[Stellatum]

I just saw my neuro. Right now I'm just on Imuran (200 mg.). I think I may be a bit better--it's hard to tell, because I'm so up and down. But I think the downs are a bit shorter and farther between than they used to be. I'm not really sure. I'm definitely not getting worse, at least.

Here are my options:
--Increase the Imuran (my neuro isn't sure if he's willing to go higher than 200)
--Start low-dose Prednisone (my symptoms aren't severe, so I've been avoiding it)
--Start cyclosporine (he says it's so toxic that a year or two is all most people can handle before their kidneys suffer)
--Start CellCept (he doesn't recommend it--he doesn't believe its effective)
--have a thymectomy (see my other post)
--do nothing and hope the Imuran starts working better (I've been on it a year, but only a few months at this dose)
--and? Anything else I should consider?

My neuro leaves an awful lot up to me. I am pretty well informed, so I guess I appreciate that. But I'm frustrated that this is going on and on and on--I feel we haven't exhausted all our options yet. But since my symptoms are relatively mild (eyes OK, no breathing trouble) we're not willing to do radical and dangerous things.

I would greatly appreciate some suggestions.

Abby

[Brennan068]

Any reason you're not taking Mestinon?

Brian

[Stellatum]

Brian,

If I take Mestinon regularly, it makes my eye hurt. I do take it occasionally, if I have to go somewhere and need some extra strength, but it only helps a little bit.

Abby

[Brennan068]

Odd...

I'd ask your neuro to look at a mestinon alternative:
Physostigmine
Neostigmine
Pyridostigmine - this is Mestinon
Ambenonium
Demarcarium
Rivastigmine

Mestinon does the job better than any other Cholinesterase Inhibitors but there are alternatives if you can't use it. All of the above are reversible so they would behave in a similar manner to Mestinon and have a relatively short half-life in your system. I would think that you would need *something* to manage the downs if you're experiencing a lot of ups & downs.

The imunosuppressant is great for long term reduction of the symptoms but on a daily basis I'd certainly want something to get over the hump on a bad one...

[Stellatum]

Wow, thanks. I didn't know there were so many. Right now my drug of choice for a mild lift is coffee. But I should try the others.

I have two distinct groups of symptoms. The first is mild to moderate weakness that's pretty steady. The Mestinon helps with that a bit, but not tremendously. The second group of symptoms is episodes of severe weakness. They last about two hours. My legs get so weak that I can't walk at all. These episodes interfere with daily living more than the general mild weakness, and the Mestinon doesn't do anything to prevent or treat them.

My neurologist is puzzled by the "episodes." He says that's not typical of MG.

Abby

Originally Posted by Brennan068

Odd...

I'd ask your neuro to look at a mestinon alternative:
Physostigmine
Neostigmine
Pyridostigmine - this is Mestinon
Ambenonium
Demarcarium
Rivastigmine

Mestinon does the job better than any other Cholinesterase Inhibitors but there are alternatives if you can't use it. All of the above are reversible so they would behave in a similar manner to Mestinon and have a relatively short half-life in your system. I would think that you would need *something* to manage the downs if you're experiencing a lot of ups & downs.

The imunosuppressant is great for long term reduction of the symptoms but on a daily basis I'd certainly want something to get over the hump on a bad one...

[bu452000]

My symptoms are episodic also. Usually if I do too much I will get more MG symptoms in my legs and throat. Other times I can do strenuous exercise with no MG and still other times I can do relatively nothing and get hammered with the MG. I take low doses of mestinon, 30mg every 4 - 5 hours, and take slightly more when I need it. Over the past two years this seems what works best for me. 60mg at any one time makes me sick unless the symptoms are severe. You need to find out what you body tolerates the best. If you can stay away from the stronger meds and live with the disease it would probably be the best as all the meds except Mestinon have side affects. At least that is my plan. I was on Prednisone for 4 months and just came off and am finally starting to get back to normal. As it did help with the disease the side affects for me were terrible.

Hope you can figure out what is best for you.
Al

[TexasRose]

I am unlike others here in that Prednisone makes me feel so much better! I only take low doses and only for short periods, but for me it is like energy in a bottle.