Do You Have MuSK or LRP4 Antibodies?
Do you have MuSK or LRP4 antibodies?
"Most people with MG have problems with acetylcholine receptors (AChR). However, other antibodies may cause MG, such as muscle-specific kinase (MuSK) and low-density lipoprotein receptor-related protein 4 (LRP4)" https://myasthenia-gravis.com/causes. "Around 8 out of 10 people with MG will have AChR antibodies in their blood. Only 1 out of 10 will have the MuSK antibodies, and even fewer will have LRP4 antibodies" https://myasthenia-gravis.com/blood-tests.
How long did it take for these antibodies to be tested in your blood work after you first started experiencing MG symptoms?
- Jodi, Team Member
So for you ,Jodi, it took a year before you saw results? I had 5 infusions of IVIG and am on cellcept and mestinon for 2 months now. This was after being admitted to the hospital and having even more thorough testing done to rule out other things. My blood work tested positive for musk antibodies so now I had my first infusion of rituxin last week and scheduled for the second one next week. I see no improvement unless I do absolutely nothing except take care of myself. It's becoming very hard to stay upbeat and live in hopes that I will feel better any time soon. Am I just being too impatient?
I've got the musk antibodies. Once I started experiencing double vision and difficulty swallowing the doctors started testing me for MG right away, but it took almost a month just to get the results of the musk antibodies test. I'm only 24, and they mentioned my age was a significant factor in how quickly they decided it was probably MG.
Still waiting for treatment unfortunately. Turns out I wasn't up to date on a vaccine I would have sworn I had gotten, so I've got to wait a couple months before my neurologist is going to start me on retuxin (I think that's how it's spelled haha) while I rectify that
How about yourself?Can you try mestinon or a small dose of steroids while you wait to start Rituximab, brand name Rituxan? https://myasthenia-gravis.com/living/rituximab. Being positive for MuSK antibodies, this is the best treatment to try first. You are under the care of a knowledgeable doctor 😀 I am AChR positive and started with mestinon, prednisone, CellCept, and a 5-day round of IVIG. The mestinon and prednisone were game-changing for the first year while I waited for the immunosuppressant to kick in. However, I wish I had been started on a smaller prednisone dose or waited to see if I did fine without it first because of the unwanted side effects.
IVIG could also be something for you to consider, and PLEX, if your symptoms are uncontrolled while waiting to start Rituxan, https://myasthenia-gravis.com/plasma-exchange-ivig.
- Jodi, Team Member
