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...
Hi everyone,
I got diagnosed with a thymoma and myasthenia gravis in 2017. I've had chemotherapy then surgery to remove the thymoma. When I finished chemo and my immune system had recovered the myasthenia came back. I've just recently (3 weeks ago) started on prednisolene and Mestinon and had some questions. Firstly did anyone else notice their symptoms increased before improving with steroids? Over the last 3 weeks my symptoms haven't improved and if anything seem slightly worse, the Mestinon keeps the symptoms at bay but when it runs out or first thing in the morning I've been struggling a lot, mostly with talking and swallowing. This brings me to my second question. Does anybody else notice a very quick resilience to Mestinon? I started on 30 mg 4 times a day and was getting good results this increased to 60 mgs 4 times a day on week 2 I'm now taking 60mgs between 6-8 times a day and they're having less effect. Just wondered what other peoples experiences were and if they had any tips etc.
Thank you
Ben
I wrote this in an earlier post:
PeterL 01/29/2019
I certainly find the effects of Mestinon to be variable and the medication of choice. Currently, I take one tablet first thing and after that half whenever needed... when's that you ask? 'When my eyes say so, slight tiredness or perhaps 30 minutes before I'm due to give a talk.' Rarely more than 180mg in a day.
As you've noticed too much and the MG symptoms come back. Simply trial and error I think and if nothing else Mestinon is both fast acting and quick to stop acting - nothing to lose! In that sense, I don't see my intake as a target to be met, 'just' take what you need.
Happy to add to it?
Peter
Thank you very much for your reply any information I can get on other people's experiences at the minute is very much appreciated. It really does seem like everyone is slightly different and also symptoms and doses can change from day to day. Do you have any experience with prednisolene??
Thanks again.
Ben.
Prednisolone along with Mestinon are probably the two most important drugs we take in those early days, when, for many of us, the symptoms of MG seem to get worse with every day that passes. As you will be aware. Prednisolone is used to suppress the immune system as being the source of the antibodies that give rise to the MG. Whereas Mestinon counteracts the direct effect at the muscle junctions. Neither drug could be described as being targetted, hence the adverse effects of both on our bodies.. Mestinon is more uncomfortable than dangerous, as opposed to Prednisolone. which is potentially dangerous. Prednisolone is fairly fast acting though and taking it is considered the better of two options. Fortunately, there are some long-term treatments to suppress the immune system that is not quite so potentially damaging to us.
BTW. you can generally vary your intake of Mestinon as you feel suits. Prednisolone is rather different and you vary your prescribed dose at some considerable risk to yourself. Put another way, do keep in touch with your Neurologist and by all means question but take the advice as well as the medicine!
I rather like this article on MG
http://www.myasthenia.org/HealthProfessionals/ClinicalOverviewofMG.aspx
It sounds like your MG is progressing. Prednisone took 4 months to do much good for me. I started with 3 mestinin per day and was up to about 8 a day when prednisone finally got working. I started at 20 mg pred per day and was up to 60 when it helped.. Not sure of the dose comparison with prednisone vs prednisolone.
Be careful for if you are under medicated you might end up in the hospital -- I did early on and theanswer was twice as much mestinon to keep me breathng
good luck
Russ
On the other hand, Ben, if you take too much Mestinon, your MG symptoms will also worsen.
I am in the same process as you right now, trying to find the balance between Mestinon, Prednisone, and my generalized MG symptoms. I am also on Imuran. I have been taking Prednisone (not Prednisolone) for a month now. My neurologist had me ramp up by adding 10 mgs weekly until I reached my present level of 30 mgs. Supposedly with Prednisone, if one doesn't ramp up and just starts at the highest level, it can cause a temporary worsening of symptoms. I don't know about Prednisolone.
Every day right now feels like uncharted territory for me. It took me until 8 days on my highest prescribed dose of Prednisone for me to see an improvement in my double vision. I have gone from taking 90 - 120 mg doses of Mestinon every four hours to 60 mgs every 4 hours. Even so, I still have intermittent double vision and weakness. My plan is to adjust the Mestinon doses in 15 mg increments. Then the symptoms if I take too much Mestinon aren't too bad, and I can always try adding another 15 mgs in an hour if I think that is what is warranted. I am keeping a log of the dosages and timing of my medications and of my symptoms. And I am grateful that people in this group have reassured me that most of us MGers go through this uncertain period and that managing our MG is likely to become easier.
- Nan
Thank you all again, your responses really are appreciated and I wish you all very good health.
Regards
Ben
Regards
Ben