Sjogrens confirmation.

[EveWarwick]

Following my post here over a year ago, and to which Paul also emailed me, I was confirmed last December as being positive for Sjogrens and given a leaflet to read on Hydroxycloroquine while being referred to a Rheumy who was more specialist in Sjogrens. Since May last year I have had problems with vision, May totally "blind" for a full minute and three episodes of very severe blurring. On Saturday I was at a conference making notes and they became totally foggy for two minutes, so just phoned hospital and they had already made me an appointment for April. Actually a bit scared about my sight, would appreciate any advice. Kind regards.

[EOLHPC]

Hello Eve, thanks for giving us your news. It’s v good you’re now diagnosed, but i’m v sorry your eyes are suffering this much!

Which clinic has given you this appt in April? Because your symptoms make me suspect you need to be seen by ophthalmology asap....eg i have severe sjogrens cornea inflammation and am monitored every few months by the NHS Eye Clinic chief of Cornea Service and his expert treatments are helping a lot.

Maybe you’re on to this already, but: It was my GP who referred me to ophthalmology...if you haven’t discussed these recent symptoms with your rheumy &/or GP and requested referral to Eye Clinic, i’d urge you to...in the meantime, could be wise to check in with your optometrist too

Please keep us posted....take care XOXO Coco

[EveWarwick in reply to EOLHPC]

Thank you Coco for your kind reply

When I saw the rheumatologist in December who confirmed Sjogrens, (high blood results for second year plus other symptoms) he said he was referring my to a Rheumy who was more specialised in Sjogrens, that is the clinic in April.

I told my GP about the sight loss in July, she didn't know what it was, just said mention it at next Rheumy appt which was December. Had my eyes tested (Specsavers) July told him but he could not see anything, that was the after the first time. Seems to be all about waiting to see Rheumatologist. I am so fatigued at present it is hard to do anything, also have sore glands in throat and neck now too. Just lucky I have a little Westie dog who I have to make the effort for. Wondering about going private, not that I can really afford it though.

In my previous post I mentioned pins and needles in my lips and tongue, had a brain scan which they said was "satisfactory", didn't know what caused it. So now every single day for five years I have had this constantly, like all the time!

I am beginning to think it is me or because I am older, 70. Fell and fractured my wrist (second time, have had seven ops on it as they cannot get it right without fusion", in May, after a lot of kerfuffle finally had a scan Dec 29th, result now too late to do anything, again except fusion. My friends cannot believe me and the NHS because to be honest it does only seem to be me and they think I am jinxed!

This is such a good site, I really appreciate it. xxx

[EOLHPC in reply to EveWarwick]

Oh Eve: that’s a lot of tough stuff. I feel you’re being v brave about it all. it’s good you were examined at specsavers & mentioned your eyes to your GP.

I’m no expert, but, knowing what i do now about sjogrens & eyes, i tend to think you need to be referred to nhs eye clinic now...because:

- if you’re now on hydroxy, as i understand it, the nhs protocol is to do baseline retina exams for reference during ongoing hydroxy monitoring...but you may find your rheumy needs to refer you to eye clinic because he/she is the hydroxy-prescribing consultant...but your GP can write requesting rheumatology referral

- your vision is so affected already by something, be it sjogrens, age, or whatever

Anyway, we’ll see what others think

Am so glad you’re here XOXO

[EveWarwick in reply to EOLHPC]

Thank you again Coco, no am not yet on Hydroxy, he gave me the leaflet and said the next Rheumy will prescribe it, which is now in April. He did prescribe Hypremollose and something else which the chemist says has not been available for a year. So still not anything, although he did say he would have prescribed Hydroxy a year ago if I had not messed up my appt, which I said on here previously I had. Am beginning to be fed up and a bit scared, my father went blind when he was in his 80's and it was so hard for him, especially as he had my mother with severe dementia.

Very strange all this because about twelve years ago my dentist (a professor and lovely) suspected Lupus but all I had was a nerve conduction test (???) no blood tests and that was that. Really think I am NHS jinxed lol. xxx

Incidentally the NHS here were fabulous with my parents when I moved them up here in their 90's, could not have had better treatment, so this is not an NHS moan. xx

[EOLHPC in reply to EveWarwick]

Understood: the NHS can be wonderful!

Thanks for explaining...my memory is dreadful, although i do recall reading your earlier post -just can’t remember details...

Am glad lupiknits replied: she is v experienced & has great judgement!

XOXO

[Hidden in reply to EveWarwick]

I have the same things as you and have Sjögren’s too. Please try not to worry. Could the eye problem be that you aren’t using your drops often enough perhaps - or aren’t using the right drops maybe? If your eyes have been checked then this is reassuring and points more to dry eye - although your optician at Specsavers might not be good enough and you may need to find another who can check out your optic nerve to exclude optic neuritis. Some with Sjögren’s get this similarly to people with MS.

But dry eyes can cause damage to the eye surface which can sometimes lead vision problems too so it’s important that you get the very best preservative free drops and overnight ointment or gel. But A pos is good and Hyloforte drops are my favourite.

Also you may not be aware of how dry your eye surface is - sometimes altered vision is the only clue.

Finally I have suffered neuropathy throughout my face and body for 8 years now - and burning mouth syndrome is a kind of small fibre neuropathy. For some it is relieved by saliva stimulants. For some it is caused by oral thrush. If these two are excluded or treated but it continues as mine does - you may need to be referred to a neurologist as I was. It is a horrible symptom that I am very familiar with having suffered from it for a long time now.

I’m 56 and this all started for me when I was young I believe - but the neuropathy started 8 years ago this month. I have never been offered nerve gating treatments that do other than perhaps mask the pain for my small fibre neuropathy. But if I was in your situation I’d ask for a nerve gating agent as they can really help. X

[EveWarwick in reply to Hidden]

Thank you Twitchytoes, I saw the optician in July and mentioned not being able to see the one time, he could not see anything. I told the rheumy secretary on Monday that the episode on Saturday was the fourth time but the earliest she could get me in is April, and not before, so until then I am still not on the Hydroxy and only on Hypremollose with preservative eye drops. Reading all the replies on here, for which I am thankful, I am now a bit worried and do not know what to do as no mention of seeing anybody about eyes. I had five episodes of total blackout (lost my driving licence but back now) and after one five years ago I woke up with the pins and needles in my mouth and tongue and it has been there every single day since, a bit like when a dentist injection wears off. One thing for about twelve years when I bend down the skin on my outer calves really stings, like when we were kids and did the Chinese burns. Do you think that could be anything, my doctor just said she didn't know?

In December the rheumy said he would put me on Hydroxy but wanted me to see the SS rheumy first, that is the appt in April so until then not on anything except CoCodamol which was initially prescribed for my wrist years ago as the bone fractures are all rubbing on each other, after seven ops they could not get it right and then I fractured it again in May. Hey ho. x

[Hidden in reply to EveWarwick]

I’m quite sure you should see a better optician for starters. You can walk into any and say you are experiencing episodic loss of vision and they should see you pretty much straight away.

The preservative in the drops may well be the issue and with Sjögren’s we are told to avoid these drops.

My old optician told me this so I reported it to my GP and he issued me with a repeat prescription for Hyloforte preservative free drops and Vit A POS ointment which ophthalmologists in my eye clinic seem to love.

Rheumatologists won’t do much for your eyes apart from possibly refer you to an eye clinic. I would be more proactive and ask the optician you see to do this ASAP or attend a walk in as an emergency.

Keep badgering saying you have Sjögren’s and need better drops. Just go around your locality asking optician’s if they have anyone with additional knowledge of Sjögren’s as you need assessment and I’m sure you will find someone better. You could probably just buy some preservative free drops to try in the meantime but you should be able to get these off your GP straight away.

Re the neuropathy I would ask GP at same time for neurological referral as they usually take a long time. Be persistent!

[Hidden in reply to EveWarwick]

This might prove helpful for understanding the effects of Trigeminal neuropathy and occipital neuropathy (vision changes and mouth pain) caused by Sjögren’s: rheumatologyadvisor.com/dia...

[PMRpro in reply to EveWarwick]

I agree with Coco - and I cannot believe a GP didn't send someone with transient visual loss for immediate investigation for a TIA or ministroke.

If it happens again go to A&E or dial 999. And speak to a different GP if you can. Take someone with you - it does concentrate their minds...

[EveWarwick in reply to PMRpro]

PMRpro

Thank you for your reply, sometimes I think I am really losing it, fatigue is unbelievable and as other people have said I sometimes get this detached feeling. I read your post yesterday and it was only today I remembered my GP did say if the eye problem happened again I was to go to her immediately or to A&E as it could be a TIA. How could I forget that? Was it Whisperit, it was a regular, who said they were having Adrenal damage, that is something that worries me as I have a 3.4cm Adrenal tumour which was monitored by two Endocrinology appointments over a year but nothing for the last four. Also have CKD 3, but not had any urine tests at either of my Rheumy appointments. Maybe I should be more forceful but just do not seem to have the energy at the moment and the pins and needles in my mouth and tongue are driving me mad today.

Mind you reading some people's posts they are putting up with far worse. Maybe once they finally start the Hydroxy things will get better.

[PMRpro in reply to EveWarwick]

Write a bullet-point list in advance and then take someone with you who has been briefed. Just the presence of someone else helps but if they can help all the better.

You need an endocrinology referral - however much your GP may dislike it. Actually - she could have sent you to a clinic even after the event.

The fatigue IS awful - maybe the links in the post will help a bit:

healthunlocked.com/pmrgcauk......

[EveWarwick in reply to PMRpro]

Unfortunately I do not have anyone up here, my daughters live in Windsor. My endocrinologist actually phoned and cancelled my last appointment as he said he has signed me off. I have found that my previous doctors elsewhere put down fatigue to age, pain etc and no tests, (over ten years) it was as if why are you here bothering me! My GP does try up here but is beholden to the hospitals, drives her mad too she says. Shall have another go next week. I did take a list of symptons to the Rheumy in December and he asked to keep it, in fact made reference to it in his letter to the SS consultant I am seeing in April. Thank you PMR.

[Lupiknits]

I’m glad you got your diagnosis, but agree with Coco that you need some kind of very quick referral for what is happening with your eyesight. I’m not any kind of medical professional but it may or may not be something quite serious going on. You’ve managed so well with difficulties so far, I really admire you x

[EveWarwick in reply to Lupiknits]

Thank you Lupi, I have been following you and know what a tough time you have. No quick referral, appt with more specialist Rheumy in April. Hope you are feeling better. x

[Mandypandy1969]

i have fibromyalgia and inconclusive results for sjogrens but i have a lot if blurry episides along with dizziness and a falling to my left. it scares me too. i am on mycophenolate which is a dmard drug but fibromyalgia isn't immflammation so i need answers. got appointment with ent in march about my balance issues and my hearing. feel i am in the dark about things. xx

[shaunalouise26]

Hi I have had nearly every eye problem going over the years.i did have my vision intermittently go black when I had uveitis and was very pixelated when I had a retinal vascular occlusions but an opthamologist would have seen this when they examined your eyes. The retina does need further investigations by the hospital though as they have better equiptment and can photograph the back of the eye. I also have nerve problems in my face, hands and feet also. I saw a neurologist who wasn't interested said it was all anxiety yet I've been suffering for years. I'm having nerve conduction studies next as MRI was normal. I asked if nerve conduction studies would tell of I had small fibre neuropathy and he said"no there is no test for that!" which is a lie as there are punch hole biopsies. I really thought getting a diagnosis would get me the help I need but I'm just treated like a neurotic. Lastly when your vision goes black/ blurryare you stood up? Check your blood pressure because I have neurocardiogenic synscope caused by dysautonomia as the blood doesn't travel to my brain on standing my blood pressure drops and this has caused the visual symptoms you describe x

[EveWarwick in reply to shaunalouise26]

Thank you Shaunalouise, the only eye examination I have had was the normal two yearly one at optician, had the first episode of not being able to see at all, just totally black, but he said he coul d not see anything. The other episodes have all been when sitting down. My blood pressure is not consistent, generally highish but very variable. The five episodes of blackouts I had they diagnosed as orthostatic intolerance, touch wood not had one for two years although I do get dizzy sometimes. MRI on head/brain? was "satisfactory", whatever that means! I do have pins and needles in my feet and hands, is that all connected do you think? I feel now I have had various symptoms for years and the doctors just do not join up the dots. Take care x

[SjogiBear]

Just a quick add . . .

Please don't use the hypromellose but try one of the preservative free brands available instead. Your GP can prescribe Hylotears or Hyloforte or there are other preservative free brands out there too. If you have to buy them yourself then Hycosan and Hycosan Extra are the same but cheaper to purchase.

If your eyes continue to give you trouble, don't wait until April to get them checked but find out if you can go to an emergency eye clinic at your ophthalmology department.

[EveWarwick in reply to SjogiBear]

Thank you, I will see what I can do, appreciate your reply.