restasis uk

[fourchimneys]

My GP wouldn't prescribe me restasis on the NHS even though my ophthalmologist said it is what I need.

Therefore I did some research myself and have ordered this:

https://www.inhousepharmacy.vu/p-821...drops-005.aspx

Is this right?

How have you guys found restasis?

Thanks

[littlemermaid]

http://www.moorfields.nhs.uk/sites/d...ril%202015.pdf The Ophthalmologist should know that ciclosporin is easily available in the NHS as Optimmune (p42 Moorfields Eye Hospital Ophthalmic Formulary April 2015, available from Moorfields Pharmaceuticals). And the GP or you can check your local health trust Formulary, where it will be listed available NHS as a steroid-sparing immunomodulator/immunosuppressant. We used to be able to obtain preservative-free ciclosporin eyedrops (p17) in different formulations from there, but here is ciclosporin 0.2% available preservative-free as a Moorfields Unlicensed Special http://www.moorfieldspharmaceuticals...-specials.html. High-street chain pharmacists tell me they are restricted to their company suppliers, but an independent or hospital pharmacy can order anything they like under UK regulation. The Medications Managers in our local health trust have been helpful with advice, and I got the impression they could make budget decisions.

[fourchimneys]

thanks very much I will go back to my idle gp right now.

really appreciate that.

did you have any luck with either of them?


thanks again

[littlemermaid]

Hi, we were given Optimmune as a 'steroid-sparing agent' after 4y on/off FML for flareups, but I didn't try it because the Ophth said 'use it if you like'. Also there were infected MGs, and we often had reinfection, and I thought ciclosporin might affect immune response to that. This was paediatric. It would have been nice to have some guidance on alternatives to long-term steroids, though. TBH, if we can manage without meds, we don't use them, and concentrate on the MGD, because it seems like less to go wrong with immune system, although if we had chronic inflammation rather than flareups, we would, but minimise it. This is a skill so we need interested Ophthalmologists.

GPs have been most worried about the CCG - Clinical Commissioning Group - Medications Management Committee, or so they say, although Optimmune is standard normal budget. We can contact them direct through local CCG website if appropriate. Ours actually refers to a regional Ophthalmology Specialist Group headed up by a local Consultant who writes the regional Formulary as to what they need, so that Consultant is a good person to ask eg what else they do if there's an allergic or hypersensitive reaction to a component of the med. The Lay Chair of our CCG has been helpful in a patient advocacy role. We have had to support/force the GP with evidence on some meds to support the tertiary hospital consultant's diagnosis eg on needing preservative-free brands.

Some of us pay for private consultations to get private prescriptions for unsupported meds, even if we are in the Consultant or GP's NHS clinic. This seems to be unavoidable, currently.

If patients can get a prescription for the Pharmacy of an Eye Clinic in a regional NHS tertiary teaching hospital, they have lots more available specialist meds and, I think, Specialist Commissioning budget. They also service private practice in the Trust. Some hospital Pharmacies are outsourced so may have a wider remit. In a private clinic pharmacy, we got meds not at NHS negotiated cost, although looked like pegged against it. Of course, the private consultant can ask the GP to supply NHS meds.

Although good for us, NHS deals are with companies and brands, even when others are cheaper or more effective. I did the maths for the GP's prescriptions manager, for example, to demonstrate that a box of branded preservative-free individual vials was cheaper for occasional use than frequently reordering expiring bottles of generic meds with preservatives used only a few times. Budget saving makes a good case with GPs. It's beyond understanding why non-medical staff are made liable for drug treatment and formulation decisions.

Pharmacies have suggested asking the GP for a private prescription when NHS meds prescribed by tertiary hospital consultants have been refused by the GP.

Sorry to go on about access to meds. If anyone has more info, it would be good to share. I truly hope your eyes feel better soon, Fourchimneys.

[fourchimneys]

thanks very much for the info, it is good to know!

[cathy8889]

Hi Little Mermaid. I hope everything is going ok for your daughter. I was just wondering if you could tell what you have found to be difference between chronic inflammation and flareup, I think I suffer from both of these. i think i suffered from chronic inflammtion when the glands were dysfunctioning and the bacteria built up and turned the quality of the meibum very bad. Now I am experiencing my lids thickening right in the corners top and bottom on the temporal side, as soon as they thicken less oil can get out. My meibum is clear now appparently and when I look my glands I can see it coming out in quite good quanitites but I just dont know what to do to stop the lids swelling or whats causing it, is it an allergy, something im eating, im really confused.

Thanks you x

Hi, we were given Optimmune as a 'steroid-sparing agent' after 4y on/off FML for flareups, but I didn't try it because the Ophth said 'use it if you like'. Also there were infected MGs, and we often had reinfection, and I thought ciclosporin might affect immune response to that. This was paediatric. It would have been nice to have some guidance on alternatives to long-term steroids, though. TBH, if we can manage without meds, we don't use them, and concentrate on the MGD, because it seems like less to go wrong with immune system, although if we had chronic inflammation rather than flareups, we would, but minimise it. This is a skill so we need interested Ophthalmologists.

GPs have been most worried about the CCG - Clinical Commissioning Group - Medications Management Committee, or so they say, although Optimmune is standard normal budget. We can contact them direct through local CCG website if appropriate. Ours actually refers to a regional Ophthalmology Specialist Group headed up by a local Consultant who writes the regional Formulary as to what they need, so that Consultant is a good person to ask eg what else they do if there's an allergic or hypersensitive reaction to a component of the med. The Lay Chair of our CCG has been helpful in a patient advocacy role. We have had to support/force the GP with evidence on some meds to support the tertiary hospital consultant's diagnosis eg on needing preservative-free brands.

Some of us pay for private consultations to get private prescriptions for unsupported meds, even if we are in the Consultant or GP's NHS clinic. This seems to be unavoidable, currently.

If patients can get a prescription for the Pharmacy of an Eye Clinic in a regional NHS tertiary teaching hospital, they have lots more available specialist meds and, I think, Specialist Commissioning budget. They also service private practice in the Trust. Some hospital Pharmacies are outsourced so may have a wider remit. In a private clinic pharmacy, we got meds not at NHS negotiated cost, although looked like pegged against it. Of course, the private consultant can ask the GP to supply NHS meds.

Although good for us, NHS deals are with companies and brands, even when others are cheaper or more effective. I did the maths for the GP's prescriptions manager, for example, to demonstrate that a box of branded preservative-free individual vials was cheaper for occasional use than frequently reordering expiring bottles of generic meds with preservatives used only a few times. Budget saving makes a good case with GPs. It's beyond understanding why non-medical staff are made liable for drug treatment and formulation decisions.

Pharmacies have suggested asking the GP for a private prescription when NHS meds prescribed by tertiary hospital consultants have been refused by the GP.

Sorry to go on about access to meds. If anyone has more info, it would be good to share. I truly hope your eyes feel better soon, Fourchimneys.

[littlemermaid]

Cathy, I really don't know. A few of us from DEZ have met, and it was surprising how different everyone's histories are, even with similar symptoms. We thought again how skilled and experienced a specialist is to be able to work it out. Junior and I saw docs in training as they were being taught these inflammation observation skills. Not easy.

My d had child blepharokeratoconjunctivitis so flareups included unresolved MGD, red eye, pain. Chronic keratitis inflammation signs included neovascularisation, photophobia, overtearing (which stopped after 1y as cornea desensitised), sub-epithelial dot lesions. We didn't get cornea thickening but she was on/off FML for years. Eventually the doc looked and treated for demodex.

I think she's OK now but we're stuck between NHS child and adult service, waiting for 14m appointment (supposed to be 3m). Unless we can get Moorfields or Oxford, she won't get regular follow-up in our health trust. We are lost to follow-up in Private since our Ophthalmologist left, although obviously I know what other options are. We had a bad experience with our local NHS Trust. Local Optometrists are not comfortable monitoring a child/young person and say we should be using the hospital service. Local GPs are non-starters on eyes and have only been obstructive about tertiary referral and meds. I am exhausted now by doing all this alone, with no family support, but she's doing well - thanks for asking. The key for us has always been that authoritative tertiary sector cornea specialist Consultant Ophthalmologist diagnosis letter, which we can still use for access.

There's a book 'Dry Eye Disease: The Clinician's Guide to Diagnosis and Treatment' edited by Penny A. Asbell, Michael A. Lemp 2006, £90, which lists some inflammation signs simply, eg 'in dry eye associated with systemic autoimmune disease, inflammatory infiltrates are first seen in the sub-epithelial mucosal tissue of the conjunctiva' and 'In other forms of dry eye, inflammatory infiltration of the glandular and epithelial structures might be the initial presentation of inflammation', although obviously it's not all that simple (search Google 'dry eye keratopathy').

What we really need is a broadcast Dry Eye Day or teaching hospital lecture series on YouTube so we can be taught more to help ourselves.

Others here have eyelid thickening from inflammation so maybe keep posting about it.