Hey, another July thymectomy survivor here. :)

I have been tapering my prednisone as well, and my neuro wants me to go far, far more slowly than you're taking it. You may just need to go easier on the taper during this period of stress.

I've had some recurrences of symptoms with periods of stress, too, which is a good prompt to try to relax (easier said than done, of course).

I think you are probably just dropping prednisone too rapidly.

The goal is to find the least amount of prednisone that will keep us functioning at a decent level, and we have to approach that very very slowly when we are already at low levels.

A difficulty is prednisone is somewhat delayed in when changes show up. What you do or don't do today may not show up for many days or even weeks.

You might ask your doctor about resuming the old dose or even an increased dose for a little while and hopefully getting back more function, and when that occurs, try tapering again in very small increments.

My own tapering was from every day to every other day and eventually once in a while every 3rd day --but taking the same pill size and eventually I was able to go to 4, then 5 days between doses OK.

One advantage to extra days between pills, according to my neuro, was the adrenal glands are more likely to start up with the longer time between doses.

Good Luck

It sounds like you are experiencing an exacerbation of optical symptoms probably brought on by all of the stress and exhaustion because of your recent circumstances.

I experienced this same type of "relapse" you describe several times after my thymectomy due to overwork or exhaustion. It usually happened when I pushed myself too hard (like working 15 hours days, etc).

From my experience, the best thing to do is to slow down and rest. The more you push and exhaust yourself the harder it will be to get better. If at all possible, take a day or 2 off work and do nothing but rest your eyes and see if you notice an improvement. It is a tough thing to accept, but most of us with autoimmune disorders come to
realize that pushing ourselves too hard many times results in flare ups.

If rest does not help I would talk to your Dr about temporarily increasing your Prednisone to "kick" you out of the symptoms. I have gone up on Prednisone to reduce flare ups and then tapered back many times with the help of my Neurologist.

Most of us do not like to be on Prednisone if we can help it, but sometimes it is the fastest way to get better. I completely empathize on your good feelings about being able to taper down. Just know that if you have to increase your Prednisone it does not necessarily mean that the higher dose will be permanent or that you cannot taper off slowly again later with the help of your Dr.

I was off Prednisone for one month in November and my diplopia returned in December. Back on Prednisone (40 mg) took care of it. Now, I'm back down to 20 MG and tapering slower this time.

I hope you're find it temporary as well.

DM

Good to know your progress after surgery. Nothing can be predicted in diseases like MG, every individual behave differently.
As pointed out by other that tapering of drug may be a problem. In general it should not be more than 5mg per month.

I feel that you are overstressed. Starting so early in the morning and than keep on going. Life is not about that. I understand everyone need to work but not the cost of happiness. Stress has too much to do in all neurological diseases. Even if you are working 20 hrs a day, and can keep your mind free of worry, disease wont show up. Just find some time foe meditation and relieve yourself. It will help you a lot.

Hi there first off so glad the thymectomy seemed to help your symptoms and you are improving......Thats good news....Im sorry though about your roof and all the stress you have gone thru in the past weeks!! I would have to agree first off the big drop in prednisone may have triggered some of this....I went wayyyy more slowly and over a period of past 5 years have gotten down to 2.5mgs every other day...As has been said prednisone is the drug we love to hate but a needed one sometimes....I hate taking it but hate the alternative also..I also DO believe that the heavy stress you have dealt with the past weeks has ALOT to do with eye problems coming back...I am a very stressful person and when things happen I find my eyes blurring or occasionallly double vision..Goes away thank god but stress is a bad trigger for sure...So try and relax and maybe not do work everyday if that is possible and rest as much as you can..Think it will improve..Also talk to doc about the prednisone....Good luck my friend and hope things get better.....Jacki

I think your treatment plan of 10 of prednisone was working for you.
I think you should go back to 10 and then stabilize for a couplemonths then cut back much slower.
I have tried for years to drop from 7 to 6 of prednisone. Every time I get symptoms.

Hello there sounds like you've been doing great until recently. I have been in remission from a thymectomy for nearly 10 years now. I also know that when I get stressed or do too much my body takes the toll. I don't take meds regularly but when I do I try not to over do those either. I have noticed that prednisone for a few days is kinda a recharge for me. I have taken mestinon of I get really bad as well but I've had to be careful with it as it causes me problems with my eyes. My doctors say this is a common side effect. I usually don't take it due to the side effects ad it is that bothersome. I hope things get better for you. Focus on what you can control and let the rest go. Your health is the most important thing you've got.