Do you take Mestinon at all? And for the double vision, an eye patch works well ... and you can have "prisms" glued onto your glasses, an even better solution.

On the medication ... I found like others that getting a good doctor is vital to MG sufferers ... first, to get a diagnosis and then, to travel that trail together of developing the combination and dosage of meds that fits each one of us best In that regard, as tough as it may sound at this particular difficult time I would recommend contacting him/her with this question .. as opposed to just going your own way with it. I guess I'm thinking it's a matter of short term sacrifice for long term gain.

I'm still curious though, are you sure it isn't mestinon that you're adjusting? One rarely hears of Prednisone receiving this kind of frequent adjusting.

Thanks for your reply! I'm a clinician so very familiar with the differences. Not on mestinon. Didn't do much for me last time and tore up my stomach. I emailed my neuro this morning already. He usually responds promptly but will prolly hear back by Monday. Question you've never heard of adjusting prednisone??? That's odd bec regardless of your starting dose, unless it's a short course of meds like a week, once at optimal dose, must titrate up. Just some drs opt to titrate up citing that a high dose can cause weakness in some but I believe that's in the case of generalized mg where I have ocular.

Sorry, meant must titrate DOWN.

I've definitely heard of adjusting Prednisone but what made me think u were talking about some other med (e.g. Mestinon) was the big degree of changes u were talking about ...e.g. even starting at 60 mg sounded very high ... and then you mention going from 10 to 50 in 5 weeks.

My neuro doc must be much more conservative with Prednisone as per its side effects ... osteoporsis, high blood pressure, etc.

In any event .. continued good wishes and it's great urs answers e mails within a few days. I actually don't get direct answers back from mine .. in between my appointment dates every few months. I fone the neuro clinic and leave a question with the nurse .. and within approx half a week, she gets back to me. It's great though, I do get the help and guidance .. (and they always say, if urgent, get to er).

After 5-6 yrs my doc let's me adjust meds within a set of parameters. After 1 wek I let them know what I did and results Good or bad for the record. Take care

U know what FUNNY you mention that bec I went to neuro today against my better judgement. Thought I'd manage myself as long as I'm seeing improvement which I do see slightly with blurriness. No improvement with DV yet but not getting worse, understanding the magic happens at the optimal dose usually at 60 but hoping can be lower.

Well this dude starts blabbering off its not omg, maybe stroke. No not stroke, maybe thyroid. Um no not thyroid maybe MS. So of course what I did leave out with was my BP high!

I kinda know my pattern with this by now. After a bout of anxiety and stress, get DV after. So told him to order the bloodwork and that'll tell us what's what. I'm so pissy. I run three miles a day, down from 5 bec of knee injury, work in the field via public transportation and more than anything have a very active 3yo. I'd think any other issue would not allow me to do such things.

Sometimes you just want to scream don't you? But on other hand at least he's thinking.prednisone also works on other things so ? Is -is prednisone the only med you use? Maybe that's why his is questioning diagnosis. Like Reilly asked do you use mestinon with good results- that may help get MG diagnosis since many Mgers are negative in labs. Hope it's a better day! Ps do you wear sunglasses -many of us have issues in bright lights

Yes wanna scream and was dx'd in July 2014 with omg. This is my 2nd flare. Like the other poster said if it doesn't fall into the smooth boundaries he's used to then he sputters out everything. Mestinon did little for me but def tore my stomach up. And I hate having to eat so much for something with little benefit. My labs always showed positive. They seem to take a long time to come back. I'm praying they're not so off this round. The lower downward gaze DV wasn't gone all the way in the first place which is why I was still on the 5mg prednisone. So with a bout of anxiety it makes sense to me that since that was the last to go, would be the first to start up. Meanwhile I've had a shiddy few years. Was dx'd with early stage breast cancer while being worked up for OMG diagnosis. I complete my infusions next week. Tons of other activities in my life that provide stress and anxiety. I need to find coping mechanisms to include a management does of prednisone to help me thru this stage in my life so I don't stay cycling into these flares.

Hope it happens the way you want but you might have flares from things that you don't recognize yet.have you tried time released mestinon,drs try to keep low doses vs high due to sideffects.it's stinks that is soo complicated. Oh the life of an mger none are the same! Have a good nite!

There is literature stating it is better for us to start with high level steroids right from the beginning. That would kick this thing back. I almost wish that is what I did. I have never been on steroids at all.

Cellcept for me. Still hoping for a day when I don't have to take Cellcept any longer. That is all I have taken for some time now.

Good luck to you
TJ

Hi Mary,

I don't have MG, but wife was recently diagnosed, and I've been reading up like crazy. Seems like the general idea for prednisone is to get to a high dose of prednisone near the beginning of treatment, and then slowly taper down to the lowest possible dose while adequately treating symptoms. It sounds like you worked your way up to 50mg in the beginning. They usually taper up slowly at the beginning to make sure you don't have paradoxical worsening of symptoms on prednisone, which is known to be a risk. Then it looks like you were titrated down to current level of 5mg. Since, symptoms started up again, he wants to titrate up slowly, to find the magic number where you will have the lowest dose of prednisone while having tolerable or no symptoms. This is probably beneficial over the long run, as you do not want too much prednisone. That is my guess.

how long did thee prednisone take to kick off?