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 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?
I'm glad you are finally seeing some relief ; it seems you really needed some treatments that beat-back the MG (cellcept, prednisone), as opposed to just helping with the symptoms.
I would not worry about the different suppliers. I think it's more important to store the pills as directed in the instructions (humidity, light, etc.) , than who manufactured it. I've actually had one Rx with 2 different manufacturers' pills in it ; the pharmacy only had 180 from one company, and ordered the remaining 60 from another to complete my Rx. No problemo.
You are right about the Timespan ; $$$$$ . Others here have stated their is a generic now available, but I'm not seeing a cost savings yet.
Welcome!!! Chris.
About the cellcept prescription-- this medication takes so long to take effect (and sometimes doesn't work for some people), it would seem unlikely that a change in supplier would have much effect in the short term. The variability of MG is so much it is difficult to do any cause effect logic much of the time.
If you are doing better, that probably means something has decreased the bad antibody levels allowing the receptors to grow back and thrive. Hopefully whatever it is will continue to help.
The difficulty with MG is that whatever med we are taking, when we start doing well, then we are supposed to try to cut back to find the minimum effective dose, and often the effect of the cutback is so delayed it is hard to know what is going on, especially with a mix of meds.
That said, there are some differences with meds from different suppliers although each is supposed to give the equivalent dose of the medication.
Good Luck and Merry Christmas and lets hope things continue to improve. I am still in remission and hope that lasts.
Russ H
Some things really make a difference.
I take 2000mg a day of the name brand myself. I want to wean off of it, but I know that I have not had remission without it yet. Could probably go down to 1500mg I guess. Don't need the mestinon for everyday activities, but I take a little (30mg) whenever I need a strength boost, like playing sports etc. Never been on prednisone and hope I never have to.
Peace,
TJ
Notes from log: This is after symptoms came back with prednisone reduction (was down to 6mg every other day).
2015/10/14, Wednesday: Increase prednisone to 10mg every other day, increase cellcept to 750mg twice a day, increase mestinon 30mg to 5 times a day.
2015/10/17, Saturday: Double vision has progressed to the point that it is impossible to drive without closing one eye.
2015/10/26, Monday: Increase of prednisone to 15mg every other day. Other medications the same.
2015/10/31, Saturday: I still cannot function very well without covering one eye.
2015/11/04, Wednesday: No change.
2015/11/06, Friday: Double vision seems better (area to left). Was able to work outside for a few hours (without an eye patch) without too much problem, but today was cloudy, which helps considerably.
2015/11/10, Tuesday: Was able to work outside without an eye-patch again today (bright sunshine). Last few days, since 11/06, I could not.
2015/11/12. Thursday: Not much improvement in vision. Unable to drive without eye-patch, too distracting.
2015/11/15, Sunday: Vision about the same.
2015/11/16, Monday: Able to drive for first time without eye-patch today.
2015/11/19, Thursday: Double vision slightly worse again today. It seems to vary quite a lot.
2015/12/01, Tuesday: Not much change lately. Vision to the left is generally good, but double to the right. Eyes seem gritty much of the time. It is almost as if the medication dosage has hit a point where it is not getting better, but also not getting worse.
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?
2015/12/29, Tuesday: Double vision has improved considerably. It is still a problem to the extreme right, but good anywhere else. It is probably as good as it was before I started the prednisone tapering off.
Best wishes for peace,
TJ
My own example of this is when I was taking high doses of prednisone, I had a test for osteoporosis (a side effect of prednisone) and sure enough I had it. Another test showed I had quite low testosterone (primary hypogonadism--something preventing the testes from producing testosterone). This also causes osteoporosis. So, I was prescribed both fosamax and testosterone. As I started these two, I also was starting another attempt to get below 40mg prednisone daily. This time it worked and in 4 months I was off of it totally and in full remission from MG (no meds at all).
In my mind, one or both of the two new meds put me into remission, although rationally I know that is just as likely to be coincidence. However, I continue to take both medicines (I still have both problems) and I worry MG would come back if I stopped either. My doctors believe it is coincidence, and prescribe the medicines for osteoporosis rather than MG.
It could be, by your log, that the increase in prednisone kicked in at the same time you took the new cellcept. The summary of all this rambling is -- great you are doing better; hope it lasts, and who knows for sure what happened.
Mark Twain commented on something like this; "if it is a Miracle, any sort of evidence will answer, but if it is a Fact, proof is necessary
Also, you mentioned experiencing muscle twitching on pyridostigmine. This is a classic sign of the dose being too high and causing cholinergic side effects.