I had to stop plaquenil 3 weeks ago because of low White cell and neurophil count , since then ive been tired , achy and my eyes have been drier . I had an appointment today with my trusty optican, discussed dry eyes and told him i have been seeing things in the corner of my eyes like something moving . The movement is probably floater or bits of the jelly in my eye which he is going to do another test on Monday to check retina. The dryness in my eyes has got worse , i told him in use hyloforte drops about 4/5 times a day , he told me not to use it more than that as can cause problems with natural oils in eyes ! He also told me to to continue with heat pack and massage eyes afterwards. He suggested these capsules i have posted picture of as the combination helps with dry eyes. Has anyone else tried them ? Im going to find out cost Monday as he has only got them in . I was surprised about only using drops 4 times a day , I really hope i can start plaquenil again soon 🙄
Optican advice and plaquenil 👁👁: I had to stop... - LUPUS UK
Optican advice and plaquenil 👁👁
Good morning. I have not tried that. I've also noticed the same issue of seeing things in the corner of my eye sometimes but I had my eyes checked and they were ok. Did he check your retina for the plaquenil buildup? I still get really dry eye when there's no humidity in the air so I use a humidifier near me and moisture eye drops like you but I have a friend who was prescribed Xiidra and she really likes it. I was thinking of talking to my eye dr. about it.
Hi there , im getting more detailed check Monday but he thinks all is fine . I have never heard of Xiidra i did a quick check and it looks really expensive ! Im getting a eye massager as well on monday , i have so many medicines and devices I don’t know where to put them all LOL
Here there are coupons online that pay for most of the cost. don't know if your pharmacy accept them or not. Have you heard anymore about your WBC count? still high or low?
Im under NHS so not sure if its prescribed here . My WBC is still going up and down , ive just got this weeks back and its up a bit again, still waiting to hear from rheumy if can go back on plaquenil , I think shes on holiday this week. How are you keeping at the moment?
maybe she'll have good news next week. I'm doing pretty good (knock on wood) all of my co-workers have come down with stomach bugs and sinus infections and I've managed to escape it. 
That’s good news ! Hope it stays that way 😀
and I know what you mean. My night table is full with a humidifier, eye drops, water bottle, dry mouth spray, lotion and vics to combat all the dryness I have no room for the tv remote. LOL
Its had to explain to anyone, going on a flight is a nightmare with security!
I buy travel size to put in my purse, I hope that helps you! Have a safe flight!
Sorry to hear you are having problems with your eyes Weathervane 
It's interesting to hear that you are seeing things moving in your vision - I have noticed that since starting on hydroxychloroquine I have had a massive increase in the number of floaters and debris in my own vision. I have queried this but just get a shrug and am told it's typical when you get older - not so sure as this was before I turned 50 and was noticeable in the suddeness of onset.
The Omega supplement I'm afraid I don't know but is likely to be expensive as others have said. I recently saw the Scope Opthalmic version (made by same company as Hyloforte) at the BSSA meeting - looks very highly concentrated stuff - that one is only Omega 3 - but costs £35 + per 200 ml bottle! However, if you've not taken Omega supplements before, they DO make a difference to dry eyes - you can get high strength Omega 3 quite easily on the high street. Omega 7 is more expensive generally but this did seem to help my 'dry gut' issues - I've stopped it for now and am just taking Omega 3 at the moment. I know a lot of people do take both on an ongoing basis. I do definitely notice a difference in my eyes if I forget to buy them and have a break before starting a new box.
Hello SjogiBear
I am just reading some of the latest posts. Children back in school today after 1/2 term so I have a little time to myself to catch up a bit. At my Rhemuy appt last week, I told him that I had started getting styes and he has said possibly blepharitis and underlying mild sjogren's. This is the first time this has been picked up on for me. So I have a lot to learn. He has receommended Hylo Forte drops and I need to see my GP about this and his other recommendations. But your reply about the Omega oils interested me. I have taken Cod Liver Oil on and off most of my life. My Mum gave it to us as kids, the liquid form - yuck! And then as an adult I took the capsules. Do these help dry eyes? Or are there Omega eye drops? Just wanted to clarify, being new to this.
Thanks
Wendy x
Hi Wendy
Hope you can enjoy a little bit of peace and quiet now the children are back at school - i can never get much done in holidays!
It does sound more and more that you do have Sjogrens going on - I didn't start getting the eye stuff going on until the end of my 40s really. The Omega 3 oils are taken orally usually in capsules but you can still get bottles and take it by the spoonful if you are brave enough ☺ - it is one natural supplement where there is scientific studies done to show it works - Omega 7 sea buckthorn oil is good too but expensive.
I have been using the eye mask over the past couple of weeks and that is effective too and at least is not taking yet more medication. I like the Scope one as it's not stinky!
Thank you for replying.
Good to know. Maybe my years of supplements have helped then?!
Like I said I've taken them on and off most of my life. But when I had my hip operation in 2013 and was told I had osteoarthritis in both hips beyond what I should aged 39, I asked my surgeon about them. We discussed how I could slow the wear and tear down. He told me to take glucosamine supplements. I asked him about my cod liver oil supplements and his reply was I am not officially allowed to recommend them but they certainly won't do you any harm.
So I have taken them every day since.
I had my annual eye test today - as in hydroxy - and optician told me he can see signs of dryness in my eyes. So I must start to educate myself now.
Off for a nap now, before getting kids at 3pm. Yes, I love the school holidays and having the children home but the house is a tip!! X
Hi SjogiBear,
how do you know when you have dry gut? What are the symptoms?
I had poor gut motility with constipation but I was still 'regular' so it wasn't the kind of constipation where I couldn't go to the toilet for days. I was also getting abdominal pain on the left hand side of my belly. Taking the Omega 7 alongside the Omega 3 did help this problem to subside (I didn't take it as a stand alone supplement so I cannot say whether it helped on its own or in conjunction or indeed if it was entirely coincidental and just a placebo effect).
There is anecdotal information out there plugging Omega 7 Sea Buckthorn for digestive problems as it appears to help with damage to mucosal membranes:
BTW have you checked your eyesight on the Amsler Grid regularly to check there's no distortion in vision?
allaboutvision.com/conditio...
I also meant to mention that I have bought the Scope moist heat mask to go on the eyes each morning and that is something I WOULD recommend for the price scopeophthalmics.com/shop/o... You can also get it in Boots (and I'm sure other places too) and I have found it to be excellent and much better than the wheatgrass type eye bags you see around. This doesn't smell nasty and you can wash it too in due course which also appeals to me . . . and for under £10 it's a bargain!
Thats strange my floaters got worse since I stopped the plaquenil ! Thats great info about the omegas , i will wait to see the price before i get it as the have a similar one in boots . I also use the scope eye mask , but i need to use it every day and I keep forgetting. Its a days work managing everything but i must not complain. I ve just been to see Breathe a film about a guy who became paralysed after polio and how wife managed to get him home with a portable respirator- it sound grim but it was brilliant, an amazing true story. Xx
Hi, I'm new on this site, I have MCTD but have had dry eyes for years, the only thing I've ever been prescribed is viscotears, my eyes are worse at night, sum times I wake up and my eye is really stuck and sore. Been on hydrox for 2 months now and have started seeing things moving about. My optician said my eyes were OK in June, did your rheumy doc advise these masks etc or was it your optician, I'm seeing my rheumy doc on Tuesday, I wonder if she will check my bloods again, X
Hi lizard , my eyes have not been too bad at night , the hyloforte drops i use were highly rated by the optican who suggested the mask . Did you tell your optican you were starting hydroxy as you have to have yearly checkups when taking it . Good luck with your rheumy, she usually just checks mine before rituximab treatment.
Hi W and all commenters. Nothing much to add apart from to say that one of the UK’s Sjögren’s experts and my star optician and new ophthamogist have all recommended my prescription repeats as the perfect mix.
These are: 1. Artelac Gel (nights - but not too viscose so I use during day too as it gives longer lasting relief),
2. Hyloforte for instant relief 4 x a day,
3.Lacrilube for occasional overnight use when eyes are flaring (I’ve used this all my life to very good effect ie no scarring on surface of my eyes/ corneal melt but it does cause blurring and contains lanolin).
4. Celluvisc single use drops for when out in evening wear with small handbag (never in my case lol!)
5. A Meibomian Gland kit which my optician sold to me complete with gel eye pad to heat in microwave for 15 seconds and a massager that looks like a silicone clitoris!! I have to use this daily.
I also wanted to say that I’ve been told by several opticians now that some complain of gritty dry eyes but only have mild Sicca whereas others are unaware of how bad things are until scarring and corneal melt are discovered. So being very symptomatic isn’t necessarily a sign of severe Sicca and vice versa. If you have a rheumatic disease then the surface of your eyes requires regularly checking however fine they feel. And if you have drops then remember to apply them regardless of whether or not you’re on Hydroxy or how dry or moist your eyes are feeling.
Xx
Practically my regime although I use unlicensed Ciclosporin ointment at night!! I notice my eyes wake up more dry in winter 😠
Yes me too - haven’t got balance between being terribly troubled by low body temperature and affects of central heating right at all!
It's awful isn't it! Have you got punctal plugs?
Yes just had them put in a few weeks ago. Helps a bit but I’m terribly fair and bad blepharitis so I keep rubbing them!!
I've had all four for a long time, funny only one of them irritates me! Try not to rub them as I've just had my irritating one replaced so I can only assume it's lost in my head somewhere! !
Ha ha that thought made me laugh! More likely it’s somewhere in a pile of dust mite in your room - very tiny aren’t they?! but if one of mine goes in rather than out it won’t make much odds to me as got a face full of weirdness as it is 😎😝
I just think of that person that had about 30 contact lenses stuck in their eye & they're much bigger so we'll be fine!! 😆
Yeah absolutely - what’s a bit of silicone the size of a grain of rice to us brave Sjögren’s warriors?!
Last week my optician found the longest eyelash lodged across my eye that he had ever seen. He removed it and said “that will feel a whole lot better now eh?!” I nodded politely but to be honest I didn’t notice any difference at all lol!!
Exactly! Ha, if only they knew!! ☺
Hi there , i hope to get an eye massager on Monday, should be interesting! I don’t use night drops as i seem to be ok at night at the moment so im holding off . Just realise I forgot to use the eye mask again - reminder now set !!
I guess that’s the point that keeps being reinforced to me W - keeping eyes moist with drops and gel is only the way to try to ensure no damage occurs to eye surface. If you have Sjögren’s they can get very dry and you may not even be aware so overnight gel care is advised. Maybe seek a specialist’s input rather than an optician? As my specialist optician said “no one in their right minds wants to get the kind of surface scarring I’ve seen from untreated Sicca - and it’s often those who have had no symptoms that are worst affected”.
Good luck with the massager!
I have been referred but may have a bit of a wait☹️
You can buy Artelac Gel or Lacrilube over the counter while you wait? X
Have you ever taken the omega supplements ? Im tempted by them if I thought they would be of benefit- though the thought of more tablets does not appeal 😝
I have but they made no noticeable difference to my Sicca?
Anyway I can’t afford the cost of supplements just now. But for me using Lacrilube and Hyloforte over the past 40 years has meant that my Sicca has remained relatively mild.
Not wishing to scare you but being Ro positive apparently means you’re more at risk of corneal damage so if I were you I really would use a gel such as Artelac overnight if possible, regardless of taking omega supplements or not. Your optician might not be aware of this autoimmune stuff. Mine wasn’t. Using a good gel overnight won’t hurt and may save your eyes from permanent damage.
academic.oup.com/rheumatolo...
Mmmmm , im seeing him again on Monday so i will discuss that with him . His mother-in -law has sjogrens, I didn’t like to ask what treatment she is on .
I think about 50% of those with Sjogrens will just have sicca badly - but not all the systemic stuff you have on top. My optician’s wife has MCTD but he didn’t seem to realise that, for some Sjögren’s is a systemic disease - let alone a neurological one! Perhaps you could print off the link about this that I’ve attached? That’s what I’m going to do for mine.
I was thinking of doing that ! He gave me a very good leaflet from the college of optometrists about dry eye and another about flashes and floaters.
He sounds great. It’s just that dry eye affects so many more than just those of us with Sjögren’s. And Sjögren’s is such a complicated and varying disease that it’s extra important that they can distinguish between the various manifestations re ongoing care. Xx
Ps. You can see a version of the leaflet and short videos about these conditions at lookafteryoureyes.org
PS there’s a post about Sicca on Vasculitis UK from Lynn Keyes who comes here sometimes too. She’s posted a good video of Dr Price speaking about Sicca treatments. X
I spoke to rheumy Nurse about taking omega supplements and she said there would be no issues re reacting with my meds so i might give them a go for a while.
Ive just been out for a wee walk with my husband , blue sky but about 5 ‘ . I didn’t have gloves and the joints in my hands are now aching sore and eyes are stinging. I definitely need to change my habits, gloves , hat and sunglasses I think 🙄
That’s me - even sometimes during the Scottish summer! 😎☃️🤹♂️🤷🏼♀️
I was only on hydroxychloriquine for 4 months, during which time my WBC and Neutrophils were down. I felt very unwell, as I had to have antibiotics 4 times, during those months. I suffered recurring sinusitis, chest infection, ear and throat infection. For me, it was a relief coming off hydroxychloriquine.
I now take Sea Buckthorn Oil Capsules, - Omega7 SBA24. They contain Omega 3, 6, 7, 9 and Vitamin A.
Omega/sea buckthorn, was advised by an Opthalmic consultant, at BSSA meeting I attended. She recommended them for Sicca symptoms.
I purchased my capsules from Holland and Barrett. I chose them because they are supposed to, "maintain normal structure and function of the skin and mucous membranes, such as in the eyes, nose, mouth and female reproductive tract". I paid £17.99, if I remember correctly, for a pack of 60 capsules.
Since I started taking them, (I do only take one a day, not the 2 recommended), I have reduced eye drops to once a day. Though, I do twice daily, bathe/cleanse eyes, with blephasol lotion. The lotion has helped a lot too. I also used to depend on my eye mask, purchased from Boots, during flare of eye symptoms. However, I have not needed to use the mask since starting the capsules.
Coming off hydroxychloriquine, was easy for me, because recurring infections, lots of antibiotics, and low WBC, and Neutrophils, seemed a poor trade off, to benefits. I reasoned, my immune system was flattened, at the very time I needed it, during the winter months, so I bought Vitamin C, to help boost my immune system instead. I have since been diagnosed with fibromyalgia. Lol. I guess that's the trade off giving up hydroxychloriquine!
We are a funny lot, never satisfied, but we do our best, don't we?
Good luck, weathervane, wishing you well, hope some of this was helpful..
Thank you for that webar ! I have been on hydroxy for over 2 years and its only troubling me now - or it could be the rituximab? I hope to hear from rheumy Nurse soon she was talking to doctor to see what I should do . Very interesting info about the supplements you are taking , i have a feeling the ones the optican will be v expensive. I looked in boots and the most similar was £20.00 i will check out Holland and Barrett on monday . Good luck with all , hope you find way of managing the fibromyalgia xx
I must say that being in Scotland has advantage of free prescriptions but supplements aren’t included of course apart from AdcalD3 for me.
I’m a terrible sceptic about supplementing I’m afraid - I’m just not in the income bracket to risk blowing money I don’t have on supplements my medical team tell me I shouldn’t be taking. The only exception is B12 which I buy online and take daily. My rheum seems fine with this as my levels are good.
The thing is Weathervane - you and I are pretty unusual for pSS sufferers in that we are both on big drugs compared to the vast majority. So you should only take supplements your rheum agrees to.
Although Hydroxy gave me anaphylaxis after 18 months, whereas Mycophenolate has been very tolerable - Mycophenolate is a big drug compared to Hydroxy. In fact as far as I know Hydroxy is pretty mild, potential eye problems aside.
I mean of course some can’t even tolerate Levothyroxine so we all have allergies to different things - but otherwise it’s not really an immunesuppressant and doesn’t require monthly blood monitoring unlike all the other DMARDs. I think Rituximab is the very big gun and most with Sjögren’s don’t begin to qualify for this drug. Also like Webar, Dr Price explained that Sjogies are a naturally anxious lot and won’t agree to take many medications at all. X
I was going to pass it by my chemist who is great . I only supplement with vit d on prescription , i take so many tablets that i hate the thought of adding more . Im considering these as they may help in the long run .
I understand. I struggle with take 18-20 tablets a day myself without voluntarily adding extra ones I may not even benefit from. I still think you should ask your rheum though because your chemist doesn’t know as much about your disease or about Rituximab.
I am seriously contemplating giving up on all my drugs apart from Levothyroxine and finding out more about LDN. I read such good things and an told that I won’t qualify for any other meds’ if Mycophenolate isn’t working. Nothing to loose and ginger, turmeric, omega etc sound much nicer don’t they?! X
I think that is one to discuss with the rheumy as well . I haven’t thought what i would do if i had to come off the meds 😔
I think my neuro symptoms are progressing and there are no meds for this so I’m having to think about it. Hopefully there will be other possibilities for you if you can’t carry on with Rituximab. 🤞🏽Xx
I don’t think at the moment i have any alternatives either . Just have to hope that medical research comes up with something
Ps chroniclelive.co.uk/news/he...
My sister sent me this a while ago , so there is research being carried out
It is hopeful - Dr Price told me about it. But sadly people with neuro Sjögren’s often aren’t included because they don’t have RO - they have to be lip biopsy positive but are excluded from trials. So we only benefit from these trials indirectly as a trickle down affect. To be honest my neurologist and rheum tell me that damage to my nervous system has already occurred so it’s too late for me anyhow. Hopefully not for you although the low WBCs is a bit of a nightmare for you where most of the DMARDs and Biologics are concerned. Maybe Mycophenolate would be effective for you? I know Clare76 takes it and Hydroxy despite Neutropenia so she’d be a good person to advise I guess? Xx
We just have to be positive and have hope xxx
I feel very hopeless these days I admit. Something about being numb and dizzy 24/7. I actually wish sometimes I had MS as my symptoms are same but I don’t have the support network. I think Sjögren’s is a very isolating disease because of the hugely different ways it can present just like this link you post says. My neighbour told me that her local hairdresser was saying she has it and she thought maybe I had it too. She suggested we meet each other but I think, if she can stand up and work as a hairdresser then she will have a completely different kind to me. Can’t face having only dry eyes and mouth in common? Xx
PS I have an RA friend who stopped Methotrexate and Enbrel because of low white blood cells. She’s doing really well on Hydroxy now though. X
I end up not talking about it and if anyone asks i say im grand , it’s impossible to explain to most people. I have tried to find Clare76 but i am having no joy finding her posts 🙃
Sorry it’s Clare67!!
Here’s one post - I know she has neutropenia but can’t scroll through all her posts so will leave it to you - you could PM her she’s very friendly!
Rise in wbc
Its ok , theres no need 😀 with a bit of luck the rheumy nurse will get back to me next week and we will have a chat . Xx
Thank you LOL XX
Hello weathervane
I am sorry about your eye issues, but I need your help on the low white blood cells and low neutrophils and stopping plaquenil? could you please elaborate on that. I have always had these almost all my life even before I was officially diagnosed with Lupus and it continued and no doctor ever commented on that..so any information you can provide me with will be very helpful.
Thanks!
Hi dooney , im not sure if i can be of much help ! My white cells have always been a bit low even before treatment but now they have sunk lower wwc was 2.4 and neurophils were 1.2 . Gp at this point told me to stop the plaquenil ( 4 weeks ago ) and has checked my blood every week. My count went up initially and then down again and now last week it was 4.5 and 2.4 . I phoned the rheumy nurse who thought this yo yo results was unusual so she was going to talk to consultant who hopefully get back to me this week. The gp commented that a better check should have been kept on my bloods . I would like to go back on plaquenil but i am more worried that this will affect my next course of rituximab due in the new year. I have managed to keep well dispite low wwc by being careful with had washing etc . Im afraid i have no answers for you at the moment but i will badger rheumatology to try and get some idea of what’s going on. I hope you keep well 🙂
In the Us we also have a gel that I keep on my nightstand genteal I put a bout a 1/4 inch on my lower waterline at night also!wishing you well!
Hi sheilweil , thank you for your reply , can i ask you what is the name of the gel you use ? I hope you are keeping well. Xx
well that was a waste of bleeping time !!!
Eye bag treatment for dry eyes
Plaquenil and Calcium/Vit D
