(no subject)

[jeshyr]

Doing pretty good.

Things have settled down into "flatmate away" mode and I feel more secure and everything is running more smoothly. It's harder to cope without the additional support - I get less energy to do things I want to do and more of it goes into necessary stuff - but I can cope.


I'm feeling very very very cautiously optimistic that the new Xolair medication is helping. It's meant to stop mast cell attacks from happening but it can take up to 4 months to kick in fully. It's been just over a month but *touch wood* my mast-cell related symptoms (hay fever, flushing, feeling hot, diarrhoea, acid reflux, itching everywhere) are significantly better AND my antihistamine use is significantly down.

The most unexpected thing that I think is related to the Xolair is that my migraines are also significantly reduced - I had no clue that my migraines might be mast-cell-related, so that was a huge surprise! And since my insomnia was basically caused by a combination of mast cell attacks and migraines at night, I am sleeping a lot more.

I feel like I should put a disclaimer in here that my symptoms do all go up and down a lot so it MIGHT be just that a really exceptionally good patch has randomly coincided with the Xolair. The only way to know is to wait and see if it stays good over months and months, so keep your fingers crossed.

I have also been slowly reducing prednisolone - I am down to 7.5mg now which is meant to be around the same amount one's body produces naturally ("physiological dose"). That makes it harder to reduce more because it relies on my body kicking in and producing it again, so each 0.25mg reduction is causing a ton more fatigue and temporary depression/brainfog/flu-symptoms/blah-ness. Fingers crossed also that my body figures out it's meant to be producing its own cortisone and gets on the job!


I've been christmas-decorating the house slowly, and getting people to do tons of odd jobs and other bits and pieces that have been on my "to do" list. Having the house the way I want it is an especially big deal when I spend all of my time here!

That's all I can think of for now ... Love you all!
r

Comments

[acelightning]

i had no idea how many things are related to mast cells; i do hope the new drug will have an increasing effect over time! and is there any way to stimulate the adrenal cortex to produce the hormones it's supposed to?

love you too, dear penguin!

[jeshyr]

MANY things are related to mast cells! Degranulating mast cells release over two hundred chemicals, so it's not surprising really.

I am dubious about anything stimulating adrenals except for low cortisol level, scientifically. There is an entire branch of unscientific "adrenal fatigue" stuff which bears no relation to reality but makes it very hard to find good information because if you look up adrenal stimulating stuff or similar you end up in an entire swamp of alt.med crap :(

[acelightning]

reading about mast cells gave me an attack of "sophomore's syndrome" (that's when a person thinks they have whatever condition they happen to be reading about, because at least one of the symptoms more or less matches something they experience). some of it is "sophomore's syndrome by proxy", because a lot of what i see there matches my daughter-in-law's medical problems. the pseudo-medical crap, alas, has a grain of truth in it, because chronic stress does stimulate the body to produce cortisol, until the adrenal glands get so overstimulated that they can't produce enough cortisol, and that does lead to all sorts of unpleasantnesses. but blaming every ailment known to science on this phenomenon is no more sensible than blaming it all on Satan :-)

[ephemera]

*fingers crossed* this is a thing that helps that continues to help

[dadi]

Crossing every possible and available finger and cat paw here that things might continue on this road! It makes me so happy to know you are a bit better *hugs*

[jeshyr]

*huggles* Thank you :)