SpinachHands
Senior Member
- Messages
- 172
- Location
- United Kingdom
I know I've posted a lot of "we need urgent help" posts for various issues, but I have another one!
We think a lot of my partner's recent worsening issues are down to their MCAS being flared up by amantadine, which they ended up just going cold turkey on earlier this week. The problem is the MCAS is already so bad that literally everything is flaring it up more, meaning every day all day, everything they take is making it worse and worse.
For the past two weeks they've only been having three nutrition replacement drinks a day (Fresubin brand, around 1200kcal), just to minimise eating and maximise nutrition but even those are making MCAS worse still. We've increased their sodium cromoglicate so they're on nearly 1000mg over 4 doses a day and it's still barely making a dent. They're already on ketotifen and montelukast too, and haven't tolerated any antihistamines tried. Today they tried an elemental drink instead and it still flared their MCAS. The only plan they can think of is to do a 48hr fast and quiet all supplements and vitamins, only keeping filtered water and the three meds above.
The NHS has been no help, I've tried so many times to get them help but nothing. Their long COVID specialist, Dr Claire Taylor, has essentially said she doesn't know what more to do. The endocrinologist I spoke to a few months ago recommended the Elemental drinks and a probiotic to try and treat their suspected sibo to maybe help MCAS, but both could just flare up MCAS and not fix it, and may not even fix the SIBO. I've been emailing all the MCAS specialists I can find all week but soonest appointment I could get is with one of the doctors from Dr Peers' clinic in a months time. A hospital admission won't help, they'll just try tube feeding which will still flare up their MCAS and solves nothing.
Is there anywhere we can get urgent medical advice for this?
We don't want to try random things without a doctor because everything has a near 100% chance of making their MCAS worse and we can't risk it getting any worse than it is.
Are there any better ideas than my partner starving themselves?
We think a lot of my partner's recent worsening issues are down to their MCAS being flared up by amantadine, which they ended up just going cold turkey on earlier this week. The problem is the MCAS is already so bad that literally everything is flaring it up more, meaning every day all day, everything they take is making it worse and worse.
For the past two weeks they've only been having three nutrition replacement drinks a day (Fresubin brand, around 1200kcal), just to minimise eating and maximise nutrition but even those are making MCAS worse still. We've increased their sodium cromoglicate so they're on nearly 1000mg over 4 doses a day and it's still barely making a dent. They're already on ketotifen and montelukast too, and haven't tolerated any antihistamines tried. Today they tried an elemental drink instead and it still flared their MCAS. The only plan they can think of is to do a 48hr fast and quiet all supplements and vitamins, only keeping filtered water and the three meds above.
The NHS has been no help, I've tried so many times to get them help but nothing. Their long COVID specialist, Dr Claire Taylor, has essentially said she doesn't know what more to do. The endocrinologist I spoke to a few months ago recommended the Elemental drinks and a probiotic to try and treat their suspected sibo to maybe help MCAS, but both could just flare up MCAS and not fix it, and may not even fix the SIBO. I've been emailing all the MCAS specialists I can find all week but soonest appointment I could get is with one of the doctors from Dr Peers' clinic in a months time. A hospital admission won't help, they'll just try tube feeding which will still flare up their MCAS and solves nothing.
Is there anywhere we can get urgent medical advice for this?
We don't want to try random things without a doctor because everything has a near 100% chance of making their MCAS worse and we can't risk it getting any worse than it is.
Are there any better ideas than my partner starving themselves?
