TheresaG

Three years on Prednisone has added 20 pounds. 2 years 5mg, last year 13.5-20.

I definitely feel the added weight has impacted my flexibility, SOB, and joint pain, but who knows. I was 10 pounds underweight prior to the gain, so I would be very happy to lose the 10. The weight is in my torso, which never has been an issue for me.
need a new…[Read more]

They actually included I think 27 people or so in the study and they had mostly positive results. But I agree they likely have to have an independent study with just seronegative. Hopefully we won’t be neglected as there not nearly as big a group of us. That’s why I wonder if they will just use it off label for us.
time will tell.

I just completed my 4th round of IVIG infusions. I go every 2 weeks 2 days in a row to an infusion center. I too am given Benadryl for any allergic reaction and 2 Tylenol. This week as I am not a 4 time veteran, lol, I asked if we could pass kn the Benadryl to avoid the fatigue and I also regularly take Zyrtec , nurse said yes as I’ve had no r…[Read more]

Bernadette

can you explain what double Seronegative means?

thank you.

I too was looking forward to the approval and my neuro thought it would get approved for us as well.

i meet with him on 1/10 hoping to get info.
I started IVIG 6 weeks ago hoping it to be a short term deal.

I wonder if the drug company felt the approval would get the best chance of approval this way and we seronegative people will have to get…[Read more]

The ground in prisms on glasses I found way better than stick on ones, in fact the stickies did not work for me and caused migraines.
I get my glasses at Costco, and it only adds $30-50 if you want them permanent. I pay $129. Total for new prism prescription lenses, with all the non glare goodies etc.
I Also have them reuse frames as my sight is…[Read more]

Wayne, 12/23 as you likely know is the approval date with the FDA, then Medicare has to approve but it should be available after the first of the year according to my neurologist.

Absolutely allows my participation.
as a cancer survivor, I learned to be my own advocate, research the newest and greatest and try to align myself with research and or specialty institutions that do research and know the latest treatments. This site and the participants input has been invaluable to see who is doing well and who is not and what…[Read more]

Symptoms, initially eye droop, and overall fatigue.

began in 2012, then in 2013/2014, I had problems that had to be investigated, leading to an 18 month diagnosis of another rare disease of Neuroendocrine Cancer. Time out for surgery in 2014, then when I did not regain my otherwise prior great health, energy, etc, and the fatigue started getting…[Read more]

I started on 2×60 mg/day, then bumped  to 3. I began the cramps in 2, then the Gastro issues at 3. I would try to go to 4, and that caused lots of gastro.
my neuro recommended taking 1,1/2,1,1/2 etc. this helped.

Now 4 months later, I’m able to take 3.5-4 a day, and do 1,1,1/2,1. On about the 3rd day the gastric issues kick in so I will skip a pi…[Read more]

I was on 15 mg pred and 180 mg mestinon, somewhat controlling my seronegative MG.

had 1 then 2nd Pfizer completed in February. I’m Somewhat comforted in hearing these stories as my MG exacerbated for the past 6 months. I was under great stress, moving remodeling , so attributed it to that.
My response to vaccines were headache and feeling c…[Read more]

Jodi,

I wonder if a prescription for Valium would work for you.

i find just a 1/4 tab if a 5mg Valium works for those moments if anxiety and sleeplessness, aches etc.

it would very likely help with any withdrawals you may experience.

used sparingly it does not cause addiction or other negative symptoms.

May I ask what MG treatments cause…[Read more]

It certainly is the double edge sword.

I am on 13.5-15 mg/day.

i also experience the bleeding and bruising as well as inflammation and broken bleed vessels in my eyes. Any Jen else experience that?

I gradually went up on the prednisone and when the side effects began I slowed it down rather than continuing to the 20 mg the neuro was looking to…[Read more]

Hi All,

I was diagnosed 10/2020 by a neurologist after 8-10 years of graduating symptoms which began with droopy eye, double blurred vision, shortness of breath, fatigue, upper body weakness which fatigues out with usage. I was dx’d seronegative MG.I had spent a good deal of the 5 years prior dysfunctional and in bed a lot. Showering, drying h…[Read more]

I was given gabapentin years ago before MG dx and I had severe pain in rib/lung area and difficulty breathing.
It was given for chronic back pain.