Mestinon MG QUESTIONS
 

I am currently taking 60mg 3x daily. Not helping my double vision. I know it is different for everyone but if you just have double vision and drooping eye lids with minor arm and leg weakness, how many mg do you take each day?

Hi
I take 180mg (3x60) plus 120mg time release at night. I also take 150mg of imuran a day. I just finished my 4th IVIG treatment have one more next week. So far none of this is working. That said treatments vary person to person. My neuro said Mestinon is like a bandaid and Imuran is for the long haul but can take up to 6 months to see any difference.
Mike

I don't have double vision, but I have read here that Mestinon has helped a little or not much. Improvement has been noted by some who have tried IVIG and/or pred.

Bottom line...you and your neuro will have to sort your way through the choices and the responses that you have to your meds.

For me it took a while, 5 to 6 months for the Mestinon to help with double vision. I've found that too much Mestinon actually gives me doulble vision just as much as not enough. I was taking 120 mg daily in the beginning of my MG, but that ended up being too much for me. I now take 15 to 90 mg per day (my neuro gave me permission to modify my dosage between 15 to 120 mg per day). If I take more than what I need I do get double vision.

Everyone is different for what doseage works for them.

Dave, I thought an analogy might help understand Mestinon better.

What if you had a raging headache and a minor backache? You take acetaminophen but it only helps get rid of the backache and not the headache. You can't take more meds because, well, it's not good for you! ;) You would need a different medication in place of or in addition to it.

It's the same with Mestinon. If you take 60 mg., for example only, it may help with your leg and arm weakness but not get rid of the ocular/facial muscle weakness (since that may be worse). But if you take too much Mestinon, targeting the muscles that are most weak, your less weak muscles can become weaker due to overdosing.

I am on 90 mg. every three hours, round the clock. I can't take other drugs so that is why I have been dosed this way. A consistent dose for me 24/7 works the best. My eyelid/eyebrow drooping is very activity dependent or dependent upon things like stress, eye strain, driving, heat, etc. Unfortunately, those eye muscles tend to droop first. So if that's the one thing that is interfering with your daily routine, you may need to at least talk to your neurologist or a neuro-ophthalmologist about alternatives.

Pred does help some people but it does come with very serious side effects. Pred is a LONG TERM drug and is very hard to get off of. IVIG might work for you. It is a trial and error kind of thing. And there is almost nothing, besides remission, that gets rid of the weakness altogether.

I don't have any answers for you. Everyone with MG is different, like everyone here says. I hope you find a balance that works for you.

Annie

I am taking the same dosage for breathing and minor arm/leg weakness. Initially, I wasn't taking 60mg 3x, but when I did I got the blurry vision and it was too much. Since, it made me unable to lift not a limb. It was just too much too soon for me.

Anyway, after being coaxed back into taking Mestinon, I have made peace with it. It helps me to breath at night which was big, because the muscles of my lungs could not do their job, while being compressed during my resting.

I would say monitor how long you have the blurry vision. Is it lessening overtime? If so, the Mestinon might be working. If not, you might want to come with the hard facts to your doctor.

Poetist, was slow release mestinon suggested to you? Did you tolerate it at all? It was suggested to me and thru the nite in summer when I am worse it is appealing but with the gastro-intestinal stuff having gotten extremely bad this past year plus I was afraid to try pill. I do hesitate more on slow release pills from a bad past experience. If it is trouble it is longer to get out of it.

Annie59

No, it was not, and I never knew such a thing existed. I was just given the pill form 60mg. It works best at night for me.

I have generalized MG so i get a lil bit of everything (arent i lucky?) but one of the worst things tht pops up on me every once in a while is the DV so i feel for ya. the one thing tht i noticed it happened when i skimpped on my Pred on accident or something like tht. I know that for me prednisone is pretty much the only thing that helps me with that.

Brandon