I was recently discharged from an NHS Opthamology department (satisfyingly my peripheral vision has improved). I mentioned that I am still bothered by quite blurry vision some days - the Consultant said this is due to dry eyes (pre-dated Interferon treatment, but obvs one to keep an eye on, no pun intended).
She gave me some eye drops (thick and more like a gel) to apply before going to sleep. I've only used them a few times but am really impressed by how much difference they are making. I thought I'd mention in case it helps someone else - in the UK these are Viscotears 2mg/g Carbomer (apparently you can buy them so I'm off to find out where).
Mazcd - if you're not allowed to post a specific product on here please remove this; I'm in no way affiliated, it's just something that I've found helpful. There are other eye drops!
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RoundTheWorld
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Dry eyes can be a common problem. It took me a while to recognise that some eye preparations contain a preservative and that I’m allergic to it. With pharmacist advice I now buy preservative free eye drops and gel off the shelf at my local pharmacy. They are also stocked by some larger high street pharmacies.
I have dry eyes as well. Started fairly recently. Maybe a year or two ago. Probably a function of living in a very dry climate (Colorado). The brands I use are Blink, GenTeal, and Refresh. Basically, anything that is available OTC in the pharmacy. The only formulation to avoid are the eye drops with an astringent for 'red eye'. Those are good for red eye but dry eye is different.
Hello ! As you're in the UK you may be eligible for blood serum drops which have been the only remedy for my severe dry eyes over the past years . . I used to donate my own blood pre covid to make up a batch of phials but now it's donor drops which are fine. I literally can't function without applying them on waking and several time throughout the day. They are produced in and supplied via courier service from Liverpool. It may be worth enquiring if you are eligible to take advantage of this fantastic service.
Having dry, very dry or severely dry eyes is very debilitating so anything that helps alleviate ones suffering is worth its weight in diamonds. I tried various things including the viscotears but the serum drops are the only thing that have consistently worked.
As noted here there are preservative type and preserve free eye drops/gels. Preserve free are more costly since it's usually single use. But there are some with special dispensing bottles for multi use.
There are different types of preserved drops. BAK is in most, in this report ~70% of the options. But it's also considered the most toxic, hence the caution for long term use and the bad reputation for the category.
There are newer preservatives that are intended to be safer. One example here:
"Once SPB is applied to the ocular surface, existing conjunctival enzymes such as catalase rapidly decompose it to oxygen and water, limiting its cytotoxicity".."In vitro studies demonstrate that SPB is significantly less toxic to corneal and conjunctival cells compared to BAK."
This report offers good details on the various options.
I have aggressive Sjogren's so I've learned a bit on eye drops. My eye dryness is actually mild and low on my Sjo list. I use the SPB type just once per day. Most eye Drs will recommend true non-preservative drops for sustained use but it's worth asking about the newer options too.
Is your Sjo limited to dryness? It usually affects other systems, but is still dismissed as just a dryness annoyance by many Drs. Examples are heavy fatigue, fibrillation, brain fog, general pains, GI, various neurological, weakness. I mention in case you've got some combo of these and not sure what is causing it. There is some overlap with MPN symptoms.
I don't much have dry eye so far but may of those others.
Hi Epguy In my view I have symptoms of all of those things but Sjogrens wasn’t accepted as a contributory factor for many years though blood tests were constantly positive .Hydroxychloroquine has helped with many symptoms… can be very frustrating .. difficulty swallowing gastrointestinal issues Bronchiectesis developed after persistent cough .. I still think I try to live fairly healthily inspite of all these factors ET antiphospholipid syndrome.. doctors throw them out there and when you ask if the symptoms you have relate they just say they don’t think so ..
you have to look out for a bit of joy wherever you can . Keep going .L
Your brush off by Drs is a common theme in Sjo world, Drs resist this Dx while they don't for example with Lupus, an equally serious condition. It takes many pts years for the Sjo Dx, but with a positive (I assume SS-a) you should be an easy Dx. Mine was quick with how sudden it came on and + SS-a. Sjo specialists are very rare, and even then not always up to date.
A quick search finds antiphospholipid syndrome often associates with Sjo.
Anyway you're already taking one of the few drugs that can help so for now the Dx would not make a big diff. I'm intolerant to that drug. But there are new drugs in late trials that for the 1st time can treat the disease. When these come out you will want to get that formal Dx to get access.
Chris, I’m encouraged to know you can now use donor blood for serums tears. I successfully treated my two years ago with Lipiflow, restasos daily, eye ointment at bed, rubber eye mask for sleep & warm moist eye pads multiple times daily. Unfortunately a new medicine, unrelated to my MPN, has brought my dry & blurry eyes back. But for those reading who need help, the products described above are helpful. Also, you shouldn’t use regular drops with preservatives more than a few times daily. . Katie
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Newly diagnosed with pv
Wavy blood vessels at the back of the eye? Could this be associated with ET??
