Maureen , I without a doubt have a lot of advice on this topic . I will mail you in th morning as I'm having a hard time with my vision typing lol what else is new..talk to you in the morming Cj

My wife, after organ transplant, did the taper. The rule of thumb the transplant Dr. gave us was to taper at no more than 10 percent every two weeks. This was 12 years ago, she experienced considerable joint pain during the taper. There are many here with lots more taper experience than I can offer. Best of luck.

When I had a recurrence of thymoma I was also on 60 mg of pred. Luckily, my lesion was very small so my surgeon said it was fine to wait a few months, but he was very firm that I needed to get down to a low dose of pred .He said that it slows the healing process. My surgeon worked with my neuro to create a plan. I started IVIG right away and continued every other week. I don't remember the taper, but when I had surgery 2 months later, I was down to 15mg daily. I had IVIG for 3 days right before surgery and everything went fine. I actually went home earlier than planned ( 4 days) because I was healing so well. During the taper I did feel some achiness, but had no problems with mg .I really suggest your surgeon and neuro work together on this.
I know it must seem overwhelming. ( and it is).
You will get thru this!

Judith

Hi Maureen ,
When i had my distal bicep reconstruction a tear ago . the pred was a hot topic between my neuro and my surgeon. At the time I was on 60 like yourself and got down to 30 mg by surgery date. I was tapering for about 2 months prior.

At the time I was getting joint pain and nausea which lasted about 2 weeks or so and some double vision , which was the only symptom mg wise that got exasperated. Remember everyone is a little unique in there on way on how there body will react to pred tapering / withdrawl .

As far as post op from surgery while taking pred recovery could take a little longer and the possibility on an infection is slightly elevated neither of which affected my recovery from thymectomy or Bicep sugary.

After surgery Maureen , id say to you to talk with your Docs about resuming pred to your pre surgery level as trust me lol as I learned the hard way by not initially going back to my pre op level and don't want you to make the same mistake I did. Im stubborn at times lol .

We all want to be pred free however we have to weigh the pros and cons and having our mg flare up which as we know can really exasperate quickly.

All my best , Cj

Advice given by a pro here of the past
Drop 50 percent over a 6 month period.
So if you are at 60 in 6 months you will be at 30
Some have had more luck here than other.
Slow worked best for me....but I can't for the life of me get below 6 1/2.
When I was dropping from 60 going too fast was miserable, going slow allowed me to bear it. Sort of like the saying....slow and steady wins the race.

wow.. 6 month to drop 30? I cant have surgery til i am below 20 so thats a long way off then huh? When you say " i was miserable when tapering too fast" what does that mean? MG symptoms worse? something else? Im confused......

Yes when I went from 60 down terrible mood
Mg symptoms worsted because of withdrawal
Weakness just worse mg
I made it through when I went fast but when I slowed down life was more bearable.
Going from 7 to 6 is a different story
Asthma attack once
And in hospital
Severe weakness last time to the point I couldn't function
Another time going from 7 to 61/2 bad but would have to look in notes.
Seems like no good time to try again
Enough said
Basically effects make me unable to function and do daily activities.
Just go as slow as you can....maybe you will do better
It can be hard work.

The other thing that would happen is is would make a drop of any kind, think I am doing great and then 4 weeks later bammmm it hits me.
Good luck. ....who knows....you may do great.

The other thing that would happen is is would make a drop of any kind, think I am doing great and then 4 weeks later bammmm it hits me.
Good luck. ....who knows....you may do great.

Wow.. sure sounds like this is going to take a while. I guess i will just have to take it as it comes like everything else i cannot control these days.... thanks for the input.....

Maureen

Hi Maureen!
I was at 60mg daily. Tapered down 5mg, every 3 weeks.
The Neuro wanted a faster rate, but that was as fast as I could go.
(Due to: minor-problems with sweats, some muscle-twitching, anxiety, and internal temperature regulation.) (Sounds like pretty typical tapering problems, doesn't it?)
I didn't have any real problem, at all. Until I went below 30mg a day.
I had to go back up, to 30. Then came down 2mg, every 3 weeks.
I'm now at 10mg a day.
The thymectomy is not critical, right? It can wait - on your tapering?
I hope the other complications - can also wait too.
Wishing you the best! Keep us posted - Ross

I dont know.. is it critical? I really dont know. The doctor wanted an answer from me in 2 weeks as to the direction i want to go in, as i was a little "resistant" to having my chests cut open, she then ordered some other tests including something on my thyroid that has now become issue #2 but i cant deal with that until i get a biopsy, which, quite frankly is being put off until sometime in late may. Ive really put my head in the sand on all this as there is nothing i can do until i can do it... meeting with the surgeons in NYC on Thursday on the thymectomy, neuro says they wont do surgery until i am below 20 mg, so that would be SEVERAL months away... go i guess at this point i have no idea whats an emergency and whats not? Time will tell...

Usually we taper gradually with the prednisone because a sudden change in medication can increase MG symptoms, and also because the body can become dependent on Prednisone and stop making certain hormones, like cortisol. How long have you been at this dose? I forget exactly what the timeline is, but it takes several weeks at least of a high dose of Prednisone for it to suppress the adrenal glands; if you've only been taking it a couple weeks that might not have happened yet.

When I tapered, I lost 10mg every other day every two weeks. So, I went from 60 every day to 60 every other day in about 12 weeks, which seems like is faster than most people do (twice as fast as Ann, at least). I think (but maybe not for everyone) that doing the alternate-day dosing is easier than taking the same amount every day because you get the boost of the whole amount all at once, but then on the off day your body gets a chance to remember to make cortisol again. So your doc might be able to operate if you can get down to 40 every other day (which averages out to 20 per day). Also, I was receiving IVIG when I was tapering, which helped for sure, because it prevented any recurrence of MG symptoms. I did have some withdrawal symptoms anyway, like achy muscles and fatigue and a headache, but it really wasn't too bad for me.

Ideally for MG any change in medication should be gradual, but if the surgery is urgent, that might take precedence over a graceful taper. Just make sure to let your doctor know if you're tapering too fast and it's making you sick, and again, consider IVIG to help with your symptoms. See what the surgeon has to say about Prednisone and how long you can wait--of course, your neuro is the one who should dictate your prednisone taper though, not the surgeon. Best of luck with your consultation! (Where are you having the surgery done? I had my thymectomy at Presbyterian Cornell about a year and a half ago.)

Hi Vieve, Thanks for the response. I have been on 60 mg for about 3 weeks now, so.. depending on when the surgery is, i guess the taper would be however, the taper will be. IVIG has been recommended, however, if i am to be taking several weeks off for surgery, how can i sign up for every other week ivig too? all seems too much too fast.. surely i feel like crap and i am doing my best day in day out, but to site every other week attached to an IV pole just to get through the next week.. seems over the top and i cannot commit to that just yet. they have told me i will have to do it before surgery that makes sense, but to get from one treatment to the next knowing i will need that time off for surgery.. i dont know.. im taking it a day at a time... the surgeon im meeting this week is at lenox hill in NYC, i have a referral for Cornell for a Dr. Lee.. did you use him? I have researched him a bit and decided to start at lenox where they have a higher rate of success in davinci, which may be a pipe dream on my part too, but we can run with the odds and be hopeful right? I had read some people really struggle with tapering down the drugs and so i was trying to get an idea of what the struggles were, so thanks everyone for sharing.. basically with prednisone, it makes your MG symptoms better but wreaks all kinda havoc on the rest of your body, sleep pattterns, moods and not to mention WEIGHT.. ugggh....

Thanks again everyone,,,,,

Only three weeks on Prednisone, it might not be so hard for you to taper. Fingers crossed!

I had Dr Subroto Paul at Cornell, though I have heard of Dr Lee too (it's Paul Lee, right? When I call the office to make a follow-up appointment they sometimes double check which of them I mean by "Dr Paul" :) It's a good hospital, I think. Also their neurology dept is good, supposedly. I hope you can have it done with Da Vinci, too!