Do these really work

[Persiankiwi]

Ok so saw optometrist who agree with GP that my dry eyes is down to tear production not oil glands. Recommended Thera tears capsules, vita-pod ointment, lid wipes, heatnask & covers & hylo-forte drops to a tune of $170 but hylo-forte doing nothing can still feel my eyelids sticking occasionally, I seemed to be better with systane ultra been using for a year. I'm new to this so have I just wasted money not really got to waste ?

[Hidden]

Sorry I can't help with some of the brands and costs you as speaking about because I live in Scotland and my prescriptions are free.

But the answer is that different drops and ointments suit different people. My friend for instance - she has Sjögren's too - but she didn't get on with Hyloforte at all and prefers Celuvac (I think that's what they are called). My opthamologist told me that many of his patients prefer Artelac so I'm trying it but I still use Hyloforte drops as well - and lacrilube at night too.

I also have just started heat packs on my eyes for 15 minutes a day and use a massage tool afterwards to try and improve my meibomian glands at the opthamologist's advice. I have had to spend a small fortune on new glasses - prescription shades to stop my eyes being affectied by bright lights.

[Persiankiwi in reply to Hidden]

Hi, we do have the drops you mentioned. I was a hospital pharmacist until I fell on wet stairs & fractured my back & all this started so I've been putting systane drops & kiwi Manuka honey ointment in at night & found this works much better than what the optometrist suggested but as you said what works for one doesn't work for another. Can I ask you do you get electric shocks anywhere, they started in my feet but now there everywhere & the last 4 months in my L Jaw shooting up my L ear. Had two nerve studies done but found nothing, sometimes I must seem like I'm a mad person because I can shout out when the first ones start.

[Hidden in reply to Persiankiwi]

Absolutely re the electric shocks - this was one of my first symptoms along with bilateral joint pain and burning feet and an awful taste. Then I got diagnosed with seronegative RA in 2011. But this never felt right and finally I was rediagnosed last year with Sjögren's- most probably primary.

I'm told the electric shocks etc are actually a relatively common part of Sjögren's- if it affects the small nerves (small fibre neuropathy). This type of extra painful neuropathy usually doesn't show up in nerve conduction studies or EMG. The tiny nerve fibres are too small to respond to the relatively blunt instruments of nerve conduction.

Having tried all the dmards for supposed RA I am now on Mycophenolate/ Cellcept. I'm tolerating it well (a first for me) but it doesn't seem to be helping much. It is early days though and I have tried lots of natural therapies but my nerves are gradually dying off and my feet and parts of my face and arms are quite numb. So I'm giving this new immunesuppressant a shot as a last ditch option. Fingers crossed!

[Hidden in reply to Hidden]

Ps and re the Manuka - never thought of this idea. However Manuka costs a lot in the U.K and I couldn't afford to buy it. Lacrilube works really well for me and Hyloforte too. I don't have the awful shocks anymore!

[Persiankiwi]

My wards in NZ were transplant wards so have seen good results with Cellcept used as immunosuppressant.

My daughter was at Uni in NZ but back home now as was home-sick ( even though NZ is home) so she got the Opti Mel eye ointment $25 nz so about 14 pounds. My nephew at uni over there too so he or my friends from the pharmacy send it me or I get when go home. My great uncle was optometrist in Nottingham & I can remember him telling NZ led the field in all things with eyes. If you want to try it let me know I'll post you some.

I don't think I'm as bad as some of you here just yet regarding dryness

[Hidden]

Hi my eyes have been painful and dry for many years; I have settled down now to Hylo-forte during the day and Vita-Pos (wax) at night (though I often wake up and put more HF in during the night). My optician recently sold me the heated mask and it does seem to cleanse the gunk from my eyes - though I haven't noticed them being any less dry!

[weathervane]

Hi , I was changed to Hylo- forte a couple of months ago and it took a couple of weeks to get the full benefit of it . I dont need to use any other ointments at the moment but i am going to talk to optician Friday about heat packs as my eyes get tired- I don't know if packs will help that .

[Persiankiwi in reply to weathervane]

From what I understood from the optician heat packs just help stimulate the oil glands because less tear production affects the oil & less oil affects your tear production, she told me it was a vicious circle.

[weathervane]

So maybe not a good idea ??

[Persiankiwi in reply to weathervane]

I'm honestly confused, one Heath professional says one thing & others have different opinion. Dr I see for fibro told me today bloods are normal but 60% are so need a lip biopsy which I'm not keen on having. I've read that could be normal too but he says not, I stopped all my pain meds etc in October to see if made a difference to my eyes & mouth but haven't just getting worse. Gagging on lump in throat, feels like something stuck but there's not. Am fed up of wasting money haven't got, stopped working in January 2015 so managing on one wage, not easy with no family here. 😀

[weathervane]

The first thing helped my dry eyes was plaquenil now after 4 diff types on hylo-forte but dont know how long that will last. The dryness in my throat is getting worse but coping, though always having to clear throat which is v annoying. Hsve you ever tried meds to help saliva production? Ps i do get free prescription like twitchy otherwise would cost a fortune, it must be v difficult for you as with this condition you have so much to treat.

[Persiankiwi in reply to weathervane]

We are Kiwis so get Medicare & thats it. Started residency just before my accident so had to have a whole heap of costly Dr reports & still waiting to hear. Nearly reached the threshold last year for reduced cost medications but New Year so just started again. Do you have thermastat problems, I'm over heating & hubby & teenagers not I'm 55 do not that & stopped all meds apart from magnesium, fish oil & vitamin d to see if helped with dry eyes.

[diddy1 in reply to Persiankiwi]

I overheat and I have other issues try taking vitex agnus castus takes about 3weeks to help I take 1 twice a day it does help

[weathervane]

Yes , i do have thermostat problems, im 54 and out of menopause. I am usually cold with raynauds in some toes, but there are time at night when a get night sweats with out the sweat!! I take plaquenil and ive had rituximab twice for the sjogrens. I take lyrica and cuprofen (occasionally) for pain, also thyroid treatment , vit d , and peppermint oil . Rituximab seems to be working and so far ive tolerated it . I have thought of going off sny drugs yet as only been on treatment for a year. There seems to be new symptoms popping up all the time 😟

[eyedry]

Hi I suffered for a few years with dry eye but only my left one. Tried all the drops but found them ineffective. I participated in a clinical trial run by Melbourne university optometry looking at effectiveness of krill and fish oil on dry eye. Since the trial I have been taking 2000 mg fish oil in the morning and 2000 mg krill in the evening and my eye is 98%normal. This is higher than what the trial looked at which was 1500 mg daily . I recently found out I was on the placebo of olive oiil as the trial results are now published. also find my eye will react to certain foods...such as sweet things and also red wine.

[Roopavati]

Hi there

I have dry eyes and I use gel and drops. I'm experimenting which brand that suits me best.

However awhile back I had a very bad bout of dry and sore eyes. My optometrist suggested Thera capsules because the woman at her front desk found they gave great relief for her eye issue. They did for me too. I took one bottle (about a month's worth) and dealt with the painful eyes. The painful eyes went in a couple of days actually! We said 'how could that work' - still don't know really. So the capsule are worth a go - they are quite difficult to locate and expensive too. Best of luck in monitoring the capsules. I didnt find them helpful with the continual dry eye complaint.