[Panorama]

Here is Stanford's Recommendations for the Prednisone Taper from daily 60 mg for last six weeks:

• 2 Weeks at 40 mg daily.
• 2 Weeks 40/30 mg alternative day dosing.
• 2 Weeks 40/20 mg alternative day dosing.
• 2 Weeks 40/10 mg alternative day dosing.
• 1 Week 40/0 mg with a follow-up meeting to evaluate progress.
• No Immunosuppressant.

If I want to go with an immunosuppressant, Stanford recommends Imuran, not Cellcept. But starting an immunosuppressant now would require a 3-year commitment to it.

The Stanford neurologist believes that there is a 50 percent chance that I will be relatively symptom free with little or no ongoing Prednisone and with no immunosuppressant.

The Stanford neurologist also wants me to cut back on the Mestinon, only using it if it is necessary. Currently I am taking one 180 mg Timespam Mestinon at bedtime, with another three 60 mg Mestinon tablets during my waking hours. The neurologist wants me to cut out the 180 mg Timespan at bedtime. Then see if zero, one, two, or three of the 60 mg tablets are needed going forward.

I'll get back on that . . .

-Mark-

[AnnieB3]

Hi, Panorama. That's a nice "algorithm," but most people on steroids find that it's not quite that simple!

Steroids are a complex issue. Some doctors begin with lower dosing, having every other day being zero so that the adrenals can keep working. Every situation is different, so I always laugh when I read algorithms. Our bodies are unique and cookie-cutter doctoring is dangerous.

And what rules over a method of withdrawal is always a patient's symptoms. Too fast of a withdrawal can cause an adrenal crisis, which is life threatening.

So many things like overall metabolism, liver/kidney function, other meds and conditions come into play.

That would be great if you could be symptom free. What they've been having some luck with at Mayo, or example, is Rituximab. It's not for everyone but it can be quite amazing for some people.

Be wary of any "promises" with MG. Sure, many people have gone into remission, whether it's drug-free or drug-induced. But MG isn't predictable and can even come back after remission.

Do you have an expert to go over all of the options with you? That is the best way to go. I don't know where you live but there are a few experts across the country who have real experience with more cases.

I hope you find something that works for you.

Annie

[limpy]

Yes, Rituxan rocks!

[Panorama]

Dr. Neelam Goyal is my Stanford Neurologist.

Clinical Assistant Professor, Neurology and Neurological Sciences

Dr. Goyal is a clinical assistant professor at Stanford University School of Medicine. She specializes in the diagnosis, management and electrophysiological testing of neuromuscular diseases.

Dr. Goyal's research interests include ALS and sleep, hereditary neuropathies, and neuromuscular junction disorders.

Dr. Goyal oversees the treatment of many MG patients. She has a lot of experience.

-Mark-

[kimchiMG]

Panorama, I am going to Stanford this week and want to ask you a question. I'm new to this forum and can't figure out how to send a message. Hoping you're around in the next few days.

[Rowejack]

I agree with Annie ...I was put on prednisone 60 Mg in Jan 2013 along with cellcept .. Started tapering down in the Fall ...5 MG at a time for a week at a time ... Got down to 5 MG a day by Feb 2014 ...and all was great ...Then went to 2,5 MG alternating with 0 MG ... Then my MG said .".uh uh ...I'm not submitting that easy " ,...really felt bad for weeks until I went up to 30 MG again ...Been coming down slowly and still not away from my fatigue . Ciurrently at 15 MG daily ...
I like Annie's idea of alternating with a dosage and then ..zero the next day ....I'll try it ..
Your individual MG will let you know how your weaning is going much more accurately than a neurologist ... They may know MG but they don't know your MG ...Let your body be the decider

Originally Posted by Panorama

Here is Stanford's Recommendations for the Prednisone Taper from daily 60 mg for last six weeks:

• 2 Weeks at 40 mg daily.
• 2 Weeks 40/30 mg alternative day dosing.
• 2 Weeks 40/20 mg alternative day dosing.
• 2 Weeks 40/10 mg alternative day dosing.
• 1 Week 40/0 mg with a follow-up meeting to evaluate progress.
• No Immunosuppressant.

If I want to go with an immunosuppressant, Stanford recommends Imuran, not Cellcept. But starting an immunosuppressant now would require a 3-year commitment to it.

The Stanford neurologist believes that there is a 50 percent chance that I will be relatively symptom free with little or no ongoing Prednisone and with no immunosuppressant.

The Stanford neurologist also wants me to cut back on the Mestinon, only using it if it is necessary. Currently I am taking one 180 mg Timespam Mestinon at bedtime, with another three 60 mg Mestinon tablets during my waking hours. The neurologist wants me to cut out the 180 mg Timespan at bedtime. Then see if zero, one, two, or three of the 60 mg tablets are needed going forward.

I'll get back on that . . .

-Mark-

[AnnieB3]

Rowejack, DO NOT TRY THAT!!!

You could put yourself into a myasthenic crisis or an adrenal crisis. Both are potentially life-threatening!!!

Please call and speak to your doctor first.

I know that coming off of Pred is hard, but you want to do it slowly.

Please, guys, do not play with these meds. You can have rebound effects, especially with Pred.

BTW, alternating days (i.e., 30/0) was NOT MY idea! It's what some doctors do. And I am not a doctor!!!


Annie

[Rowejack]

Annie .
You say don't try that ... I had come down slowly over eight months from 60 MG to 2.5 MG ( per my neuro's advice ) and had problems and now I 'm back up to 15 MG daily. I was going to alternate 15 MG one day and zero the next, per your comment about alternating ......I believe you're now saying do not alternate ...Is that correct ...?
Jack

Originally Posted by AnnieB3

Rowejack, DO NOT TRY THAT!!!

You could put yourself into a myasthenic crisis or an adrenal crisis. Both are potentially life-threatening!!!

Please call and speak to your doctor first.

I know that coming off of Pred is hard, but you want to do it slowly.

Please, guys, do not play with these meds. You can have rebound effects, especially with Pred.

BTW, alternating days (i.e., 30/0) was NOT MY idea! It's what some doctors do. And I am not a doctor!!!


Annie

[Needananswer]

I came off high dose, long term pred and I did it VERY slowly. It was BRUTAL. In fact, the taper was almost as long as the course and I can say it was really hard for me. It was the first time I could understand what an addict goes thru as I felt physiological cravings. And with each reduction I felt like I'd been slammed by a bus.

Unfortunately all my sx came back 10 fold after the pred. Now it's onto what's next. Tried IVIG and not sure that's the answer due to some persisting hives.

Open to any suggestions otherwise. the de said cellcept, rituxan, imuran or methotrexate:

[AnnieB3]

Some doctors begin with lower dosing, having every other day being zero so that the adrenals can keep working.

The above is what I said. Where in that sentence does it say that I recommend doing that?!!! I'm not a doctor, I can't and won't recommend anything when it comes to your care! I might bring up ideas or thoughts, but that is not the same thing.

SOME doctors BEGIN . . . meaning that when they begin treatment with Pred.

Once you have been on daily Pred for a long time, your adrenals are already not "working" because Pred is doing their job for them.

So, at that point, going every other day to zero can be dangerous.

If you drop to zero, you can have an adrenal crisis. Some symptoms are extreme fatigue, sweating, feeling dizzy or disoriented, much weaker, etc. It can absolutely kill you.

You can also have a myasthenic crisis.

Prednisone is a powerful drug. That's one reason why I often caution people to really think it through before taking it. And tell people to read the prescribing information.

TALK TO YOUR PRESCRIBING DOCTOR before you make any changes in that drug—or other drugs.

Caution: Some doctors don't "get" what can happen if they drop a dose amount too quickly. One of my dear friends went into an adrenal crisis when they did that. Luckily, she was okay. It can happen with just one day's dose being dropped, either lower or to zero.

Needananswer, Talk to your doctor. You might be able to adjunct therapies while on steroids to help wean you off of it. I am NOT recommending this (because I'm not a doctor and wouldn't even if I were), but inhaled steroids are an off label use for weaning.

Geez, guys, I know Pred is beyond frustrating to be on, but don't put yourself in danger while going off of it!

Annie