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...
I am blessed to have great doctors.
Dr. C.L., my neurologist, is concerned about my lack of improvement. I have not been doing well since the last plasma exchange in December 2013. He made some changes to my medications in hope of reducing some of the side effects I experience.
My breathing is still very bad. He ordered a chest CT Scan to check my thymus gland again and for the presence of lung disease. The CT came back clear: no thymoma or disease.
I have been on tons of meds, prednisone, cellcept, etc. I have had Rituxan and 47 plasma exchanges. I have had Cytoxan chemotherapy monthly (22.5 grams total) over the last year and I am not improving.
So, I have an appointment with a surgeon next week to discuss a thymectomy. Even though I have no thymoma or thymus problem, Dr. C.L. thinks this is necessary for any change in improvement in my condition.
I will keep everyone posted.
My appointment with Dr. A.U., my endocrinologist, went well. She is monitoring changes in my endocrine system caused by prednisone. So far, she has things under control with medication.
Thanks for Your Prayers and Support
Sill Hanging In There!
--Kerry
Dr. C.L., my neurologist, is concerned about my lack of improvement. I have not been doing well since the last plasma exchange in December 2013. He made some changes to my medications in hope of reducing some of the side effects I experience.
My breathing is still very bad. He ordered a chest CT Scan to check my thymus gland again and for the presence of lung disease. The CT came back clear: no thymoma or disease.
I have been on tons of meds, prednisone, cellcept, etc. I have had Rituxan and 47 plasma exchanges. I have had Cytoxan chemotherapy monthly (22.5 grams total) over the last year and I am not improving.
So, I have an appointment with a surgeon next week to discuss a thymectomy. Even though I have no thymoma or thymus problem, Dr. C.L. thinks this is necessary for any change in improvement in my condition.
I will keep everyone posted.
My appointment with Dr. A.U., my endocrinologist, went well. She is monitoring changes in my endocrine system caused by prednisone. So far, she has things under control with medication.
Thanks for Your Prayers and Support
Sill Hanging In There!
--Kerry
No asthma. No COPD. No Cardio problems. Tons of PFTs.
My diaphragm and intercostal muscles just are not working.
--Kerry
This Monday I have my first PFT and like you I am facing the decision for a thymectomy. During my last appt it was suggested that I have that procedure to help with my long term prognosis.
Thanks again Kerry for all that you have shared.
I hope you the changes in treatment start to help soon
Joe
My doc also told me he would do rituxan for short term relief, but also recommended a thymectomy for the long term.
I hope they can get you fixed up and feeling better soon.
Ann
I hope something works for you soon. I had a thymectomy 1.5ys ago and didn't have evidence of a thymoma. I have had a very modest improvement. I have also been on a number of meds - holding on prednisone and rituxan while doing plasmapheresis (a few treatments a month). While plex used to work miracles for me for a few weeks - its benefits have diminished. My neuro said he has seen this in some pts - diminishing returns from plex).
One thing I really would like to say - is PLEASE be cautious with the thymectomy being as weak as you are. My neuro made sure to leave me on a dose of steroids for a while before the surgery to make sure I was strong. You want to be able to come off of the ventilator after the surgery. It is not a trivial surgery. If you are using accessory muscles to help you breath (intercostals) - you may want to get a few opinions from surgeons specifically about the surgery. Deliniate clearly your weaknesses for them and ask them if they are comfortable. Also - remember to discuss the anesthesia choices for a pt with MG....
Best of luck to a quick recovery!
Nicole
Yes, I forgot to mention mestionon, 60 mg every 4 hours. 15 mg. prednisone daily (has been much higher). 2,000 CellCept (in process of stopping) Cytoxan (1.35 grams monthly) canceled for now.
Fortunately, all of my doctors are at Vanderbilt, and all my test results. They all know each other so this is good for me.
It does seem that some meds lose their effectiveness over time. PLEX worked great at first (47 total) but does not last as long now. Chemo worked great at first, but not effective now. We shall see.
On the positive side, My cardiologist says I have NO heart problems whatsoever and my lungs are clear/disease free. This should help.
Kerry, I hope your body starts reacting in a very positive way. We want you to be able to breathe with ease. I want you to feel better soon.
You have been a warrior! May God bless you!
TJ
I hope Rituxan kicks in for you.
It is working well, for me. It has taken 2 rounds, 6-months apart.
(Similar to other Snowflakes, I may be scheduled for Round 3, in the next month.)
I'll never be like my old self again, but that's okay.
Rituxan has certainly reversed the flow of symptoms.
Hang in there, my MG Friend! - Ross