[Susann]

I have 11 autoimmune diseases which are all severe and have never been in remission. I also have a rare inherited immune deficiency called CVID -Common Variable Immune deficiency.

I am also on three immune suppressants. So my immune system is shot. I had severe reactions to the second and third vaccines so instead of getting another booster one of my docs suggested EvuShield. I am a doctor as well and had read several papers on EvuShield. It is two monoclonal antibodies and approved by the FDA to be given every six months to immunocompromised patients. I usually don’t tolerate things well but I had no side effects what do ever. The nurse stays for an hour to observe you for cardiac issues. I have high cholesterol diabetes high blood pressure have had one heart attack and have Afib and have a rare form of endocarditis from my lupus. I tolerated it great. No symptoms at all and no cardiac issues

[Susann]

I have 11 autoimmune diseases and a primary immune deficiency

Nothing has helped most of my diseases including Rituxan for 5 years before it was studied in MG or Lupus

I am also seronegative for MG.

I have never had any of my autoimmune diseases controlled or in remission

[Susann]

I had it March 28 bc I have 11 autoimmune diseases am on three immune suppressants and I have an inherited primary immune deficiency called CVID. I hurt and had increased arm weakness with the first Covid shot but with the second and third shots I had severe flu like symptoms and fever to 104.

The evushield is probably the only med I had absolutely no side effects with. I read an article yesterday and they are recommending to be given every six months. I would take it any day over the vaccine boosters

[Susann]

Avoid magnesium. As a doctor I can tell you there is only a paragraph in textbooks about MG. Most non- neurologists don’t know all the meds that can worsen MG. You can print off a list and carry it around with you. When I am hospitalized and my magnesium gets low I speak to the doctor to find out my magnesium level. My neurologist says it is best to keep the level on the low side of normal

[Susann]

As a doctor who also has 11 autoimmune diseases there is no reason it should take a year to wean off steroids. I get IVIg every three weeks and take high dose mestinon I have failed every other treatment. You can actually be on 14 days if 40mg of prednisone without having to wean it. I don’t know what dose you are placed on for flares but you may want a second opinion about taking a year to wean off. It seems overly cautious

[Susann]

I am seronegative which my neurologist said is the hardest to treat. I am a doctor and did research on my own it is the most severe type and hard to treat I’m on high dose mestinon and IVIG for years. I have failed all immune suppressants including four years of Rituxan off label from 2015-2019. I  stage IVb. I’m on oxygen and have a non invasive ventilator and cannot be in the heat or the sun at all.  They are studying more seronegative pts to try to get approval for Vyvgart for seronegatives

[Susann]

I agree, Ken!