New member with question on Mycophenolate (Cellcept)
I have been monitoring this site for some time, and finally decided to join, This is my first post. I have been keeping a log, but this post is a really condensed version of the actual log, even if it appears long.
In March of 2014, while driving, I suddenly developed double vision. I did manage to continue driving by closing one eye, but it was very disturbing. I checked with my optometrist, then medical Dr., who referred me to a neurologist. The usual tests were run; MRI, CT-scan, blood tests, etc. The blood tests came back positive for MG. Fortunately, the MG was ocular (with a slight weakening of the jaw muscles), and did not noticeably affect any other muscles. I was able to function by wearing an eye-patch (but that messes up depth perception)
In May The neurologist prescribed pyridostigmine (Mestinon) 60mg tablets, half tablet (30mg) to be taken 3 times a day for 1 week, then whole tablet (60mg). Of course, this had side effects such as severe leg cramps and muscle twitching (mostly at night). I spent many nights sitting in a recliner with the feet flat on the floor. This prevented the spasms, but not the muscle twitching. Experimentation with dosage determined that 15mg three times a day minimized the cramps, and the vision improved to the point that I was able to function without eye-patch (still double vision to far sides and up. Quit taking pyridostigmine in August.
In January of 2015 the double vision came back, mostly to the right, but intermittent across the whole field of view. Early February, the neurologist suggested the IVIG treatment, so I spent 5 days in the hospital with that. The results were minimal improvement. Small good field of vision lower left of center (up still bad). Went back to the pyridostigmine (Mestinon) 60mg tablets, (same as before, with the same side effects, and same experimentation with dose). Have had some problems with eyelid drooping, especially left eye. Then, in early April, both eyelids closed completely. That was scary!
Mid April, the neurologist suggested several options: IVIG again (first time didn't work), plasma exchange (did not sound good), or steroids (prednisone). I chose prednisone as the best option. He prescribed 10mg prednisone daily (morning) for a week, increase to 20mg for a week, and then increase to 30mg thereafter. I also take pyridostigmine (Mestinon) 30mg 5 times a day, with Mestinon Timespan at bedtime, and take Cellcept 500mg (Mycophenolate) twice daily. I had the same problem with leg cramps and muscle twitching, especially with the Mestinon Timespan. I quit taking the Mestinon Timespan after a few days as I could not tolerate it (also, the insurance would not cover it and it was terribly expensive). Within a few days the eyelids no longer drooped, and the vision started to slowly improve. Leg cramps still a problem, but seem to be easing off. I added potassium and magnesium supplements to try to ease the cramps. Must be getting used to the pyridostigmine as the cramps are not as bad. I am able to function well without an eye-patch, even outside.
One of the side effects of prednisone is it increases the glucose levels (I am diabetic, so that could be a problem). I was taking metformin 750mg twice a day, but increased to 1000mg twice a day. This helped a little, but not enough, so in early July I started the prednisone reduction, hoping that the Cellcept had built up enough to take over. It was on a 2 week, every other day schedule starting at 30mg, 20mg, 10mg, 8mg, 6mg. The glucose levels went down in proportion to the prednisone reductions and were near the pre-prednisone levels. Then in early August, at the 6mg level, the double vision returned, so I increased to 8mg, then to 10mg, and finally in mid October, to 15mg every other day. The Mycophenolate (Cellcept) was increased from 500mg to 750mg twice a day. By mid November, this did improve the vision so the left of center vision was good (right and upper still problem). I am able to function well without an eye-patch again, even outside.
In early December, the vision suddenly started to improve and now is only a problem to the far right and upper right.
Now for the question I have for the other members. This is an entry from my log.
2015/12/17. Thursday: Double vision seems to be somewhat better. Good field of vision seems to be farther to right. It may be a coincidence, but improvement seems to have started after I had last prescription of CellCept (generic) refilled. I started the Mycophenolate Mofetil (generic CellCept) on 04/13/2015. This was NDC# 16729-019-16, from Accord Healthcare Inc. This was the supplier until I refilled the prescription on 11/25/2015, and it was from a different supplier: NDC# 64380-725-07, from Strides Arcolab Limited. I used up the old and started this one in early December, and shortly started noticing improvement. I know there is not supposed to be any difference in effectiveness from different suppliers, but?
In March of 2014, while driving, I suddenly developed double vision. I did manage to continue driving by closing one eye, but it was very disturbing. I checked with my optometrist, then medical Dr., who referred me to a neurologist. The usual tests were run; MRI, CT-scan, blood tests, etc. The blood tests came back positive for MG. Fortunately, the MG was ocular (with a slight weakening of the jaw muscles), and did not noticeably affect any other muscles. I was able to function by wearing an eye-patch (but that messes up depth perception)
In May The neurologist prescribed pyridostigmine (Mestinon) 60mg tablets, half tablet (30mg) to be taken 3 times a day for 1 week, then whole tablet (60mg). Of course, this had side effects such as severe leg cramps and muscle twitching (mostly at night). I spent many nights sitting in a recliner with the feet flat on the floor. This prevented the spasms, but not the muscle twitching. Experimentation with dosage determined that 15mg three times a day minimized the cramps, and the vision improved to the point that I was able to function without eye-patch (still double vision to far sides and up. Quit taking pyridostigmine in August.
In January of 2015 the double vision came back, mostly to the right, but intermittent across the whole field of view. Early February, the neurologist suggested the IVIG treatment, so I spent 5 days in the hospital with that. The results were minimal improvement. Small good field of vision lower left of center (up still bad). Went back to the pyridostigmine (Mestinon) 60mg tablets, (same as before, with the same side effects, and same experimentation with dose). Have had some problems with eyelid drooping, especially left eye. Then, in early April, both eyelids closed completely. That was scary!
Mid April, the neurologist suggested several options: IVIG again (first time didn't work), plasma exchange (did not sound good), or steroids (prednisone). I chose prednisone as the best option. He prescribed 10mg prednisone daily (morning) for a week, increase to 20mg for a week, and then increase to 30mg thereafter. I also take pyridostigmine (Mestinon) 30mg 5 times a day, with Mestinon Timespan at bedtime, and take Cellcept 500mg (Mycophenolate) twice daily. I had the same problem with leg cramps and muscle twitching, especially with the Mestinon Timespan. I quit taking the Mestinon Timespan after a few days as I could not tolerate it (also, the insurance would not cover it and it was terribly expensive). Within a few days the eyelids no longer drooped, and the vision started to slowly improve. Leg cramps still a problem, but seem to be easing off. I added potassium and magnesium supplements to try to ease the cramps. Must be getting used to the pyridostigmine as the cramps are not as bad. I am able to function well without an eye-patch, even outside.
One of the side effects of prednisone is it increases the glucose levels (I am diabetic, so that could be a problem). I was taking metformin 750mg twice a day, but increased to 1000mg twice a day. This helped a little, but not enough, so in early July I started the prednisone reduction, hoping that the Cellcept had built up enough to take over. It was on a 2 week, every other day schedule starting at 30mg, 20mg, 10mg, 8mg, 6mg. The glucose levels went down in proportion to the prednisone reductions and were near the pre-prednisone levels. Then in early August, at the 6mg level, the double vision returned, so I increased to 8mg, then to 10mg, and finally in mid October, to 15mg every other day. The Mycophenolate (Cellcept) was increased from 500mg to 750mg twice a day. By mid November, this did improve the vision so the left of center vision was good (right and upper still problem). I am able to function well without an eye-patch again, even outside.
In early December, the vision suddenly started to improve and now is only a problem to the far right and upper right.
Now for the question I have for the other members. This is an entry from my log.
2015/12/17. Thursday: Double vision seems to be somewhat better. Good field of vision seems to be farther to right. It may be a coincidence, but improvement seems to have started after I had last prescription of CellCept (generic) refilled. I started the Mycophenolate Mofetil (generic CellCept) on 04/13/2015. This was NDC# 16729-019-16, from Accord Healthcare Inc. This was the supplier until I refilled the prescription on 11/25/2015, and it was from a different supplier: NDC# 64380-725-07, from Strides Arcolab Limited. I used up the old and started this one in early December, and shortly started noticing improvement. I know there is not supposed to be any difference in effectiveness from different suppliers, but?
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