I don't know how relevant it is to take cortisone with MCAS though...
I don't know how relevant it is to take cortisone with MCAS though...
It is common secound line treatment to give for short time high dose Cortisone to keep MCAS symptoms at bay if the 1st-line treatments failure (1st line = H1/H2 anthistaminika, mastcell stabilisators, Leukotrinie inhibitors, mastcell damping Benzo)
What has lead to your significant improvement?
I run a full ATP Regime (Testosterone, Creatinmalate, ß-Alanine, HMB, L-Citrulline, MSP, EAAs) + Inosine (*)
(*works for me for whatever so reasons as PEM buster).
The other thing I was doing to float my body with carbs, proteine, micro nutritions and so on (I have "leaky gut/malabsorbation" because off MCAS, so I have to take vitamin/mineral pills to keep proper levels)
Certainly doing all this is pretty worthless without caring about the immune system problems, I am convinced HSV1 (high HSV titer) is one trigger in my case and there is some evidence (Pridgen FM trial), so I was undergoing antiviral treatments (Valtrex + high Dose L-Lysine)
Also Candida was a big problem in my case and was getting ridd off it with Nystadine.
Against the bladder problems, I take D-Manose if needed.
Not all, but most off my immunological problems I got fixed with special formulated Quercetin, Curcumin ánd Cholin/inositol (some off the Vit/minerals may also helped somewhat)
All those stuff was carefully picked depending on my bloodwork and yes, it reduced exactly the abnormal increased Interleucine/cytokine like I hoped and shifts my immune system from Th2 mode back to "normal" mode.
The CNS part got damped if necessary with a mastcell damping benzo (it is part off MCAS treatment)
Another importand part to get better sleep and I also learned auto-suggestion to keep me mentally stable (just with these heart problems I cant take any benefits out off it
)
All these helped me to being able to do a little bit - I would call it "gymnastic" (with resistance bands, foam rollings, trigger point balls & so on) - to fix my muscular dysbalances first -> after doing so I was step by step carefully going back to my old sport (weight lifting), but I wasnt doing it clueless - I analyse each training with a software and track each single thing I do, this helps me to optimize things and to figure out if anything worsens my condition and/or led to unwanted PEM. Call it a special form off "diary" or so.
Since I was able to do a little bit sports, it further fixed some years long problems and significantly reduced the chronic muscle pain. (I dont need pain killers anymore)
I had some problems with cardio training (primary because off burning legs), but was also able with the time to get this going on.
So it wasnt at last 1 drug or 1 treatment, the combination off all these (many things) maked the turn.
It was no "magic pill" that helped "overnight", it was a progress off learning + understanding whats going wrong with my body over years.
What I was doing is at last somewhat similar like the S.H.I.N.E. protocoll from Dr. Teitelbaum, just in a little bit more agressive/experimental way. (S.H.I.N.E =
Sleep,
Hormones,
Immunesystem,
Nutritions,
Exercise)
I dont take Meldonium that long, it was just 1 more step to get back to a "somewhat" normal life.
I am convinced that I somedays fully beat my CFS, but I know that there is no cure for MCAS & this SOD2 Polimorphismn which impaired my ATP synthesis --> so I will never have a 100% normall life, but for sure a better life then years ago where I was beddridden.
I take Meldonium @low dose and would advice to do so,
since it seems few ppl. had bad experience with high dose regime + crashed .
