Hi - I'm Kay and I have indolent systemic mastocytosis.
I have just been phoning round pharmacies (without success), looking for Ketotifen 1mg tablets as there seem to be supply problems yet again. I've lost track of how many time this has happened and each time I eat into the small stock I had somehow managed to accumulate at some point in the past.
Does anyone have any information on how long the current shortage is likely to last?
This is why I get a private prescription and keep some back. I got 3 months extra supply doing this. I went via Dr Tina Peers but any functional medical doctor could help you here. I felt the expense was worth it.
Hi Kay, I'll check in with the company to see what's happening. I don't think a private prescription would have any better luck than an NHS one since they're using the same suppliers. Sorry it's happening yet again! Very best, Jess
Ok, I've had a chat with Alloga, who supply it, and it is in stock (and has been since March) with no issues about supply. If your pharmacy can't get it from their usual wholesalers, Alloga says they should call Alloga directly and order it. They can then be invoiced by their usual supplier (which apparently is important to pharmacies as they don't like to set up a new account with Alloga). The PIP Code for the tablets is USP0697. (Anyone looking for the elixir needs the code US0832).
Actually private prescriptions do and my private doctor wrote to my NHS doctor to say she had no issue with supply but the NHS did...
Great advice from Jess. I changed to a local independent pharmacy last year when they were willing to do as Jess suggested and got it direct from Alloga with invoicing going to one of their usual suppliers. I asked my GP to increase my prescription to twice per day 12 hours apart to see if it would make a difference which they were willing to do after some discussion and research. There was a bit of benefit but not enough to justify taking 2 per day. I'm back to one per day but have left my prescription at 2 for now to build up a buffer. I had to come off them the last time there was no stock which wasn't much fun. Good luck with getting your tablets.
Might I have Mastocytosis rather than MCAS?
over the counter antihistamines 
Help please. MCAS investigation on the NHS?
Which type of specialist best able to diagnose MCAS? 
MRI with contrast dye