UK doctors willing to treat with autoimmune meds?

SpinachHands

SpinachHands

Senior Member
Messages
196
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?
 
SpinachHands

SpinachHands

Senior Member
Messages
196
Location
United Kingdom
Treeman said:
Hi, I assume you have a diagnosis of MCAS. If so on the NHS web site the following highlights the treatments available. https://www.nhs.uk/conditions/mastocytosis/treatment/

These treatments will come from a specialist, are you seeing one? If not maybe a visit to A&E might be an option? Good luck.
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These treatments will only be done for mastocytosis by the NHS unfortunately, they don't treat MCAS on the NHS since there's no NICE guidelines for it, bafflingly. My partner actually was in hospital recently, because they were malnourished and dehydrated from MCAS reactions to food and water. No doctors were understanding the MCAS and were only concerned with treating the malnourishment/dehydration...which they couldn't do because they weren't treating the MCAS. In the end I had to do all the work, give them a list of MCAS knowledgeable NHS doctors for them to call to consult. Which they didn't really do. In the end we got Dr Shidrawi privately, and my partner's "numbers" stabilised enough that the hospital discharged us.
 
BeeBonnet

BeeBonnet

Messages
8
Having come to Uk from America, hearing all my life people complain about how horrible the US system is for not being free, I am appalled by what I am witnessing and experiencing with the ”free” (NOT free because taxes are sky high to pay for it) NHS. The above account about how the dingbats at the hospital couldnt understand or treat MCAS because there are no NICE guidelines is only one major problem. These are not REAL doctors at all! They can only follow flow charts and if there’s no flow chart, they can’t think on their own! I’m beyond disgusted and frustrated. The NHS is like some 2nd world soviet backwards, limited and restricted way of doing medicine.
 
BeeBonnet

BeeBonnet

Messages
8
@SpinachHands Just wondering if you’ve gotten your coworkers help yet? Was it for siblings who had the same symptoms? Very unusual for two people to have the exact same symptoms. Are they twins?
 
ilivewithcfs

ilivewithcfs

Senior Member
Messages
198
I'm not in the UK, so I can't give you any useful advice. I'm so sorry about your partner's condition. IMO, there's no such thing, as real proper medical care for ME/CFS, otherwise we all would've been healthy by now. All we can really do is throw things at a wall and hope something sticks. But that's just my opinion.
You are a really good caretaker. Your partner is lucky to have you. Please don't forget to care about yourself and, obviously, I wish them speedy recovery.
 
Last edited:
Treeman

Treeman

Senior Member
Messages
875
Location
York, England
BeeBonnet said:
The above account about how the dingbats at the hospital couldnt understand or treat MCAS because there are no NICE guidelines is only one major problem. These are not REAL doctors at all! They can only follow flow charts and if there’s no flow chart, they can’t think on their own!
Click to expand...

There is some truth in this, it’s a system to provide guidance , support and to ensure harm is not done. It falls down though if you’re not on the list.

Additionally, if Drs don’t follow it they could lose their jobs and have their profession taken away, would anyone do this?

There is for people with rare diseases a government policy to help those who have suffered due to medical inequality, it’s the UK Rare Disease Framework and one part of it which requires better access to, care, treatment and drugs. I’m in the process of using it against my consultant and GP for better care and access to drugs.

Here
 
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