Omega 7

[creaky]

Hi I have SLE and during the last year have developed secondary sjogrens. 

I'm not managing my dry eyes very well because my eyes are irritated by every type of eye drops I've tried.

My ophthalmologist has now referred me to the eye hospital so awaiting that appointment. 

Although it is my last wish to take yet another pill, I've been reading about omega 7 and ineffectiveness for dry eyes, mouth. 

Does anyone have any experience?

 It's so easy to be taken in by clever marketing,  I don't mind buying it if it's likely to make a difference.

Quite worried that by not having any effecting drops that I will damage my eyes

[ryanbone10]

Hi Creaky,

Here is a link that may be of use to you!

webmd.com/vitamins-suppleme...

[creaky in reply to ryanbone10]

Yep I think it would interact with my antinflamatory 

[PMRpro]

Have you tried liposomal eye spray? I used to use Clarymist (which apparently is now called Eye logic) and I note that their eye drops are preservative-free. Not sure about the spray. I too struggled with other stuff but my optician said he was of the opinion that Clarymist was the best. I had suddenly developed what was probably an allergy to the soaking solution for my contact lenses and it just wouldn't clear. By switching to daily lenses I was able to wear them again for a while - they are just in saline so it must have been something in the recipe that caused the problem, probably the preservatives

[creaky in reply to PMRpro]

I've tried a few sprays but not that one.

Thanks will lookinto into it. ☺

[Evaj3]

I do well on prescription eye drops called Restasis.

[creaky in reply to Evaj3]

Don't think I've tried those, thanks

[Hidden]

  I use Hyloforte daytime and Viscotears  at night.  Both preservative free.

There are also  Lacrima  capsules containing Omega 3 and Borage oil which I found helpful.  They were recommended by a consultant at the hospital.  Available from Butterflies  eye care

[creaky in reply to Hidden]

Can't have hylo or vis others, but will look into the caps thanks.

[EOLHPC]

Hello creaky

I've been taking high dose omegas & Ds for sometime now...who knows how much they are helping, but my D levels are excellent 😝

I've been there, done that, tried it all over the years...for what it's worth, here is is my sjogrens dry eyes story: 

For many years before my infant onset lupus was finally recognised in my 50s, i'd been living with hyper reactive, sore dry scratchy eyes + red periorbital tissues with flaring oedema + eyeball infections causing pus to collect in lower lids ugh. My then optometrist had told me to try the warm wet flannel eye compress method, but that caused my periorbital rashes to flare...and the flannel cooled down too fast. Meanwhile I made do with that OTC stuff you spray on the eyelids, which at least soothed my soreness

In 2011 when my brilliant rheumatologist recognised my version of lupus and started treatment, at first she called my multisystem dryness sicca...and prescribed lacrilube nightime gel for my dry eyes...which I hated: it's so gooey & sticky & smeared my vision.

Before long, my sicca eye symptoms worsened, so my fav GP referred me to our local NHS hospital eye clinic where I saw a brilliant opthalmologist expert in immune dysfunction patients. he diagnosed what I now know is a fairly typical set of conditions: 

Abacterial blepharitis

Meibomian gland dysfunction

punctate keratoconjunctivitis sicca

And he ordered me to be monitored annually re both the dryness and side effects of my lupus meds.

He said lacrilube was his least favourite night time gel & prescribed: 

artelac night time gel

Hylo tears sodium hyaluronate drops 

MGD Rx eye bag treatments (these wonderful EyeBags are available on amazon & in most pharmacies)

Antiinflammation diet with high dose omega & D3 supplements

this regime does make all the diff to me...artelac is MUCH MUCH better than lacrilube. As the years have passed, I've found that i do have to stick rigourously to this treatment plan...and even then my symptoms continue although damped down enough to mean i feel more at ease with my version of what we now know is sero neg sjogrens dry eyes

Last year, my metabolic bone unit rheumatologist confirmed I have been managing severe sero neg sjogrens with multisystem damage ingoing???he suggested a trial of pilocarpine drops, but my lupus clinic chief thinks pilocarpine would badly effect my already compromised autonomic system (a version of PoTS)

Also last year I found a brilliant optometrist with a special interest in immune dysfunction patients and bang up to date testing gear including retina scanning equipment etc. His lenses are the best prescription I've ever had. His scrutiny makes me feel my eyes & vision are extra carefully monitored. I see him free because I'm over 60, but I pay for the scanning & of course the lenses etc too

Alas for me, that brilliant NHS opthalmologist is now at moorefields, but I continue to be seen annually by opthalmologist at my local NHS hospital eye clinic. last year, the consultant prescribed the stronger hylo forte drops as well....I use these on waking, and then I use the weaker hylo tears drops during the day.  

All in all my sjogrens dry eye issues are well managed & monitored...and my 62 year old eyes are generally responding well to treatment...but, as I mentioned earlier, I have to be v conscientious about it all...the dryness is certainly not lessening

Hope something in there is useful

🍀🍀🍀🍀 coco

[creaky in reply to EOLHPC]

Interesting as always Barnclown,  I just wish I could find a drop I can use as frequently as prescribed without setting off a major irritation.

Tolerating celluvisc once a day now but should be using it at least 4 times. No way I can do that. 😞

[EOLHPC in reply to creaky]

That's tough....sorry dear creaky.....but I think you & your medics are figuring out how to improve this situation...so long as you do now see an eye medic who pays attention, has experience of immune dysfunction patients etc.....it's good you're prepping for this eye hospital clinic here on forum...if you're like me, this prep can help you be as clear & concise as poss when you see the eye consultant....so you can be effective at emphasising the severity of your specific version of eye probs & how seriously it is lessening your quality of life

When is your appt

Please keep us posted

🍀😘🍀😘

[creaky in reply to EOLHPC]

Quite agree, I feel that I have to be clued up before I attend.

I am awaiting an appointment sadly, will pay if it goes on to much longer.

Funny, I used to have a job, now my health seems to be a full time occupation, so bored with it all!

Thanks for your wise words ☺

[EOLHPC in reply to creaky]

Oh yes...BORING...I like Nordic noir crime thrillers...they've seen me through YEARS of hours spent in clinic waiting rooms....and  I try to beat the boredom by thinking of it all as exciting detective work...mostly this sort of helps me slog my way through it all....& on & on...

Thank goodness we're not alone: this forum gives us a chance to turn all this stuff into something positive...I've got to the point where I'd rather be here on forum than back in the career I loved so much...🙃...weird, but true😉

Take care

XO🍀

[creaky in reply to EOLHPC]

Haha you do cheer me up!

Yes I like to take my trusty kindle with me to appointments.

Hope you are having a good day x

[EOLHPC in reply to creaky]

😂👍😂👍

[tashi]

Eye drops give me little relief have sicca symptoms and blepharitis.  I've tried loads of prescribed eye drops and sticky gels. Hospital eye unit eventually inserted punctal plugs in lower tear ducts, not sure how much difference they've made but they've been in 18 months or more with no problems. I use eye drops frequently, forget 4 times a day more like 4 times an hour if in air conditioned, central heated or dusty environments,  car heaters are a nightmare. Turn heater off for eyes get numb Raynaud's fingers instead My eyes are much more comfortable outdoors in fresh air. They recommended gentle massage on closed eyelids when in warm shower, (easier than leaning over basin) that feels soothing for me. Currently using preservative free optive drops.   There are loads of drops available hope you find one that suits you soon xx

[creaky]

Thanks Tashi,  I find massage on closed lids helps too.

My ophthalmologist talked about the plugs too. 

Never found any drops I could use freely like that.