should I carry on with medication?

[Brychni]

Bearing in mind that hydroxy takes about 3 months to start working and I've only been taking it for 28 days - should I stop taking it in light of the shortage? There seems little point if my next prescription can't be fulfilled.

[patsymay13]

Well if I were you I would keep taking it , have you put in another prescription with your gp yet? I am on hydroxy and due to put my prescription in next week x

[Brychni in reply to patsymay13]

Not yet - they have said that no one is allowed to put in for their repeats 'early'. So I will have to wait I think 2 days before I run out.

[helixhelix]

Do you know your prescription won’t be fulfilled? Talk to the chemists amd maybe advance order.

[Brychni in reply to helixhelix]

I'm pretty certain. I can't get in touch until tomorrow as our pharmacy is within the surgery but the other chemist in town doesn't have any, the nearest outside of my local town are all about 45 minutes away and of the 5 that I rang one didn't have any and not able to get any more as they were out of stock, the other had one packet of 16 tablets and also not able to order any more, the others had one or 2 boxes of Quinoric ( I have been taking Zentiva). The pharmacist at Boots told me it was because of this 'unproven' rumour that it helps with covid 19 and she was quite angry about it. Still, she said that if my surgery refused to give a new prescription now she would be happy to put one packet aside (they had 3) for me which was nice but you won't believe this: she told me that GPs in the UK were prescribing it for covid 19 but they were doing so against rules (or something). I was really shocked.

Interestingly, all the chemists I spoke to said they don't normally dispense much hydroxy. In spite of us all talking about rheumatic/inflammatory/autoimmune disease here on this forum, sufferers are in a minority.

I will be calling the rheumatology nurse about this too though, it sounds awful but since I first went to the GP a few years ago with the first signs that something was wrong, I have little faith in them especially the pharmacy. For example when I got my first prescription from the consultant I saw, she prescribed just 14 tablets in line with prescribing practice due to budgets or something. The hospital writes to the first one, with only 2 weeks supply and that then triggers repeats from the GP. Not a single person, including the GP who is the head of the pharmacy knew what her prescription meant. They were all scratching their heads and saying why only 14 tablets?? No one knew that this is perfectly normal procedure. They had to phone the consultant and claimed they had to wait for her letter to come through. They are also starting to behave like beaurocrats. A friend of mine went to the surgery to pick up meds for one of her terminally ill care patients and the surgery have locked the surgery so the procedure is to 'knock once' on the electric door (thick glass) and wait. She stood there for over 20 minutes with another carer and literally after an hour someone came out because my friend telephoned the surgery on her mobile from the car park. they claimed they hadn't heard a knock. She explained they had both knocked several times and suggested a bell which was met with a stony silence and a lecture about how busy they were.

I can't help thinking that some of them are enjoying the drama. It turned out the wrong prescription was written and my friend had to go all the way back a day later. All the time the patient was without their medication because of not being allowed to put in any earlier than a couple of days. when she went back they were equally arsey with her.

[summer32A in reply to Brychni]

Guys 14 days supply from hospital was common pre corona, please don't be brand specific at this difficult time.

I personally could not take this drug it caused me side effects.

[Brychni in reply to summer32A]

Someone I've been talking to, could have been the rheumatology nurse, said that patients should stay on what they were initially prescribed unless it causes them problems.

[summer32A in reply to summer32A]

My other old avatar is summer

[allanah]

Keep taking it, the Lupus society who has lots of patients on it they say there will be enough stock. If their theory proves right and it has helpful parts for RA and covid your lucky,!!

[Brychni in reply to allanah]

Hi allanah - has there been an update?

[allanah in reply to Brychni]

I saw one last night on the lupus site

[Brychni in reply to allanah]

thanks, I'll have a look now.

[Brychni in reply to allanah]

can't find it! Do you have the link? Thank you.

[allanah in reply to Brychni]

Cant see it now either lol but it was hydrochloroquine covid on lupus.org.

My friend is on it and her pharmacist put stock away for her as shes bern on it years and they know her .

[lilyak]

Keep taking it. The issues with inappropriate prescribing are being addressed and will be resolved by the time you need a refill.