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Mycophenolate 500mg twice a day.
I have been on this regime since around Feb 2023. I sometimes forget to take it and once just went off it totally, which my Neurologist was not pleased, as states it takes at least 2 years to build up a resistance. I again asked her if I could reduce as not only is this getting expensive(I pay around $100.00 every 3 months, insurance useless and removed most drugs that I had two years ago completely)) but how long does this go on….im 73 and yes, I can’t sleep, feel very tired and muscle weakness but, two months ago went to the UK and just ate and drank myself silly for three weeks..no pills, no bipap machine, lost that terrible “Phantosmia smell” and generally each day got better(no stess). One day did 19k steps!!) Came back and within one week back to normal.. Now if I was rich, would do this everyday,(wouldn’t we all) but I seriously wonder do I need all of this. I take Mestinon when needed, albeit one eyelid dropping a bit, do have some eye issues,(no double vision) macula etc. bad I’m old…have carpal tunnel and pins and needles in feet which Neuro says has nothing to do with MG and now wants a spinal tap…….surely at our age, aren’t they all going to find something? Trying Alpha Lipoic Acid for my neuropathy as told it works…………………………I really feel that its stress and how many here can honestly say that they have none whatsoever……….trouble is I’m hyper A1 personality and learning to calm down is a problem for me….
My point, am I going to notice a serious deterioration by halving my Myco dose? Took myself off or rather weaned down sensibly steroids for a year.(eyes improved!!) Just now take Losartan for heart after cutting out amlodipine and I noticed my ankle edema swelling go way down without the amlodipine…. Also had some acupuncture and a lymphatic drainage massage which I think😀 helped…..
Onwards.
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5 Replies
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The full dosage is actually 1000 2 times a day. So you are already on a lower dose. Is it worth risking a crisis? Listen to your Dr. and best to you
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Debbie is correct. I started at that amount now down to 500mg 2times a day. My Neurologist is going to probably cut it down to 500mg 1 time a day next visit in a couple of months. I take 60mg Mestinon 3 or 4 times a day. I am 78. Very active, play Pickleball with much younger players and ride my bike the days I don’t play Pickleball.
Once before I went off all medication and after a few months my symptoms returned so went back on full doses and now trying to wean off again. Luckily I am a veteran and get my meds from the VA.
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Go slowly and listen to how your body react but it might be better to fix your other problem before experimenting with this one.
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Your neurologist should be doing Cbc and metabolic panel every few months. By checking your lymphocytes levels plus others they should be able to tell how well the cellcept is working. My body works well at 1000 per day. The plan was to go to 2000 but the blood labs said it was not needed. Also after 9 to 12 months your cellcept is doing all its going to do.
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Yes I have those done every 2 to three months. MY RBC Hemoglobin and Hematocrit is low but my WBC came down from 11.9 to 5.7 recently. Recently tough my Immunoglobin levels high but Neurologist not too concerned..however, I recently got Covid and since then been having quite a few issues….and have all the symptoms below….so I just wondered?
So tired…..more so than usual. muscle weakness, numbness and tingling in hands and feet and carpal tunnel diagnosed, extreme shock and stress as a death in family also happened. Some have said listen to your Neurologist….(perhaps but they are not always right!)my point is that I took myself off for quite a while and got better I thought. anyway im going to suggest Plasmapharesis at a later stage or see if I have developed something else Auto immune or blood related as in macroglobulemia as a trace was found in a blood test a few months ago suggesting I see a blood person.
What to Know About CellCept (Mycophenolate Mofetil)
Some of the more common side effects of CellCept include:
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- Stomach problems like abdominal pain, constipation, diarrhea,
and vomiting- Blood pressure
problems- Swelling of the
legs and feet- Rash
- Headache2
· Risk of Serious Infection
· People receiving immunosuppressants like CellCept have an increased risk of developing certain infections.6
· For example, they might be more likely to get a bacterial or fungal infection. They might be more prone to certain infections that would not affect someone with a normal immune system. There is also a risk that a viral infection that had been dormant in the body (like hepatitis B) might become active.
· These risks are part of taking immunosuppressive medications. Although these medications are highly effective at preventing organ rejection and toning down the immune system response, that also means that the immune system cannot respond as well to certain infections.
People taking CellCept may have a slightly increased risk of getting certain kinds of cancers, especially skin cancers and lymphomas. The potential increased risk of cancer is a risk for many immunosuppressant drugs, not just CellCept. CellCept may even pose less of a risk than other options.
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verywellhealth.com
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- Stomach problems like abdominal pain, constipation, diarrhea,
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