Update: Whats going on with me and what I'm doing:
Been away for a while due to marathon studying for 2 major exams that were 3 days all together (day 1 was 8 hours and Day 2 and 3 were 5 hours each) and I didn't want to distract myself with anything. I was literally taking the exam at the very last possible minute, a couple days before graduation ceremony. After the exams were over I just didn't want to think about my MCAS and wanted to put my focus back into what I enjoy, kicking ass in life.
I was starting to believe Rituxan was a mistake (partly b/c an allergist I saw twice kept telling me with great concern that it was a mistake to use it for MCAS, but I shouldn't have let him get to me, I thoroughly researched it out and conceptually the case for it was solid with very good odds of success my main Allergist and Hem-onc wouldn't have agreed to it if it wasn't and they understand my case almost as well as me whereas the other allergist kept misinterpreting and misunderstanding key details), but boy was I wrong. Truly Rituxan is an amazing drug.
I would've never been able to study as I did (10+ hours every day for 2 weeks straight) and take those exams without Rituxan. It has a lot of ups and downs but the past 3 or so weeks were the best I've felt in over 2 years.
Current significant recurring symptoms over past ~3 weeks: physical and mental weakness, liquid diarrhea (happened 3x immediately after eating in the past week on days I neglected to take antihistamines, sometimes painful sometimes not), peripheral neuropathy (damage to my left ulnar nerve and subsequent loss of almost all sensation coupled with shooting pain when the nerve is stretched and loss of most motor control that occured when I was more reactive is now very slowly healing) and low blood pressure (which always coincides with feeling unusually cold and brain fog/fatigue).
With the use of corticosteroids, antihistamines etc, my symptoms are now much more manageable then it ever was in the past and symptoms become minor enough that I can ignore them and continue doing what I'm doing without too much of a break in momentum.
Symptom Improvements:
The most significant difference I've noticed is that drugs/supplements that had stopped working for me in the past are now working at more normal doses. It always felt like my body just wouldn't absorb or metabolize anything I took (ingested and subcutaneously) unless it was in very large amounts. Ex: a month or so ago, I could be taking Zyrtec all day in extremely high doses (I finished a bottle with 365 tabs 10mg in 5 days, I slowly worked up to that dose, dont try at home) and it would barely make a dent in my symptoms and I wouldn't feel any negative drug side effects, but now I can take far less than half of my previous mega-dosage and get great symptom control and taking too much predictably gives me a very distinct massive migraine every time I overdo it. It's really an amazing change and the thing I'm most happy about as this was by far the biggest obstacle in improving my health.
My mind and body still feel weak, so I'm supplementing with DHEA and Agmatine (stimulates luteinizing hormone release) to increase androgen levels. Cachexia is improving, despite not exercising, some muscle is returning to my bony underweight frame. Looking at me now you would never know I used to have an extra 20 lbs of muscle before MCAS and worked out like a beast. In the past if I didn't actively do something about it my androgen levels were very sub-optimal and with long term corticosteroid usage and chronic illness it is very likely pathetically low. However, with these supplements my energy levels have now significantly improved and I can feel some of my old confidence slowly returning. No longer the sweaty corpse of a man bereft of life.
I also went back to my old psychiatrist about a month ago, updated her about my MCAS making me intolerant to drugs being the reason I stopped going to her, and I am now prescribed Adderall once again for ADHD after going without treatment for 2 years. I'm only taking it when I think I really need it, since it decreases appetite and I react to it a little but its nothing that antihistamines can't manage. This was key for getting through the exams. Even with the drastic symptom cut I was still too physically and mentally weak to maintain focus. I started the DHEA and Agmatine after the exams and that reduced my need for stimulants. But the fact I can tolerate stimulants at all is a huge thing. Coffee was the first thing I became allergic when I was teen and Adderall the second when I was around 24.
Major Life Changes and Improvements:
I keep expecting to wake up feeling worse, but for the past month every day was a slight improvement. (As a result I haven't been able to do the blood tests I mentioned in a previous post.) With this improved mental clarity from sups previously mentioned, I was able to write a new and improved resume that's been getting great compliments, having a great picture of yourself on your resume also helps a lot. Did about 12 phone interviews in the past 2 days (not tired at all!) and was invited for an in-person interview for almost all of them. One business-owner liked me so much that we casually chatted like old buddies for 1.5 hours in the phone interview and at the end he started selling me hard on being a co-owner and his partner in 6 or so months after I adjust to the real world work. A stark contrast to when I applied for jobs 2 months ago. I even turned an outright rejection from 2 months ago into an in-person interview invite by simply sending them my new resume. Amazing how everything just turns out for the best with minimal effort when you have good positive energy going on, it's like my life is slowly rewinding back to my pre-MCAS days. I'm even dating again and I really suck at it now. I used to be really good, guy and girl buddies would always come to me first when they had dating/relationship problems) but its all good thats part of the fun improving yourself and reaping the results.
Non-medical indoor lighting fixtures have gone from inciting harsh MCAS reactions to mild ones now, so my next big challenge will be to test my UV/sunlight sensitivity by taking a walk in the middle of the day. Lets see if I can become a daywalker again. Plan to do this on a day where I have nothing going on just in case it wrecks my body.
Perspective and Outcomes:
I was growing very doubtful about Rituxan and the constant up and down, but it is truly amazing. I really hope this lasts until my next infusion at the end of next month, also cant wait to see how much more I improve after the next one.
I honestly had very little expectation that I would actually ever get better, Im not there yet but real progress has finally been made. I believed I was going to prematurely expire, likely before age 30, either through starvation (feeding tube wouldn't help b/c I'd react to that too) or sleep deprivation or through heart failure due to histamine and the consequential epinephrine dump over-stressing my heart combined with a family history of heart problems. But I persisted with the vague hope that I can figure it out b/c since the age of 20 there hasn't been a challenge I couldn't eventually overcome through sheer will and dedicated study and I don't set modest goals. Persisting was all I could do and I'm glad I did. The option to just end it myself instead of letting the disease do it was plan Z, after I've tried everything without success.
Speculation of MCAS Pathophysiology and Rituxan:
I know there will be more downs and more ups but the overall trend with Rituxan is now clear to me after being on it for 6 months - it will very likely continue to improve my symptoms with each infusion. What I believe is happening is by cutting the production of IgEs via B cell depletion, the amount of IgE pumped out from plasma cells will decrease overtime since plasma cell aren't being replenished. With that decrease, overall body inflammation decreases and that makes the Complement System anaphylatoxins downregulate C3a production (which normally goes up as inflammation goes up and it is likely the reason I still develop new intolerances - I was going to prove it with blood work but there's no point in testing unless I am very symptomatic in order to obtain clear indisputable results). As IgE levels continue to drop, C3a activity will correspondingly drop as well resulting in less IgE-mediated and non-IgE mediated mast cell degranulation.
Some real talk and motivation to readers: being a doctor doesn't make someone some special arbitrator of knowledge, like believing they're the only ones that can understand a disease just b/c they went to med school (fyi a lot of what they teach there is pretty dated stuff, thats why a huge chunk of docs are useless). If you have a somewhat working brain of your own, it isn't too difficult to be more knowledgeable in a particular area than a doctor. I did it despite dealing with 3 major health issues (including low testosterone), and IQ-wise I dont think Im anything special. The reason for this is largely because most doctors don't keep up with current research and are complacent as hell, especially the older ones. My main Immunologist definitely isnt one of those kinds and hes relatively young in his 40s. He's got no ego about having to research something he doesn't know and keeping tabs on new research. Just like me, he delves into the nitty gritty pharmacokinetics and biochemistry which was great b/c he did the thinking for me when I couldn't. And even though everything he did only worked temporarily for me it created enough breathing room for me to be able to do my own thinking again, no matter how much of a struggle it was, and ultimately come up with a treatment myself that is now proving to be the most effective drug I've tried.
Take initiative. Nothing is going to happen if you dont make it happen. That is the reality of the world, it can be cruel but it is as it is and you need to accept it and move on. Action Action Action. Always keep trying even if you fail. Momentum is key, if you have it dont stop even if its 3am. Keep forcing yourself to think no matter how you feel. The answers are out there waiting for you, nothing is unsolvable. I literally put everything in my life on hold and put all my effort into this. The internet is amazing, unless you're at death's doorstep you can still google (though I recommend bing since google censors too much random stuff). I figured out all my health problems (MCAS, primary immunodeficiency, and low testosterone which is likely caused by MCAS) and proved my case for Rituxan and wrote a letter (I somehow did an amazing job despite sleep deprivation due to MCAS) and luckily got it at no cost. Take full responsibility and make it happen. Once you accept your role as captain of your own life you'll need a crew. Look for doctors that are young, but not recent graduates, and are genuinely nerdy and get excited thinking about biochemistry. You can tell you found the right one when the doc gets really happy answering your questions about how a drug specifically works. Also bonus points if the doc is genuinely religious.
Closing comments:
Wow I didn't intend to write an essay but thats what happened. I guess I'm a little excited about my progress and wanted share what was happening to me since I've been away for almost a month and I know some of you are trying Rituxan too. I'll be popping in and out of this forum every now and then, but while I'm feeling good I'm going to spend my time pursuing important things I actually enjoy like dating and the game of making money. Medical bills are expensive and I need to develop passive forms of income so I wont be broke if Im forced to take a lot of time off work and since I dont qualify for most disability insurance, Im on my own. That works just fine, I wouldn't want it any other way.
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