Do you have POTS?
Ever run a cell trend test?
I'm getting evaluated for it. I suspect I may have some form of POTS secondary to MCAS.
No I havent done a cell trend test but Im interested in it. I found this website
https://www.celltrend.de/en/pots-cfs-me-crps.html but Im not sure if there would be a point in doing it at the moment since my B cells are shut down and I get IVIG for primary immunodeficiency. I feel like those things may interfere with results. Though since I am still symptomatic then if I have those autoantibodies then the test should be able to pick up on it.
If we look at Fluge and Mella's superceded Phase 2 study no patients showed a response before week 8. Most showed a response by week 20.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898
Obviously this trial had no control arm and the much better designed Phase 3 trial found Rituximab does not work on average for the average patient. If it is going to work for you you will probably know by ~week 25. I'd say that since you've begun you may as well wait a little longer to see.
Interesting so about 6 months to know for sure. Researched some more on autoimmunes and time to response seems similar. Long-lived plasma cells are probably why a long lag is seen from time of drug administration to clinical response. If it's that long of a wait then I'll need to do a combination treatment and find another drug to help with the symptoms. Maybe a proteasome inhibitor or high dose IVIG.
Edit: when you say average pt in the phase 3 trial, what do you mean by average? People in general that go on this drug or for people taking it for ME/CFS?
Hi Blake! I was wondering how you were doing and glad that you posted an update. Can you remind me, were you exclusively trying Ritux for your severe MCAS or was it also for other diagnoses? I can't remember, do you also have POTS or other autoimmunity?
I wasnt doing any updates b/c I felt stuck. Not knowing if Rituxan was working and not being able to get high dose IVIG (though I havent quit trying). Ritux for MCAS, though I may have POTS. I'm seeing a Neurologist next week to get evaluated. But as of now I am not diagnosed with any autoimmune.
If I remember correctly, you were hoping that the Ritux would allow you to come off of the steroids? Have you been able to reduce the steroid doses at all? I was also curious which symptoms were getting worse?
Before I started Rituxan, steroids had just about lost all effectiveness on me but after the infusion it felt like my tolerance to them came back. Over the past 10 weeks my steroids dosages have been climbing up high again. Angioedema, purple extremities, tachycardia, tremors, profuse putrid sweating from all over, heartburn, nausea, diarrhea (some of these symptoms are why my doc and I suspect POTS though I have no issue with standing up and laying down). I also get other more typical allergy symptoms with sinus, eyes, fatigue, migraines. Growing increasingly more sensitive to allergens,
Did you notice if you felt better when your IgE was lower or was there no correlation between the two?
I do. At 280 IgE I felt much better than I did at 380. At 280 I felt moderate fatigue, some nausea and stomach cramping and heart rate in 70s while I was waiting to get my blood drawn. At 380, I had tremors (I had trouble holding my arm still for them to draw the blood), heart rate over 120 and felt massive amounts of adrenaline coursing through veins,
It is so hard to know and I wish I could make a prediction! I wish I knew in my case if my remission from IVIG & Ritux is permanent or temporary? I want to proceed with life as if it is permanent but am so hesitant in many ways in case it is temporary.
Can you remind me, are you also doing IVIG? I cannot remember if you were doing both or just Ritux?
Im doing IVIG, 30g, for primary immunodeficiency.