Hi Ben

sorry to hear your troubles with meds it is no ruro eation with your ned detailed explanaso why you dint start to tapper down your prednisonne, i sugest ttha you have a serious andeta this regardiled explanation with your neuro in this regard.

tapper down should have started a month ago, if you dont your are asking for lots of problems, has insomnia, high blood pressure, cholesterol, and mood changing, all detrimental to mg., at this time you should have been at the minimum prednisone dose

best of luck ( Fighter

Topcat, I don't know how much Mestinon you are taking, but you may need to increase if you are very weak. That depends on how much you are taking, I really like the idea that you are tapering off of Prednisone with the Cellcept, but since you are still weak, it doesn't sound like your MG is under control right now. Since that is the case, I wouldn't expect you would taper off Steroids until you are stable and it will take many months for Cellcept to work, IF it works and I sure hope it does for you. Up to one year should be ample time to indicate if Cellcept is working. Being able to get off of the Steroids would be great, I think your first steps with this plan would be to eliminate Mestinon first and then the steroids. I wouldn't expect to see any kind of results from Cellcept for at least a few months.

Also, if you are struggling, your doctor should be able to provide some IVIG treatment or PLEX to hopefully push back your MG for over a month to provide you some feeling of recovery. If that works, it would be temporary and just part of your treatment plan also. Best wishes for peace,
TJ

Thanks for taking the time to reply guys. I've got an appointment with my doctor next week so will have a talk to him and see if I can get some ivig.

Have you tried cell cept yourself TJ?

I was on 6 mestinon a day but was having really bad stomach problems so I've been taking huperzine A instead which is as strong as the mestinon but helps me get by and is easier on my stomach. The weakness doesn't feel like my MG weakness as such just a general feeling of tiredness in my muscles along with lots of cramps which is why I was thinking it was the steroids. It only started when I got above 40mg of prednisolone a day. Also that's about when my speech and swallowing improved so it was like swapping one for one and it was nice to be able to talk for a change!

Thanks again for your comments.

I hope you're all having a good day.

Muscle cramps are very much a symptom of Mestinon, as are all the stomach effects. The suggestion of IvIg was a good one. As I recall I had about three courses in those early months, following diagnosis. It acts as a bridge whilst waiting for, in my case, the Azathioprine to kick in. Those first six months or so are probably the most unpleasant ones most of us ever have - hopefully!

Peter

Thanks Peter,

That's what I'm hoping once these 1st few months are over things will settle down a bit. My body feels all over the place atm while I'm getting accustomed to stuff. Did you manage to reduce the steroids significantly once the azathioprine kicked in?

Thanks

Ben

Ben

Wrote to another question recently, but it still applies here:


Snip:

At the moment I take both Mestinon (60Mg) and my prednisone (5mg) together, first thing when I wake up. Ideally, with something to eat, but not really too fussed about that - breakfast is never far away.

As for having a routine: that's for the long-term stuff (immune suppressant). Mestinon is variable and to suit (me). The Prednisone, at such low levels, is little more than a safety net to keep the Neurologist happy (and me).

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Not too sure how much Prednisone I was on at that time, around 50-60mg / day I believe. The IvIg really helps here and can encourage a reduction in the need for so much Prednisone - the whole MG thing at that time (early days) is in a real state of flux. Later it becomes a fine balance. In some ways we never lose sight of our predicament, even those in remission should always be aware that something or some event can trigger a flare-up or even worse a crisis. Truth be told most of us are spared ever having a crisis and life is pretty good all told.

Peter

I am on Cellcept only now. I never took steroids and was on a lot of mestinon. I did IVIG five times, going every other day to push this back and while I waited for the Cellcept to kick in, As Cellcept became more effective, I reduced mestinon to not using it anymore. Been on Cellcept for many years and I am now tapering down slowly. I am doing 500 MG per day less now. I will go till end of year and hopefully reduce 500MG more. And so on...want to have med free remission

This is interesting: how do you, and your neurologist, measure the effectiveness of the Cellcept to prevent tipping that fine balance - resulting in you going into a worse state and going back to square one?

I ask simply because my default, for many years, was 30mg Mestinon, 7.5mg Prednisone plus 75mg Azathioprine. Remission - but not medicine free.

Know your body....

Mestinon intake reduction over time. Exercise tests. I use pushups as a gauge. By needing less and less mestinon, I knew my cellcept was being effective. This is why I phrased my previous suggests the way I did.

I keep Mestinon around as a crutch when I forget to take cellcept. I feel it. Today, I went to work without Cellcept and left around lunchtime I normally take my cellcept pretty early, so I took half of a mestinon tablet for a little relief

Just stating what I did reminds me that I am not yet in a true remission. Soon it will be 10 years with this crappy disease. Go away MG!

Yes, not good, but it (life) could sure be a whole lot worse!

Thanks for sharing your experiences. It's so useful hearing other people's stories. Although it's such a shame you've had to fight this for so long cgreens it's nice knowing you manage to carry on living life and going to work. A few months ago I was absolutely pulling my hair out not knowing what to do and thinking I was going to be useless forever! Its comforting hearing you guys just getting in with it. Here's hoping for a drug free remission for you all soon. Do you mind me asking how old you are cgreens? You must have had lots of experiences over this time any advice for a apprehensive newbie??

Cheers

Ben

This site is still very buggy. I have issues signing in etc.I will probably retire in maybe 15 years. I just dont want to have health issues to deal with.

I have generalized MG. Everything except issues with breathing, although I feel my breathing was affected.

My advice is whatever treatment you are doing, believe it will work and use exercise tests to set goals. Improve on those goals and increase those goals incrementally. Knowing you are getting stronger is a big help. After all, this disease is very much (literally) in our head. With the brain knowing it is able to send a signal and the reception improves over time, it will help us out. Placebo effect, if you will.

Yes I have the same issues logging in etc sometimes.

Thanks for the advice. I agree, believing you're going to improve has a massive effect of your mental state and in turn your physical representations of MG. I struggle so much more when I'm stressed or feel under pressure. But when I'm relaxed and focused I can sometimes feel pretty much normal. I'm hoping the mmf will help too because the steroids have me up and down all the time which I don't feel helps though obviously the actual immunosuppression they cause has helped me improve in general.

Thanks again for taking the time to reply and offer your advice. I will continue to believe I'm going to get better and fingers crossed we all will.

Ben