SpinachHands
Senior Member
- Messages
- 189
- Location
- United Kingdom
Things are dire, and I'm looking for some real, proper medical care for my partner. No more supplements, no more limbic retraining, grounding sheets and vagal stimulation. They are seriously ill and we need a proper doctor to seriously treat them. Their MCAS has gotten so bad, they are in a constant state of inflammation. They're starting to react to water again. They've tried 9 different antihistamines and all have not worked or made their MCAS worse. They're already on 1200mg of sodium cromoglicate a day. They're already on 4mg a day ketotifen, which we tried increasing but we're not sure if it actually made things worse, so they went back down again. Tried adding back in some vitamins, but everything just seems to flare things up.
The inflammation in their brain this is causing is making them have screaming breakdowns every day, shouting, throwing things, hitting themselves. I don't know what's causing what at this point- hypermobility, guy motility issues, pots, MCAS, long COVID, dysautonomia. Their immune system is stuck on overdrive, they're in a constant state of inflammation.
Doctor-wise: Dr Claire Taylor prescribed the ketotifen and Cromolyn, she's tried numerous other meds for my partner but at this point says it would be "unethical" for her to prescribe any more meds with how reactive they are, and recommended a functional Dr. We've tried functional stuff, it doesn't make a dent, we're way past gentle small changes making any difference. Dr Bakshi said he couldn't help, Dr Aziz rejected the referral saying he's not an MCAS specialist, Dr Peers was....see my other post about that, Dr Croom said she can't do outside her area/remote. We've spoken to Dr Shidrawi once and he recommended a H1 and H2 antihistamine, which surprise surprise didn't go well. Speaking to him again tomorrow but I don't really know what he can/will do.
I've been looking into an all-round treatment, not just MCAS specific but calming down the immune/inflammation altogether and found things like masitinib, imantinib, cladribine, rituximab, IFN-a, JAK inhibitors like tofacitinib, baricitinib, upadacitinib. We are considering trialling corticosteroids like Prednisone, they didn't react well to a steroid inhaler but worth trying still.
Can anyone advise on where or who in the UK to get this kind of treatment from?
The inflammation in their brain this is causing is making them have screaming breakdowns every day, shouting, throwing things, hitting themselves. I don't know what's causing what at this point- hypermobility, guy motility issues, pots, MCAS, long COVID, dysautonomia. Their immune system is stuck on overdrive, they're in a constant state of inflammation.
Doctor-wise: Dr Claire Taylor prescribed the ketotifen and Cromolyn, she's tried numerous other meds for my partner but at this point says it would be "unethical" for her to prescribe any more meds with how reactive they are, and recommended a functional Dr. We've tried functional stuff, it doesn't make a dent, we're way past gentle small changes making any difference. Dr Bakshi said he couldn't help, Dr Aziz rejected the referral saying he's not an MCAS specialist, Dr Peers was....see my other post about that, Dr Croom said she can't do outside her area/remote. We've spoken to Dr Shidrawi once and he recommended a H1 and H2 antihistamine, which surprise surprise didn't go well. Speaking to him again tomorrow but I don't really know what he can/will do.
I've been looking into an all-round treatment, not just MCAS specific but calming down the immune/inflammation altogether and found things like masitinib, imantinib, cladribine, rituximab, IFN-a, JAK inhibitors like tofacitinib, baricitinib, upadacitinib. We are considering trialling corticosteroids like Prednisone, they didn't react well to a steroid inhaler but worth trying still.
Can anyone advise on where or who in the UK to get this kind of treatment from?
