Hence They take other treatment including IVIG
So, in the present situation, since the results of the breathing test are low, I would suggest you remain in the hospital till your breathing improves.
Please mention / discuss with your doctor once again about MuSK Type and that for you and others in support group like you, Pyridostigmine is less suited and You need other forms of treatment
I hope that you get well soon. Please do inform us after you get well :)
If you need any more clarifications, please feel free to ask.
Let me know if I can assist you further.
(
Reference :
XXXX.
XXXX.
doi: 10.1097/WCO.0000.
PMID: 0000
XXXX
)
Pyridostigmine (Mestinon) is less suited for Your Type (MuSK) of MG
Detailed Answer:
Hi,
I am glad that you have reached the hospital.
I fully concur with you that Each Patient required different treatment. That is more so in your case where you have MuSK Type of Myasthenia Gravis.
About 5 % of patients with Myasthenia Gravis have this type and there has been published reports that " the cholinesterase inhibitors, such as pyridostigmine, appear less suitable for muscle-specific tyrosine kinase (MuSK) form of myasthenia gravis." (Reference is given at the end)
I understand that you are in a support group for MG and a for a number of those in your support group, Mestinon did no work for them in any dosage. It is probably because they also have MuSK Type MG or some other similar type of MG. Hence They take other treatment including IVIG
So, in the present situation, since the results of the breathing test are low, I would suggest you remain in the hospital till your breathing improves.
Please mention / discuss with your doctor once again about MuSK Type and that for you and others in support group like you, Pyridostigmine is less suited and You need other forms of treatment
I hope that you get well soon. Please do inform us after you get well :)
If you need any more clarifications, please feel free to ask.
Let me know if I can assist you further.
(
Reference :
XXXX.
XXXX.
doi: 10.1097/WCO.0000.
PMID: 0000
XXXX
)
Above answer was peer-reviewed by :
Dr. Prasad
Thank you for all of your help doctor ! I will show this to the Neuro if I see the same one tmmrw. I have been on prednisone for over a year and would really like to get off of this due to its horrible side effects. I have heard about infusions called rituximab for musk + patients and I am interested in trying this. Have you heard any beneficial things from this?
Brief Answer:
MuSK myasthenia respond to rituximab despite long standing disease
Detailed Answer:
Hi,
Rituximab is a monoclonal antibody. It is an antibody against protein CD20 of B cells. Rituximab destroys B cells. So this drugs is used in diseases which have more number B Cells or more activity of B Cells.
Many Neuroscientists have published reports regarding use of Rituximab in MMG (MuSK Myasthenia Gravis). I will quote few of those for your ready reference
Reddel SW et al (Reference 1) has told that "Plasma exchange and immunosuppression with corticosteroids and rituximab appear to be most effective in treating MuSK myasthenia gravis"
Govindarajan R et al (Reference 2) have suggested that "Children with MuSK myasthenia, like adults, can respond to rituximab despite long standing disease and failure to improve on other immunosuppressant medications."
El-Salem K et al (Reference 3) have reported that "Rituximab has shown promising results in MMG, and should be considered in severe and refractory cases or in situations where other options are contraindicated or not tolerated by patients. Acute exacerbations may be treated by plasma exchange, which most reports indicate is superior to IVIg, although IVIg may still be used."
I hope that you get well soon. Please do inform us after you get well :)
If you need any more clarifications, please feel free to ask.
Let me know if I can assist you further.
(
Reference 1 :
Reddel SW, Morsch M, Phillips WD.
Clinical and scientific aspects of muscle-specific tyrosine kinase-related myasthenia gravis.
Curr Opin Neurol. 2014 Oct;27(5):558-65.
doi: 10.1097/WCO.0000.
PMID: 0000
http://www.ncbi.nlm.nih.gov/pubmed/0000
Reference 2 :
Govindarajan R, Iyadurai SJ, Connolly A, Zaidman C
Selective response to rituximab in a young child with MuSK-associated myasthenia gravis.
Neuromuscul Disord. 2015 Aug;25(8):651-2.
doi: 10.1016/j.nmd.2015.03.014. Epub 2015 Apr 22.
PMID: 0000
http://www.ncbi.nlm.nih.gov/pubmed/0000
Reference 3 :
El-Salem K, Yassin A, Al-Hayk K, Yahya S, Al-Shorafat D, Dahbour XXXXXXX
Treatment of MuSK-Associated Myasthenia Gravis.
Curr Treat Options Neurol. 2014 Apr;16(4):283.
doi: 10.1007/s11940-014-0283-8.
PMID: 0000
http://www.ncbi.nlm.nih.gov/pubmed/0000
)
MuSK myasthenia respond to rituximab despite long standing disease
Detailed Answer:
Hi,
Rituximab is a monoclonal antibody. It is an antibody against protein CD20 of B cells. Rituximab destroys B cells. So this drugs is used in diseases which have more number B Cells or more activity of B Cells.
Many Neuroscientists have published reports regarding use of Rituximab in MMG (MuSK Myasthenia Gravis). I will quote few of those for your ready reference
Reddel SW et al (Reference 1) has told that "Plasma exchange and immunosuppression with corticosteroids and rituximab appear to be most effective in treating MuSK myasthenia gravis"
Govindarajan R et al (Reference 2) have suggested that "Children with MuSK myasthenia, like adults, can respond to rituximab despite long standing disease and failure to improve on other immunosuppressant medications."
El-Salem K et al (Reference 3) have reported that "Rituximab has shown promising results in MMG, and should be considered in severe and refractory cases or in situations where other options are contraindicated or not tolerated by patients. Acute exacerbations may be treated by plasma exchange, which most reports indicate is superior to IVIg, although IVIg may still be used."
I hope that you get well soon. Please do inform us after you get well :)
If you need any more clarifications, please feel free to ask.
Let me know if I can assist you further.
(
Reference 1 :
Reddel SW, Morsch M, Phillips WD.
Clinical and scientific aspects of muscle-specific tyrosine kinase-related myasthenia gravis.
Curr Opin Neurol. 2014 Oct;27(5):558-65.
doi: 10.1097/WCO.0000.
PMID: 0000
http://www.ncbi.nlm.nih.gov/pubmed/0000
Reference 2 :
Govindarajan R, Iyadurai SJ, Connolly A, Zaidman C
Selective response to rituximab in a young child with MuSK-associated myasthenia gravis.
Neuromuscul Disord. 2015 Aug;25(8):651-2.
doi: 10.1016/j.nmd.2015.03.014. Epub 2015 Apr 22.
PMID: 0000
http://www.ncbi.nlm.nih.gov/pubmed/0000
Reference 3 :
El-Salem K, Yassin A, Al-Hayk K, Yahya S, Al-Shorafat D, Dahbour XXXXXXX
Treatment of MuSK-Associated Myasthenia Gravis.
Curr Treat Options Neurol. 2014 Apr;16(4):283.
doi: 10.1007/s11940-014-0283-8.
PMID: 0000
http://www.ncbi.nlm.nih.gov/pubmed/0000
)
Above answer was peer-reviewed by :
Dr. Deepak
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