[danbee46]

I have had OMG since 1962. For many years my symptoms have been a slightly drooping right lid and some ptosis in both eyes. Since I have adapted to these things my docs and I agreed that I should not take immunosuppressants since the side effects could be worse than my symptoms. However, over the last few weeks, the drooping eyelid has gotten significantly worse to the point that at times the lid won't open at all.

I also have type 2 diabetes, which means that prednisone is usually contraindicated because in can raise the blood sugar levels. I have appointments coming up with my docs to discuss whether we should try a small dosage of prednisone while carefully monitoring my blood sugar.

I was wondering if anyone here has the same problem and how it was handled.

--Dan

[pingpongman]

Hi Dan,
Yes I have the same condition along with double vision. I have generalized MG and was diagonized about a month ago. Today we discovered my sister has it. Back to you. My diabetes is also type 2 for about 6 years. I take Metformin 2000mg a day. A1C runs 6.6-6.8. I started MG with small dose of Mestinon (nothing) then they doubled it 60mg 3 a day (nothing) then they added 180mg slow release at night (nothing) then they added Neostigmine (nothing) then they added big dose of Prednisone over a 16 day peroid to be tapered down every 3 days. The Pred has done nothing for my eyes but has greatly increased my energy level. I am now in the taper down phase so we will see how my energy levels are doing. My diabetes doctor did know of the hazards of Pred but he said a 16 day run won't be that bad and he didn't want to put me on insulin because the sugars will drop back as I taper. The highest so far has been 366. In the mornings it is 120 because it has been a few hours since the Pred dose. I feel pretty comfortable with this so far. Just that nothing has helped my eyes. Hope this helps you. I'm new at this too.
Mike

Originally Posted by danbee46

I have had OMG since 1962. For many years my symptoms have been a slightly drooping right lid and some ptosis in both eyes. Since I have adapted to these things my docs and I agreed that I should not take immunosuppressants since the side effects could be worse than my symptoms. However, over the last few weeks, the drooping eyelid has gotten significantly worse to the point that at times the lid won't open at all.

I also have type 2 diabetes, which means that prednisone is usually contraindicated because in can raise the blood sugar levels. I have appointments coming up with my docs to discuss whether we should try a small dosage of prednisone while carefully monitoring my blood sugar.

I was wondering if anyone here has the same problem and how it was handled.

--Dan

[danbee46]

Thanks for responding Mike. After having OMG for 48 years I thought it had stabilized. I guess you never know. Sometimes the stresses we sometimes face trigger bad things. Others have reported that prednisone has helped the eyes so I guess I'll just have to work with my docs and see what happens.

Good luck to you.

Dan

[catie]

Hi Dan!
I've had OMG for probably 8 years, but was just recently diagnosed and started on some treatment. My OMG was fairly stable for about 5 years, and then my double vision became much more of an issue after I had some unrelated surgery.

Although I do not have Type 2 Diabetes, I am considered "prediabetic", with an A1C of 6.3. There were concerns about starting me on prednisone, but I have done well on it so far. I'm on a high dose (now 60 mg/day) and am hoping to see a decrease or elimination of the double vision within a month. I monitor my blood sugars at home and they have been stable, on a strict diet (limit sugar and sodium).

Similar to Mike, I have had more energy while on the prednisone. I have been fortunate to not gain weight (yet) since starting the pred about 1 month ago. In fact, I've actually lost about 5 lbs, I think due to my better nutritional intake and increase in exercise.

It was hard for me to make the decision to use the prednisone. I tried Mestinon with a pretty limited response, and the double vision was really impacting my daily life. I'm still keeping my fingers crossed that I'll see a reponse from the prednisone. I'm not sure if it's more difficult to treat, the longer you've had it. My neuro felt that the treatment would not be successful unless the dose was 50-60 mg/day.

I hope your appointments go well and you get your questions answered.

Cate

[pingpongman]

Hi Cate,
I started 80mg a day of Pred for 7 days then taper 20 mg a day for 3 days till stop. I think comes to about 16 days. At this point no results on my double vision. Its been 8 days now. The neuro-opt said I could see results in 2-3 days but he was wrong. The double vision is what is driving me nuts. I love to play table tennis and with this vision it is impossible. Plus mine is so bad I can't drive. I have to black out one lens in order to just get around very carefully. My home has 3 sets of stairs which give me a fit. If I could clear up my eyes I think I could cope a lot better. Good luck to you on the Pred hope you do better than I'm doing.
Mike

Originally Posted by catie

Hi Dan!
I've had OMG for probably 8 years, but was just recently diagnosed and started on some treatment. My OMG was fairly stable for about 5 years, and then my double vision became much more of an issue after I had some unrelated surgery.

Although I do not have Type 2 Diabetes, I am considered "prediabetic", with an A1C of 6.3. There were concerns about starting me on prednisone, but I have done well on it so far. I'm on a high dose (now 60 mg/day) and am hoping to see a decrease or elimination of the double vision within a month. I monitor my blood sugars at home and they have been stable, on a strict diet (limit sugar and sodium).

Similar to Mike, I have had more energy while on the prednisone. I have been fortunate to not gain weight (yet) since starting the pred about 1 month ago. In fact, I've actually lost about 5 lbs, I think due to my better nutritional intake and increase in exercise.

It was hard for me to make the decision to use the prednisone. I tried Mestinon with a pretty limited response, and the double vision was really impacting my daily life. I'm still keeping my fingers crossed that I'll see a reponse from the prednisone. I'm not sure if it's more difficult to treat, the longer you've had it. My neuro felt that the treatment would not be successful unless the dose was 50-60 mg/day.

I hope your appointments go well and you get your questions answered.

Cate

[catie]

Hi Mike!
I'm sorry to hear that the prednisone has not helped your double vision. Are there any other treatment options available to you?

I'm cautiously optimistic that I'll see some results. Neuro told me to try at high dose for a month, and then maintain that dose for a month after seeing results, then taper.

I completely understand your frustrations with the double vision, particularly the stairs. I always hold on to bannisters now, or else... I think it is hard for people to imagine how significantly it can impact the day. Fortunately, I can still drive, during the early part of the day.

I sure hope there are other options for you. Just seven days on high-dose doesn't seem like enough time from the information I've gleaned off of MG websites.

Cate

[pingpongman]

I agree with everything you said. But my feeling is what works for one case doesn't work on another. My neuro- muscular doctor has me on high dose of Mestinon and also Neostigmine but no results. My neuro-opto put me on Prednisone. He is very aggressive attacking MG. The muscular DR is very slow in his approach. But at $6500.00 a office visit I would be slow too.

Yesterday we discovered my baby sister has MG. My mom and 2 of her sisters (aunts) had it. Now my sister and I are thinking of going to Duke. Mayo (Fla) is too far for us. My sister doesn't have double vision yet but I told her I thought she should get on Mestinon quick in hopes it will slow it down until we can get to Duke.
Mike

Originally Posted by catie

Hi Mike!
I'm sorry to hear that the prednisone has not helped your double vision. Are there any other treatment options available to you?

I'm cautiously optimistic that I'll see some results. Neuro told me to try at high dose for a month, and then maintain that dose for a month after seeing results, then taper. Although the Mayo doc wanted to start at 60 mg/day, I ended starting at 20 and increasing 20/wk up to 60, b/c my PCP and local neuro had concerns at starting at a high dose. It's really hard when the docs don't agree and the patient is stuck in the middle.

I completely understand your frustrations with the double vision, particularly the stairs. I always hold on to bannisters now, or else... I think it is hard for people to imagine how significantly it can impact the day. I've been told that I should just close one eye and that'll work, but that is not a decent long-term solution.

Fortunately, I can still drive, during the early part of the day. I did recently retire b/c I couldn't see well enough to do my job. The decreased stress has actually been a good thing.

I sure hope there are other options for you. Just seven days on high-dose doesn't seem like enough time from the information I've gleaned off of MG websites.

Cate