Trouble getting full dose

[Wintersbite]

Hi I'm just wondering is anyone else having trouble getting part or all of there epilepsy medication since the fuel and cost of living crisis both hit?

I take Topamax ( Janssen-Cllag) think I've spelt it all right my dose should be 125mg twice a day now I put my repeat in as normal on December 15th I go to my pharmacy on December 23rd as I have not been told my meds are there and I'm going to run out soon of the 25mg I go down and I'm told there out of the 25mgs and don't know when or if there coming back in and it's suggested that I phone my Dr and get a script for 50mg once a day to counter the loss of the 25's I do this immediately and I return on December 30th for the new 50mg script I'm now out of my 25's and only taking my 100mg twice a day ( I'm under by 50mg a day) and I get told both the 50's and 25's are out and no date of when they will be in but I could always cut a 100mg down to make up the dose ( what I've never been told by a GP or consultant to do that so no rather be under than introuble).

My next of kin is aware of this situation but it did get me wondering how many others are having the same problems.

[Pin1]

Yes, my daughter has the same issue with 25mg tablets of accord a Lamotrogine. The consultant said the best option was to switch manufacturers from genetic medication to the original. However because this is not the best cause of action it can only be done under supervision.

[Wintersbite in reply to Pin1]

Thanks for your reply Pin1 and isn't it funny that both myself and your daughter are having the same problems with the same dose yet different brands and medication it's the 25mg.In my issue I was told by the pharmacy to cut up a 100mg tablet but the leaflet we get even says take whole and I've never been told to do that with epilepsy medication and with your issue you said you can't move to original without supervision so you are stuck with the wrong dose but I was always told that as long as we are getting some of our Meds it's better than nothing but government needs to do something not just for us what about other people with different health problems like us it's dangerous to let us go without our full medication and we are getting told basically " tough" I don't know about you Pin1 but I've let my next of kin know about the issue and I'm on alert I'm doing all my prevention things on the grounds that a fit ( sorry I use old terms) is highly likely and the reason is wrong dose being issued and I live alone so it's harder to know.

Keep safe and good luck.

[GillyA]

when I was having trouble sourcing a particular medication, the pharmacist at the supermarket advised me to ring round smaller independents, as they will often have more than one wholesaler (and also try harder). Big companies are tied to one wholesalers and their processes won’t let the pharmacist try elsewhere. May be worth a go.

[Wintersbite in reply to GillyA]

That's what I was told that they only have one manufacturer and there out Boots pharmacy ( my pharmacy) don't very often give me the script back as it comes directly from the Dr to them and I think I was told once before that's because they started to process it and some of the items had been issued so unless I collect a new script for just said item I would have to wait for there delivery. I'm going to keep a close check on the situation with Boots pharmacy but as I've already done a new item request at there suggestion ( order 50mgs once a day to counter my 25mgs twice a day) I don't want to have a 3rd script done so soon after given this could lead to a over order and a misunderstanding by the Dr ( Topamax has a bad side effect on it's list so it's a understandable misunderstanding when too many repeats are requested) and that is why I would rather not get introuble for doing what is the right thing.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Wintersbite

Trouble getting your epilepsy medicine certainly is concerning. We've been made aware of issues affecting all versions of topiramate, including the branded version, Topamax. We raised this issue directly with Janssen-Cilag and with the Department for Health and Social Care (DHSC).

Janssen-Cilag said they expected their stock to start returning to normal by the end of December 2022. The DHSC said they anticipated that widespread problems with topiramate was improving in December and should improve further in January 2023.

Even if supply issues have improved, this can take time to filter down to wholesalers, pharmacies and patients. However we've contacted Janssen again to get a further update on the current situation.

We'll keep our Drugwatch News section up to date with the latest information - epilepsy.org.uk/topiramate-...

Our website also has more information about switching between different versions of epilepsy medicine, should this be helpful - epilepsy.org.uk/info/treatm...

Kind regards

David

Epilepsy Action Helpline Team

[Wintersbite in reply to EpilepsyAction1]

Hello Epilepsy Action David thank you for letting me know about this as always I had a feeling that you were looking into this matter as you are always on top of issues like this and I was thinking it might be a short term issue and I would have been checking every time I was near my local pharmacy to see if there was any update on the missing part of my script I was just wondering if as I am on a certain brand due to sensitivity if others where having the same problems as myself or if it was just due to the brand I have to take as if that was the case I'm sure I could have done something about it and just bought some allergy tablets to assist on dr's advice.

So once again thank you for everything you are doing very reassuring knowing that your always looking out for us.

Thanks again

[Wintersbite in reply to EpilepsyAction1]

Hi Epilepsy ActionI thought I would give you a little update, yesterday I finally received a text from Boots to inform me that one of the lower doses where in and for me to collect I have just been down and thay informed me that they still don't have the 25mgs but I have been issued the 50mgs and thay still don't know when the 25mgs will be in so I mentioned about the emergency supply number I received from you and I offered to show them the post/link you sent me thay where very greatfull for this information and I did ask if they were issued this information and was told "NO" I also informed that it came from Epilepsy Action and the date on the information was December 6th Boots seemed shocked to only be receiving this information now and from a patient/customer no less hopefully thay will look into this matter in more detail in future and again thank you so much for all your help.

[EpilepsyAction1 Partner Epilepsy Action in reply to Wintersbite]

Hi Winterbite

Thank you for your update. It's good Boots are being so supportive with this. And great the information you gave them helped. Lets hope this does helps them to improve their service.

We are in the process of checking into this situation. At this moment we have not heard anything. If there is still a supply problems we will up date our Drug Watch information ASAP

epilepsy.org.uk/category/dr...

Regards

Diane