I saw the rheumatologist a couple of weeks ago and was referred for OCT (Optical CT to be done at the Eye Hospital), which apparently is a recently developed strategy to check for retinal damage caused by Hydroxychloroquine, that wouldn't be picked up by retinoscopy done by an optometrist. I think I was referred because I've been taking HCQ for more than 5 years.
The rheumatologist also weighed me and reduced my dose down from 200mg twice daily to 200mg twice daily/200mg once daily alternate days, ie effectively 300mg/day. Sadly, there isn't a 100mg tablet so I've had to buy a small dosette box so that I don't have to try and remember what dose to take each day!
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skylark15
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I’m very glad you’ve posted, skylark: thanks! Cause your news & Bebe’s reply are helping me get my stuff in perspective
I’ve been on daily hydroxy 400mg for 7+ years as part of my oral combined therapy SLE treatment plan. My weight is always around 60kg. but in feb at my last rheumatology appt with the chief of our lupus clinic, she reduced my dose to 300mg (200mg/100mg alternate days). This was at the end of a 45 min consultation focused on my gastro & feet stuff, so we had no time to discuss “why” my hydroxy dose needed reducing...although i would like to know, especially as every time i’ve had cause to “pause” hydroxy, my neuro-cerebral signs+symptoms have flared.
Anyway, now i’m up to daily 10mg pred long term, i seem not to be missing that extra 100mg of hydroxy, phew. My univ hospital is a ‘Lupus UK Centre of Excellence’, so i’ve been telling myself that something about hydroxy must’ve surfaced in current research to make my lupus chief reduce my dose...and i’m hoping this will be explained eg by an article in LUK’s News & Views mag, or something
So, in March i attended a regular 6 monthly NHS ophthalmology/eye clinic appt. i’m in care there with the Cornea Team, on a daily combined therapy treatment plan for my early onset sjogrens/SLE/PID dry eye + cornea inflammation (hyloforte drops + artelac nightime gel + meibomian gland eye bag treatment&massage + ciclosporin (ikervis) drops):
For years now, each time i’m in ophthalmology/eye clinic i double check their current protocol for monitoring me re side effects of my daily lupus/PID meds (hydroxy + myco + amitrip + coamoxiclav). This time my cornea team expert consultant told me point blank that the NHS now expects optometrists to conduct the relevant standard monitoring tests my eye clinic used to give me due to my meds, ie visual field test (eg re hydroxy-related macular degeneration), eye pressures (eg re pred-related glaucoma) etc. AND he also confirmed that they expect me to be seeing an optometrist capable of up to date retina monitoring (ie better than just via retina-scope),
So, i told this ophthalmology/eye clinic cornea team consultant that, in my case, my optometrist regularly uses Optimax Retinal Examination technology (aka Optomax: captures a 200° high-resolution image of the retina in a single shot-- without dilation) & HD OCT eye scanning equipment (an ultra-widefield retinal examination) both of which i pay for. The consultant said: Fine, and make sure he also monitors you for ciclosporin-related CIN: “Abnormal cells on the surface of the conjunctiva is called conjunctival intraepithelial neoplasia or CIN. If you have this you may have topical chemotherapy on its own. If left untreated, CIN may turn into invasive squamous cell cancer”, excerpt from: cancerresearchuk.org/about-...
So, in june when i saw my immune dysfunction-expert optometrist we discussed all this monitoring...he sort of gulped & said: RIGHT!
I see my eye clinic Cornea team consultant again in sept and will ask him about this change in long term hydroxy dose + the possibility of NHS monitoring via Optical CT...my suspicion is that the main reason i’m not getting this monitoring at NHS ophthalmology eye clinic is that i’m with the Cornea Team not the Retina Team! This is especially intriguing cause I attend a pretty big collection of multisystem clinics regularly for monitoring & treatment and my impression is that sometimes my care is allocated to one type of specialist team only, when in fact i should be under 2 types of teams simultaneously (as i found out when i began to be seen by 3 types of gyn: a vulva clinic gyn consultant + a uro-gyn + a gyn concologist) ..but i’m no expert
Apologies for the LONNNNNG reply, but this subject is close to my ❤️ & 👀 😉
Hi BC, Just a quick reply for now. I recall several members recently mentioning that their dosage of HCQ had been reduced by their rheumy as well. I can't remember the exact reason but try searching the posts in this forum. I think it was revised recommendations on long term use.
👍👍👍👍Yes, thanks Bebe: me too...i remember a few others mentioning this sort of adjustment to their hydroxy dosage, but my feeling is that so far we haven’t spotted or been given a specific NHS directive, or a link to BSR advice or published research references explaining the reasons for this sort of dosage correction as part of official hydroxy protocols....i’ve searched, but these days am in a long drawn out “bad” phase due to protracted NHS multidiscipline investigations re a segue into Intestinal Failure stuff & am not in great shape for finding info like this here or online....so, am hoping someone gives more solid info in reply to Tess’s post. Maybe Paul Howard at LUK headquarters can help us re the most up to date NHS rheumatology & ophthalmology guidelines on all this?
I do, though, remember a relatively recent article in LUK’s News & Views about current officially approved research indicating the benefits of daily hydroxy are proving even greater & more cumulative long-term than had been thought...
To me, Tess’s post is extra interesting & helpful cause it combines info relating to the overlap between NHS Rheumatology & Ophthalmology/Eye Clinic protocols: her rheumatology consultant is specifying both a correction to hydroxy dosage + a type of eye clinic/optometry practice retina imaging technology for hydroxy side effects monitoring.
every time i mention hydroxy monitoring at NHS eye clinic, the consultant confidently asserts that i’m on the right dose for my weight + that side effects are very unusual before 7 years of continuous daily hydroxy treatment. And now eye clinic is sending me to my optometrist for high tech hydroxy side effects monitoring
So, knowing a handful of others had mentioned hydroxy dosage reductions here, I’d been guessing my consultant’s adjustment to my dose was cause i’ve been on hydroxy 7 years now. And I’d been figuring NHS ophthalmology/eye clinics policy is basically pushing the creeping “privatisation” of hydroxy side effects monitoring (more ir less the way NHS & private dentistry protocols etc are evolving)
Anyway, if my ophthalmology/eye clinic &/or rheumatology clinic come up with more solid info on hydroxy dosage protocols & the officially recommended imaging technology for monitoring side effects, i’ll post it here
Again, apologies for going on & on about all this,...last year a dear friend come down with the worst type of macular degeneration and her treatment process ordeal has got my ears permanently ULTRA pricked up re retinal screening + monitoring...
PS Have just messaged Paul, asking if he is at head office office & has a mo to read Tess’s discussion and up date us on current NHS guidelines re long term hydroxy dosage + retinal screening & monitoring
Good morning and thanks for your reply. This is just a quick note to say that the time from referral to my initial OCT appointment was just 4 weeks and it is on the NHS. We are lucky enough to have a separate, specialist NHS eye hospital here in Bristol.
I'll message Paul as well and ask him if perhaps the service varies from region to region.
Many people with lupus across the UK are having their hydroxychloroquine dose revised at consultations at the moment, especially is they are on the relatively higher dose(s) of 400mg+/day. A lot of people are now being instructed to change to the 300mg/day equivalent dose, just like you have. In response to Barnclown , we are in the process of asking clinicians to write an article fully explaining the rationale for this widespread change of dose - we really hope we can have it available for the next edition of News & Views magazine (which will be published in November 2018).
The reason for this reviewing of hydroxychloroquine dosage hasn't been officially reported to me, but I believe it is in response to the Royal College of Opthamologists' clinical guideline which was published in Feb 2018 - rcophth.ac.uk/wp-content/up...
The guideline reported higher levels of hydroxychloroquine retinopathy than previously reported and revised the maximum daily dose from 6.5mg/kg to 5mg/kg.
The guideline gives detailed information about the screening that patients should receive annually after five years on hydroxychloroquine. These are more in-depth than in the past so some people will be receiving referrals to ophthalmology for their first full screening this year. As far as I have heard, these screenings are generally being done within the NHS. According to the guideline it is the responsibility of the prescribing physician (as per GMC guidelines) to refer patients eligible for screening to the local hospital eye service.
🤩 WOW: THANKS Paul‼️. your reply is SPOT ON! And VVVVV timely for me: i’ll be feeling much better informed when i ask rheumatology & ophthalmology about this in clinic soon. Am looking forward to the News & Views article! And, also: thanks to all involved in your summer issue, which arrived in today’s post! 👍
That's really helpful, Paul, thank you. Now what we need is a 100mg hydroxychloroquine tablet... Unless someone has more up to date information than the pharmacy advisor at my GP surgery, who says that it doesn't come in that dose?
Hydroxychloroquine is currently only available in 200mg tablets, but we should have news in the next magazine about the first 300mg tablets which will hopefully be available from early 2019.
I have been on HCQ for over 20 years and I have had one test in all that time. I have now developed cataract in both eyes one has been treated but since that three years ago I have not had any checks.
This is the dose of Hydroxychloroquine I’m on. 2x200mg for two days then 1x200mg for one day. Luckily it works out that a new strip always starts on the first day of a 2x200mg day so I can keep track of what to take on what day. Xx
Thank you so much for your reply and howard for his information. As I take 400mg a day and have done for over 20 years I shall certainly be asking why I haven't had a referral. Thanks again for posting.
Hi my hydroxychloraquine was reduced to alternate 400mg, 200mg alternative days last year. This year they further reduced it to 200mg daily. I'm not feeling as well as I was on 400mg a day. My rheumatologist said it's so they can keep me on it as long as possible. I already have 6 monthly appointments at the eye hospital due to retinal vascular occlusions, uveitis and ocular hypertension. I also have 6 monthly retinal photography screening and fields tests. Im going to reduce my weight to help with the medication reduction as I've gained 10 lbs this won't help. Fortunately I do slimming world so I will get in down quite quickly. Hopefully I will see an improvement because at the moment I can feel my neuro problems worsening x
Thank you for your reply. I'm sorry you aren't feeling as well as on the 400mg: my daughter whose dose was reduced from 400mg says the same. She hasn't been on it as long as I have so she's not in line for the OCT screening. It sounds as if you have someone keeping a very close watch on your eye problems and good luck with the slimming world. That's something else you have in common with my daughter!
Hi, I saw my Lupus specialist last week and she told me she was making me a special appointment with the eye clinic as I have been on them for over 30 years. I was yold it was a New test they are doing and not the normal one I have every 6 months.xx
Rheumatologists across the country seem to have been made aware of this new guideline recently, so doses are being reduced and people are being referred. I'm glad your Lupus specialist is acting.
Hi, I'm on 300mg of Hydroxy too, however I've only been on it since my diagnosis 8 months ago. I was recommended to have an eye test done at my Uni's Optom department which is free when you have students doing the work, but I went privately because I missed that window and I required a normal eye test and then a photo of I believe either my maculars or retinas but it cost £45 in total! I've been asked to do one this year because I've never had an eye test and then one in around 4 years time.
Don't be silly like me, if you can find Optometry Student Clinics, go for free, but they only do September - May!
Thanks for your reply and sound advice! As you've only been on HCQ for a few months, you may not need the OCT examination but it might be worth having a look at the link given in Paul Howard's reply to me yesterday, see above.
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