I do not have any experience with prednisone but if you take Mestinon with food, the side effects are less or none. Think positive!!

I have been taking mestinon for 9 weeks. It seemed very bad at first with leg and foot cramps, lots of digestive cramping and pains and jitters and diarrhea. However, it worked to keep me functional.

Now I don't have nearly the problems with it. I always eat something when I take a pill and that stops the digestive problems mostly. I take an Imodium each day and that also helps with the digestive problems a lot.

I don't think I have much prednisone symptoms that I feel. I do have higher blood sugar, higher blood pressure and a lower heart rate--things I monitor each day to make sure they are not getting higher than the doctor likes. I report the numbers weekly by email as we increase my dose -- I tapered up over the last 7 weeks from 20mg, then 30mg and now at 40mg and will probably keep moving up at least to 60 through July--or until I can tell that my need for Mestinon is decreasing. The tapering is because I was already at the high end of normal for blood glucose and my doctor doesn't want me to go into diabetes which she says could be irreversible. So far the medications are tolerable and they make MG tolerable--not good, but I can do the basic things of life with little problem--but not the vigorous things.

So--yes, Mestinon was quite terrible at first, but after a few weeks, I am taking a lot and am tolerating it quite well and appreciate greatly that it does keep me active.

Good Luck--and as my doctor counsels me all the time, be patient, we in this for the long haul.

Ask the doctor to start you out - on low doses of these meds.
Example: start with 10mg of prednisone.
(If more is needed - fine.)
- Ross
PS:
In the past, I had a lot of leeway, from my docs?
To take much more meds, than I do. From many postings here? We can see - that leeway is often needed.

Through trial & error:
I found the minimum doses that worked for me.
And I've been bumping along that minimal-path, for years.
Now? The doctors are on board, even cutting back on my scripts.
Which scares me, a little - i admit.
Because I do have occasional flare-ups, especially in summer.

I have been on mestinon for almost a year now and have no side effects. I adjust the dose as I need more and less per my docs ok.

I never had side effects fron Mestinon. From prednisone, I've had muscle aching, blood sugar spikes, weight gain, and water retention. All of these have decreased as I've lowered the amount of prednisone. The blood sugar spikes disappeared at 25 mg.

Ross offers a good idea about starting on a lower dose. I think when medications were discussed once before, some mentioned 10 mg was the only dose they'd taken. If your doctor insists on a higher dose, keep in mind the high dose won't won't be forever. I can get through the day much easier with muscle aching than when I had to stop walking every few steps.

Did you go through the appeals process for the IVIg? We appealed until we got to the state level. The state had an independent neurologist do an independent medical review. That neurologist said my daughter should have access to IVIg so the state ordered our insurance to pay for it whenever she needs it. Also, there is a prescription drug (I think it's called Robinal) which treats the side effects of mestinon.)

As far as appeals go, I didn't know it was an option back then, so I didn't no. I'm on medicare now, so I'm sure there will be a lot of hoops to go through in order to get it, but I hope that if that is the case, that I can.

I was on a low dosage of both back then, due to my own fears of the side effects. I'm very sensitive to medicine it seems. Most things interact with me badly. For instance, depression medicine always tends to make my problems worse then better, and some have even made me go a bit on the crazy side. I've done the suicidal thoughts with them, there was one that completely shut me down to where I couldn't even speak. Being 11 years old and dealing with that, was very scary. So I always let them know that I'm not the usual type.

It is good to see though that some of them fade though. I do worry about the blood sugar and pressure as well, as both run in my families line. Every male in my father's family including him has diabetes. Due to my weight, my blood pressure is kind of on the higher side of things, but not high enough that i need meds for it yet.

I guess all I can do is wait, and be brave enough to try again, and pray that they don't hit me like a ton of bricks again. Sadly it is the reason I am not on treatments now, fear. But my fear of falling and breaking something is greater now then what the medicine will do to me, so I guess I'm overcoming one fear motivated by another fear. Is that an odd one or what?

It's good that your fear is motivating rather than paralyzing you.

I suppose it is, but it is still another fear taking over. I don't really feel like I'm getting over the fear of my MG, just replacing it with something else.

Understood!!! :)

I started prednisone at 20mg and (then 25, then 30) 40mg was as high as I went. I am now down to 5mg a day!

With mestinon I had only charlie horses (muscle craps), in my feet mostly, but also in my legs and hands when I started it and when I began taking more of it. I just mentioned to my husband the other night that it has been a month or more since I have had one. For me it got better with time.
The prednisone did cause me to gain weight and many other issues, but I am very happy to have had it. It made me feel better right away. I hope it helps you quickly as well, and that you don't need to be on it very long.
I can only imagine how frustrating it must be for you to be in this place of starting it again... I will say some cuss words for you and send you my blessings as well! ;)
Love, Becca

Might I ask why there is such a increase at first, then a decrease? If 5mg of Prednisone would work later on, why wouldn't it work when you started? I see a lot of you guys talking about how you go up a lot, and then get taken down. I assume it is safe to do, but do you have detox stuff that goes along with it? I'm curious as to what I will probably be getting into.

Was curious if anyone had a reply to my last question?

Hi Tesinato! I took high doses of Prednisone (starting with 60mg for five days and then tapering down 10mg every two days) for the first time in April for an acute "asthma" exacerbation. I felt so weak I could barely do anything, the room would spin a lot (sometimes even when I was lying down), I felt tipsy, I couldn't think straight and I fell three times.

Your description is the closest thing to what I experienced that I have read. If I am dx'd with MG after my upcoming eval, I really believe that after the initial breathing exacerbation, brought on by exposure to fumes, that the Prednisone added insult to injury with further exacerbation. Bottom line... I hear you!!

Like Ross said here or somewhere else recently, if you have to take it, maybe your doc would be willing to start low and slow to see how you tolerate it. But... I am brand new here, not a seasoned MG'er.

Peace...
Rosie

No prednisone experience- my daughter has some eye issues for which steroids are contra-indicated.

My increases were done "as needed" over the course of a few months. I started prednisone over a year ago. The decrease was gradual (5mg or less at a time) to avoid as many of the side effects (and danger) that can occur with dropping too fast when being on it for an extended period of time.
5mg would not have been enough to keep me functioning a year ago. I now have regular IVIg infusions and I had a thymectomy in November. I believe these things are making it possible for me to go down on the prednisone and keep my symptoms less troubling.

I think the answer to your question would be that the prednisone is a good quick way to get back on your feet while you are waiting for other treatments involving non-steroidal immunosuppressants and thymectomies to kick in.

I chose to go back up to 20mg when the doctor suggested it today because I have had symptoms flaring up this week. I don't think I will stay this high on it this time though... we are just fighting a temporary setback. I will start tapering again the moment my MG is more stable.