0.06% Cyclosporine UK

[lizlou29]

Happy New Year everyone.

Having a really bad time of it at the moment, eyes have been particularly bad for a week now (intense burning, bloodshot, keeping me awake etc) but wanted to do a quick post about Cyclosporine in the UK.

I finally got my prescription for the 0.06% preservative free Cyclosporine produced by Moorfields just before Christmas and I'm happy to say it doesn't burn anywhere near as much as Optimmune or the 2% PF Moorfields ointment I also tried. It burns a little on application but I can use it in the morning unlike Optimmune and the other 2% that burned so badly all day and often into the next day literally rendering me unable to do anything but sit with my eyes shut.

My ophthalmologist said if it helps it won't help as quickly as the 2% would but as there is no way in the world I could tolerate that, I thought it was worth giving the low dose ago. The 0.06% comes in a bottle with a dropper and has to be kept in the fridge and used within 7 days once opened. I was only given 4 bottles so I've already had to get another prescription from my GP to make sure my local pharmacy get it in on time. Apparently I can only get 4 bottles at a time which is a bit annoying but needs must.

Thanks to LittleMermaid for making me aware in the first place that the low strength Cyclosporine was available from Moorfields. I don't think many ophths are keen to prescribe it here as it is more expensive and most ophths couldn't understand why I couldn't just put up with the burning from Optimmune. Luckily I have a better one now!

Oh and I don't think it's the Cyclosporine causing my eyes to be so bad, I had a really bad week before I started using it as well.

[Faith1989]

Great to hear you finally got it give it a few months before deciding on whether it works or not, annoying I know lol but it takes a lot of time.

[littlemermaid]

Thanks to LittleMermaid for making me aware in the first place that the low strength Cyclosporine was available from Moorfields. I don't think many ophths are keen to prescribe it here as it is more expensive and most ophths couldn't understand why I couldn't just put up with the burning from Optimmune. Luckily I have a better one now!

Nope, I've never met one yet who knew it was available, including Moorfields. Love to your uber-doc. He's doing good.

[lizlou29]

Well I thought I was picking prescription up yesterday from my GP surgery but they said it may take some time as it isn't "on their list". I described what it was and told them it's listed online on Moorfields Pharmaceutical's page but I have to take the box in later for him to see and there is no guarantee I'll be able to get it soon. I've got enough to last me two weeks so fingers crossed I get it by then and don't have to have a gap in between usage! Seeing my Ophth on Monday as this feeling as if my eyelids are on fire seems like it's here to stay! I actually managed a whole day out over the Christmas break - lunch a bit of shopping and cinema with only some dryness and redness in the evening, the first time in ages. Seems like I'm paying for that one day of near-normality now!

[lizlou29]

Well the Practice Manager at my Health Centre called to say they won't be able to prescribe it without jumping through hoops as it's unlicensed so to go back to the hospital pharmacy (connected to eye clinic) and ask them to prescribe. The pharmacist at the hospital told me my GP would be able to prescribe it. Will ask my Ophth on Monday.

[littlemermaid]

It's not 'unlicensed', it's just not on the Clinical Commissioning Group Drugs Formulary list. That is either copied from eg Buckinghamshire Formulary or set by a local clinical lead Ophthalmologist http://www.bucksformulary.nhs.uk/

Cyclosporine will be on the Formulary list as Optimmune, but you are proven allergic to the base. Immediate red eye. That is your case for a 'special'.

Practice Managers have no medical knowledge and are not qualified to make these decisions. GPs are incentivised by the CCG to reduce the 'drug spend' - ours says 'if the hospital prescribe specials, they should pay for it'. These are not 'specials', just alternatives.

The CCG Drugs Committee holds the budget. I've met them. They are GPs so don't know anything about eye conditions and are relying on Health Trust lead ophthalmologist for guidance.

I've nobbled the Lay Chair of our CCG governing body. He said he will try to sort this out on children's eyedrops. GP says he 'can't make a case to the CCG'. Lucky I can then.

Tell them you've got Sjogrens (whether you have or not) because it's something they vaguely recognise. And allergic to eyedrops, which you are.

The other option meanwhile, to keep our sanity, is to ask GP or his lordship or one of the others, for a private prescription. At least we get VAT off http://customs.hmrc.gov.uk/channelsP...yType=document

Next step when we've got the strength, Monitor, Healthwatch, CQC, and national Specialist Commissioning for Ophthalmology drugs pot, if we can find it.

[lizlou29]

I told the GP by telephone (the one I normally see is on holiday) that the cyclosporine was for low tear production and he asked why I have low tear production as it's "very unusual for someone of your age". I said Sjogren's was suspected but not confirmed. He said he wanted to ascertain whether the cyclosporine was absolutely necessary or we could "look at something else". Grrr. Ophth said that most GP's he's dealt with are useless when it comes to most eye conditions and he's not wrong. Of course I'm sure there are some exceptions.

I wonder how much a private prescription for 0.06% cyclosporine would be? I've only ever paid for oral Azithromycin privately and that was about the same as NHS. I have no idea how these things work to be honest!

I can't imagine how frustrated you must feel LM. I've definitely experienced the downside to the NHS in the last year in terms of getting referrals and appointments. Now for the joy of trying to obtain prescriptions.....

[littlemermaid]

Hi Liz, maybe email Dan Alalouff in Moorfields Pharmacy Customer Services for an NHS price. He's a nice guy.

When I ordered it from a local private clinic, they couldn't decide how much to charge because it 'wasn't on the computer' so we got it free, lol

Everyone is trying to educate their GPs and Commissioning Groups this year on eye conditions and preventable blindness - RNIB, Fight for Sight, even NHS England. I'll post some links when I get a minute but check out their news feeds if interested.

[lizlou29]

Just thought I'd let you know LittleMermaid, I asked my (brilliant) local pharmacist about a private prescription for the 0.06% cyclosporine, he looked in to it and I could get it for the bargain price of £214 per bottle. I don't have £11k a year to spare unfortunately so I'll be extra nice at the eye clinic on Monday!

[littlemermaid]

What? Blimey. I just realised who must have paid for ours. Oh dear. How much worse can I feel.

[lizlou29]

No wonder I only got 4 bottles when I'm meant to be using it for at least 3 months. The hospital pharmacist did say good luck when she told me I'd need to get a repeat prescription from GP. Oh I hope they don't kick up a fuss at the eye clinic. Ophth will be good about it but had to chase it up with 4 phone calls last time.