Announcement

Collapse
No announcement yet.

FML drops. Been prescribed but concerned about glaucoma & the BAK preservative.

Collapse
X
  •  
  • Filter
  • Time
  • Show
Clear All
new posts

  • #16
    I live in Canada and here we have a steroid drop without preservatives. It come in small vials like restasis but I use it until it is gone and do not dispose of the vial after instilling one drop. Of course it is more expensive and my drug plan doesn't cover it. I understand that there are also glaucoma drops that do not contain BAK as well but do not know if they are available where you live.

    Comment


    • #17
      Thank you again Hokucat, and thanks farmgirl too. I've been struggling the past few weeks to deal with this and it's a bit of comfort coming here and finding people who understand. Not that I'd wish this on someone. It's hard when so many people (away from this forum) don't understand and dismiss it as a minor condition (including many doctors).

      I've had more of a look into sclerals in the UK on the NHS. It seems I might fit the criteria for my vision problems alone - separate from the dry eye, which is sort of good news, but the bad news is there is a massive months and months long waiting list, and I'm almost completely out of money. I can't work when my vision is so bad for most of the day. I'm trying to work out how I can perhaps be fast-tracked - perhaps because there's been so much delay by doctors not listening to me, but I'm increasingly finding it hard to keep fighting everyday for help.

      farmgirl, thanks for the information about preservative-free steroids. If I'm prescribed anymore I'm definitely going to ask about these. I have my next appointment coming up soon. I'm guessing they might be available privately here in the UK but I'm not sure. Not confident I'd get them on our NHS because they're currently trying to stop prescribing even eyedrops. Apparently because eyedrops are just for minor conditions.

      Comment


      • #18
        The ones I get are Bausch & Lomb - Minims Prednisolone Opth Soln 0.5%, they don't make a 1% but I am happy with the lower dose anyhow. They come in a box of 20x 0.3ml vials but like I said before I use them until they are gone.

        Comment


        • #19
          Thanks, farmgirl. If the opth suggests steroids again, I'm going to ask about these. I'm with you about the lower dose - I have a slightly increased risk of glaucoma so would prefer that.

          Comment


          • #20
            Hi,

            On NHS you can get steroids preservative free, I had dexamethasone and Minims prednisilone at different times, though the ones I had may be stronger than the steroid in the one you're being prescribed (FML - fluorometholone). I did get all the possible side effects with the other steroid types (raised eye pressure, cataracts) but not everyone is a steroid responder of course and also depends on how long you're on them for.

            Comparison of topical prednisolone acetate 1% versus fluorometholone 0.1% (2014):

            In the prednisolone arm, a significantly higher proportion exceeded the defined IOP elevation threshold (22% vs. 6%), and glaucoma medications were initiated or increased more often (17% vs. 5%).
            https://www.ncbi.nlm.nih.gov/pubmed/25062336

            Fluorometholone 0.1% (FML, others). Slightly more potent, with fewer side effects than prednisolone and dexamethasone.
            2009 - Harwood-Nuss' Clinical Practice of Emergency Medicine

            There's a thread here that talks about an FML ointment without BAK preservative, it does have another preservative in it but could be less strong.

            http://www.dryeyezone.com/talk/forum...l-ointment-0-1

            Originally posted by CharlieGreenEyes View Post
            Not confident I'd get them on our NHS because they're currently trying to stop prescribing even eyedrops. Apparently because eyedrops are just for minor conditions.
            Eh, that's absolutely not true. A lot of hospitals get guidelines about eye drops that separate them into first line, second and third depending on severity, as well as preservative free options. Here's an example of one from Google (maybe you will have luck finding the one for your area via Google, or just bring the closest one to your eye doctor to show):

            http://www.neneccg.nhs.uk/resources/...uidance(1).pdf

            I'm definitely considered severe and so my eye doctors didn't even bother with the first line ones. Went straight to second and third (Hylo-Forte etc.). I'm very sensitive to stuff though so after trying many of them have had to order in stuff not available in the UK that I can tolerate.

            Sclerals - The experienced fitter for the UK that has been mentioned on the forums here and elsewhere would be Ken Pullum based at Moorfields and privately via Innovative Sclerals at Hertfordshire (would link them but their site is down). They also trained fitters in other places like at the aforementioned Oxford NHS hospital. There's also an opticians in Birmingham that has a cornea topographer they use to digitally design a fit which might be less trial and error. I contacted them and they said they may not be able to accommodate me as my dry eye was induced by such a rare condition with many complications, but for others it's worth looking into. There are others that mention this technology though so they're not the only ones in the UK e.g. Peter Irvins in Glasgow.

            http://www.thecontactlenspractice.co.uk/
            http://www.peterivins.co.uk/contactlenses/?next=&id=263

            In my case my eye doctors seem apprehensive to prescribe contact lenses as I have complications that they worry might put me at risk with contact lens wear. But having already tried everything else on the NHS (artificial tears, lubricant ointments, steroids, antibiotics, Ikervis, Prokera etc.), autologous serum seemed the next step, but the NHS rarely approves it due to costs (400 a month roughly), so the cornea specialist suggested I try the new approach in Phase 3 of trials here in UK, fingerprick autologous blood. It's taken the edge off the pain and helped some of the inflammation. Still have vision problems and pain but I'm hoping it'll help me hold out until more options become available here that are in the pipeline elsewhere in the world, like Regenesol amniotic membrane eye drops.
            Sufferer due to Toxic Epidermal Necrolysis.
            Avatar art by corsariomarcio

            Comment


            • #21
              Thank you so much for all that advice and information, PhoenixEyes! That's so, so helpful.

              My ophth seems very keen that I continue using the FML. Didn't seem worried about the preservative - perhaps because I'm only taking for a few weeks? My eyes are burning more since I started but it could just be coincidence and a bad week. Who knows. I'll give it another week to see how things go. I think he wants to stick to FML with me because I already have an increased glaucoma risk.

              It sounds like things have been really awful for you! I'm so sorry nothing you've tried so far has really helped, and it's a shame you can't try sclerals. I really hope that the autologous blood will help you - and keep your pain at bay. It's frustrating to think some treatments that might help (sclerals, serum, etc) are held back by the NHS. And it's surely a false economy sometimes - especially when severe dry eye leads to other more costly conditions, i.e. perhaps someone is semi-housebound when the dry eye is severe, which increases the risk of heart problems, diabetes, stroke, etc. Or develops other eye or visual complications due to the severe dry eye. Or stress and depression because of it.

              I have really complex vision issues that glasses don't correct (unrelated to the dry eye) so my GP is willing to refer me to a NHS hospital optometrist. I had a bad experience with Moorfields when I first got the dry eye issues so I'm reluctant to go there for anything now especially NHS. The Oxford Hospital looks very good though for my issues - hopefully I can go there even although I'm out of the area. Just not sure I can face the ongoing vision problems if there's a long waiting list. Catch 22 really for me because without proper vision I can't work but without work I can't afford to go privately. I only get proper vision with my rgp lenses - which I can't wear for long with the dry eye.

              If I can gather some money together, it looks like my options are Oxford Hospital as a private patient, Ken Pullum, or the place in Birmingham. Scotland is sadly a bit too far to travel especially with the eyes so bad right now.

              My local CCG is currently consulting on proposals to limit/end certain prescriptions for what they describe as "minor" conditions. They include paracetamol (I guess something easily and cheaply available OTC - although I don't know if some people may need to use a lot) but they also included eyedrops in the list. Maybe they mean for mild dry eye patients who don't see a hospital consultant? I don't know. I've filled-in their consultation survey - giving my views.

              Maybe it's different if prescribed by a hospital. I currently get Hylocare, Thealoz Duo, and Xailin Night on NHS prescription (although never enough for my needs so have to buy extra OTC). Sometimes use Hyloforte, hylotear too.

              Comment


              • #22
                Charlie why are you at a higher risk of glaucoma, are you a steroid responder? Or are your pressures high?

                Comment


                • #23
                  Originally posted by Faith1989 View Post
                  Charlie why are you at a higher risk of glaucoma, are you a steroid responder? Or are your pressures high?
                  I don't think I have particularly major risks but I guess they were being cautious?

                  I have high myopia and was told this increases my risk slightly, but also I had slightly increased eye pressure a few months ago. It went down to normal but I guess that's something they took into account? Don't know what a steroid responder is?

                  Comment


                  • #24
                    I have been using Lotemax once a day for a few years. My pressures have never gone up. Highest they have been is 15. A steroid responder is someone whose pressures go up very quickly when using them. I know steroids are risky but FML is somewhat safer. My doctor knows I use Lotemax. I get my pressures and eyes checked every two months. FML may take some time to work as it is not very strong. My current eye doc told me to not use prednisone but I have tried the non preservative ones Farmgirl spoke about.

                    Comment


                    • #25
                      Thanks for explaining what steroid responder means. I guess I'll find out when I get my pressures checked - I think next week. I was 21/22 a few months ago (never taken steroids at that stage) but it went down to normal before I was prescribed FML. I've only got it for a month so think glaucoma risk is very low.

                      I've now been prescribed Ikervis so hopefully this will help instead of steroids (I know I'll have to wait a few months).

                      Comment


                      • #26
                        I think steroid responder means your pressure goes up on steroids. I'm like this unfortunately. If I remember right mine even went up into the 30s so they got a big shock and put me on three different glaucoma medications. I was on the stronger stuff though, dexamethasone and later prednisilone, and was on it for some months before things went haywire. Now off the steroids and don't need the glaucoma meds, though did end up with small cataracts.

                        I think you'll be fine on FML short term and being checked for pressure etc. It's a shame if the preservative irritating you though, but as it's just short term hopefully it'll be tolerable. Good to hear you managed to get Ikervis, hope it helps.

                        Before dishing out money for private sclerals, I'd see if the local NHS optometrist can fit them or another NHS optometrist since you fit the bill for being referred. If you do decide to go private, contact them ahead of time to see if they can accommodate the complex vision issues you mentioned. When I contacted the Birmingham place they were up front about whether they could accommodate, there may be more local clinics in your area though that offer it if you search. I have heard some say though that sclerals can sometimes be more suitable for complex vision correction than other things.

                        Thanks for your kind words. Yes I'm very grateful for the NHS since I'd be broke with all the hospital visits and treatments I've had so far (e.g. IVIG for Necrolysis can cost thousands), but it has its downsides. You're right that in some cases it can be a false economy. I know that awhile back they offered acupuncture on NHS but local funding have since pulled it for our area. I have a relative who found it helped their arthritic and diabetic pain for a very long time, avoiding more expensive surgery and injections. :\
                        Sufferer due to Toxic Epidermal Necrolysis.
                        Avatar art by corsariomarcio

                        Comment


                        • #27
                          That must have been a shock for you too. Did they not monitor your eyes whilst you were on the steroids? That sounds like an awful experience for you. Sorry to hear about the cataracts too. I don't know with your eye issues whether you can have the lens replacement surgery - but my othpth actually suggested that surgery (with lens implants in my case) as something he thought might be helpful long-term for my dry eyes issues. Not sure if that's because of my complex vision as well - and don't know if you can have the surgery because you have other ocular issues.

                          Don't know what to make of FML really. It's been a couple of weeks now. My bad dry eye is still as painful (sometimes more painful) than ever. The other seems no worse but also no better. Maybe it's helping though so I'll try to think positive.

                          I think I'll have to rely on NHS optometrists for sclerals for the moment. Simply can't afford privately. Just hoping the wait won't be too long.

                          Agree with you about the NHS. I'm so grateful for some of the help I've had. But I'm also feeling slightly upset (about some aspects of it - or at least how it is at present) because I feel at times like I have to figth not only the eye issues but also the NHS to get help.

                          My NHS GP was happy (thankfully) to write an NHS prescription for the FML, but I'm finding it difficult to obtain the Ikervis on the NHS.

                          Originally posted by PhoenixEyes View Post
                          I think steroid responder means your pressure goes up on steroids. I'm like this unfortunately. If I remember right mine even went up into the 30s so they got a big shock and put me on three different glaucoma medications. I was on the stronger stuff though, dexamethasone and later prednisilone, and was on it for some months before things went haywire. Now off the steroids and don't need the glaucoma meds, though did end up with small cataracts.

                          I think you'll be fine on FML short term and being checked for pressure etc. It's a shame if the preservative irritating you though, but as it's just short term hopefully it'll be tolerable. Good to hear you managed to get Ikervis, hope it helps.

                          Before dishing out money for private sclerals, I'd see if the local NHS optometrist can fit them or another NHS optometrist since you fit the bill for being referred. If you do decide to go private, contact them ahead of time to see if they can accommodate the complex vision issues you mentioned. When I contacted the Birmingham place they were up front about whether they could accommodate, there may be more local clinics in your area though that offer it if you search. I have heard some say though that sclerals can sometimes be more suitable for complex vision correction than other things.

                          Thanks for your kind words. Yes I'm very grateful for the NHS since I'd be broke with all the hospital visits and treatments I've had so far (e.g. IVIG for Necrolysis can cost thousands), but it has its downsides. You're right that in some cases it can be a false economy. I know that awhile back they offered acupuncture on NHS but local funding have since pulled it for our area. I have a relative who found it helped their arthritic and diabetic pain for a very long time, avoiding more expensive surgery and injections. :\

                          Comment


                          • #28
                            My eyes were monitored and had a pressure check test at every appointment, which is typically every 2 to 4 weeks. Unfortunately the change can be quite sudden.

                            Yes if the cataracts get too bad I can have the cataract surgery. The cornea specialist I see just so happens to also be a consultant cataract surgeon. The cataracts is very small I think so surgery isn't indicated yet, I think I noticed a slight change in color perception between my eyes but have been trying out antioxidants to try and improve things (e.g. VisuXL eye drops, Astaxanthin as a supplement, citrus green tea). People's experiences after cataract surgery seems so different, some experience an improvement or reversal of dry eye whilst others experience worse dry eye, I guess it can depend on what reaction people have to the post-surgery antibiotics and steroid eye drops they typically prescribe.

                            I didn't get Ikervis until I had already tried and failed with steroids, antibiotics, artificial tears, lubricant ointments etc. I think like with the guidelines for artificial tear drops where you see three stages (front line, second line, third line), then the Ikervis might be considered second or third line. If you don't get relief with the steroids I'd bring it up to them.

                            There's also Xiidra lifitegrast eye drop currently going through stages of approval in the UK, it blocks some inflammatory mediators, a bit like Ikervis but the mechanism of action is different - doesn't suppress the immune system. Of course like everything it has mixed feedback in the US, but I hope to give it a shot when it comes out here since I've already tried almost everything else on offer. I dunno when it'll be out here though, I saw a page where NICE is reviewing it September 2017 and it seems like they'd be one of the deciding factors for if it comes on the NHS.

                            "Lifitegrast for treating dry eye disease: To appraise the clinical and cost effectiveness of lifitegrast within its marketing authorisation for treating dry eye disease. Scoping workshop 05 September 2017"
                            https://www.nice.org.uk/guidance/ind...nt/gid-ta10196

                            "How NICE decides which drugs to make available on the NHS, an insight into the complexities of deciding whether eye health treatments should be made available on the NHS"
                            http://www.rnib.org.uk/services-we-o...w-nice-decides

                            Best of luck chasing the sclerals, hope they get a referral soon for you.
                            Sufferer due to Toxic Epidermal Necrolysis.
                            Avatar art by corsariomarcio

                            Comment


                            • #29
                              That's very unfortunate! Sorry you had such bad luck with the steroids. I didn't realise it could change so quickly.

                              My mum has never had dry eye and got it for a few weeks after cataract surgery - but then recovered. She thinks it was just a reaction to the steroid or antibiotic drops she was on. We can't really know for sure. It's more complicated when it's people like us who already have dry eye - but hopefully it will help that you have a specialist looking after you in both dry eye and cataract surgery.

                              The new drop you mention above sounds interesting. I hope you are able to obtain it when it comes out here - and hope it helps you. My eye has got worse again the last day or so, so I can't look at the link now - but perhaps if it's cheaper than other treatments, i.e. ikervis, serum drops, perhaps there's more chance of obtaining it on the NHS?

                              I should fit the criteria for Ikervis. Been on doxy for nearly a year now, been through so many different artificial tears, ointments, gels, over the past 3-4 years. Steroid course nearly over. The pain got better briefly but now worse again. TBUT was 0-1 at last consultation - and my worse eye had several corneal abrasions. I want to check at next appt. if it's RCE because I've had several incidents of these over the past 5-10 years (even before I started having dry eye symptoms).

                              I've also checked with NICE. Their guidelines indicate it should be given to patients with severe dry eye who haven't responded to artificial tears. Some CCGs try to cost-cut though - and unfortunately for me, mine is one of these. I'm not surprised seeing as they are currently "consulting" the public about ending NHS prescriptions for medicines for "minor temporary" conditions such as colds, coughs, - and dry eye.

                              They're being difficult because my Ikervis prescription is private. I can't afford to pay for it privately so asked for it on the NHS. My CCG encourages GPs to only prescribe it following an NHS consultation (although this is at the GPs discretion). I have a feeling they're putting pressure on GPs to restrict all dry eye treatments - because my GP mentioned the CCG asking questions about her continued prescriptions to me for Hylocare and Thealoz Duo.

                              I spoke to NICE and they felt that I should be entitled to it on the NHS - because I fit the criteria and it is a NICE approved NHS treatment. They've suggested I enlist the help of my local PALs if they GP won't prescribe. I'm just fed-up with battling to get treatment so I'm hoping it won't come to that. I really dread any fight I'll probably face to get sclerals on the NHS! I'm beginning to think about begging family for help with scleral costs (maybe no birthday or christmas presents for the next 10 years or so!). I'll see what happens though.

                              If and when I move house again, I'm going include healthcare provisions in my decision over where to move to!

                              I'm really keen to start Ikervis asap because the FML drops are finally working it seems. The first couple weeks they make my eyes worse, but then they seemed to help but the consultant would prefer I wasn't on them longer-term.

                              Comment

                              Previously entered content was automatically saved. Restore or Discard.
                              Auto-Saved
                              Smile :) Biggrin :D Wink ;) Rolleyes :rolleyes: Tongue :p Cool :cool: Redface :o Confused :confused: Eek :eek: Frown :( Mad :mad:
                              x
                              Insert: Thumbnail Small Medium Large Fullsize Remove  
                              x
                              Working...
                              X

                              Debug Information