Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Has anyone heard of this new treatment? Is anyone using it. I just briefly looked it up on line. I would like to talk to my neurologist about it.
please read the reaponse on the prior post, it will give you all needed information in regard of soliris not solaris.
also i noted some sites that all should read , i was going to have the treatment few years ago, but the sides effects give me the answer that i needed,, TO DANGEROUS, also need to have before any shots a menangiyis vaccine 2 weeks pryor any injectionsot dispose to put my life in jeopardy
please dont hesitate to visit these sites as they will clear you about this product,.
if the drug has such read up in side effects i am not dispose to put my life in jeopardy.
consult with your neuro and endocrinologist.
best of luck
Andre
I have not posted here in quite a while because I was going crazy trying all these different things and everyone is different and has different symptoms and results, so I am just trying to work out the best plan for me and hopefully be able to live with it.
It is too stressful otherwise. I accidentally spelled it wrong, because I did look it up and saw the correct spelling. I am a medical transcriptionist, so that is a no-no for sure for me! :o)
i gave generalized mg, with hi mprofile for troubles, and evry body is different with reaction to drugs ect.
also mg has few classifictions, and that is most of the problem that one encounter on theses blogs,
they all are experimenting with all med that are talked, but they do not take in cosideration, that for an example, (ocular mg doensr require the same care that someone with generalize mg has to.
in may 10 yrs of mg, i am still only use mestidone and prednisone, they are the drugs of choice for doctors, and stated mestidone is for control of mg only and prednisone is for inmune suppressant, but als has the value of fighing inflamations and infections, if use correctly they will do the job, all said, nothing is the magic bullet which will cure mg. being the oldest autoinmune desease (460yrs) it will keep on going for who knows???
i am able to live a decent life with adapting to all what i feel thru this desease and more. i am at the minimum of dosage on both 3mgs, day of mestdone and 5mgs. every other day with predniosne, with the alternative that i can stop the prednisone for couple of days (2 to 5) , since our body produce 5 to 7 mgs, of cortisol dayli
they are also other things that one can do but i wont bore you at this time.
sine you are in the medical field you her from all of us
best of luck and do not despair, just take in consideration that all of us have a certain classification of mg and that create confusion and anger in some people
Andre
Soliris is deemed a refractory option only for MG. In my opinion, nobody would go on Soliris without trying safer solutions. One that would be safer would be Rituxan. If we are doing fine on a treatment, why switch? Nothing comes without some risk, however.
So I fluctuate with Mestinon and now I am taking it again, 1-2 a day with either 5 mg or 10 mg of Prednisone. Does that seem to be about the average medication dosage? I can go without Mestinon as well for a while and then I feel I need it again and it does help, I can feel the difference.
sorry that in one of my responses i dint catch the mistake made in the minimum amount of mestidone taken dayli, it is not 3mgs. but 30 mgs.
now to answer some of the troubles that other meds as cellcept, rituxan, imuran and others,
if you check thru the net on the correct sites, it will explain the side effects and draw back, since all these are drugs for organ transplant, , and to tell you the thruth it make sence for the doctors to recomend it since they are autoinmun reppressants, but not for mg. it is not stated by me, but by manufacturers (drug co.)
it is easy one can check them at drug.com, fda.org, wikipedia and others sites.
and also these are easy on mg patients like ocular, but not for generalized bulbar
also what will hepl in control of mg. is a total change in the lifestyle, meanning principaly foods, dayli activities, sports ect.
best of luck
Andre