How well do you feel your MG has been... - Myasthenia Gravis...
How well do you feel your MG has been managed over the last year?
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I am well managed using 5 mgs prednisone daily and mestinon timespan 180 mgs twice a day. But the timespan mestinon price is killing me at close to $800 per month. Why is this price so high? It is not a new drug!
I was diagonised with ocular MG in oct 2014.I was taking Myestinon 60mg thrice. Eyelid droopring,the symptom in the begining went off within one week,may be by Nov 2014.During oct2014,my AChR was 3.5 and positive for nerve stimulation study.
I Consulted the national institute about my MG.I was advised to stop medication as ptosis had stopped.I did not take any medicine for MG from Jan-may2016.when I checked up my AChR wnt up to 5.91nmol/L.There is no eye drooping except discomfort in upper jaa and pain in the bak of thighs of both legs,
Could I get an advise as to what needs to be done
Hi, I was also diagnosed with Generalised Mg after sudden onset Ptosis in both eyes, closely followed by double vision and general weakness in neck, arms and legs in June 2014. I had a very high AcH count - over 70 when tested on diagnosis but haven't been tested again.
In UK treatment seems to be variable and dispensed according to symptoms rather than reliant upon antibody count as at least 30% of people are sero negative - test negative for known antibodies.
I was told by my neuro that Pysidistomine (Mestinon in UK & US) helps with symptoms as it is basically a synthetic neurotransmitter which helps deliver the message to the muscles so they work. My neuro allows me to self medicate so I judge when and how much to take. On 'good days' I take 3 X 60 mg daily but on not so good days I would take up to 90mg every 3-4 hours. This only allows us to function, it is not a treatment. Pyridstigomine is only active in the body for 3-4 hours.
Treatments are either immune suppressant therapy (which I have taken), steroid treatment, IVIG which is an IV drip or in extreme weakness plasmapheresis which is similar to dialysis. All treatments carry side effects, none of which are pleasant so if you can manage solely with acetycholine eterase treatments, many seem to stay with that long term until symptoms become intolerable.
Unfortunately there is currently no cure for Mg but there are some promising trials in Europe & US for a vaccine which claims to be a pssible cure. We wait with hope and anticipation.
Hope this helps, as none medical person, just an informed sufferer, I could not advise on your circumstances. I can say that there is a lot of information from various Face Book pages - just enter Myasthenia gravis in the search and take your pick, most are US based and a few such as the Myaware page or the MyastheniaUK are Uk based but I haven't searched for anything in India. All I can say is that I found a lot of help, information and support from other people's posts.
You could also check out Myaware web-site and DailyStrength Mg group, both have forums with people who are far more experienced and informed than I and have far more interaction than this HU site.
Go well CD.
Thanks for your detailed reply,which is very useful-pl post me any developments
In furtherance to my response today,is it that your AChR level was 70.Further which are the medicines for Acetylcholine eterase treatments you were taking.Please advice me if vaccine is developed