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...
Everyone OK?
Been getting some execise in this hot Houston weather the last number of weeks. I am able to do some light carpenter work on a "Tiny House" that we are building behind our Daughter's house. After about 5 to 10 mins I must sit and rest. Rest for a while and repeat. Shoveling a bit of dirt, setting a screw, swinging a hammer - stuff like that. Was fortunate unough to be able to be my Son's helper today, rebuilding a deck next to "Grammies House".
Have been feeling "Stable" the last number of months and am wondering if this is as good as it gets. Still have double vision but haven't had to wear a patch for a while. Weaned Prednisone down from 20mg/day to 15 - so that's good. On Imuron too. Tryiing to get psyched for my 3 concurrent IVIGs the week after next. I sure would like to get rid of them, but they seem to help to keep me "stable". Anyone have any input as to what might happen if I stopped?
The bottom line is that I am not dead yet.
Normally we would spend July and August in Eagle Nest, New Mexico at 8600 feet and be able to avoid this heat and humidity - but this is where the family is and Houston has good medical care.
Any way just thinkin about you and thought I'd ramble a bit.
S
I do take multiple supplements that do help. I had the double vision some time back and (knock on wood) it has disappeared. I started using 400mg of hup-A every other day that I attribute to that.
I also am from Texas and this humidity is a pain and does make symptoms worse.
Good Luck, I have yet to meet a MG'er with the same symptoms and it appears we vary a lot. :)
I too am on 10mg Predislone (slightly different), but it's considered a 'maintenance' dose by my Neurologist for exactly the reasons you say - going down to 5mgs doesn't always work well. Probably because we need roughly 7mgs to function and our body may well of forgotten how to do it?
Take care
PeterL
Our heat is up as well and anytime I step outside, I need to come right back in due to breathing difficulties. I am also seeing double and feel disappointed as I had IVIg for the first time about a week ago.
I am hopeful things will improve... for both of us. Take it easy and enjoy the time with your family! :)
You have lots of stuff going on. Try to take one thing at a time.
Do you have any meds that might help to reduce your stress? I use hydroxyzine when I feel great stress, and one before a stressful situation. I don't take a lot of them but they do help me. I also use them some nights when my mind does not stop spinning.
Again, being new here, and to the diagnosis and treatment of this MG thing, I really don't know what's going on sometimes. My Dear wife says that I am getting better, but to me it's still the same.
Last June was my last Flair-up. Had to go back to my eye patch as my eyes really got wonky.
Best wishes to you and your family. This thing sucks. But I ain't dead yet. :-)
S
My Doc has told me the same about the 10mg dose being needed. I'm just having eye problems because of the prednisone. Cataracts in both but so far just being monitored by the eye doctor. But I must say I am so much better now than a few years ago. I was on mestinon which also was a big help but very bad side effects. I was able to substitute the huperzine_A for the mestinon and achieved the same.
Take Care
Prednisone's biggest problem for me was osteoporosis, but with milk, supplements, and Fosamax it didn't progress much.
My mother took prednisone at approximately 9-15 mg per day from age 65-91 for polymyalgia rheumatica (autoimmune). With it she did well and without would have had bad pain. So I never got too worried thinking that I would have to take it for years. She did get type 2 diabetes from it in her 80s and had to be quite careful with her diet to prevent weight gain, but it made the difference for her (and me) of having an active life vs not being able to function. She and Dad were dairy farmers and drinking 4 glasses of milk per day seemed to keep her from breaking any bones or otherwise having osteoporosis symptoms.
Although I am in remission from MG now, I was in to the clinic for my yearly osteoporosis, thyroid, testosterone, and other blood tests from other autoimmune problems yesterday. With maintenance medicines am able to live a decent and functional life with few difficulties and life is good. I am hopeful that MG will continue in remission, but if needed, I know I can get it under control with prednisone in a few months (at least I did last time).
Good Luck
Russ
Maintaining on 1500MG of cellcept a day and exercising every day for at least 30 minutes.
Best of health to all of us!
TJ
I was also on cellcept. I however didn't seem to respond to it. But as a FYI to you watch out for infection using cellcept. I had an ear infection that wouldnt clear up until I stopped the cellcept cold turkey. The ear would heal and my doc would start me back on cellcept and the infection would return. I quit cellcept without doctors approval and ear infection cleared up and ive never started back with it.
I did re take cellcept prior to my thymectomy because the surgeon said it could help. After surgery I stopped it again.
All in all I never thought cellcept benefited me in any way.
Good Luck:)
I have been on Cellcept for almost ten years. It works for me. Interesting that you got an infection and had to stop Cellcept to get rid if the infection. Difference dosages can be a factor, We are all different. What works for me, may not work for another. Good luck to you too!