hb8847
Senior Member
- Messages
- 432
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- United Kingdom
So I'm at my wit's end a bit this evening. I'm currently on a plan from my MCAS doctor to take Mast Cell stabilisers in the hope it calms my symptoms, but I've just tried a new one (Ketotifen) and I'm reacting badly to it, and I'm wondering what to do.
The background to this is that initially I started on some H1 and H2 antihistamines (Loratidine and Famotidine) a few months ago; these didn't seem to help much but the doctor was at least encouraged I didn't seem to be reacting badly to them
Then my next appointment rolls around about a fortnight ago and he starts me on Ketotifen (the original plan was to go with Sodium Cromolyn but some of his patients have been struggling to get hold of it in the UK, so he chose Ketotifen). And it hasn't been going great. All my symptoms seem to be exacerbated, and I'm pretty sure it's the Ketotifen because I've been taking it away from my other meds and notice a reaction almost immediately.
To be clear, my MCAS symptoms are mainly ME/CFS related - extreme tiredness, aching joints, cognitive stuff, gastrointestinal issues. And my reactions solely come from things I ingest (ie, food or medications). And I was already practically bedbound but since taking Ketotifen my fatigue seems to have even gone up a notch; I now have some food and I basically spend the rest of the day in a daze and on the brink of passing out, it's not been fun.
I've reached out to the doctor to see what he advises. Obviously I can't continue with the Ketotifen. I'm wondering at what point I start thinking about taking matters into my own hands regarding the stabiliser medications - I know I can source most of them abroad at minimal cost and can try them myself if absolutely necessary. That said, I'm keen to follow the professional advise as much as possible as I reckon that probably gives me the best chance at recovery.
My gut feeling for now is to stick to the doctor and see what he says, and hopefully he'll prescribe me something else to try. His plan so far has been to wait 2 months with each medication as some of them take some time before working, but I'm not sure I'm willing to wait another 2 months just to try another.
If I don't get a satisfactory response maybe I'll try reaching out to some different MCAS doctors to see what they say, although they aren't exactly in abundance over here in the UK.
I'm wondering what peoples' thoughts are on this, particularly about sourcing these meds abroad and giving them a go myself. Does anyone have experience of this? Is there a recognised order about which medications to give a go to?
Also does anyone have similar symptoms to me and what did you do? Which stabiliser medications ended up helping, if any, and to what extent? Did your doctor follow a similar schedule to mine?
Thanks
The background to this is that initially I started on some H1 and H2 antihistamines (Loratidine and Famotidine) a few months ago; these didn't seem to help much but the doctor was at least encouraged I didn't seem to be reacting badly to them
Then my next appointment rolls around about a fortnight ago and he starts me on Ketotifen (the original plan was to go with Sodium Cromolyn but some of his patients have been struggling to get hold of it in the UK, so he chose Ketotifen). And it hasn't been going great. All my symptoms seem to be exacerbated, and I'm pretty sure it's the Ketotifen because I've been taking it away from my other meds and notice a reaction almost immediately.
To be clear, my MCAS symptoms are mainly ME/CFS related - extreme tiredness, aching joints, cognitive stuff, gastrointestinal issues. And my reactions solely come from things I ingest (ie, food or medications). And I was already practically bedbound but since taking Ketotifen my fatigue seems to have even gone up a notch; I now have some food and I basically spend the rest of the day in a daze and on the brink of passing out, it's not been fun.
I've reached out to the doctor to see what he advises. Obviously I can't continue with the Ketotifen. I'm wondering at what point I start thinking about taking matters into my own hands regarding the stabiliser medications - I know I can source most of them abroad at minimal cost and can try them myself if absolutely necessary. That said, I'm keen to follow the professional advise as much as possible as I reckon that probably gives me the best chance at recovery.
My gut feeling for now is to stick to the doctor and see what he says, and hopefully he'll prescribe me something else to try. His plan so far has been to wait 2 months with each medication as some of them take some time before working, but I'm not sure I'm willing to wait another 2 months just to try another.
If I don't get a satisfactory response maybe I'll try reaching out to some different MCAS doctors to see what they say, although they aren't exactly in abundance over here in the UK.
I'm wondering what peoples' thoughts are on this, particularly about sourcing these meds abroad and giving them a go myself. Does anyone have experience of this? Is there a recognised order about which medications to give a go to?
Also does anyone have similar symptoms to me and what did you do? Which stabiliser medications ended up helping, if any, and to what extent? Did your doctor follow a similar schedule to mine?
Thanks
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