This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Plaquenil, Bells Palsy and Eye Care

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As I discussed recently, I have been on Plaquenil (Hydroxychloroquine) for over 8 years now as a treatment for my Systemic Lupus Erythematosus (commonly known as SLE or Lupus). When doctor prescribes a patient this antimalarial medication it is with the advice that there is the potential to irreversibly lose your sight from it. It is a very rare occurrence, however far from unheard of given the amount of people on this drug. It is thought the sight loss occurs as the patient exceeds an accumulative dosage of 1 kg (1000 grams) over the course of ingestion. A singular pill for distribution is 200 mg and prescriptions vary from 200 mg upwards in bouts of 200 mg. (see more here)

  • I also mentioned that due to my incidents of Bells Palsy at an earlier phase of life I have difficulty closing my right eye, to the extent that the muscles are in constant pain from dryness and my eyes are not of equal strength as the blinking motion moistens the eye and lubricates muscles for frictionless contraction.

So we can only conclude that now you know I have been living for years with dry, sore eyes and the fear of even worse possibilities. I will allow you to also make the assumption that this whole time I have been trying everything on this great green earth and under the splendid shining sun to prevent harm on maintain good eye health. I’ve had such an outburst of responses to this post on so many levels that I wondered why I hadn’t broached this topic and shared my eye health maintenance tips with everyone.


 

Knowing what has an impact

The first thing to prevention and protection is to know what you are meant to be preventing or protecting yourself from.

  • The wind is one of the more obvious and easy ones to remember. As dry air blows across or into your eyes it takes moisture with it. It also brings particles such as dust, sand and grit into your eyes which can be irritants and absorb moisture. All of this debris that gets in there cannot be washed out because the eyelid won’t shut fully over the eye.

Air conditioning takes moisture out of the air as it heats or cools rooms. This dryness, on a daily basis, can be felt in its fullness to one who enters and leaves, or remain within these environments regularly for an extended period of time.

  • Alcohol dries. It causes fluids to break into smaller particles. You may notice the impact it has on your hands as you use alcohol antibacterial hand lotions too often. Many eye drops actually contain alcohol in them to some extent.

Knowing which eye products are okay

The first and most obvious for many people is the use of eye drops to re-introduce moisture back into the eye. Yet there are so many types on the market today that it is hard to look beyond the one with the best marketing campaign to really know you are getting the ‘bang for your buck’.

  • One eye treatment which has come into pharmacies as an ‘over-the-counter’ treatment, even though it is on the shelf for all to access, is a cosmetic spray that you apply to your closed eyelid. Unsure what is going on there and personally I haven’t tried it yet.

Eye drops are a variation of saline solution. This is largely water with a small amount of salt. Our tears contain the same amount of salt (sodium chloride or saline) as these products so this should not cause you alarm.

  • Alcohol: This is what should cause you alarm. As suggested above it dries your eyes, which in fact is the thing we are trying to avoid so products with ethanol or methanol in them are not good for bringing the moisture back. Yes I know it seems counterproductive to even add this to eye drops but for some reason I have actually been given these and used them until I was told better.
  • Preservatives: Typically, and for safety, it should be assumed that preservatives are as damaging as alcohol to eye health. There are many potential chemicals that can be used in eye drops to ensure they last longer than a day (this liquid like many evaporates at room temperature or hotter) yet since you most likely won’t want to cart the full list in you wallet, on your phone or through memorising it then my best suggestion is simple avoidance. A full list of the preservatives used is here. (At DryEyeZone.com)

 

The Good, The Bad and the Ugly

  • Good Single Serve: An easy way to guess if a drop is good is that it will actually say “No preservatives” on the front. This will be written or highlighted in a different colour to the range with preservatives, as both will be present. Drops in single serves tend to be without damaging chemicals as they are more likely to evaporate or dry up. There should be enough drops in one serve to be applied to each eye once. (Two eyes, one go). My favourite brand is Optive Advanced and I always have some in my MediPurse.
  • Good Multiple Serves: Contrary to what I’ve said, there are some extremely wonderfully bottles which have recently come on the market. I trialled the Hylo range at my optometrist 18 months ago when it came out as a sample and this is my main treatment. I love them and they are affordable. I keep them in my bathroom drawer, Hylo-Fresh Lubricating Fluid for the morning  and Hylo-Forte Lubricating Gel for bedtime.
  • Good Contacts: Now if you have glasses you may have been told you cannot wear contact lense if your eyes are too dry. Bio true is a new range of ‘Band-aid lenses’ that you wear as well as you glasses. They offer very little in the way of visually improvement, so much so you won’t notice the change between eyes. This technology somehow contains the lubrication within your eye, enabling it to remain hydrated and lubricated. At the same time the contact is a barrier between you eye lens and the natural world which you wouldn’t normally have and so provides a reprieve from the potential stresses and damages that your eye is normally dealing with. Like normal band aides these are one use only and they need to be removed after 3-4 hours, yet I can say honestly one go with these on a windy morning and I could perform on Broadway I feel so great.
  • Bad Water or Salt Water: I know Eye drops are saline drops, which is water that is barely salty, so it kind of makes sense that you can make your own right? WRONG. You disturb the natural Ph level of the eye lubrication so whilst it does lubricate it also irritates. That and the added fluid may have contaminates or have hidden, sneaky little microbes or germy-germs that can get into your body and cause all sorts of mayhem. That is why eye drops all come in such specialised sealed containers. Eyes are orifices, which means they are official access points for things to enter and exit our body. Don’t lay down the welcome mat to worms or worse.
  • Ugly Eye Whitening Drops: I don’t actually know what goes into these but everything that makes your eye stop looking so red and bloodshot after a hard night out or a week of restless sleep or a terrible migraine and evening in a dark air-conditioned room is everything that I have been telling you to avoid. Don’t do it, you are better than that! Use a good, preservative free type and wait ten minutes. Drown your eyeballs if you must but the redness will subside in a much healthier way in a short amount of time.

My final piece of advice for anyone who struggles with their eye health or closing their eyes due to paralysis, Bells or any other type of stroke or palsy is this:

Start collecting cute eye masks. Once you get used to the feel you can really have some fun with them and your eyes will thank you for it. Just remember not to get them too tight!

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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