Some people with mast cell diseases are prescribed a medication called ketotifen, which is an H1 antihistamine and mast cell stabiliser. It can sometimes be a challenge to obtain. On this page we try to keep patients, pharmacists and doctors up to date with the latest information on how to obtain ketotifen.
Update as of June 30, 2020
We are very pleased to report that the Department of Health and Social Care have responded to our request for help on ketotifen supplies, and have agreed with AlfaSigma, the licensed producer of ketotifen for the UK, to begin supplying the UK again. The tablets are now available and are, for now, in good supply. These are distributed by Alloga. The PIP code your pharmacist needs so Alloga can identify the product is USP3441.
Tips: Any pharmacy can order directly from Alloga, but not all will have an existing account, and they may have some financial and practical disincentives to order directly from Alloga. The wholesalers pharmacies deal with more often (Alliance, AAH, Phoenix, for example) may not yet have purchased ketotifen from Alloga, so you may need to press your pharmacist to do the extra work to get you the tablets.
If your pharmacist has trouble finding a listing for ketotifen, ask about zaditen (the name brand), though Alloga now has the product listed under both names so this should no longer be a barrier.
AlfaSigma provided a small stock of elixir in early June, which has now all been sold on from Alloga and we expect that it has all been purchased. We do not yet have news as to when further supply will be available. Please do reach out to the importers (Mawdsley’s, Waymade PLC, Alium Medical, and Target Healthcare) to see if any of them can obtain elixir. Some patients have had help in obtaining ketotifen (though not particularly the elixir) via a pharmacy called Vicar’s Cross in Chester, which has experience dealing with importing companies, and which can process these transactions (NHS or private) by post. We are not affiliated with this pharmacy but we can reporting that some patients have had some success.
Update as of February 5, 2020
Several patients have been successful in obtaining the ketotifen capsules manufactured by Hexal. Some have obtained them by having their pharmacy directly contact Target Healthcare to purchase. We heard today that Alliance, the major supplier owned by Boots, is purchasing ketotifen capsules from Target. Patients have had success with both NHS and private prescriptions.
Tips from successful patients:
- Ask for a handwritten prescription for ketotifen capsules. (Only tablets and liquid are in the computerised system, so a prescription for capsules must be handwritten.)
- As the packs are 100 capsules, ask for a prescription for 100 to make the purchase easier for the pharmacy. (One patient reported a price of £130 for 100 pills. Another was quoted £110 for 100.)
Alium Medical SPC has told the Department of Health and Social Welfare that they can obtain Zaditen branded liquid ketotifen. If you are looking for liquid, please have your pharmacist contact Alium. And please let us know if you are successful in obtaining it.
Update as of December 18, 2019
We have learned that a patient was successful in getting unlicensed ketotifen via Target Healthcare. This was ordered from the patient’s pharmacy, with permission given by the prescribing GP for the unlicensed product. The ketotifen capsules were manufactured by Hexal, a German company.
Update as of December 4, 2019
Ketotifen Tablets (1mg) may be available through four companies that have permission to import unlicensed medications into the UK. Those companies are Mawdsley’s, Waymade PLC, Alium Medical, and Target Healthcare. Your pharmacist or hospital can contact those companies directly to find out which products they can secure. As soon as we have more information about the exact products each can import, we will share that here. Some of these companies may list it under the name Zaditen, so be sure the pharmacist asks for both. We have been in contact with all four of these companies and all have said that it is possible to obtain the tablets.
We are relying on “unlicensed” versions of ketotifen because the regular supplier of ketotifen to the UK does not have any product. The unlicensed versions are made in the EU under EU standards, but they have not gone through the UK licensing process. We will let you know if we hear that the regular supplier is again able to supply ketotifen tablets.
Ketotifen Elixir (liquid) is currently available, with supply expected to be sufficient to February 2020. At that time we may be also looking to the companies that import unlicensed versions from elsewhere in the EU, as we have with the tablets. At present the regular supplier is not making more ketotifen elixir to sell in the UK.
Please note that ketotifen has recently been designated a “special” medication, which means that it must be ordered specially for you/your child and there may be new hoops to jump through to get the pharmacy to provide it to you. We have been told that there is still supply available at Alloga, who distributes it. All we can recommend is persistence until you get it.
Update as of August 8, 2019
Ketotifen Tablets are currently UNavailable. Though there may still be stock left from earlier supplies, no new tablets are being imported at this time. It is worth ringing a range of pharmacies (chains and independent) to see if you can find supplies now, but at some stage that supply will be depleted. We do not have an update at this time as to how long the tablets will be unavailable.
The supplier has suggested that patients discuss with their doctors whether trying the liquid (details below) is a good alternative. Please discuss with the prescribing doctor how to try the new formulation. We advise anyone making such a substitution to do so with slowly and cautiously since people with mast cell diseases can react to the inactive ingredients in medications.
This problem has been reported to the UK authorities.
Ketotifen Elixir (liquid) is currently available. Please see below for the codes for your pharmacist if you are having trouble getting it.
Update as of February 12, 2019
Ketotifen Elixir (liquid) is currently available in strawberry flavour. There are new identification numbers for the liquid due to the recent switch from the banana flavoured product. If you are having trouble obtaining it, please provide your pharmacist with the information in the table below so that it can be ordered correctly. Please email us at email@example.com if you have provided these updated numbers and are still unable to obtain the product.
Ketotifen Tablets are currently available. Should your pharmacist have trouble obtaining them please provide your pharmacist with the information in the table below so that the tablets can be ordered correctly. Please email us at firstname.lastname@example.org if you have provided these updated numbers and are still unable to obtain the product.