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Does anyone else have snMG and ITP? What treatment has helped you?

A MGteam Member asked a question 💭
Amsterdam, NL

2025 diagnosed with snMG. Double zero. 2026. Diagnosed with ITP. Apparently once you have one autoimmune disease, easy to get another one. Lucky me. Still not in the right treatment. Now looking at other options. Quality of life is basically getting through the day. Age 54!! Female. Netherlands.

July 28
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Reactions
A MGteam Member

Yes I have all my appts in my phone calendar plus my husbands appts too. Plus alarms set in my phone for my meds otherwise I’ll forget. I also have notes in my calendar by day how I’m doing. It’s becoming very long now bc I have notes from when my MG journey started Oct 2025.

August 2
A MGteam Member

BetsyJo-I hear you! It is hard enough just remembering daily norm stuff, without adding 30,000 doctor visits into the mix. I have my phone with me all of the time and note Everything in Calendar. Setting alarms to remind me 5 days out, 2 days out, day before, and day of with enough time to get there, has been a lifesaver for me. Since the brain holds onto information differently when actual pen and paper are used, I also write everything I need to do and want to do in a notebook before going to bed. This has helped me stay semi on track. Best wishes!

August 1
A MGteam Member

I understand your frustration. I have Rheumatoid arthritis and was diagnosed last month. I can't keep up with all the doctors visits and testing. My problem is I can't remember everything, my husband needs to drive me. He gets upset because I can't remember what office I need to go to. Hang in there, hopefully they will find an answer?

July 29
MGteam

What a journey you've been on — diagnosed with seronegative MG (snMG) and then another autoimmune condition on top of it. You're right that having one autoimmune condition can make you more susceptible to others. It's genuinely tough, and "getting through the day" at 54 is not where anyone wants to be.

While no MGteam Show Full Answer

What a journey you've been on — diagnosed with seronegative MG (snMG) and then another autoimmune condition on top of it. You're right that having one autoimmune condition can make you more susceptible to others. It's genuinely tough, and "getting through the day" at 54 is not where anyone wants to be.

While no MGteam members have shared experiences combining both conditions in the search results available, there is some helpful context about seronegative MG treatment worth knowing. Being "double zero" (triple seronegative) has historically meant fewer proven treatment options — but that is changing. Here's what's currently relevant:

- Efgartigimod has shown promising results specifically for triple seronegative MG in a recent phase 3 study, improving daily function including speaking, chewing, and swallowing
- Side effects included respiratory infections, headache, and urinary tract infections
- The drug maker is seeking expanded FDA approval to reach more seronegative patients

Treatment for snMG is generally similar to AChR-positive MG but is tailored individually by a neurologist. Given that you have two autoimmune conditions, it's worth asking your specialist about immunosuppressive treatments that could potentially address both. A neurologist experienced in MG is really key here — especially when navigating overlapping conditions.

Bringing a list of current treatments and what hasn't worked to your next appointment can help move the conversation forward faster. You deserve better than just getting through the day. 💙

July 28
A MGteam Member

Writing a list of activities I need to address helps immensely. The list goes on and on sometimes . LOL!
Doc appointment are many and it is a challenge to keep up and not be a NO show.
Blessings !

August 19

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