300mg Hydroxychloroquine Tablets on NHS?

[BeeManShrop]

Dear All

I have been trying to get 300mg Hydroxy tablets for my wife for months now. I asked the specialist nurses several times during October & November --on both occasions they said they had never heard of 300mg tabs and/or they did not exist. In December 20 I asked our rheumy for them during a face to face and both the registrar and the consultant said they had never heard of them but would ask the hospital Chief Pharmacist to contact the CCG -- now 2 months later we have still had no reply from the hospital.

It is such a hassle to do the 1 on day one and 2 (at separate times just after a meal) on day 2 routine bearing in mind the routine will swap over on the seventh day and my wife is also taking a number of other tablets for other complaints/diseases it all becomes very complicated indeed.

However, I emailed our CCG directly and again after a considerable delay and a reminder we have now been told "that it is only the 200mg tablets that are available on the NHS tariff at this time". I do not know what the NHS tariff is but do wonder has anyone else actually been supplied the 300mg tablet on the NHS in England (or the UK for that matter). If yes could you please say which CCG you are with to allow me to quote this to my lot. They do not presently seem to be in the "can do" mode and prefer to be obstructive. Many thanks

[PMRpro]

medicines.org.uk/emc/produc...

Just because the NHS hasn't negotiated a tariff for the 300mg tablets shouldn't mean you can't have them - but the proportional price will be much higher so they will try to wriggle out of it.

Here where I llive in Italy you would be told to take 1 and a 1/2 - the selection of drugs covered and doses available is quite narrow though you can have pretty much anything if you pay the difference in price at the pharmacy and if it can be ordered in Italy which all depends on the wholesalers.

However - LupusUK knows all about it:

lupusuk.org.uk/300mg-hcq/

They have only been around since last September - why not contact Paul Howard directly

[BeeManShrop in reply to PMRpro]

Many thanks PMRpro for your advice. I have since been advised by Black Rock that each CCG will make their own minds up. It is therefore clearly a post code lottery. I also understand that the 300mg tablets are considerably more costly than the 200mg, so much so that it is more economical. The hassle caused to patients does not come into it -- that does not cost the NHS anything. Many thanks

[PMRpro in reply to BeeManShrop]

Did you read the Lupus announcement - with rheumies saying how wonderful it was being able to tailor doses? Pointless ...

[BeeManShrop in reply to PMRpro]

Yes I did see the comments thanks. The problem is the rheumies are not in charge of the cash some other well hidden bureaucrat does that. It does appear that the 300mg tablets are more than twice as much as 200mg -- for half as many tablets, if I read the data correctly.

[PMRpro in reply to BeeManShrop]

That's probably about right, The same applies for enteric coated prednisolone - in order to taper slowly you need 1mg tablets - that work out about 5x the cost per mg. But you can't cut e/c tablets ...

[Barbara17]

I’m on 2000mg hydroxy weekly so have the same problem as your wife. My solution on the days I have to take two tablets is to take the first tablet then ask Alexa to remind me about the second one at dinner time.

[BeeManShrop in reply to Barbara17]

Thanks Barbara Sadly we do not have an Alexa (or a dog, cat or other furry thing) it does sound a good idea though. We do use one of those 7 day dispenser boxes with 4 sections per day. The trouble is the hydroxy dose will change every week i.e Sunday one week will have 2 tabs but the next Sunday will have 1 tab. What a pain. We will have to try to move to splitting tablets to get 11/2 per day (300mg). I already have to spilt the tablet for the diabetes. We have one table covered in medicine stuff. Our home is becoming a b**y pharmacy. Just think the back office Scrooges/bean counters in the NHS were probably taking a bow with the front liners when we were clapping them. I also would bet that they are/were at the front of the queue to get a jab too, even though they have not been near a patient for years (if ever). Sorry -- for the rant. XX

[PMRpro in reply to BeeManShrop]

You can get monthly dosette boxes too - filling them once monthly would also make the switch easy. As would 4 of the weekly ones.

[BeeManShrop in reply to PMRpro]

Thanks PMRpro Surprisingly, I have only had two replies from the UK. I know Lupus is a rare disease but did not realise how few were on the 300mg regime.

[Barbara17 in reply to BeeManShrop]

I’m in Scotland!

[BeeManShrop in reply to Barbara17]

Woops! Sorry Barbara I know I did say UK -- have I put my foot in it? and upset you --sorry. I know some over the border are a bit touchy and do not like being still called UK. Personally we see Scotland as part of the family and would not want you to go away and do your own thing -like loosing a close relative. My wife is half Scot. So I have had one reply from Italy, one from Scotland and I don't know where Krazykat is.We may try your suggestion re 10 tabs per week, it sounds like a good solution and easy to remember. Currently it works out as 10 one week and 11 the next week if we stick rigidly to the 2:1:2:1 routine. Thanks XX

[Barbara17 in reply to BeeManShrop]

I just wanted to emphasise I was in U.K. too and I was born in England so I have a foot in both camps. Krazykat is in England. There’s quite a few of us in the U.K. My consultant asked me how I spaced out my hydroxy and she was ok about it when I told her as it’s a cumulative medicine. It’s easier to remember than odd days every week. Hope this has helped.

[Barbara17 in reply to BeeManShrop]

I don’t know if your wife takes ten tablets a week, as I do. But if she does could she take the extra one on Mondays, Wednesdays and Fridays? That’s what I do and it still gives you ten tablets over seven days. I’ve been doing this for years now.

[Krazykat26]

Hi BeemanShrop 🤗I'm on 300mgs hydroxy per day too. I go through the calender n put a tick on hydroxy days that I take two doses..that way hubby n I can keep track. Having said that I did get confused a couple of weeks ago n got my ticks mixed up!! 🙆

Anyway I did try to get 300mg tablets..my GP did a prescription although she didn't know 300mgs tabs existed..however pharmacy said no they can't get them!! I haven't persued it tbh coz I can't be bothered!! 😹🌈😽😽Xx

[BeeManShrop in reply to Krazykat26]

Thanks Krazykat Good to know we are not alone with this problem. I too am at the point where I am banging my head against an immovable NHS wall. It is only hurting me!! There is nothing worse that getting your ticks mixed up. I load up our 7 day dispenser once a week --I did forget one time and neither of us could recall how many hydroxy wifey had taken yesterday -- panic!! I now make sure I load the box before it runs out altogether. Good to hear from you -- keep safe. XX

[Jmiller623]

Hi BeeMan. I also take 300 daily. We only have 200 pills here in the states. I take 2 tabs on Monday Wednesday and Friday and 1 tab on other days. It’s easier to remember this way. You miss one 200 dose per week but it’s the easiest way for me to remember and I haven’t noticed any different compared to when I would split the pills and take 300 daily.

[BeeManShrop in reply to Jmiller623]

hi Jmiller Many thanks for you helpful reply. It does indeed make life much easier doing it your way. Thanks again and keep safe.

[Krazykat26 in reply to Jmiller623]

That's handy to know J thank you 🤗 Think I'm going to change my tick system coz we got mixed up again this week 🙆 so just to clarify..take morning n evening dose on Mon Weds n Fri n one dose other days..that evens it out over the course of a week?

Sorry...I'm useless at maths!! 😹🌈😽😽Xx

[Jmiller623 in reply to Krazykat26]

You got it!!!

[Krazykat26 in reply to Jmiller623]

👍🤗🌈😽😽xx

[Energy14]

How you doing BeeManShrop, 😊

To give you an update that my Rheumy prescribed me Hydroxychloroquine 300mg on 24 June 2021 and Boots were able to source this for me, with BlackRock pharmaceuticals Ltd. Script was taken in on Sat 26 June, and we had text alert yesterday early evening to advise ready to collect *very good*.

We initially tried Lloyds pharmacy, not able to get in, or even the local hospital (I thought was strange).

I think it is to do with which Supplier's are used.

I come under NHS North Hampshire CCG

I hope you are able to make headway.

Best regards

🦋🌻

[BeeManShrop in reply to Energy14]

Thanks Energy14 I think it is a postcode lottery. Here in deepest Shropshire our CCG will not authorise the 300mg tabs based on the very high cost. I think I probably agree with them. The last time I looked the 300s were about 3 times more expensive than the 200mg for about half as many tablets. Cheers anyway for your trouble.

[Energy14 in reply to BeeManShrop]

No worries, BeeManShrop

Postcode lottery seems so unfair

Best wishes ❤

[PMRpro]

Can I just say - this sounds like the GP trying it on because they are more expensive and they don't want it to go out of their budget. There has always been a fight like this between some GPs and the consultant when GPs think that expensive stuff should come from the secondary or tertiary budgets rather than theirs. Speak to the consultant about it.

[BeeManShrop in reply to PMRpro]

Hi PMPro Good to hear from you again. Not the GP in this case as we still get the hydroxy from the hospital as we have not as yet been transferred to GP. I did in fact write directly to our CCG (who only replied after several months and several reminders) to say that NHS England had not set a tariff for the 300mg tabs which means (I think) that they have not agreed to pay or refund the cost to the doctor, hospital or pharmacy ordering them. This was several months ago now, maybe they have now set that tariff. I have now got used to the 200:400 system and wifey is slowly improving -- still a long way to go though. Cheers again.

[lupie-Cathy]

If you get your Rheumatologist to tell the GP to get those tablets she should be able to put 300 mg tablets only on your prescriptions that way pharmacy must get them in. I have Zentiva brand only on my prescriptions but the pharmacy tried to wriggle out and give me quinoric but I showed them it says zentiva on the prescriptions so they had to get them in for me! Worth a try anyway, hope this helps