What to do when you can't tolerate any medications?

[Stark1]

@wigglethemouse problem is I don't tolerate the smallest crumbs of medication.

Same here. I was doing better and getting more stable until I got a serious infection and had to take a course of antibiotics. Now my body is reacting to all my meds, including the klonopin, which I can't just stop cold turkey, so am forced to continue taking it for now. Ugh

 

[Grigor]

Is there a way you can get some of those meds compounded. Some folks have a corn and or milk allergy that affects so many medications and so they have to get the medication compounded with ingredients they tolerate. @Learner1 has posted many times about this subject such as in this post
https://forums.phoenixrising.me/threads/b-12-the-hidden-story.142/post-2208053

Have you tried cromolyn sodium? It's a mast cell stabiliser that mainly stays in the GUI tracts. It is a liquid rather than a pill, though very expensive if not covered.

Yes to both but to no avail. I react the same to supplements or food really.

My guess is that it might be due to vagus nerve or microglia hypersensitivity.

https://twitter.com/i/web/status/1214638687348088832

My next stop is vagus nerve stimulation.

 

[Grigor]

Same here. I was doing better and getting more stable until I got a serious infection and had to take a course of antibiotics. Now my body is reacting to all my meds, including the klonopin, which I can't just stop cold turkey, so am forced to continue taking it for now. Ugh

So sorry to hear this....

 

[mrmichaelfreedmen]

Have you tried Famotidine??

 

[sunshine44]

hi @Stark1

thinking of you. how are you these days?

I struggle with almost every med too and am in a mast cell flare trying to get it to settle.

wishing you well. xo

 

[hb8847]

In case this helps anybody -

I was diagnosed with MCAS last December (2020). At that point I literally couldn't tolerate a single food, medication or supplement without reacting and I was very under weight and malnourished.

6 months later I am still in the early days of recovery but one thing that has definitely done something positive is VITAMIN D. It was the first supplement my doctor (an immunologist and MCAS specialist) advised me to take and while its only gotten me from a 2/10 to say a 3 or 4/10 it's at least enabled me to tolerate medications.

Right now he's got me on 2 antihistamines (loratadine and famotidine); these haven't yet had much effect and presumably he'll be trying some other form of medication when I see him next month.

 

[Rufous McKinney]

That includes avoiding people who have chemical washing powder on their clothing

if my bathroom window is open, downstairs is the drier vent. People put all those perfumes and anti static things into their clothes- it comes up into my bedroom

So does the downstairs bar be que and and I have to speak to my neighbor about it: I hate to be a whiner, but those chemicals just come right straight up into my apartment.

The linen closet- three years I've lived here: its still outgassing the perfumes from the prior tenant.