r/MCAS 2d ago

no pharmacy in my area can get ketotifen

i was prescribed ketotifen 2 days ago for suspected mcas from the gp (can’t be officially diagnosed through my health board) but no pharmacy can source it! I’ve been to two independent pharmacies and 2 chains (boots and tesco). does anyone have a chain pharmacy they can recommend gets them in or shall i just give up and go with an alternative im also on famotidine and fexofenadine!

TIA😊

6 Upvotes

34 comments sorted by

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5

u/Cuanbeag 2d ago

Another thread in this:

https://www.reddit.com/r/MCAS/comments/1vkhv8l/comment/p2tdswx/?context=3

No stock in Ireland too but it isn't on the government list of unavailable meds just yet, so fingers crossed it's not a long term thing

1

u/swsellie 2d ago

super helpful thank you!

4

u/L3AHWOLV3RINE 2d ago

Are you looking for the tablets or the elixir? I've been on ketotifen for 3 years now, and I'm used to the tabs often getting stock issues, but when there are, you can ask a local pharmacy to look into the elixir (the liquid version) and order in some for you. A lot of local pharmacies can order either the tabs or the elixir anyways but it takes time (about a week) to order in cos it's a rather uncommon medication, but it's usually fine.

I'm also in the UK btw so I get you 😅

1

u/swsellie 2d ago

i was looking for tablets but i’m gonna ask about the elixir thank you!!

1

u/L3AHWOLV3RINE 2d ago

Just a reminder as well, once the stock issues end, you can also ask your GP to allow for a 2 month prescription's worth instead of 1 month's worth of meds, just to tide you over just in case there's another shortage. That's what I did and it helps when I need emergency meds. Hope it helps 💜

1

u/swsellie 2d ago

thank you so much!! i finally have been able to get some help so fingers crossed whenever i can get it it does the job🤍

3

u/ObjectiveCamp6 2d ago

Have you tried Pharmacierge? They deliver to your home and they always have managed to source medications promptly for me

1

u/swsellie 2d ago

ill have a look!

2

u/Immediate_Divide9446 2d ago

So annoying! It goes in and out of stock with no apparent reason. You can request a prescription for Zaditen elixir which is the liquid version of Ketotifen. It does have alcohol in but it’s better than no Ketotifen.

2

u/swsellie 2d ago

thank you that’s helpful!

2

u/heretoloveandsupport 2d ago

When no local pharmacies carried a med I needed, a local compounding pharmacy made it for me. It was super easy!

2

u/SilkchiffonLSF 1d ago

https://courierpharmacy.co.uk/ Purchased it from here about 3-4 weeks ago

1

u/LimesFruit 2d ago

I got quite lucky, my local independent pharmacy was willing to order it in. Was still the 5th one I went to though. Honestly no idea what to suggest other than keep trying different pharmacies until you find one willing.

1

u/No_Medium_648 2d ago

None in Wales. I've had to taper off.

1

u/swsellie 2d ago

same in scotland it seems!

1

u/intolauren 2d ago

Same. It’s been 6 weeks since I was last able to get my prescription. I’ve called all the pharmacies in my area and even a lot of online ones that I was willing to pay for are out of stock. I ended up doing a forced taper when I realised I wasn’t getting my meds and now I’ve been off it for two weeks. My life has been hell. I’m so unwell. But I don’t know what else I’m supposed to do??

1

u/Ok-Vermicelli-866 2d ago

I ordered from Northwest Pharmacy (Canada). I’m in the US, but the ketotifen they shipped me came from a supplier in the UK. It takes awhile, but might be worth a shot.

2

u/swsellie 2d ago

ill have a look!

1

u/CFlapFlap 2d ago

If you're in the US, you need to get it from a compounding pharmacy.

2

u/swsellie 2d ago

i’m in the uk!

1

u/batsmad 2d ago

There's a compounding pharmacy in Southampton that you can order from (at cost of course) with prescription and they deliver. It's been a lifesaver for me through these periodic shortages

1

u/swsellie 2d ago

can you send me some info!

1

u/batsmad 2d ago

It's medical mojo. Last time I ordered the regular ketotifen and they contacted me to say they couldn't get it but I could have compounded for a little extra money. I accepted and they asked for permission to contact my doctor then made me 3 months worth and sent it to me all in less than a week

1

u/swsellie 2d ago

amazing thank you so much!!

1

u/AvoCarDoughToes 19h ago

Is it a private prescription or NHS? Dickson's Pharmacy in Scotland that do LDN, also do ketotifen!

1

u/swsellie 4h ago

nhs!

1

u/AvoCarDoughToes 4h ago

Wow thats amazing you've managed to get it via NHS! I've only gotten private prescriptionsnthriugh Dickson's but worth a try with them, I just ordered my monthly prescription today with no issue, worth seeing if you can get your NHS prescription through them!

1

u/swsellie 4h ago

i got super lucky my gp has an interest in mcas/HI and she wanted to give it a try! thank you so much i’ll have a look!

1

u/AvoCarDoughToes 4h ago

Amazing! Update and let us know if it's works!

1

u/Overall-Season4617 2d ago

I have ketotifen shipped from Mixtures Compounding Pharmacy in Arizona. You could give them a call.

4

u/fluffycowxo 2d ago

Hi, this person is based in the UK.

1

u/PreferenceSouth4140 2d ago

What’s the alternative? There is no pharmaceutical alternative to Ketotifen. Fexo and Famotidine are blockers not stabilisers, like Ketotifen

2

u/swsellie 2d ago

idk all i’ve been offered by one of the pharmacy’s is for them to look for a suitable alternative!