Hi,
Most people with MG do have to take some kind of immune suppression regularly. However there are some folks who get by just on Mestinon. Everyone's immune system is different and one never knows what will or won't work until they try.

Neuros aim for us to get low enough on prednisone (or other immune suppressant) so that with some Mestinon we feel OK, That means we are likely at just enough immune system suppression. The problem this "just enough" balance is that when a cold or stress or something else comes along we get worse and it can take weeks to get back in balance. Mestinon is supposed to tide up through those periods.

My own experience was different -- the last time I tapered Prednisone, I didn't have flares and MG seemed to be gone, so I just tapered off and found I was in remission. Had I gotten any MG symptoms I would have stayed on prednisone at low levels. I really hated MG symptoms after having been quite bad for the first several months after diagnosis and did not want to risk that coming back, even it if meant back too much more prednisone.

The problem with prednisone (and other Immune suppression). is the delay in results. What we do today may not show up for weeks and so if we stop prednisone now, a month from know we may be in trouble.

There is really no clear answer.

Mom started prednisone at age 65 and took it until her death at age 92 -- about 10 mg per day. She got cataracts, type 2 diabetes, and had to be very careful with her diet because of the diabetes, but said that the side effects were well worth the functionality it gave her. She had polymyalgia rheumatica -- that without the prednisone suppressing her immune system was in severe pain. She used linamints to help in the way we use Mestinon to help .

Good Luck'
sorry that I couldn't give clear advice
Russ

Hi Grecogirl

i see that you going thru some difficulties with your meds, you should talk to your neuro i n rgeard to proceed to your benefit.

prednisone if a corti coid steriod that is use to suppress you inmune system, and taken properly will not cause you any problems, since i have learned that with mg the benefit of prenidsone is o control the flais of inflamation in your body

theu my 8 1/2 yrs, that iam on prednisone, i am taking the minimum 5 mgs, everu other day, and some time i take a break of few days no more rthan 5,, that allows my body to act on his own and provide me whit a breeder.
also i see that you are taken turmeric which is good , i myself take tumeric/ginger (ayurvedic) with i pinch of pepper for absortion.

you may be able to get off for a while, but dont misconcept the understanding that taken predisone is totaly detrimental, it is not.

i know that some people disagree with me, but facts are facts and if you can control your mg with the mestidone and prednisone, you will be able to control your taken of meds

best of luck and happy hollidays to all

I basically agree with the OP for once, must be Christmas! Grecogirl. you give the impression that you are doing this of your own volition as if you think it is a good idea? 5mg is not a lot, certainly less than most of us produce naturally each day. Some of the Neurologists, including mine, subscribe to the belief that if you have been on Prednisone for a while that the body stops producing and it follows that you are in danger of upsetting the fine balance we have hopefully achieved in keeping the antibodies at bay. You play around with such a balance at some risk to yourself - talk to your neurologist. You don't want to spoil Christmas?

Thank you all for replying. I agree I must be very careful, but to be honest I find my neuro to be a rather benign doctor. I think I said I would go see him after I have tried this for about 2-3 months. After reading the above post about every other day, I may continue on the regimen I am on. Peter, do you take Mestinon as well? I had a fall the day after Thanksgiving and sustained a closed fracture to my dominant right arm, hence I have been in a long-arm cast and will hopefully be out of it on 1/8. After I get my right arm back and feel my balance is a bit better, I will see how this regimen goes with the prednisone and Mestinon. Since this is my 3rd go round with trying to decrease the prednisone, I sort of know what to look for and so far, I'm okay; not great, but I can deal with it.



Again, thanks for your replies and Happy Holidays. I am in sunny Colorado!!!! I love it :o)

Hi Grecogirl

Yes, I'm on Mestinon and that's the one we MGers can safely play around with, as suits our mood/need. Must admit it certainly doesn't help if your neuro is less than helpful. I take 5mg every day but, suspect that every other day wouldn't be especially damaging, more than that would certainly worry me. As I say it's Mestinon that we can play with and even then there's still the chance of a roller-coaster ride on occasion. Sunny Colorado, certainly is, we used to spend time in Colorado Springs when my Father-inLaw live there, enjoyed it.

Take care.

Gave me a prescription for Mestinon that essentially said -- take as needed up to 8 pills (60mg) per day and also gave me a prescription for time release mestinon. She told me the problems with taking too much and then said that each day I would need to adjust it based on how my functioning was and what I planned to do. So if I had an active day ahead then I might take 2 pills at a time and so on, but she expected me to figure out what I needed and I did.
With prednisone, she told me that our goal was the least amount of prednisone that would bring my symptoms into control, where control was when I felt that I was functional and needed a little mestinon to keep at that level. My own evaluation of control was no double vision and able to walk without needing rest stops.
We started prednisone at 20mg, slowly increased to slow, went high, then began tapering. Several tapers didn't work, but again she told me the guidelines of tapering, the warnings of too much or too little. Too little meant MG symptoms would return. And she also told me that doing everything very slow was important when I got down to the 20mg or less a day range.
And then she told me -- if you want to take tapering under your own control (I did), then go ahead, but if you run into any trouble or have different symptoms, send me an email and we will discuss it that way. She was testing out the new Mayo messaging system with me where you send a message and get a reply in 24 hours or less.
So I did my own tapering under the guidelines. My most sensitive indicator of prednisone not working was if double vision returned. I did not want double vision back.
When I first asked her about medications, she said I might do better taking on my own medication dosage levels with the boundaries set for high. She said that likely the rest of my life I would be taking some immune suppressing medicine and some Mestinon, and that how she would determine if I needed more or less was purely based on what I told her when she asked "how are you doing." She said the answer to that question was more important than any test that could be done, because with MG, what is important is that I am OK with my functioning, and the only way she could find that out is by asking me.
So if I could ask myself the same question and adjust my meds based on my own answer, I would not only feel in control, but wouldn't be dependent on my neuro for every adjustment the rest of my life.
To accommodate the prednisone changes, she gave me a prescription for 5, 10, and 20 mg pills, a pill cutter, and let me fill them all. She wanted me to track my daily dosage so we could look back and see if something I did a month earlier made a difference today.
To hold up my end of the bargain, I felt it necessary to read everything I could about prednisone, MG, etc.; discuss some of it on this forum, and make sure that my decisions weren't being affected by any mental vagaries caused by prednisone (i.e. I tried to be very rational about it).
The only time I disagreed with my neuro was when I had tapered prednisone to about 20 mg on alternate days (on my own) and she wanted me to start cellcept or Imuran as prednisone was giving me blood sugar problems. At that time I had a suspicion I was in remission as I had no MG symptoms, was taking no Mestinon and my tapering seemed to be no problem.
"How will I know if I am one of the 15% who go into remission if I switch drugs?" I asked her.
"Remission is rare; do you want MG to come back and be like you were in the hospital a year ago?" she responded.
"If it does comes back, I know we can knock it down in a few months with high doses of prednisone," I replied.
"Well, if you really want to try it, let's try a different way of tapering. You are on every other day at 15mg. Try every third day for a month, then every 4th day, etc., and watch for any hint of MG coming back."
It turned out I was in remission, and at on 10mg every week, I stopped prednisone. No MG symptoms came back but I the prednisone loss even at every 3rd day has started leaving me with aches and pains -- what my neuro said was adrenal insufficiency as those glands were still idling. I took pain killers and that helped. Pain killers did nothing before for MG symptoms, so I new it wasn't MG returning.
I think, for me, taking control of my meds, within guidelines and having email response from my neuro was an ideal way to function. I had anticipated that strategy for the rest of my life, but thought it would work OK.
As a reminder, I was a medical researcher (not an MD) most of my life, and understood that most medications are prescribed on a try it out and see if it works basis with adjustments coming as the patient tells the doctor how it is going.
I think, for those of us who have a lifetime ahead of treatment, having some autonomy is a good thing.
Good Luck
Russ

Russ

What a good explanation, albeit well outside the capabilities of most of us. Certainly in my own case, when I was at the beginning of the journey and, frankly, knew nothing at all about MG. I was just glad that the doctors were able to sort me out! My Neuro was certainly on the side of: 'We've gotten this far, you're stable - why mess with things?' Anyway, I'm happy for you and myself, come to that.

Once again, thanks for the input. From everything I have read on this site, MG seems to be different for everyone and like anything it depends on age, weight, activity and stress levels, medications, etc. I am going to stick with 5 mg every 2 days, along with the Mestinon and go from there. I do find my eyes to be a bit off (not double vision), but then again, they can be fine, so after I get out of this cast and another month on my self imposed trial, I am going to see my eye doc. I only wear glasses for reading, so I may need them more than that. I am 72 and things are changing, but I do stay pretty active and I have to watch that as well. It is a daily job that's for sure and the pay sucks! :)

Just wanted to say Merry Christmas to all
Our MG group and good luck with treatments/ medications !
Thanks for sharing!

Alton