A couple of days since the Rituxan infusion and I can say I'm feeling a significant difference (symptom severity down probably 20-30%) due to the drug. Sleep is slowly improving: time to fall asleep decreasing, number of times waking middle of night decreasing.
I read both of your posts together, so I know this didn't last (which is a bummer) but it is so interesting to have such an immediate improvement and then have it not last. I am curious about the mechanism of this (b/c my improvement was much slower but then did last). Although my MCAS remission was from IVIG alone, before I ever started the Rituximab.
Started eating foods other than white rice and white chicken again. Diarrhea after a few bites of food has stopped (it was even happening with my safe foods).
This was exactly what I experienced with MCAS reactions (prior to IVIG). In addition to the H1 component of the reactions to food (throat swollen/narrowing, phlegm, head and ears stuffed up, chest tightness and tachycardia, facial flushing/hot, etc), I would also have the H2 reactions with sharp stomach pain, nausea, and diarrhea within the first few bites of food.
Heart rate from consistently 130+ decreased to a high of low-100s today.
Are your HR reactions (in the 130+) to food, are they postural when you stand/walk, or are they all the time (even laying down without eating any food)?
Spoke too soon. Woke up today feeling more reactive (intestinal cramping, diarrhea, angiodema, tachycardia, peripheral neuropathy) . Back to white rice and white chicken.
Which foods did you try to add back in? Back when I could only eat a few foods, I also did well with white rice and chicken. The other two foods that were safe for me were lamb and sweet potatoes (prepared with only olive oil and salt and nothing else at that time).
On day 5 of my methylprednisolone cycle, going to cycle to the next corticosteroid tomorrow and see if things change.
I hope that the steroids work again for you. I am still in the process of tapering off Cortef. It has taken me over six months to taper from 15 mg/day to 8.75 mg/day and am now in the middle of cutting it to 7.5 mg/day. This entire taper is going to take over a year but my Endo did not believe that I'd ever be able to come off Cortef and now he believes that I can. It just had to be a VERY slow taper to not trigger any allergic reactions and also b/c I have secondary adrenal insufficiency from the 3.5 years on Cortef so we have to do bloodwork every few months to make sure I am producing enough of the hormones on my own (which so far I am).