How long without drops until damage occurs to eyes?

[MAT51]

I use Hyloforte drops during the day and lacrilube ointment at night. Lately I've been a bit lazy about drops -assuming my eyes will let me know when they are too dry. Is this right or should I be more vigilant? I go through phases of using them hourly or more often because they feel tight and ache, but other stages where I only remember drops twice or three times a day. Is this okay or might my assumption cause harm to the surface of my eyes?

[Joe S.]

I have never used eye drops.

[Pete0211]

I try to stay on top of it - as with any of my other dryness symptoms, I find that when I'm not proactive, the symptoms get ahead of me and takes more effort to get back in control. At minimum, I use drops upon waking and before sleep, and usually once or twice during the day - especially if I'm working (I sit in front of computer screens 9-10 hours / day).

[MAT51]

Yes the computer and also the central heating both aggravate my sicca too. But I use lacrilube gel and it is gooey and takes me through until midday although it smudges my glasses often so it's really my night medicine. I'm two weeks into Cellcept and wonderimg if it might be helping this symptom a bit, unexpectedly. I was using my drops every 30 minutes until ten days ago. Then I got the idea that they might be making the bad taste worse so I eased off to twice a day and bad taste is same but eyes don't feel as tight or gritty somehow? 

[cccourt1942]

Mat,
    I understand you are geographically challenged as to getting to a doctor.  I realize you have to work within your health system as well.  Knowing those two hurdles, I believe this is a question for an ophthalmologist.  I say that as I used an OTC (individual vial) eye drop...recommended for dry eyes... for over 25 years before my dx.  Even after my SjS dx my initial ophthal did NOT Rx Restasis.  In less than a year I had moved thus found a new ophthal.  He put me on Restasis..and said very little about my eye surface---until over a year later.  That is when HE announced my eye surface looked all together different than it had when he first saw me.  (OH.....................I was told to take Omega 3 immediately upon SjS dx)

     I believe your ophthal is the one to better suggest if your current protocol is helpful, and keeping damage at bay.  My eyes hurt and I had horrid episodes of what was misdiagnosed as allergic conjunctivitis.  The cause of the red eyes (which looked as if they were bleeding..no exaggeration) was SjS of course.  At the time I was given steroid drops...which brought the inflammation down within about 3 days.  I'm so old I believed it was contagious and would not work during those spells.  Anyway, bottom line, my eye surfaces were in bad shape but the real damage was to my lacrimals which had atrophied.  I didn't even know what lacrimal glands were nor did until my dx with SjS.  I thought it was a result of old age.  But allergy?  I never understood that dx.

    BTW: I was 72 when I started the Restasis.  My eye surfaces are fine...and I believe the original OTC drops I used (as needed for comfort) saved my surfaces.  I'll never know...but just think....it was closer to 30 years by the time I began to use the Restasis. 

    Also: I know you don't have Restasis, etc.  Whatever it is you can get there, you may not even need it now.  But as to damage to your eyes, again---ask the ophthal. 

     Good luck, stay warm, and a Happy Holiday season to you and yours.
c3

[wendyoh]

I was diagnosed by opthamologist with corneal erosion, around the same time they diagnosed me with Sjogrens, about 5 years ago.  I am not working with any experts on SJS, I don't think there are any where I live even tho I am in fairly large university town.  I had my first corneal abrasion around 2004.

Is corneal erosion something that is genetic or could it have been because of untreated SJS--I did start using eyedrops after 2nd corneal erosion around 2007, but was taking antihistamines for 4 years after that that I am sure hurt my eyes, no more of that.  Wondering if I would have used eyedrops sooner in my life regularly (I do multiple times a day now) and maybe avoided antihistamines etc if could have prevented it, seems to be chronic now but using gel at night the doc did say my eyes looked improved, not cured , after couple years of that.

[MAT51]

Thanks to you all for these various responses. I could not get my GP to refer me to the NHS opthamologist but opticians here are mostly quite sophisticated and treatment is free unless purchasing glasses or lenses or extra testing required. I've been using drops and gels a long time so perhaps that has saved me from corneal damage so far. Certain medications have caused the dryness to worsen periodically and I've also noticed that when my other symptoms flare up and my sed rate is high, my eyes are worse. When on steroids for six months last year my eyes were good as long as I used lacrilube goo at night.

For a week now (into my 3rd week on Cellcept raising doses weekly to reach 2000mg maintenance dose) my eyes have felt much better again. I don't know if this is just a coincidence or not since I've been told by rheumies that there are no immunesuppressants for this aspect of SJS. I see a highly recommended optician who has very sophisticated technology and knows all about SJS because his wife has MCTD, next month. I've asked previous opticians before if my dry eyes could be age related but they say absolutely not. Last year I had several flame haemorrhages near to my optic nerve.

Anyway I'm trying not to allow myself to get too optimistic about my toleration of Cellcept or it's possible effectiveness!

[anita]

Have you had a Schirmer's test to gauge the level of dryness for your eyes?  If so what was your result?  This is important because it's an easy test to repeat (low cost too) and now you may be able to confirm whether or not the Cellcept is helping this aspect/symptom...just ask your optician to repeat the test.   

[MAT51]

I had a Schirmers test in September 2015 and results were normal, as was the amount of saliva I produced. Complete with my normal antibodies this convinced rheumy no.2 that I did not have a CTD including Sjogrens. The high inflammatory markers and very dominant SFN were brushed off as some other problem by him.

However I was on 7.5 mg Prednisolone still when all these tests were conducted. Previously the optician had run a more sophisticated test (do they run this in the US I wonder?) several times over the years (while on Plaquenil) and was startled to find that my tear break up was very poor. But I was on Amitriptyline for the SFN at that time and this had a big impact on my eye dryness. That said I've had to use eye drops since I was a teenager as my eyes have always been dry and prone to infections.

No one has repeated the Schirmers thankfully (very sore/ unpleasant) and I've been told that it should now be left behind as a test and be replaced with the Rose Bengal or other one using anaesthetic dye and microscope.

Anyway gradually, regardless of medication, the tight feeling around my eyes returned, once off steroids and as my ANA showed positive etc and for the past six months it has been a real pain having to apply drops and ointment very frequently once more. I saw a new optician in October and he found my eyes to be very tearless and said this could only be SJS - which had by then been histologically confirmed.

So I guess this would be the starting point for me. But this is another reason I'm beginning to really think I must have another CTD overlapping with SJS. My eye dryness definitely fluctuates along with Raynauds and SFN, GERD, palpitations, constipation and disequillibrium rather than just progressing. I feel very lucky to be taking and tolerating Mycophenolate now.

And the young rheumy chap was rather put out by my letter of resonse to his own back tracking one. He phoned me after receiving it and I challenged his statement that I could only have one rheumatic disease, SJS going on. I said my instincts tell me that my symptoms and signs suggest a different rheumatic disease is at work alongside Sjogrens, and this is Scleroderma. He explained that my ENA panel, including all three more specific antibodies to Scleroderma were negative. He agreed that it's possible to be seronegative but 70% of Scleroderma sufferers are positive. Then he said that he had ruled out this disease because, six years after RA symptoms started, by now I'd have severe Raynauds and digital ulcers with lung involvement or pulmanory hypertension.

I countered that I had read that Scleroderma is similar to RA in that, if caught and treated early with drugs such as Methotrexate and steroids, it might be knocked right back and be less erosive or progressive. As you know I was aggressively treated for RA with these same drugs for a few years. Meanwhile I have had tight hands that won't grip or clench, my mouth is tight (gums and lips) 24/7 and my GERD is severe and swallowing issues too. Also I feel instinctively that my constipation is due to tightening and hardening in my bowel rather than dryness. My tendinitis could relate to any rheumatic disease. Equally these symptoms could all relate to SJS Dysautonomia/ ganglionopathy of course. But I'd like Scleroderma ruled out properly before this is presumed.

So my points were reluctantly acknowledged by him and he has moved me from thecrheumatology clinic in March, to the CTD clinic in late April and i will have the illuminating nailfold capillary test, which can confirm more or less or exclude Scleroderma for me. I'm actually not thinking I have it because my Raynauds is so mild - but I don't want to be stuck with the UK SJS protocol of non DMARD treatment.

He did say that Mycophenolate/ Cellcept would be the right drug for Scleroderma and I told him that this is why I pushed for it. But privately I just feel really sorry for the other two seropositive SJS patients he spoke of who also have SFN in this hospital, but who only get offered Gabapentin and Pregabalin because neurologist thinks these antirheumatic drugs are "simister"

And really how can they say that there's no evidence that immunesuppression is effective for SJS SFN if they don't at least try it?

So if it works for me then hopefully others with primary SJS in my area will benefit from being offered it too. Mat x

[anita]

Well, hopefully your high tech optician will have the Schirmer's with anesthetic dye (that is how mine was done at Hopkins) and it's not that uncomfortable.  They should ALSO do the Rose Bengal, Slit Lamp, and detailed microscopic testing.  But there really isn't another test that measures tear production as well as the Schirmer's.  Your doctor just used the old version without the anesthetic drops.  YOu are just starting on the Cellcept, so hopefully it won't impact your eye exam.

The steroids at that time would have have a big impact on your eye exam.  That being said, all your testing should have been completed before they started you on Cellcept...as it can impact your test results, as well.  They should have done the scleroderma testing, skin biopsy, and all autonomic testing before they started on your Cellcept.  I hope you don't get normal results for everything and then they stop your treatment.  Have you looked into the impact of Cellcept on your tests?

I don't know why he would say that immunosuppression doesn't work for SFN...Cellcept is a common treatment for it.  I took for for this very thing back in 2008...so it was even being used back then too.  The neuro in that hospital is the 'sinister' one...LOL

[MAT51]

Anita you are right to say they should have done a benchmark of everything prior to my starting the cellcept (or Myco as we call it here). But I knew this wasn't going to happen with my neuro, couldn't afford to get testing done elsewhere privately, didn't feel I wanted to risk their half baked approach of "wait and see where this goes", so now I think they will leave me on Cellcept if I say that my symptoms are much improved. I won't say that they are if they actually aren't. At the end of the day it's symptoms that should guide us over bloods etc.

They have said that they don't usually offer immunesuppresants for SJS because there's no way of monitoring its efficacy with our disease so will just have to be guided by me. I've argued that this isn't the case because of high PV/ ESR and CRP and fluctuating antibodies. But the reality is that my CRP was only 13 and insufficient blood for PV so stupid people don't have even these markers in place and appear to only be using their own hospital's results rather than going back further. If they were detectives tracking down a serial killer I'd be totally unimpressed lol!

But I'm confident enough in myself now to go DIY. I'm fairly sure my nailfold test will not show much and of course I will always then wonder about the Cellcept. But I gave myself 18 months off all antirheumatic drugs and nine months off steroids so I'm fairly clear that the only thing that's changed since I went drug free was that the reflux and constipation were getting steadily worse despite over the counter meds. Other symptoms such as dry eyes, tendinitis, muscle weakness and disequillbrium had all returned once off steroids and DMARDS. I know that and that's going to have to be my own benchmark so it's all written down in a list/ journal I can measure myself as symptoms worsen, improve or remain the same.

My paired o' bands, +ANA and lip biopsy results were all clarification I needed that my symptoms are due to a connective tissue disease,  so I'm the best detective I'm going to find  - and waiting indefinitely for more things to show up with the right testing at the right time was proving a non starter. I knew which tests I should have got done years ago. But honestly, I knew that the neuro was the most thorough detective I have on my team (she does do her homework) and yet her position on antirheumatic drugs and further skin biopsies was untenable for me and she had too big an ego to get around, apart from by being sneaky as I have been! 

And the rheumy registrar did at least test me three ways for Scleroderma at the same time as testing other autoantibodies when I was drug free - so I'm confident that if I have it then it's mild and was maybe knocked on the head with a few years on MTX injections with Plaquenil and steroids. This can be the case with diffuse Scleroderma I have read. 

And ultimately, under the circs, this is the best I can do! Mat x

[anita]

Well, I guess we just have to hope that this works!!

So sad that you won't get the benefit of proper testing for all your problems, so they can be addressed in appropriates ways.  If this doesn't work then you'll be at square one, and have to wait months to start over.

At least you are tolerating this medication...so far.   It does take a while to start working.  Have you noticed anything...good or bad?

[MAT51]

Thanks Anita. I'm feeling quite optimistic so don't worry about me please. In fact I feel much more sorry for those many people the world over who don't even get offered immunesuppressants or other treatments for their Sjogrens.

The main improvement I've been aware of is to since starting has been the IBS-C.  I'm not needing the usual Senna at all, which is a big plus because things are much more normal and healthy after over a year of constant problems. Also after two weeks I have realised that I'm using less than half the number of eye drops daily -again could be coincidence but I think not. The tightness around my eyes is much less bothersome.  That's about it so far, apart from improvement in foul taste which I hate the most of all my symptoms - but this might be because I'm taking Ranitidine regularly or just because it ebbs and flows regardless. But it's early days so tolerating it well is the main thing. I get up to maintenance dose of 2000mg on Monday. 

Happy Christmas and New Year 2017 to you!

[anita]

But what about the most worrisome symptoms...the disequillbrium/dizziness, pain, and weakness?

Using less eye drops is good, but the decreased constipation 'may' just be due to Cellcept commonly causing diarrhea (and you end up with normal bowels, since you were at the other end of the spectrum)...LOL

These types of medications have pretty significant effects on the GI track when first starting it...some get diarrhea and others get constipation.  I too had improvement from my years of constipation (from severe gastroparesis) after starting Cellcept.  But I wasn't able to take it past 3 months, so don't know if it would have stayed that way.  But of course, my constipation returned after stopping it.  You'll have to wait a while to see if your IBS-C improvement is just a side-effect or an actual improvement from the immune system changes.  Keeping fingers crossed that it stays perfect for you!!

You felt your IBS-C is from tightening/hardening of the bowel...Even though Cellcept is the right drug for scleroderma, I'm not sure the Cellcept would change this that fast.  Time will tell.  Glad to hear your a writing everything down and keeping track of symptoms/onset/changes/etc.  You are always on top of everything...and put the doctors in their place, when they need it!!

[MAT51]

Yes it's hard to know what's sorted out the strange constipation to be honest. I had quite bad nausea, dizziness and diarrhoea for the first week but having taken Methotrexate for two years with Plaquenil these didn't phase me. I stil feel things are weirdly tight in rectum and colon but I think it might be gastroparesis for me too since food isn't going down easily either. It was all put down to dryness by GP  but for some reason I don't think it is.

In the same way as my gums, lips and nostrils feel compressed always now, and sometimes have nasty parasthesia - so my lower gut feels similarly afflicted. There are three possible causes as I've mentioned and as you know only too well yourself. There's SJS sicca, autonomic/ ganglionopathy, or there's possibly Scleroderma. My own feeling, based on the sensations and appearance, is that the usual dryness/stress causes of constipation are not mine. I've had this type before and this is different to classic/ common constipation. Same goes for facial issues being not same as burning mouth syndrome.  Issues as both ends seem to me to be either SFN or Scleroderma hardening.

I think you are right that the constipation has resolved purely as a happy side effect of the Mycophenolate. The disequillbrium and tinnitus are much the sane and my eyes are the only real improvement I can point to as significant so far. But as you know it's early days still. Why did you stop Cellcept after three months? Mat XX