Sounds like a good plan. I started at 20 mg prednisone per day and took about the same amount of mestinon as you are. I didn't have IVIG. My prednisone did some mild improvement in a month or so, but I wanted faster progress and eventually took 60mg per day. From start of prednisone it was about 5 months until my MG symptoms were pretty much gone -- but I am pretty sure if I had a higher dosage earlier, I would have gotten better faster.

Normally when you first take prednisone, you have some possibility of getting worse early. So many doctors start us low, see how we react before considering higher doses.

While I was on prednisone, my blood sugar went up into the edge of being too high and so my neuro wanted me to take the lower dose (20). I made an agreement with her to test my fasting blood levels each morning, go on a diabetic diet to try to keep it low, and then take the high doses. I really wanted to get MG under control as I was trying to help my wife through stage 4 cancer (she made it).

Prednisone is cheap, very little bother as you just take a daily pill, and for a start pretty efficient for most of us. I took it for a year. It turned me from being in the hospital with breathing difficulties to an almost normal functionality -- in terms of MG symptoms.

The down side are side effects and long term problems. I was not too bothered about that as my mother took about 11 mg per day for 25 years and lived a good active life to age 92. She did get type 2 diabetes, cataracts, and had to always watch her diet for weight gain, but it made her life decent rather than in severe pain from polymyalgia rheumatica.

So long term prednisone is a good start and then a switch to something else a good plan.
good luck
Russ

I started on 10mgs of Prednisone, and gradually increased by 5 mg increments until I was at 30mgs. I weighed about 126lbs when I began. It wasn't until I began taking 20mgs/day that I started feeling better, and I noticed the improvement after a few days. My quick response to the 20mg dose could have been partially due to the accumulative effects of the previous doses.

I have always been a healthy eater -- whole grains, vegetables, legumes, fruit, low fat dairy, and occasionally fish. When I went on the Prednisone, I cut way back on bread and carbohydrates. About month 10, I started experiencing tremulousness. After determining that my thyroid was fine and the Mestinon wasn't causing the tremor, I narrowed the probable cause to insufficient vitamin B complex, B12, or vitamin D (my vitamin D blood levels were low). I added a B complex and vitamin B12, and increased my vitamin D and my tremors are pretty much gone. May be something for you to keep an eye on.

Despite the healthy diet and adequate exercise, I have gained about 10 pounds in the 11 months I have been on Prednisone. Everyone says that I look good -- I think it is possibly because I feel so much better.

I read somewhere on the Internet that it is a good idea to talk with one's loved ones and let them know before you go on Prednisone that it can cause mood changes -- mostly exhilaration and sometimes agitation, so I did that. At 20 mgs I did experience a mood change -- I became calmer than usual. Weird but lovely. May it happen to you.
- Nan

Thanks for your replies and thoughts.

Started the Prednisone this AM. 20mg. No Change.

It will be interesting to see when/if this stuff kicks in.A

After my diagnosis, I was started on 5mg prednisone daily. Eventually, was brought up to 40mg a day. Also started on cellcept, (2x500mg) twice a day, and Mestinon, 60mg, 3xdaily. That was seven months ago. Had 3 sessions of IVIg for 3 consecutive months, 3 .days per week. Since that time, my prednisone has been reduced to 5mg daily, cellcept remains the same, and Mestinon is 60mg 5xdaily. Seem to be relatively stable. Prednisone disrupted my sleep pattern and gave me a voracious appetite. At the lower dose, I seem to be sleeping somewhat better with no breakthrough symptoms. No problem with chewing, swallowing or speaking. My big problems are GI issues due to Mestinon. Gastro Doc trying different things to slow down bowel. What helps one ailment creates problems in another.

Absolutely! Our medication would seem to be a continual balancing act with the various interactions playing against one another. Always the danger with non-specific medication. There again, as previously posted we are entering the stage of targeted treatments, usually based on very specific blood tests and this is very exciting. Having recently been diagnosed with Crohn's Disease, to add to my MG, I am somewhat relieved (pun intended) to hear that there is much progress with said targeted treatments - it seems I might be added to the list.

I hope you see improvement on 20. That would be great because when I was on more than that my face got real puffy,
20 is manageable but the weight is sticking to me like glue at 20. I was up to 60 od prednisone and put on weight that I now need to get it off. Working hard at it.

I guess I don't know what improvement looks like....

Really seeing little change, other than being a bit more "righteous" - (krankie)

Going back tomorrow for my 2nd IVIG out of 3 this series. Then jump a month.

We shall see......

Trying to decide if you are improving or not can be somewhat scientific -- if you use one of the forms regularly to evaluate your symptoms

Take a look at some of the tests

https://info.soliris.net/wp-content/uploads/2017/12/Assessment_Tool_Booklet.pdf

As a scientist, I always tried to evaluate my symptoms weekly and included -- how far I could walk before breathing became difficult; the degree of double vision, and a few tests like how long I could hold a weight with my arm extended.

When I talked to my doctor, she wanted to know how I was doing, and having some measurements I could give that showed what was happening was important in med dose changes.

Good Luck
Russ

Thanks Russ -

Good input. :-)

I am new to the group. Thank you so much for the information on the meds you are taking and how it helped. My symptom started with my left eye lid. Eyelid is still not working. Walking ability still bad and I have fallen 3 times. Now using a cane and just started PT. I am hopeful that this will soon be controlled. What did you do when you had trouble swallowing? Did you eat certain soft foods? What should I stay away from?

Hi Scrptrldy1
Welcome to the group! Your post would get more attention if you re-did it as a new post rather than a comment on a different one.

As to swallowing trouble, I took a Mestinon (pyridostigmine) pill about 30 minutes before eating and that made chewing and swallowing work better.

The goal is not to adapt our eating to MG, but to treat MG so we can eat normally. Are you on meds? We normally take two kinds of medications; Mestinon for temporary help and an immune suppressing medication to get control long term.

As MG caused my chewing muscles to quickly tire, I ate slowly, paused a lot, tried to eat things with less chewing needed when I was first into treatment and it hadn't gotten working yet After my neuro approved Mestinon "as needed" rather than X per day, I managed my activities by taking the pills before meals or activity and that helped a great deal.

A few months on prednisone dampened my immune system and the bad antibodies began to disappear from my blood, the neuro-muscular junction grew back the receptors and I got back most of my weaknesses.

Although we do have to adapt to MG muscle problems, we should not assume that is our future, as with treatment most of us get back our lives decently. And so I encourage you to press forward with treatment.

My life was so altered when I first got MG, I thought I was going to be a basket case into the future, but my neuro assured me that treatment works and we just needed to get through a few bad months and all would be improved. If I had wanted a faster improvement I could have taken a few IVIG treatments on the way to prednisone working, but with Mestinon (6-8 per day) I did OK.

Good Luck
Russ

Hi Scrptrldy1

Agree that it's best to start a new thread, especially as a newcomer. Personally, I'd be reluctant to make much comment before you give us an indication of how long you have had MG and what has happened to date regards symptoms and medication? Even then none of us are that well equipped to give any form of medical advice. MG is such a variable disease in just about every meaning of the word.

So, new thread and ask away.

Take care

Peter