Hi Ranna. I also have osteoporosis and for generalized MG needed to go on Prednisone (which causes bone thinning). I had taken the weekly Fosimax tablet years ago with no problem. You have to take it on an empty stomach and stay upright for a half hour or so afterwards. Many MG patients take weekly Fosamax and seem to do well with it.

Before I went on Prednisone, my PCP sent me to an endocrinologist to see which medication would be the best way to protect my bones. Because the Fosamax tablets are no longer a good option for me on account of MG swallowing problems and gastric issues, he recommended a yearly Reclast infusion. I had the Reclast infusion in late December and had no side effects at all. Good to go, I began Prednisone a few days afterwards. I am also on Imuran and have plasmapheresis treatments.

Although I have all the classic MG symptoms including double vision and dysphagia, since I am seronegative, it took me over 20 years to be diagnosed. I have glasses in three different prism strengths, and sometimes the prisms help, but much of the time I have had to wear an eyepatch. Plasmapheresis with Mestinon usually makes my double vision go away for a few days. What I am thrilled about right now, though, is that after 8 days on my highest dose of Prednisone (30 mgs), I no longer need to wear an eyepatch with my prismed glasses. Both the plasmapheresis and the Prednisone seem to help the Mestinon work better.

Prednisone can have loads of side effects. I don't know if I would have opted for it if my MG were limited to ocular.

Hi Nanosecond, Thank you for your information, which has really helped me make a decision regarding my osteoporosis. My T-score is -3.7 in the spine, which is terrible, so I really do need some kind of treatment. I;m going to request Fosamax instead of Prolia. Fosamax has been around for a while, and I feel better about that.

I;m so happy you no longer need an eye patch. Something is working. Hope it lasts. You've been through so much. It's so hard to weigh what to do - prednisone is a bear and the side effects,,, This is a hard disease.

I don't think double vision will ever go away since I've had it so long, and I don't know if it is due to MG or just plain bad luck. I can't watch TV at night without closing one eye even with my prism, so mostly, I read. It's hard in the sunlight, also, because of light sensitivity, so I need to purchase sunglasses, probably wrap arounds.

I so much appreciate your info.

Ranna, I read a lot, and audiobooks have been a good compromise. Even with an eyepatch, my remaining eye usually doesn't focus well. I have had double vision for over 20 years, so this improvement on Prednisone is uncharted territory for me. Maybe I will be able to drive again -- although I will settle for being able to bicycle slowly ;-) .

nanosecond, Oh, that was funny! Yes, maybe we both need bicycles, and we'll trot along! Kidding aside, I am so happy you are improving.

I think I worry about MG crisis when taking a new drug or having any type surgery. Heaven forbid I break something! Not to mention stress, which is always an issue. I can't seem to get over a simple cold, and the coughing is so much worse.

WOW! I had double vision for about TWO

Wow! I had double vision for about TWO months and THAT was TOO LONG! I started taking a LOT of drugs AND I had 5 infusions of immunoglobulin-- I don't know WHY the double vision went away. I read your heading as "OH MY GOD and osteoporosis. MAYBE that IS what you meant tho. The HARD PART of MG is that the prescriptions seem to have so many side effects and interact --badly-- with so many drugs. It is HARE

Yes, Dzinfridg, the medicines for MG are pretty scary, and I would never want to be on prednisone due to my worsening osteoporosis, plus there is the blood sugar issue. So, I just keep hoping for the best. I am able to tolerate the Mestinon, however, it does not do anything for my double vision. I think I'm stuck with DV. My prisms really help, tho, except in the evening.

well crap..I just got diagnosed this week with MG, and have had the double vision for around 5 months. Looking back i think i have had MG for awhile,we just never knew what it was.I asked my doctor (Neuro) about prisms and he said not to get them the medication would help,Now i wonder. I have resorted to wearing a patch and it works pretty good,i take turns covering each eye. Today i start medication but no Predisone because i am diabetic and it is under control. What kind of side effects do these drugs have ? I go pick them up this afternoon but am scared to take them.

Hi Lenore1950, The Mestinon, I believe, may help to keep me from getting ptosis, but hasn't yet helped with double vision. Like you, I think I've had MG for years but was never diagnosed. I wore glasses before I ever had prisms, and when the double vision started, eye doctors automatically gave me prisms, which helped a lot, and I didn't think anything about it. The side effects I have with Mestinon are leg/calf cramping, eyelid flutters, but the cramping is bothersome at night. It wakes me up at times. I also hope I never need prednisone being prediabetic and having osteoporosis. I take Mestinon, 60 mg, three times daily. I hope the medication prescribed for you will work.

Hi Lenore1950,
Let us know which medications you have been prescribed, and chances are we will be able to help you.

Side effects are usually tolerable, and if not, there are often alternative drugs your physician can prescribe. My life has improved immeasurably since I was diagnosed with MG and have been receiving treatment.

Lenore1950, I agree with your neurologist re holding off on prismed lenses. Now that I am receiving treatment, my double vision is improving but still variable. I plan to have my vision checked in a few months. I might not need prismed lenses in the future -- maybe only an eyepatch for flares.

Ranna, as long as you are here..... :-)
How is it going with the Fosamax tablets?
- Nan

Hi Nanosecond, I have taken 2 Fosamax tablets so far, two weeks, and unfortunately, have lots of stomach issues, I am bloated, have acid reflux, and stomach hurts, and it just plain makes me feel crummy. So, I may have to try Prolia. From what I've read, it does not cause stomach issues. I go back to my GP in around 4 months, and I will ask about Prolia. I'm not crazy about a 6 month injection, but I will give it a try.

Yuck, Ranna Well, the Fosamax was worth a try. Maybe contact your GP sooner, so you don't have to suffer from the Fosamax GI problems? I have read good things about Prolia -- it was my first choice before my endocrinologist decided on Reclast. I had the Reclast infusion in December and am delighted that I don't have to think about taking anything to protect my bones until next December.
- Nan

Oh, now that's another choice, Reclast. Don't know too much about that, either, but yearly sounds even better than every 6 months. At least, there are a few choices. Yes, I may try and move up my appointment sooner, because I'm ready to put the Fosamax aside. Prolia actually was the choice my GP suggested in the first place.