MCAS & GA: The Future Is Looking Pretty Grim

I have somehow been blessed (ahem) with two rare diseases; MCAS and granuloma annulare, an inflammatory skin disease that just so happens to be mediated by tumor necrosis factor.

From Patient.info:

It (granuloma annulare) is thought to be due to a delayed hypersensitivity reaction to some part of the dermis with inflammation mediated by tumour necrosis factor alpha (TNF alpha)

Mast cells, when they degranulate, can release tumor necrosis factor (TNF):

Mast cell secretory granules contain preformed mediators that are rapidly (within seconds to minutes) released into the extracellular environment upon cell stimulation. These mediators include histamine, neutral proteases, proteoglycans, and some cytokines, such as TNF-alpha (TNF-α).

So it seems to me that the release of TNF-a in my body is causing granuloma annulare skin eruptions. And it’s getting worse.

And I’m getting desperate!

Call me vain, but who would want this? It causes these ring shaped rashes that pop up all over me:

At first I only had one at a time but now I have several on both (!) of my upper thighs and a new one just erupted on my inner upper arm. They grow for months and slowly break up into their own circles and spread, sort of like leprosy:

I snapped that a few minutes ago. If you look closely you can see the same little brown mole in each picture and that shows where the original one used to be. It has now broken off in three directions to form new rings.

I recently learned GA disease also causes these “super concentrated hive thingies” as I fondly refer to them:

Those come up and itch like mad and fade within a few days and sometimes the rings itch, too.

My son who has been dx’d with MCAS also has a form of granuloma annulare that gives him itchy bumps on his hands which also flare when his mast cells are flared and disappear completely when he isn’t sick.

So for us this GA rash is a gauge of what’s happening at a (mast) cellular level, it seems, and what’s happening isn’t good. For now I can easily cover the spots with my clothing but in time it will probably be on my hands, face and lower legs/feet (yikes!) at the rate it’s heading. I’m trying to psychologically prepare myself for it but it’s not easy to imagine that as my new reality.

Honestly, how can anyone mentally prepare for that?!

The fact that mine is getting worse and not better also leaves me to conclude that my mast cell disease itself is progressing, too, despite the medicines masking and even preventing some of my symptoms. .

I really do think underneath it all I am gradually declining and it’s hard not the be afraid or anxious. The problem is, being afraid or anxious triggers degranulation which feeds the granuloma rash and my health deteriorates more, which causes more fear and anxiety, which…

So, like so many others, I’m trapped on this crazy mast cell roller coaster ride with no end in sight. At least not a happy end(ing).

🙁

 

 

Won't you please share?Share on FacebookShare on Google+Tweet about this on TwitterPin on PinterestShare on StumbleUponEmail this to someonePrint this page

One Reply to “MCAS & GA: The Future Is Looking Pretty Grim”

Comments are closed.