this med. Would serostim help me?
I have myastenia gravis I have been on mestinon for 3 weeks, so far I am not getting much relief on?
- Posted:
- 31 Jan 2010 by msc1122
- Topics:
- mestinon, serostim, myasthenia gravis
Details:
Added 31 Jan 2010:
the over all pain and fatigue in my back, neck, arms hands and legs has subsided a bit. My throat is only 30% better. A friend of mine told me about serostim. Is there someone out there that is on serostim for myastenia gravis.
Added 31 Jan 2010:
the over all pain and fatigue in my back, neck, arms hands and legs has subsided a bit. My throat is only 30% better. A friend of mine told me about serostim. Is there someone out there that is on serostim for myastenia gravis.
Responses (2)
1 Feb 2010
I am no Doctor, but Serostim is prescribed for HIV positive patients. Yes, Myasthenia Gravis is also an autoimmune condition. You need to check with your doctor. I started on mestinon and it helped at first, but then it didn't. It took my doctor 8 or 9 months to get my medications right. I am currently taking three medications daily. They may or may not be right for you. Your doctor should slowly step your medications each time you see him or her. It is a delicate thing to adjust your immune system so that you do not see the effects of MG.
19 Feb 2010
I my name is Isabelle and i do have myasthenia gravis for the last 17 years i started around 16 years olds and presently i'm 34 years old so i know i you could feel i do have good and bad days but the best advice that i could give you is get a lot of rest and sleep and i do take prednisone,mestinonSR the slow release 180 mg twice a day and every 4 hours if my MG is not good i could take the mestinon 60 mg.Every 3 weeks i go to a treatment call plasmapheresis do you ever been on this treatment or know about it??? it's very good and affective for people with MG and theres another treatment call IVIG do you know that one???
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Hi Isabelle. Thanks for the info.. I am learning to rest the hard way. I have read about the different meds. you mention.
Since I posted this ?, my doctor has increased my doses of mestinon. I am taking 120 mg every 3 hour. I am also taking donnatal (anti-muscle spasm) to control the crazy, crazy muscle spasms, I was getting all over.
My doctor also added the time release mestinon. I take this before I go to bed. So far I feel almost normal especially with my throat. I still get tired and need to rest between activities.
I plan on asking my doctor, if I could take the time release during the day as well.
It really helps being on this support group and hearing what others are doing.
I have a ? for all who have been living with MG. Do any of you work out with weight? or do any physical exercise?
What were your initial complaints that led you to your doctor? (What symptoms were you getting). Do any of you have children that possibly have MG? I know it is not inherited but I did read that more than one person in a family can also have it.
Hi! my name is Ninia Vera and was diagnosed with myasthenia gravis four years ago. Used to be that I took Mestinon and Imuran as immunodepressants for maintenance, but with very adverse side effects for me. But just a few weeks ago I was introduced to a new revolutionary "gelceutical suspension" -- EXO and UMI which helps a lot for me to have a near normal life. Now I can travel, do household chores and can work as optimally as ever. I am already active these days.
Myasthenia Gravis could be a lifelong disease. But I doesn’t have to be unbearable.
Thanks and God Bless Us All!
Isabelle,
Expand this post...
I have been started on Mestinon 60mg about every 4 hrs. It has really helped my throat issues of hoarseness and loss of voice when singing but I still feel very weak especially from the chest area up including arms and hands. My acetylcholine antibody test is negative and I am waiting for results of Musk antibody. EMG really was pretty normal as well as chest xray on the thymus. There are other isssues but don't think they are related to MG. I am Hypothyroid, have Fibromyalgia, Arthritis, Plantar Fasicitis and started developing these symptoms of MG in the last year or so. Weakness which worsens as the day goes on, short of breath on exertion, and then developed throat issues. At times I am so weak its difficult to talk. Again the throat hoarseness is better but I don't see alot of improvement with the weakness. If the Musk antibody comes back negative I don't know what I will do. I keep asking myself if I am making this up in mind, I have tried to will it away to no avail. I am a pretty positive person. I am also 58 yrs. old and I know this is uncommon in my age group. I am anxious to find out about the Musk test. I also have in the last week or so had a couple days where I got jerky twitching symptoms.
Don't know why. I have only been on Mestinon for about 2.5 weeks. This is new for me. Any suggestions or help you could give me would be greatly appreciated. blondieslp