NeuroTalk Support Groups - Immunosuppressants forever?

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Immunosuppressants forever? (https://www.neurotalk.org/myasthenia-gravis/177493-immunosuppressants-forever.html)

AnnieB3

10-06-2012 05:04 AM

And some have tried Tacrolimus/Prograf. It's a macrolide immunosuppressant though and is relatively contraindicated in MG and for those with a cancer history in their family.

Mestinon Syrup kicks in sooner than tablets. On average, Mestinon kicks in about 1/2 hour after taking it and wears off about 2-1/2 hours after taking it. Again, this varies per person somewhat. So, yeah, it's great having only two good hours of muscle strength.

RavenC

10-06-2012 05:12 AM

Quote:

Originally Posted by alice md (Post 920250)

Where is the evidence for that?

I am not talking about abruptly stopping all medications in a dangerous way.

It took me nearly a year to cautiously decrease the dose of the steroids, even after I had no doubt that they only made my illness worse not better and I had a clear gradual improvement with every dose decrease. ( I went from being nearly bed-ridden and requiring respiratory support most of the day on 100 mg. every other day to being able to resume part time work when I was down to 10).

No evidence (you can only try and see what happens), but 2 docs told me this, and one of them is "the best" in the country I live.
But Im still reducing :)

alice md

10-06-2012 08:29 AM

Quote:

Originally Posted by RavenC (Post 920255)

No evidence (you can only try and see what happens), but 2 docs told me this, and one of them is "the best" in the country I live.
But Im still reducing :)

In my field of practice when a medication doesn't lead to significant improvement/ remission you don't keep on using it.
It doesn't make much sense in my humble opinion to have the side-effects without the benefit.

But, what do I know? :Hum:

RavenC

10-06-2012 08:45 AM

Quote:

Originally Posted by alice md (Post 920280)

True but this is just what they told me... And if 2 specialist tell you this, what else can you do? They just told me: once you started this, you're never going off it. Pitty they didn't tell me this when I started. However, my goal is reducing the dosage .

alice md

10-06-2012 08:55 AM

Quote:

And if 2 specialist tell you this, what else can you do?

That is a tough question.

In such situations I resort to my dear friend Lewis C., who wrote a beautiful agony in 8 fits

http://ebooks.adelaide.edu.au/c/carroll/lewis/snark/

Which I hope he wouldn't mind me citing:

Quote:

“Just the place for a Snark!” the Bellman cried,
As he landed his crew with care;
Supporting each man on the top of the tide
By a finger entwined in his hair.

“Just the place for a Snark! I have said it twice:
That alone should encourage the crew.
Just the place for a Snark! I have said it thrice:
What I tell you three times is true.”

scrubbs

10-06-2012 09:47 AM

[QUOTE=
I don't know if I understand your question correctly (do you mean testing like in farmaceutical industry / scientific research?)
.[/QUOTE]

Yes

scrubbs

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