LUPUS UK
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Questions about Disease Activity and Plaquenil dose

Hello all,

I had an appointment with my Rheumy this past week and she told me a couple of surprising things based on what she says is "new research"...

-disease activity in Lupus patients decreases with age.

-Plaquenil use is shown to have a greater effect on the retina than previously thought.

Consequently, she has decided to LOWER my Plaquenil dose to 300 mg a day from 400 mg a day. This despite the fact that my joint pain and other "disease activity" is pretty much the same if not worse. I am also on Benlysta infusions once a month and LOTS of ibuprofen and Alleve. I've only seen her twice (this past appointment was my 2nd). I don't know how she can make these decisions about my treatment without knowing me a little better.

Oh, and one kind of important thing...she says that my labs are all good. So why change anything? I wish I had thought of asking her that when I saw her but you know what it's like when you get in that little room. I guess I was so shocked at what she had to say that I was left speechless.

Has anyone else heard of these new research findings? I should mention that I really have a lot to be grateful for, none of my vital organs have been affected by lupus. Been diagnosed since 2013. Have always had good doctors up to this point and only had to make a change this year because of insurance. My last doc was amazing.

Thanks for listening!

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Very interesting: glad you posted. I’m 64 and here in the UK my case of SLE has long been classed as “moderate”. My lupus was infant onset.

I’m replying because am in care with a top NHS Rheumatology Lupus & Vasculitis clinic at an internationally respected university hospital. At a recent long involved appt in clinic we had a lot to discuss, and right at the end my consultant (our head of lupus clinic) changed my hydroxy dose from 400mg per day to 200mg/400mg alternate days (which amounts to 300mg). There was no time to question/explain this, but, because my SLE etc disease activity remains “moderate” despite my age, i assumed there is good reason for dose alteration. So your post interests me greatly

I hope Lupus UK is looking into what’s up with our hydroxy dosage and publishes something about this subject in our News & Views mag. I have been imagining something had come up in current research, but i’ve not seen anything published officially on this subject. Maybe others have. Am looking forward to reading replies to your post as they roll in!

my NHS daily combined therapy treatment plan for moderate SLE is carefully tailored to my version of immune dysfunction & connective tissue disorder. It includes therapeutic doses of: hydroxy + myco cellcept + prednisolone + amitrip + losartan (+ various daily maintenance meds for various multisystem secondaries including Sjogrens, small vessel vasculitis etc, and also for pre-immunosuppression meds-onset Primary Immunodeficiency Disease hypogammaglobulinaemia including coamoxiclav...+ I have Hypermobile Ehlers Danlos Syndrome (hEDS)).

So, ok, my “disease activity” generally hasn’t reduced significantly with age...if anything it’s progressively worsened in all my body systems, but, meanwhile, my meds greatly increase my quality of life...i know for sure, because for decades earlier in life, and more recently every now & then, i have had to be off meds due to various complications and it’s always been crystal clear i was meanwhile missing the positive effects i get from the right bespoke prescription treatment plans (eg this spring & early summer i was off all meds except pred...meanwhile SLE soft tissue + joint pain increased).

So far i haven’t experienced any significant negative side effects to any of my meds, although my general multisystem condition is constantly monitored closely. I’ll just mention, though, that for sure self help/lifestyle management also continues to make a huge pos diff to my quality of life as i age...even though my disease activity hasn’t reduced much

Apologies for going on & on, but this subject is close to my heart

Thanks 🍀🍀🍀🍀 coco

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Thanks for your reply! I think finding the right medications to establish great quality of life is key to living well beyond the diagnosis. Wish my doc felt the same way. :-/

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So true! Am delighted Lily replied explaining about this current hydroxy research! Vvvv helpful! 👍😘🍀

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So very sorry to hear that you have been left shocked. There are indeed new guidelines. They are worried about irreversible retinal toxicity leading to blindness. I have been researching this for my book and the latest research published on 10 March 2017 by I H Yusuf et al concluded that "hydroxychloroquine toxicity is far more common than previously considered; an overall prevalence of 7.5% for those taking the medication for more than 5 years, rising to 20% after 20 years". They recommend that the new guidance on safe low dosing should be 200mg to 400mg per day, depending on body weight. I also saw my rheumatologist of some 5 years last week and she advised me of the new annual retina screening guidelines for those taking hydroxychloroquine long term. I hope this helps, very best wishes Lily

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Thanks, that is helpful. She did not get into much detail. I was at 400 mg per day before she changed my dose so I was still within these new guidelines.

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Me too: for years have been dosed within standard guidelines for my weight @ 400mg hydroxy per day with no probs & lots of benefits until my rheumy changed dose to avg 300mg per day in feb 2018....i get the feeling that “up to date with it” consultants may be sensing there is more spooky news coming via monitoring of long term hydroxy patients...time will tell...

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Good point! Thanks for talking me off the cliff everyone. I was getting ready to write an angry email to my doc tomorrow. Guess I'll wait and see what happens.

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Hope you’ll update us re how you do on 300mg daily hydroxy...i felt no obvious changes when i shifted to 300mg last feb, and i still haven’t noticed anything bad developing from the reduction in dosage, but i too am waiting to see...cause when i’ve stopped hydroxy totally there’s been a significant increase in joint & soft tissue pain + neurocerebral signs & symptoms....and last spring i even developed the only PID-related infection that’s broken through immunology’s daily hypogammaglobulinaemia treatment antibiotics (“walking pneumonia”)

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Hi. I take Placquenil too. Your dr probably doesn’t want you to get the side effects that are possible. I have had those appts when I didn’t know what to expect and sat quietly in shock. Now I keep a diary of symptoms and type them up to give to the nurse at my appts. She inputs into. O putter for dr. It really helps. This is how he came to diagnosis. Be careful with over 5e. Punter pain relief. I take them too but try to keep at a minimum since blood tests show them effecting my kidneys. Drink LOTS AND LOTS of water. Wishing you pain free days!

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That was supposed to read computer!!!! 😁

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I was seen at Moorfields eye clinic, St. George’s in a London this week. The doctor is monitoring me annually for retina damage. She told me that it is incredibly rare for anyone to suffer damage for taking Plaquinil and that she and many Rheumatologists were concerned that patients would be put off taking what is a very effective drug. The new NHS guideline recommends a retina check when you atart taking it and then every 5 y3ars after that. As long as you are monitored a- by the hospital, not an optician - some of those do claim to be able to do this!- it seems a small risk to take for the benefits.

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Very interesting, Marley!

I live in East Anglia and attend the NHS eye clinic at our small but well respected local hospital. Ever since starting daily hydroxy i’ve made sure to get expert eye checks including annual retina scans, visual field tests etc...at first by demanding these from this hospital eye clinic, but during the last few years they have stopped cooperating so i’ve had this monitoring done by my optometry practice, where i see an expert on immune dysfunction issues.

this year my lead cornea expert eye surgeon wasn’t in clinic for my usual 3 monthly appt. the registrar i saw instead fessed up that the NHS expects patients to get this sort of retina & visual field etc monitoring from an optometrist...& that only once such optometrist monitoring actually IDs retina damage will the NHS take over a patient’s care.

Feels to me as if this is yet another example of creeping privatisation in the NHS (alongside podiatry, dentistry etc etc). Am going to remember how your Moorfields eye consultant has advised you on this. Thanks!

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I’m glad you have a decent optometrist. I used to pay for scans on the recommendation of my GP. I was happy they were doing a good job until I was referred for cataracts and when I offered print out of the scans as part of the general review, they just waved them away at the hospital. That reduced my confidence somewhat. Sounds like you are in good, if expensive hands at least.

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Yes, i feel v lucky now. but i had 3 decades in the diagnostic wilderness before 2010 when several years of breakthroughs led to more convincing explanations of my lifetime of multisystem progressive illness + diagnoses + effective treatments & appropriate monitoring. But, first I had to survive a lifetime of lazy medics, both NHS & private (including optometrists) who were both expensive (wasting my time &/or money) and the opposite of insightful + proactive.

Unfortunately i was born infertile (due to DES exposure inutero) and, as extremely sad as i am that my comorbidities mean i’m unable to raise offspring, i sadly realise this helps me fund certain crucial aspects of health care privately eg retina scans. And every day i am thankful for Lupus UK + this wonderful forum because the solidarity + generosity of you and others here always is a HUGE help 24/7...so thanks again, Marley!

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About two and a half years ago my rheumatologist told me that new research indicated that I should reduce my dose of plaquinel, or even stop it entirely. I looked on Europe PMC and discovered the research that Lily described. The article that I read, a large Scandinavian study, concluded that if long-term users cut down (in my case from 200 mg to 100), the risk would go down to 5%. I tried it for a year and found that I felt exhausted and icky, barely able to function. My new rheumatologist (I moved) encouraged me to return to my usual dose and I am feeling much better. It is hard to choose between risk of blindness and quality of life.

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Very helpful to me, Paloma: thanks. I agree! I’ve had the same sort of experiences off hydroxy fir up to 5 months, and so far have have no apparent negative side effects even after 7 years on hydroxy

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I had to have two eye tests the first year when I started Placquenil and when tests were fine once a year thereafter. I usually get every symptom possible from drugs but none with Placquenil - only relief.

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My rhematologist advised me 6months ago to start reducing my hydroxychloroqine after taking it for over 20years , she advised me that new findings recommend not to take it long term. I am now off this med completely . However for the last 5wks i have been in terrible pain with my right foot and ankle it is throbbing continuosly.I am still taking methetrexate and have been on this for aprox 5 years. I was wondering if the pain is due to coming off the other meds ??

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You’re very experienced and will figure this out i’m sure, Susan, but i can at least say that when i come off hydroxy my chronic joint & soft tissue issues definitely always flare: synovial sacrum joints especially + joints in ankles, feet, shoulders, elbows, wrists, big thumbs...eg i’ve just resumed daily hydroxy after 9 weeks pause and all my joint & soft tissue pain damped down within 3 days. I hope you can damp down this miserable ankle & foot pain soon (all my life i’ve suffered a lot with SLE-related chronic foot pain especially, so am greatly feeling for you). Take care

🍀🍀🍀🍀 coco

PS like you am on combined therapy treatment plans, eg for my lupus: hydroxy + myco cellcept + prednisolone + amitrip + losartan

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Hiya I've been on hydroxychloroquine 15 years started on 200mg daily, and then about 3/4 years ago rheumy tried getting me to only take it 3 days a week ...that wasn't enough for me so I cut to only having it weekdays (ie 5 days a week) and then to every other day around 2 years ago (rheumy was pushing to 3 days a week but I've had to stick at the slightly "higher" every other day)

Rheumy was doing this because they said the retinal side effects of plaquenil were much more likely the higher the dose , and the longer term the drug was taken. I still get fatigue and pain (manage that with other techniques, pace activites, pain meds etc) as I do still have "acceptable" life and me and Drs want to avoid steroids / stronger biologicals and also Rheumy feels my plaquenil is having good effect as I remain "mild and stable" ... as in very few full on flare ups, and no organ involvement so didn't feel up the dose again would benefit me.

My last rheumy appointment as my pain was gettting worse we did discuss higher dose of the hydroxy but rheumy said that if we were to go back to 200mg daily then due to new guidelines I'd have full eye check / "all clear" first .. done by hospital based opthalmology

For now I'm trying alternatives such as physio and extra pain meds rather than change my plaquenil dose up

I've always been told to have annual eye tests and to make sure the optician knew I was on the hydroxy as there are specific tests they check every year including doing the "amsler grid" and visual fields test High street optician (yes I go to specsavers!) can do these tests and retina photo , and apart from one referal after last years checks (for a possible glaucoma check) they have never felt the need to refer me to hospital specialists, but they clearly say they would if they felt I needed it

...In discussion with the specsaver opticians from what they say none of them have ever seen retina problems linked to hydroxychloroquine, so they say it is very rare

There is are some new guidelines ... I think the macular society recently published them, so it may be interesting to see how this impacts on SLE treatment guidelines in future

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