Prednisone didn't work for myasthenia, what should I do now?

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So I was taking 20mg prednisone and has a relapse after 15 days of taking and got no improvement. My neuro has told me to for a plasma exchange and has upped my Imuran. I am currently on 10mg Prednisone and Mistinon 5 times a day... Please help me in guidance. What should I do now? I told my neuro that I am a poor women and cannot afford plasma exchange after I've spend almost 700,000 on Thymectomy in June. I am so depressed right now. Please help me... I have no hope left. When am I going to see the effect of Imuran? I do job as a teacher. If I lose it I will be homeless. I have kids to feed and they are school going. I cannot end my life. Please answer my questions. Should I go to a new neuro? She should've had prescribed me Cyclosporine? Cell cept? methotrexate?

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5 Replies

  • Posted

    Hello, not sure what it is exactly you are going through but I will be praying for you that the Lord will guide you in your problems you are going through & heal you..my prayers will be on you God bless you..

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  • Posted

    Alia,

    Here is a study saying:

    The Thymectomy Trial definitively demonstrated that thymectomy is a beneficial procedure for people with myasthenia gravis (MG) associated with antibodies to the acetylcholine receptor. The study demonstrated that people who had a thymectomy had less disturbing symptoms and required lower doses of glucocorticoid treatment. Coordinating an international study is difficult and requires extreme wisdom, exquisite planning and diplomatic skills for the study to reach successful completion. Dr. Wolfe and others involved in directing this study deserve high credit for their work in maneuvering this study to completion. This study carries enormous importance for patients with MG because it firmly documents the therapeutic value of thymectomy in treating MG. Insurance coverers will not be able to deny coverage on the basis of thymectomy not being demonstrated to be efficacious. This study was supported by National Institutes of Health, the Myasthenia Gravis Foundation of America and the Muscular Dystrophy Association.

    These things must be discussed with your doctor. Read up on your immune system to understand why this procedure is done. Do all you can to fully understand your disease and write doen your symptoms on a calendar and take it to your doctor to read. Work with your doctor and dicument your dailey condition.

    I wish you well, and never dispair. The mental battle is as important as the physical one. We certainly have every right to feel overwelmed, weite down all questions and go right down your list with your doctor. It will help both of you. God bless

    Jill

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  • Posted

    Hi Alia,

    Prednisone is a steriod.

    Mestinon delays the reuptake of acetylcholine in the neuro synapse.

    Imuran, Cellcept, and Cyclosporine are all immunosuppressives.

    Methotrexate is a DMARD, Disease Modifying Anti Rheumatic Drug.

    Thymectomy has proven to be beneficial to those who had a thymus gland that did not inactivate during childhood.

    So, plasma exchange...Theraputic Plasma Exchange...TPE

    I found this from NCBI

    ...A total of 35 patients of MG were submitted to a total of 41 cycles and 171 session of TPE. It was performed using a single volume plasma exchange with intermittent cell separator (Hemonetics) by Femoral or central line access and schedule preferably on alternate day interval. Immediate outcome was assessed shortly after each session and overall outcome at discharge.

    Therapeutic plasma exchange is an extracorporeal blood purification technique in which the plasma is separated from the blood, discarded in total, and replaced with a substitution fluid such as an albumin or with plasma collected from healthy donors. This is generally performed to remove high-molecular-weight substances such as pathogenic autoantibodies, immune complexes, cryoglobulins and toxins that have accumulated in the plasma.

    Its efficiency in MG is due to removal of proteins of autoimmune biological activity, mainly antibodies to acetylcholine receptor, leading to short-term improvement of neuromuscular junction transmission, muscular strength and motor performance. Rapidly reducing the autoantibodies may sometimes lead to a rebound overproduction of same antibodies. This rebound production of antibodies is thought to make the replicating pathogenic cells more vulnerable to cytotoxic drugs, for this reason, it is often performed to enhance the effectiveness of cytotoxic drugs. Usually, TPE is combined with immunosuppressive treatments.

    Alia, I have never had a Plasma Exchange. I take Mestinon Timespan 180 mg as soon as I awaken, a second dose 6 hours later, and if I need more later on, I take Mestinon 30mg...not the Timespan version.

    I hope this gives you a lot the think of...ask me for more information if this is not sufficient for you to make this important decision.

    warm hugs

    judith

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  • Posted

    Hi Alia,

    I sent you much information. The moderator has to look over what I wrote and what I researched for you. Let us hope that the moderator approves my post.

    Thinking of you,

    hugs

    judith

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  • Posted

    I am 5 ft 4, 125 pounds and I was put on 60 mg for 2 months before beginning taper.

    There is a difference between Neurologists

    and rheumatologists, I believe a rheumatologist is the better choice for muscles, joints ect. Plenty room to argue that...

    Even is you are tiny, 20 is not enough to shutdown a misfiring immune system.

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