I was diagnosed for MG by blood tests after double vision, tunnel vision, tiredness etc started while being treated for Ptosis. Had cataract surgery because it was needed and should be done before eyelid surgery. Also waiting for MG to settle before getting new glasses post cataract. will probably need minor long range and a little more short range help with glasses but cant be sure until MG effect on eyes stabilize. Waiting for Chest Ct, and nerve conduction tests to be scheduled as well as a sleep apnea tests(not sure why the sleep apnea).

Neurologists started me on 60 mg Mestinon 2x a day (actually Pyridostigmine because I asked for the generic) I have been taking that for 2 days.
20 Prednisone 4x a day for 2 weeks, then 3x for 2 weeks, then 2x.
I started that with a 80mg dose early this morning.

I read somewhere that pred dosages were calculated by weight and I weigh in at 220 so that may not be as high as it seems. Also my symptoms primarily involve the eyes. I have tiredness etc, but no breathing issues and I did ok on the Neurologists strength test. I believe that if I had breathing issues he would have started low and ramped up instead of the reverse.

Day 1 made very little difference, but day 2 showed some improvement.
Today had been a pretty good day. Just a couple of bouts of double vision and some stronger instances of Ptosis when I drove around some. The Ptosis has been minimal for about a week but I had almost stopped driving altogether. Only side effect so far has been a little diarrhea.

Now for the questions.

Is there a problem with using the generic for pred. My insurance calls it a non preferred generic. Just a hypothetical question as pred costs about $250 a month more then the generic and that could double if the dosage needs to be increased to what some of you are taking.

I thought the Mestinon would work quicker like the first time I used it but be temporary. Does it some times take a day or 2 to build up?
I thought the pred would take awhile. Does it sometimes start working right away?

What should I expect now for side effects for the pred?

What are the odds that the MG treatment will not correct the Ptosis and that I will still need eyelid surgery?

How long should I wait for MG symptoms to stabilize before going back for new eye glasses?

Can anyone share their experiences on this?

Edwin, If I were you, I'd talk to your doctor about the Pred situation. And, if it were me, I'd rather toxify my body with a "preferred" generic!

Mestinon doesn't "build up." It has a very short life. It kicks in after about 15 - 30 minutes and then wears off about 2 hours after that. You might need to take it more often or take a higher dose. DO NOT change things without talking to your neuro first. More isn't always better with Mestinon. It can make you weaker if you get too much of it.

I would need to write an anthology to explain the possible side effects of Prednisone/steroids. You can have mild to severe effects, some that last a long time. You can have Pred-induced diabetes, brittle bones, increase in infections, digestive issues such as a leaky gut that can lead to more immune problems and so on.

You definitely need to be on a calcium and vitamin D3 regimen. Plus some good omega 3's.

Ptosis can be impossible to get rid of, even for people on all sorts of drugs. Mine fluctuates greatly during the day, though I'm only on Mestinon.

If you have eyelid surgery, you will still have muscles around your eyes that will get weak and "droop." Then you'll look like people who've had too many facelifts! It's a personal choice but you need to know that surgery is not necessarily the answer. Talk to your neurologist about it too, for a second opinion.

I've had eye appts. for years with Mestinon and without. You can only deal with the current state of how you're doing right now. The eye doctors can figure out what your vision, whether you have ptosis on the day of the exam or not. Also, the drops they give you for the exam can make your ptosis and MG worse! So it really doesn't make sense to wait.

Does that help? I think you need to have a sit down with your neurologist. Write down any questions ahead of time and maybe even give him a simple list of them. It can be easier and quicker for doctors to read your questions than to have you say them.

I know this is a hard thing to go through. When I first knew I had MG, I read every single little thing I could get my hands on. While the medical books, articles, PubMed and the Internet were great, it was the people with MG who helped the most. Just give yourself time to adjust to it all. And keep on asking questions!


Annie

Hi Edwin,
I´ve been taking generic and brand pred in and out for years according to what my pharmacist had on the shelves and never saw any differences...
Maurice.

I agree that prednisone is prednisone. I would not pay for the name brand.

Edwin, Since I had a massive headache yesterday, let me ask you to clarify what you meant by "non-preferred generic" versus the one that costs $250 more.

There are both non-preferred generics and brands. So that makes for four categories. Some insurance companies may have even more categories than that, with multiple tiers of drugs, preferences and their costs.

I wasn't certain if you were referring to a preferred brand drug costing $250 more or a preferred generic drug costing more.

It's your body and your money and only you can decide - with your doctor - what is best for you. It does help to speak to a pharmacist too, as Mrs. D will tell you.

Maurice and Celeste, I'm not trying to be contrary here. The latest studies on drugs, however, shows very clear differences even between generics! And brands too. That includes strength, quality, time before expiration and, yeah, cost. The exact drug formulation is not the same between brands and generics.

For example, take Keflex/Cephalexin. One of the generics, the preferred one, I can't tolerate. I nearly puke while swallowing it. My doctor prescribes one of the brands. Due to my particular history (which is different for everyone), I need to be consistent in my drug choices. Beyond that, there is a difference in effectiveness between some of the Cephalexin generics.

Steroids have been around a long time, just like Keflex. But that does not mean that they are all exactly the same. If you don't have any problems, that's great for you! I was simply trying to be informative. It's up to you, Edwin, to make your own decisions!

Annie

Thanks for the input Annie, I always appreciate your input. I believe the flag 'preferred generic' is just a drug insurance term and mainly affects rates but I am not sure. Also I made a typo. The Generic is not for pred. pred is cheap. It for Mestinon (Pyridostigmine). It is about $35 a month for the generic, $295 for Mestinon. That is for 60 mg x3. That could double or triple if I go to more frequent doses and I add the time release dose for night time. That is insurance rates with a Medicare part d. plan. That could itself go up while paying higher rates during the 'doughnut hole'. It may end up being a mute point for me. The mestinon has only had a minor effect for me. I started taking it 2 days before the pred to see. The effect of the pred has been very dramatic. Only side effects has been some diarrhea and I had very little sleep last night. I have had just a little eyelid sag and just a little double vision and that occurred when I was doing to much. yesterday was the 2nd day for pred. I know from this board this could change to much worse side effects very quickly but so far so good.

I also use the generic mestinon and it works well for me.

I use generic too

I use generic also

I use genaric mestinon also. Works pretty good. 60mil x 4 dailey

FREDH