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...
My doctor and I fought hard to get me the Rituxan. He, with his RN spent many hours with Medicare specialist doing peer to peer consults.
I wrote to my US Senator, who has a medical specialist that also made appeal to Medicare on my behave.
Long story, hard fought. Hopefully, in a few years it will be easier for all MG'rs to get. At this point, you must have "failed" at conventional medications.
We are all different. What worked for one of us "snowflakes" does not always work for another.
The good news. I had NO side effects. I have felt good from day one and each week I feel stronger. Today was the last of the 4 infusions. Yesterday, I was in the garden getting beds ready for planting. Something I have not done in several years.
How long will it last? God knows! Today I feel good, I am feeling stronger than I have in so long I forgot I could feel like this.
I am 72, almost 73. Even if it is a short term boost I will take it. I know Rituxan is expensive. But, in the long run, since it is used 4 weeks every 6 months usually. It is a bargain compared to IVIG which I still receive every 2 weeks.
It may be covered some day in all States. I understand it is covered in some States now. Which is weird, since Medicare is a Federal program.
I will be weaned down from IVIG I hope soon. Already, I am being weaned down off Prednisone. It will take months to get off Prednisone completely. Prednisone has taken 4 inches and turned my bones into swiss cheese. Most of you know about the shattered right arm that is still just healing after 8 months. Enough already!
Am I healed from MG? Most likely not. But, I will take what I can get. I am loving the sunshine on my face. I wish I could share the sunshine with all my friends back east.
I think we should all pack and go see Angie... (sorry Angie, you live in Paradise)
Peace friends
Dee
I wrote to my US Senator, who has a medical specialist that also made appeal to Medicare on my behave.
Long story, hard fought. Hopefully, in a few years it will be easier for all MG'rs to get. At this point, you must have "failed" at conventional medications.
We are all different. What worked for one of us "snowflakes" does not always work for another.
The good news. I had NO side effects. I have felt good from day one and each week I feel stronger. Today was the last of the 4 infusions. Yesterday, I was in the garden getting beds ready for planting. Something I have not done in several years.
How long will it last? God knows! Today I feel good, I am feeling stronger than I have in so long I forgot I could feel like this.
I am 72, almost 73. Even if it is a short term boost I will take it. I know Rituxan is expensive. But, in the long run, since it is used 4 weeks every 6 months usually. It is a bargain compared to IVIG which I still receive every 2 weeks.
It may be covered some day in all States. I understand it is covered in some States now. Which is weird, since Medicare is a Federal program.
I will be weaned down from IVIG I hope soon. Already, I am being weaned down off Prednisone. It will take months to get off Prednisone completely. Prednisone has taken 4 inches and turned my bones into swiss cheese. Most of you know about the shattered right arm that is still just healing after 8 months. Enough already!
Am I healed from MG? Most likely not. But, I will take what I can get. I am loving the sunshine on my face. I wish I could share the sunshine with all my friends back east.
I think we should all pack and go see Angie... (sorry Angie, you live in Paradise)
Peace friends
Dee
There will be better therapies, and better coverage.
Without all the aggravating hassle.
For Rituxan - or other lifesaving treatments for MG.
It has taken me almost 2 years, but I am now down to 3mg Prednisone. I hope you get there, quicker than that.
As you said, it's a Snowflake thing, and other medical problems can get in the way.
So happy you had no side effects! Flower beds too - nice!
Our flowers are buried under 6-feet of snow! - Ross
ps: I received the 4 Rituxan infusions, only once, the first time. Now it is 1 infusion, every 5 to 6 months. I wish that for you too!
Best wishes that you get stronger and stronger each day and are able to get off the other meds.
If one has to live with MG, this is the time to have it. Although it's certainly not being researched as much as other diseases, their are more treatment options currently and on the horizon now than since the disease has had a name.
I'm glad you're finally finding something that works for you.
Annette
I recently fired my neurologist and have a plan going forward to reduce the amount of Prednisone.
The Rituxan is being used to treat low grade lymphoma and MG. My white count is near normal. MG symptoms are not as bad and I feel hope for the first time in 2 years. Hopefully I can continue to reduce the Prednisone. I am not cured just better than 6 months ago.
I am happy for you and hope you continue to improve. This is a marathon not a sprint. Take Care
Clark
I am grateful that I was able to receive Rituxan and I I give Thanks to God for each new day. I have hope for the first time in years that my later years will be fruitful I love being in the thick of life, not on the sidelines.
In the words of James Brown 'I feel good" there's a dance that goes with that, take my word, you don't want to see a 72 year old chubby lady do that dance.. Happy, Happy Happy!
Dee.
Wellness,
Anyway, glad to hear you had it and are feeling good. One bad side effect I've had from it is increased infections...I'm now down with bronchitis, so be careful if you're around people and use the hand sanitizers ALL the time. First infection I've had I over 2 years...so just a warning.
Enjoy your life!!!