Immunosuppressants forever?
 

Maybe i am having some brain fog at the moment but if mestinon alone doesnt get you back to the "nearly normal" lifestyle then does that mean average MG patient would have to take immunosuppressants (be it prednisone or something with less side effects) forever? Im thinking about what everyone on list has said they take and i think we all are taking one form or another of immunosupprssant.

(unless of course you win the MG lottery and go into remission!)

I am not. I take only mestinon. It is not doing all that I had hoped for. It does help and it helps a lot. But it is not cutting it any more. We'll see.

Steph, Some people with MG can't take immunosuppressants. Some are on IVIG and Mestinon. The decision of what treatments to have takes a lot of thinking. Not only "how am I going to feel tomorrow" but "how is your body going to feel after years on a treatment."

I can't have anything but Mestinon, so I have to manage MG with rest and common sense. That's not always possible for those who are more severe. It honestly doesn't leave me with much of a life but I'd rather have it this way than to be in the doctor's office or the hospital all of the time due to an infection. Now, that is my particular case only and does not mean that would be the same way for anyone else.

It's an art form figuring out what dose and schedule of Mestinon works for you. For example, I'm on 90 mg. every 3 hours, round the clock. Yeah, my body wakes me up and says, "Take it now!" ;) I know when it's run out without looking at a clock.

You only get about 2 good hours of use out of it.

Talk to your neurologists - maybe even a view from an internist - to figure out what you want to do that's best for you.

It's not easy trying to figure it all out!

Annie

Annie, that is interesting to know about the mestinon just running out too soon. That could be my issue.

And who decides?

Imuran = I

Cellsept = I

Prednisone =C

Not very knowledgeable myself but how were the ones used to treat MG picked from this?

http://www.bt.cdc.gov/agent/smallpox...press-meds.pdf

scrubbs

All options are possible in the "MG lottery":

A. you have an excellent response go into remission, taper down your meds and remain on a very low dose or none at all.

B. You have significant improvement, but require relatively high doses for significant periods.

C. You have no significant response and/or significant side effects. So, don't take any.

D. You have a spontaneous and long remission without requiring any medications.

And you can also have some combination of A, B, C and D.

For me it was D, and C.

I personally think A is a very good deal , B is OK, but requires a lot of thinking regarding long-term consequences, C-is not that great, and D is the best.

Alice md;

I meant who decides which to test and use.

Of all on that list, we are primarily prescribed, Imuran and Cellsept. Both Immunosuppressants. Prednisone, A Corticosteroid. And a couple of possible new treatments. Rituxan and Cytoxan. Both Antineoplastic Agents.

Who decides.

scrubbs

Ideally you and your neurologist together.

It's not only those 2 they use for MG. There are also patients who get Ciclosporine, cyclosphosphamide or methtrexate.

I don't know if I understand your question correctly (do you mean testing like in farmaceutical industry / scientific research or testing on patients?) I can only answer the latter:
It is a preference of the prescribing doctor and it depends on the situation of the patient. If he* has negatieve experiences with, let's say, ciclosporine, fat chance he will only prescribe it if the patient has tried everything else and has still crisisproblems. If the patients has other diseases like RA, they may try methotrexate first because it's known to be good for RA, and it may work for some with MG. And of course the costs: CellCept is expensive for example.
And prednisone, well, that just works for a lot of patients.

*he or she


@alice md, I'm a C too.
But I was told it's not that easy to just "dont take any" because it will flare up like hell and get's back even worse then it was before.

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).

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.

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:

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 .

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

Yes

scrubbs