Nalcom: Hi just had a update for my... - The UK Mastocytos...

The UK Mastocytosis Support Group

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Nalcom

David-Harris profile image
7 Replies

Hi just had a update for my pharmacy in Midhurst that Nalcrom is stil unavailable and they are now saying Mid November before they get any!!! Really hope they will get it in before then

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David-Harris
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7 Replies
floating_ profile image
floating_

Unfortunately this happens a lot!! Hope you're able to manage, speak to whoever is managing your mast cell disease about what to do to manage.

TTBluebells profile image
TTBluebells

Have you tried hive pharmacy ? I got a text last week saying they had some. I’ve not used this service personally yet but hopefully someone on here will be able to confirm it’s legit ?

google.co.uk/amp/s/www.hive...

Text message from hive pharmacy with Nalcrom stock update
David-Harris profile image
David-Harris in reply toTTBluebells

Thanks for the information, will look into it

Jess-UKMasto profile image
Jess-UKMastoPartner

Hi David, I've posted an update from Sanofi about the state of play with Nalcrom on our website that includes a number for the pharmacy to call. There should still be some now, though there is expected to be a shortage a bit later in the year, according to our contact at Sanofi, but I know customer service has told some pharmacies November. I've asked for an update on the update to clarify where we stand. ukmasto.org/update-on-nalcr...

David-Harris profile image
David-Harris in reply toJess-UKMasto

Hi Jess, thank you for the post, I will get my pharmacy to give them a call. Best wishes David

stegzz profile image
stegzz

Hi Jess, thanks for all you do behind the scenes. You are much appreciated. Please I want to know if there is anything the UK Masto Support Group can do to further educate UK GPs about MCAS. Most UK GPs are not sympathetic towards the sufferers of this debilitating disease and it mostly has to do with their lack of knowledge and understanding of it. For example, my GP just informed me this week that they will no longer prescribe me Nalcrom. No reasons were given and no alternative has been offered. Interestingly, the GP knows this is the only medication that has kept from frequenting the A&E since February this year but they still made the decision. If it is a cost saving decision on their part, such GPs should be advised that the several trips by MCAS patients to the A&E to treat recurring anaphylactic reactions will ultimately cost the NHS more than the cost of prescribing mast cell stabilisers. Hopefully, things will change for the better . Thanks once again.

Jess-UKMasto profile image
Jess-UKMastoPartner

Another update on the Nalcrom situation. Nalcrom is indeed out until November, but Somex Pharmaceuticals will be selling a generic version of sodium cromoglycate starting the end of this week (Sept 17) via AAH, Alliance and Phoenix, the three big wholesalers. Ask you pharmacist for this product in place of Nalcrom. (It could require a new prescription depending on how it's written.)

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