Tapering prednisone is an art as much as a science. What most neurologists are trying to have happen when we taper, is to find out the lowest effective dose of prednisone that will keep most of the MG symptoms away. Prednisone has some side effects that are much less of a problem at low doses.
My neuro said the goal for me was to get down to something like 15mg prednisone every day (or better, every other day), to the point where a few of the MG symptoms came back, but were manageable with Mestinon.
The complicating factor in any prednisone taper is that at about 10-15 mg/day, the adrenal glands are beginning to wake up after having stopped producing cortisol (and other useful chemicals) and as we taper lower they must start up again to make us feel decent.
You can read a little about adrenal insufficiency on the internet.
Another problem with prednisone tapering is that we don't really know if MG is under control or not until we wait a month or so at any particular dosage. Prednisone slows the immune system's production of the bad antibodies that attack our muscle receptors and kill them off. Prednisone slows the the production of most antibodies, so it leaves us open to other problems our body would normally fend off. When we taper prednisone, the immune system starts producing antibodies again, and as some of those are the bad ones, gradually they build up, gradually they kill off receptors and gradually we go back into MG symptoms.
Prednisone is much faster (weeks) than Imuran and Cellcept (months)in its time to take effect and time to get out of our system and let bad antibodies come in so it is easier to taper, but still feels like everything I do now won't show up until next month!
Most folks with MG spend their lives in this pursuit of the most effective medicine with the least effective dose, and the time scale for change is outrageously slow. I think IVIG and PLEX (blood additives and blood filtering) are the only two treatments that work in days (other than Mestinon) -- but of course they are only good for a matter of weeks per treatment.
My neuro explained my life with MG would be a continuous adjustment of medicines trying to maintain balance, and that along the way, the colds, flu, stress, etc., would be always tipping the balance one way or the other, and that by changing mestinon I could probably stick with the same minimal level of prednisone (I was going to switch to Imuran when I found I was in complete remission and have been that way for 4.5 years now).
My mother took prednisone at about 9-11 mg from age 65 to 91. She had found that balance that worked for her.
Good Luck
Russ

Thanks again for your help. You are so right about trying to adjust with the medications, etc. Did your mother take Mestinon as well? I find it is helping a bit. I am going to go see the neurologist this week and I guess ask to go back on a higher dose of Prednisone and get a prescription, so it will satisfy my insurance. I guess they don't understand what it is to deal with this.

That is wonderful you are still in remission. I remember you posting about that before. I was so hoping for that, but so far, no such luck and I guess I will just have to endure this the best way I can.

Don't worry about they insurance company, you can fill a 30 pill prednisone 20mg for less than $10.00. Just don't go through the insurance company. Use GoodRX. I have found that to be a life saver.
I also agree with what Russ said

Thanks, good to know. It is usually only $2.00, so I didn't think it was too much. I am calling on it now. Yes I can pay for it, $7.00. Wow, these insurance companies are the worst. I guess I will go on 10 mg for a while with the Mestinion and see how I do. The Mestinon does help, but I still feel a bit off. Today I was playing tennis and I had to take 3 of the Mestinon, about an hour or so apart from each other, so I could feel somewhat comfortable playing. It did help, but I won't take anymore today, unless I feel I need it, which hopefully I won't. I guess it is a juggling act. The thing that kind of scares me, is do you become immune to the prednisone and Mestinon and just have to keep adjusting your dosage. Again, I need to see the neurologist, but if I can put it off for a while and give this a try, I would like to do that. I think my prescription is only good through the end of this year anyway. Thanks again1

This same thing happened to me last year around this time in terms of the DV. I ended up going to 40 mg of prednisone to get it under control. Then I had IVIG so I could get down to 5 mg and get my thymectomy. I went back up to 10 after surgery, and I am presently tapering 1 mg a month.

Rhanson made a great point. My goal this taper is to get to the lowest dose that works for me, and this is more important than getting off prednisone all together. I would like to get to 5 mg eod, but we will need to see where this journey leads. I believe the thymectomy is helping, but you never know for sure. I justified the drastic surgery (I did it with a sternotomy) because I believe however I feel, I am better than I would of felt without the surgery. Good luck with everything, and I hope you become stabilized.

Are you still taking the Mestinon (that is, if you ever did)? When I was down to 2.5, I wasn't taking any, didn't need it. It just baffled me that I felt so good and then it came back off that dose and now I don't know if I could get that low again. Again, have to see my neurologist (he said 2.5, even 5 was a very low dose and didn't recommend it, but willing to let me try) about how much to take. When I got the DV I too went up to 40 mg and tapered down. I never really feel sick, just out of sorts and things just don't work right at times (muscle wise). I am also wondering how much my stress level is contributing to this, because it has been off the charts for a few months and it is my own fault; just try to do too much I guess.

The prednisone and other immusuppresents keep the immune system from attacking the receptors by suppressing the immune system. The trick is to find the smallest dose that does that for you. And yes, stress fits into the equation.

I do still take mestinon as needed but that doesn't suppress the immune system, it just improves communication at the receptors for around 4 hours. If I am tired or being stressed (aka work) I take mestinon to help keep the receptors at maximum efficiency. My neurologist says it is like aspirin; does go after the root problem, just treats the symptoms.

Since you got DV after 5 weeks you may want to slow the taper to a crawl with more than 5 weeks between small (less than 1 mg) reductions. Good luck

Grecogirl, I can't believe you are able to play tennis. You have MG and play tennis? WoW, you are in a lot better condition than a lot of us. I don't think that moving up and down rapidly on the meds is a wise thing, but hey what ever works. This disease effects people differently, so again, what ever works.

Yes I am hanging in there, but the thing is, last year, I was riding my bike, playing tennis, walking, etc., and felt just like I didn't even have a problem. That is why I took a leap of faith and tapered down on the prednisone to 2.5 and no Mestinion and then stopped it and had that flare and had to start over again and had good results and started to taper down again and now having some problems again. The neurologist said this is a "chronic condition." In other words, it ain't going away. I was so inspired by Russ and his remission, I was hoping that perhaps that was happening to me, but I guess not. I am age 71 and I need to remember how old I am sometimes.

I appreciate all the feedback, as it is so helpful. All I can do is get through this the best I can and see what develops over the next month. I think I do need to cut back a bit though and not push myself so much as well, but I hate to give in, so if I taper, I hopefully will hit a happy medium!

For most folks MG is chronic. I am one of the lucky ones!

I do have a complicating factor that may explain my remission.

It was found after I had MG (about 6 months from diagnosis) I had hypogonadism (low testosterone due to something wrong in my testicles ). I started treatment for that and as that became normal, my MG disappeared. The question is was it a coincidence or was there a cause-effect happening?

I asked my neuro and endocrinologist if it was possible that my MG was due to very low testosterone and they both said there is no research that shows that, but... MG is a disease that generally hits younger women and older men and something to do with hormones is possible. And they insist that I should keep on testosterone to maintain low normal levels. My endocrinologist said that when any of our systems our abnormal it is hard to know what other systems may be triggered to be abnormal.
So it is possible that MG was just a side effect of something else for me. Some cases of MG are actually due to an underlying cancer and the immune system response trying to rid the body of cancer cells includes MG antibodies. I think this is mostly with what is called LEMS.
Anyway, I did have MG, the normal treatments worked and I was getting it under control and then something happened that put me into remission

My mother started prednisone at about age 65 and took it at 9-11 mg per day the rest of her life to age 91 for a different autoimmune disease, polymyalgia rheumatica. She did end up with cataracts (removed) and type 2 diabetes, but without the prednisone she said her life would have been intolerable with pain.

Good Luck
(and I am not suggesting testosterone replacement for anyone unless they too test low). Russ