Mast cell med effect on ME symptoms?

[Ravn]

Anyone out there with a dual diagnosis of a mast cell disorder plus ME who has tried mast cell medication? If so, did the mast cell medication also help ME symptoms? Especially PEM?

 

[Snowdrop]

Hi Ravn

There are several threads on MCAS and meds. My understanding is that it's tricky to treat because of the potential for having a bad reaction to any drug used.
you might try researching here:

http://forums.phoenixrising.me/index.php?threads/allergy-mast-cell-treatments.19045/

http://forums.phoenixrising.me/inde...between-histamine-intolerance-and-mcas.47487/

http://forums.phoenixrising.me/inde...rop-form-for-those-with-mcas-allergies.44875/

 

[Ravn]

Thanks Snowdrop. I did have a look at those threads and there's a lot of info there on MCAS and meds, as you say. And it confirms my personal experience that mast cell meds can be helpful for the classic 'allergy-like' mast cell symptoms: in my case my party trick dermatographia has vanished, and flushing after eating is much reduced.

However, so far I've seen no improvement whatsoever in my classic ME symptoms like the PEM. So am wondering if anybody out there has found their PEM improve as a kind of bonus effect of mast cell meds?

 

[ryan31337]

When I have MCAS-like reactions from food I tend to get fatigue with and after the flare event. Its subtly different to PEM and has different physical components. Its hard to tell apart unless you are very strict when experimenting on yourself and can isolate, so for many I would think the two would feel inseparable...

Point being its a big mess of problems and symptoms and if you were to help MCAS with meds your overall experience would definitely improve.

 

[Snowdrop]

Thanks Snowdrop. I did have a look at those threads and there's a lot of info there on MCAS and meds, as you say. And it confirms my personal experience that mast cell meds can be helpful for the classic 'allergy-like' mast cell symptoms: in my case my party trick dermatographia has vanished, and flushing after eating is much reduced.

However, so far I've seen no improvement whatsoever in my classic ME symptoms like the PEM. So am wondering if anybody out there has found their PEM improve as a kind of bonus effect of mast cell meds?

You might want to contact @Gingergrrl as I believe she takes meds for MCAS.