[Bambilin]

Actually, fosamax says to avoid magnesium when taking it because it reduces absorption.

[Bambilin]

I’m 81 years old and was diagnosed with MG 6 years ago. I’m on mycophenalate, prednisone, and mestinon. This past year my condition and quality of life deteriorated significantly. I started Vvgart 10 weeks ago. The first 4 infusions had little or no positive or negative effect. During the 4 weeks off, I gradually started getting more energy for a couple of weeks. Then the week prior to starting the second 4 infusions, my energy tapered off. With the 5th infusion, I started feeling better fairlly quickly and after the 6th, I have a lot of energy–with rests between tasks. HOWEVER, Vyvgart has lowered my IgG to dangerously low levels (154) which means I’m virtually home bound because I’m so susceptible to catching a communicable disease. My IgG level didn’t even return to a normal amount during the 4 weeks off. Unfortunately, I was told they cannot reduce the dosage or increase the timing between infusions due to Vyvgart protocols (probably because of liability insurance). Plus, my pharmacist says they have no protocol for dealing with patients having very low IgG side effects. Vivgart literature says they had few people over 65 in their study, which is too bad. So, I’m working with my neurologist to change to IVIG which has more risks but will allow me to leave my home with a mask. I hope it works as well as it did during my first year of treatment.

[Bambilin]

My back and legs are both weak. 10+ months before diagnosis I found myself leaning forward to the right when walking later in the day because of weak back muscles. Core strengthing rehab didn’t help. Rehab did help my legs, then.

I parked a rollator in my kitchen to sit on. Rolls out of the way easily. Helps a lot to sit now and then. Standing hurt my back long before MG.

I use a stand-up walker to exercise my legs or to get around when weak. Carry stuff on the seat.

Tylenol is my friend now and then.

[Bambilin]

Imodium helps. But then I’ll alternate between diarrhea and constipation. After 5 years I’ve given up and use disposable briefs. I have to admit that eating shredded wheat instead of donuts for breakfast will really help.

[Bambilin]

I finished 4 vyvgart infusions with no noticeable improvement. Should I take the next 4 after my 4 weeks off?

[Bambilin]

I’m becoming very conscientious of my disabilities as I’m 81 and have had MG 5 years. Being obese isn’t helping either. I got a stand-up walker earlier this year and it has helped with my mobility immensely. I have a lift chair that’s wonderful. I have a seat in the kitchen where I can rest while waiting on the microwave, for example. I work in 5-10 minute intervals, resting in between. My house is on one level with laminant floors that reduce fall risks. I have grab bars at front and back doors to help me up a couple of steps. Also in my shower with a seat. Installed Kohler toilet seats that duplicate handicapped toilet height. Disposable underware helps with mestinon diarhea side effects. Adaptation increases my functionality, lessens my dependence, and improves my safety.

[Bambilin]

My neurologist said I’m not sick enough.

[Bambilin]

I had one episode after stopping to eat half way on a 200 mile trip when my eyelids started jittering and I could hardly keep my eyes open. Removed my colored glasses and could see better. It stopped in about 4-5 minutes. They jitter sometimes after I eat supper at home, too. Or, if I use my eyes too much looking at a screen.

[Bambilin]

I took IVIG therapy for a year while mycophenolate was taking effect. It may have even saved my life since when I was first diagnosed and very weak, I was able to receive two infusions prior to major surgery that helped revive my strength some.

[Bambilin]

I got MG when I was 76, five years ago. The first year was terrible until I got on IVIG for about a year while my mycophenolate started working. I take mestinon and prednisone, too. The second year was back to normal. Then COVID hit! I just hunkered down at home and gave up playing bridge twice a week with my friends at the bridge club. Anxiety and isolation took a toll. Even though I’m well vaccinated, I fear going out to socialize. I’ve steadily gotten weaker. Never had a crisis. But I’m not sure how much of the weakness is from having 5 more birthdays. I struggle with the ups and downs of physical and brain fatigue. And, with accepting my limitations. Fortunately I have a very helpful and understanding husband who pitches in to fill the gaps I leave.

[Bambilin]

I cannot keep my house as clean and often cannot complete cooking our supper. Fortunately, I have a very helpful husband. But, I do fall into the trap of feeling I’m a burden, even useless at times. We met some people in another town recently and went to the botanical gardens. However, I could not walk very far even with a borrowed walker. Fortunately they had a wheelchair we could borrow. But, I felt like I had ruined everyone’s time. They all insisted that they understood and all was okay. I felt better about it the next day. But I was pretty upset at the time. COVID fears limit my outings severely. So, I think isolation is a burden we all feel.

[Bambilin]

I did, thank you!

[Bambilin]

Thanks for the follow-up. I’m 81 and seem to be deteriorating in strength and stamina. Plus my lower back is very weak and painful after five or ten minutes of cooking, etc. I want to blame some of it on my age but I think three years of isolation from COVID-19 and inactivity has also taken a toll physically. I’m happy your treatment has worked.