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 just got off of the phone with my neuro and he said that considering what has been happening to me this week he is considering doing a plasmapherisis (or ivig) next week requiring that I go into the hospital for 4-5 days.
I asked him about doing the hospitalization in our local hospital instead of having to drive 45 minutes to Fresno. It is very difficult for my husband to travel back and forth to Fresno. The doctor said that his only concerns are that he wouldn't be able to be be directly involved with my care - that I would need to find a doctor that would be willing to take suggestions from my neuro for treatment and if something were to go bad that I would have to be transported to Fresno so that he could take care of me.
I looked up plasmapherisis to find out what this involved but I'm hoping those of you that have had this done can provide me with better information. What does the treatment involve? How long did the treatment take? Was it a series of treatments similar to the ivig? Did you have any discomfort during the treatments? Did you have any complications? Are there any side effects that you experienced? Is there anything that can be done before the treatments to help reduce the side effects? For example, with ivig we drink a lot of water, take tylenol and benedryl before the treatment. Do you recommend that I go to the larger hospital that my neuro practices at or do you think that my local hospital is sufficient?
Please respond so that I can make an informed decision.
Thank you,
Barbara
I asked him about doing the hospitalization in our local hospital instead of having to drive 45 minutes to Fresno. It is very difficult for my husband to travel back and forth to Fresno. The doctor said that his only concerns are that he wouldn't be able to be be directly involved with my care - that I would need to find a doctor that would be willing to take suggestions from my neuro for treatment and if something were to go bad that I would have to be transported to Fresno so that he could take care of me.
I looked up plasmapherisis to find out what this involved but I'm hoping those of you that have had this done can provide me with better information. What does the treatment involve? How long did the treatment take? Was it a series of treatments similar to the ivig? Did you have any discomfort during the treatments? Did you have any complications? Are there any side effects that you experienced? Is there anything that can be done before the treatments to help reduce the side effects? For example, with ivig we drink a lot of water, take tylenol and benedryl before the treatment. Do you recommend that I go to the larger hospital that my neuro practices at or do you think that my local hospital is sufficient?
Please respond so that I can make an informed decision.
Thank you,
Barbara
I have received weekly plasmapheresis (Plex for short) since Feb. and previously received IVIG for 9 months.
Believe when I say that I understand the hardship involved in traveling for treatment. But sometimes it is a necessity.
A good link for plasma exchange is http://www.mda.org/publications/fa-plasmaph.html
You can also google and watch a demonstration on you tube.
I personally would not conside either week long treatment away from my doctor's direct care. I am sure he wants to monitor you. Concerning plasmapheresis, not every hospital has apheresis specialists. I did have maintenance IVIG in my hometown at an infustion center and I know some receive maintenance treatment at home. The hospital that I have my exchanges has an outpatient apheresis center so I don't have to go inpatient every week (not every hosptial has the specialty outpatient center)
This is my experience: In the beginning, I had the exchanges every other day the first week, 2 times a week for a month and now weekly. I am trying to space the treatments further apart and hopefully will be able to do so when my immunosuppressant (tacrolimus) levels go up. I am lucky that I have big strong veins that can handle the exchanges. If you do not, a port is placed so you can receive treatment. You are asked to drink plenty of water the day before and day of so that you are well hydrated. The procedure takes anywhere from 90 minutes to 3 hours. The only side effect I had was something called a hypocalcimia reaction. In some people, the medication they use as a temporary anti-coagulant sometimes causes their calcium to bind
it and the calcium is removed along with the plasma. The symptoms were tingling in lips and face to a strange full body vibration like I was on a vibrating bed. They now put calcium in my fluid exchange and I eat tums throughout the procedure. You can feel very tired and drained afterward and recommend rest after the procedure. The next day I feel good. If you have had IVIG, you know know the possible side effects, etc.
Both work well. I asked my neuro why we could not do plasmapheresis then IVIG (in essence, remove the antibodies then coat the new antibodies being made). She said in some severe cases, it is done.
Good luck in which ever you choose and keep us posted,
~sherry from texas