[Mark Shear]

I also gained 30 pounds but have been able to lose weight (same 30) while on prednisone. Here is what I did most is not a special thing I came up with but are  tricks I learned from others over the years.

1. stay close or stick to a Mediteranian diet. Low in fats and lots of good stuff to eat.

2. drink water or other fluids throughout the day particularly when you feel hungry between meals. This helps a lot. Diet drinks become more of a treat and provide a caffeine kick during the day. I drink enough water at dinner that I can just take sips of water if I wake up during the night (to pee or so the dogs can go out to do the same).

3. Snack healthy to snack at all. Pickles or other pickled foods are crunchy and savory. A handful of nuts are crunchy and salty.

4. Portion control is a big help. Drinking water along with or before the meal helps quench hunger.

5. Be good to yourself, if you have a big or calorie filled meal, there is always tomorrow to diet again.

6. Avoid fried foods. Try roasted veggies that you like.

7. Weigh yourself at least once everyday. This is a big help to me as I can see how I am progressing and it helps me set daily food intake goals. Be sure to weigh at the same time for one of them daily, preferably after you have gone to the bathroom, have minimal clothes on or you can guesstimate what you are wearing weighs as part of the fun. I t is fun to weigh at night guess what you may lose during the night and then weigh in the morning and see if that is accurate. This all helps me manage the days calorie intake.

8. Realize the first 10 pounds is the easiest, the rest takes longer and if you understand that will keep you from being discouraged.

9. I haven’t been exercising to lose this weight either because of MG brought on fatigue or laziness, not sure. Not a big exerciser anyway but it is healthier to exercise the best you can.

10. Set calorie burn goal in your Apple Watch, mine is only 400 calories a day. I don’t usually make that but it feels good when I do.

11. So go easy on yourself to go good. it may be more sustainable for you as it has been for me.

[Mark Shear]

My neurologist said I might need a cpap and I did not think I did. Got test and apparently I do when I am in deep sleep. Still have to take a sleep study with the machine so I don’t have any experience or  knowledge to impart.  I really didn’t want to add more to all the MG stuff but we will see if this helps. We also have an adjustable bed which is helpful with breathing when you have a respiratory illness like a cold or worse.

[Mark Shear]

Supposed to leave Sunday to go to Chicago from Los Angeles for 9 days. I have been having a rough MG week so now my doctor wants to see me on Monday. I will either have to change the day we leave or cancel the trip if the doctor wants me to stay for some treatment or other.  My brilliant wife took out a trip insurance but interestingly, it won’t pay the difference in the fare if we change the date rather than cancel and rebook.  This is a ridiculous loop hole so beware.  We shall see what happens…

[Mark Shear]

I mostly only had droopy eye, double vision when I first got the disease in 2019. When I had my first relapse (for lack of a better term) it progressed with neck weakness at times.  Long story short after IVIG, prednisone and mestinon were not making it any better, I have had a cycle of Vyvgart which helped a lot with all symptoms but mostly the neck weakness. Now a little over 2 months later, the neck weakness and need to nap has come back but milder so far. I never experienced neck pain other than the heavy head neck weakness. I think it’s time for the next cycle of vyvgart infusions but waiting for my doctor to decide. This is a strange disease as I never know when my neck or eyes will be good or bad.  Mestinon and naps help briefly. I don’t know if I’m too tired or lazy to exercise but trying to get back into exercise bike riding. Use to road ride 30+ miles or mountain climb (real mountains) so I know what I could do if I can get exercising again.

[Mark Shear]

TheresaG you are correct! That is the advantage of being retired. Me too as of last October. Good thing because I had an episode in February which brought me ultimately to Vyvgart. I too am still having double vision still which comes and goes all day partially based on how active I am, how much sleep I did not get and between the mestinon pills.

[Mark Shear]

I’m not a doctor but you won’t have to have IVIG when taking Vyvgart. I know I didn’t. Still taking prednisone though that is a process of reducing the amount. Went from 30mg at the time of the infusion down to 15mg currently. Mestinon I am still taking at the full amount. Good luck! If it is like with me and others here, it will help you!

[Mark Shear]

I used to donate plasma regularly about 5 years ago. Since I have had MG for about 3 years now , none of my doctors have told me if I can donate. I also have a variety of meds that of course I take for this but for other things as well.  Also, I’m a bit tired of needles for infusions and blood draws so even if cleared, I honestly don’t know if I would race back to do this any time soon. Don’t know if Vyvgart, prednisone or mestinon which are my MG drugs make donating unlikely or not.

[Mark Shear]

I used to donate plasma regularly about 5 years ago. Since I have had MG for about 3 years now , none of my doctors have told me if I can donate. I also have a variety of meds that of course I take for this but for other things as well.  Also, I’m a bit tired of needles for infusions and blood draws so even if cleared, I honestly don’t know if I would race back to do this any time soon. Don’t know if Vyvgart, prednisone or mestinon which are my MG drugs make donating unlikely or not.

[Mark Shear]

When I went into a crisis in February my doctor increased the prednisone to 30mg and I got IVIG as well. Prior to the crisis I had finally gotten down to 10 mg of prednisone after a year of my doctor slowly reducing my prednisone dosage down from 60mg per day.  I think they are all cautious about reducing prednisone too quickly as that too can cause bad things to happen. I was also switched from IVIG as it wasn’t helping and my symptoms were actually getting worse so I was switched to plasmapharisis for 5 times while they were working on getting me onto a different infusion drug, Vyvgart. Finished my first 4 infusions of that and it seems to be helping incrementally. I still have high hopes for that and don’t know when the doctor will want me to get more infusions of that but I know it is a minimum of 50-72 days before they do that again. It has allowed me to gain back some energy and have more breaks during the day from double vision. Doctor also decreased my prednisone to 25 mg from 30 mg before the infusions. I generally also take mestinon 4 times a day and I can certainly tell when it starts wearing off as that is when the double vision comes back. Hope this is helpful.

[Mark Shear]

I am going to try Rick’s great advice for techniques to use.  Before the MG, I never understood fatigue and I am still trying to wrap my head around it. I have the same symptoms the others who have commented said such as doing better in the morning, can only exert so much at a time and the randomness of fatigue some times.

I feel like I am becoming lazier so I try to do as much as possible in the mornings before fatigue gets me.  I feel like I should push it, ignore it but it is sometimes hard to do.

I am now taking Vyvgart (infusion #3) which I am starting to see incremental improvement so I have been able to do a bit more. I try to pace myself and plan rests the day before, after or during a big activity day.

Hoping to have the energy again to get back to normal activities and worried about knowing the difference between actual fatigue and feeling lazy.

[Mark Shear]

I was weaning down from 60 mg of prednisone and was down to 10mg every other day. In my case, I had a reoccurrence which I can not point to any trigger including the lower prednisone. This time, my symptoms have been worse. First time was just double vision, now includes neck weakness and fatigue. I am back up to 40mg of prednisone and just finished 5 plasmapharisis treatments and next to no improvement. All this to say, I am looking forward to my first vyvgart infusion next week from what I have been hearing in this forum.

[Mark Shear]

I start my first infusion next week. It was interesting to hear two different reactions to the infusions so far.  Keeping my fingers crossed for me and everyone leaning on vyvgart.

[Mark Shear]

I took IVIG for many months without any side effects at all. I can not say if or how much the IVIG helped. The first series of IVIG seemed to allow my prednisone dose to be reduced over time but in February my symptoms got worse. So my doctor changed my infusion to Vyvgart. Before they could get that going, I had to have 5 rounds of plasmapharisis.  The first round of Vyvgart (4 infusions) has helped incrementally.

I don’t want to sound like a commercial for any approach.  I am now feeling much less fatigued and my double vision is not constant during the the day. In other words, I have short to medium range eye clarity on and off through out the day now.I am currently down to 25mg of prednisone and take mestinone every three hours through the day up into the 7pm hour.  I stop taking mestinone at that point and just watch tv instead of any reading to give myself a break from the meds and it helps keep my calfs and feet from cramping during the night. It seems everyone has a different story, how the disease affects them and different reaction to the available medicines. So if your doctor is suggesting a particular drug or drugs and you trust that doctor, I would give it a try as the side effects are minimal and don’t seem to have long term affects over short periods of time. The only exception may be the prednisone both in side and long term effects. That alone is a good reason to use IVIG or Vyvgart.

[Mark Shear]

Thank you Theresa. I am hopeful.  Btw, I am seropositive.