My eyes have changed over the last few weeks. They are so dry, but I use eye gel. Tearing at random, blurry when reading. Feels scratchy and like there's somethinf in them. Eye drops help for less than an hour. When reading I find myself inadvertently closing my right eye, left eye is better. Yesterday had to stop reading. Eye exam booked with clinic and also optometrist.Since being in bed this long, reading and watching telly on my.mobile phone have been the source of entertainment. Maybe too much screen time. Glasses Rx is just a year old.
Also, mouth is so dry and a horribly bitter taste constantly. Cracks at the corners of my mouth. My whole diet has changed. Sweets turn me off. Haven't had coffee for about 6 weeks. I eat very little as stomach muscles are pulling and tight from the back spasms. Sjogrens, yeast probs, oral thrush? GCA? BP? BS?
Suggestions? I do keep well hydrated. Drink mostly water, soda water (low sodium). Occasional apple juice.
I have that phone appt. with NP this morning, but my faith rests with our group. My mind is open though. Hope it's not GCA. Blurriness in mainly right eye is my concern.
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Missus835
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I can't comment on the other things, but eyes sound like dry eye/blepharitis. My symptoms are not unlike yours and one eye is definitely worse than the other. Often worse after screen time, but since having a tablet and not using the phone as much I think has helped. Hopefully, you should get some decent advice about which drops/gel /eye pads etc from your appt.
Waiting to see if rheumy actually calls with last week's blood work result; she never does. Had thought of Sjorgren. Still at 20 mg. Pred and weaning scheduled for Monday. Have a phone appt. with NP this morning. Do not have a GP. Could be combo of various meds I'm on. Thanks KJ.
Do you actually have Sjoegrens? Makes it more likely to be dry eyes and you probably need better eye meds. Mouth dryness can be improved with a product called xylimelts.
Don't know if I have Sjoegrens, but do have some symptoms. Will try Xylimelts. Thought I had conjunctivitis. Also thought of trying coconut oil pull for possible oral thrush. Ditto about rheumy. She probably wouldn't know anyway. Will ask NP about it as phone appt. In a few minutes. Thanks Pro.
The alternative that can appear alongside many autoimmune disorders is sicca syndrome - just means dry syndrome and is identical to Sjoegrens but without the antibodies.
Thank you. I'm most definitely dry. I will ask about sicca as well. Enjoy your day. She should have access to my most recent bloodwork. Fingers crossed.
I too have had very similar problems with the eyes. I have had dry eye, dry mouth syndrome for about 12 years or so but it all seemed to calm down while on high levels of prednisolone and return as I get to around 7mgs. In April, however as I reduced my prednisolone the outer edge of my lips became quite pink, dry inflamed and sore. I treated as a cold sore at first, then nurse prescribed antibiotics, to no avail and in meantime eyes started playing up, really dry and scratchy sticky and blurred in the morning and felt like something in them. My right eye worse than the left. Worse at night, with head-aches and my usual eyes drops gave no relief. I couldn’t remember them being quite this bad. I was away from home at the time and the doctor at drop-in centre prescribed antibiotic drops for eyes but said that the lip problem was a kind of dermatitis and to treat with Vaseline alone.
The anti-biotics didn’t really help and since examined by optician who said it was dry eye, so now applying ointment at night and drops during day, but whilst calming down they are still troublesome.
The edges of lips are better than they were, no longer sore or inflamed.
NB Years ago when this dry eye, dry mouth problem initially kicked in I found that I had to use preservative free drops and ointment as found I have an allergy to the preservatives and they triggered eczema around the eyes.
Thanks so much. My symptoms do parallel yours and yes have not been using the preservative free drops as they are not covered by pharmacare. Guess I will have to splurge on pension day. My mouth is cracked in the corners and of course, very dry and rotten taste. Probably med related. A very informative reply. Thanks again.
Have you ever tried acyclovir cream for the lip problem? I developed something similar, not typically cold sore-like but acyclovir always stops it in its tracks if started quickly.
I also had eye problems when PMR started - I had used contact lenses for years but a change in the product I used caused awful problems and I had to use preservative-free lens fluid and switched to dailies for a time before giving up altogether and going back to specs.
Is acyclovir OTC? No I've not tried it. I know I should be using preservative free drops and gel for my eyes as I have to use the drops quite often, especially now. I'm going to call my pharmacist to see what they have. Thanks again Pro. You are a treasure.
Hi there, thank you for your suggestion and sorry I didn't give much of a response initially. I am in the midst of trying to sort out all my bits of notes about various conditions.......it is so difficult to know what is due to PMR/GCA, what is arthritis, what is dry eye/mouth condition and what is something else, not helped by each problem, because of the shortage of GPs and the time limit of 15minutes, tends to be treated in isolation. Anyway the long and the short of it is, finding my notes re lips I see that I did try, Carmex, Blistex moisturiser, Blistex relief cream and then, on the advice of the pharmacist Acyclovir (I thought it sounded familiar, but memory not the greatest). It did feel great initially, but then it all became really inflamed and sore and hence my seeking doctors advice. I'm still applying vaseline. It is not gone away, and feels, dry and a bit tingly but no longer inflamed and sore. Its the skin around the edge of the lips as well as the lips.
I am now trying to get my notes more organised so that I can feel more in control and maybe post a question or two when I get there. Onwards and upwards. I wish I had been aware of PMRGCAUK when I had initially been diagnosed. I have found health unlocked so informative and supportive. Thank you
In searching for something preservative free I discovered HycoSan Extra (they do a night time ointment too, which leaves my eyes quite gummed up, I put eye drops in before the ointment and only put ointment in very last thing as you won't be able to read afterwards). Although expensive the eye drops last for 6 months once opened whereas before that I was using individual vials which was really costly.
Hycosan range very good. I have problematic eye and had vitrectomy in May. Also for Dry Eyes … they recommended Viscotear Eye Gel - comes in units of 30 at about £9.00 - really soothing and good. Does take a while though being a gel to squeeze it out!
I also got online clinitas soothe multi eye drops which has a higher sodium hyaluronate content (a good thing) and is also preservative free which someone on health unlocked had recommended. That only lasts 90 days once opened.
I am glad you are seeing an Optometrist. I share all of your symptoms and have for a number of years. I have Theolux Duo preservative free dry eye drops that work, on prescription for dry eyes and prescribed gummy pastilles for the dry mouth that are also effective. I am familiar with the bitter taste and coated tongue. My GP just prescribes palliative remedies. My feeling is that these are side effects from long term steroid use. I do need to keep on top of them or they worsen. I see my well equipped optician for thorough eye exams every few months and the NHS have me on a diabetis eye check because of borderline high blood sugar in the past. Unlike you I have sugar cravings and thirst. My bloods normalised though. I experience severe low back pain when standing for too long and have diverticulitis. Most of this I believe to be steroid damage.
Same No real sugar cravings, but thirst yes. Also have diverticulitis. Still stuck in bed and re-hurt my back last evening. Square One again for a bit.
Sorry to hear that.Bed is sometimes the only place I feel comfortable. I have a course of physio coming up, arranged by my Rheumatologist. Not the brick wall my GP suggested.
I Bathe eyes with cotton wool pads dipped in as hot water as I can stand and it really soothes the eyes also cold wet teabags . Look it up. Had this problem for well over ten years and above solutions help me. Pred side effects can cause eye probs according to the side effects literature.
Hi missus835. You have my sympathies. It's a very frustrating condition which I also have. It's also my right eye that's mainly affected. I have had dry everything (!!) for many years and was told, but never tested for, I could have sjórgrens syndrome. I use carbomer gel at night otherwise the dryness wakes me. Some mornings however I can't clear the blurriness and like you sometimes feel like I have grit in my eyes. Other days I wake and they are fine. I've tried using cucumber, a cucumber based eye gel on the lids and salt water drops which give brief relief. Reading everyone's posts where we have similar, multi conditions makes me think there's enough material for a PhD research thesis 😀
I was found to have age related macular degeneration quite badly in my left eye and a little in my right. I am now having a course of injections into my eyes which happen monthly. The eyes are scanned each time to check if they are improving. This is not uncommon and when I am at the clinic I am one of many being treated. The symptoms that led to this were very similar to those you describe. The treatment is by our NHS and therefore free. I was told that whatever is used is VERY expensive. I hope you will get a different diagnosis which will be easier to treat.
I suffer from dry eyes and it was worse when I was on pred. You probably already know this but try to use drops / gel that are preservative free. I had to get gel urgently on holiday and it wasn’t preservative free, for 3-4 days it made things better but then worse. I use preservative free drops at 0.3% HA which I think is the highest viscosity you can buy over the counter.
It sounds exactly like Sjogren's Syndrome. This should be treated by your rheumatologist. There is a blood test they will run first. If that's negative they will do a lip byopsy. There are special meds for the dry mouth and dry eyes. I also always get thrush so now I take a preventive dose every day. It has a lot more symptoms then just dryness but that is the main symptom. Joint and muscle pain are also symptoms as is fatigue. There is no cure but it also won't kill you. All that can be done is treating the symptoms. Like PMR it is an autoimmune disease.
I almost added the comment "it won't kill you but it'll make you wish you were dead!" But I thought that was a bit of a gruesome kind of statement to make.
I got some toothpaste and mouth gel from my dentist for my dry mouth, eye drops for the daytime and gel for bedtime from optometrist I thought I was going blind my vision became so poor I couldn’t see the computer… all PMR, methotrexate and prednisone related I feel your frustration to be honest the gel at bedtime helps the most after the 3rd day things were much better…
Thanks. Do you know the brand of eye drops/gel? There are times when it takes quite awhile to focus on my computer, not that I've been at it much over the last few weeks. My mobile is my computer, albeit much smaller display. I think going from one to the other wouls would cause focusing issues.
I find it interesting that you mentioned your vision problems were predominantly with your computer monitor. I have been having a significant amount of problems seeing my monitor. And it seemed to come on all at once. I have since seen my eye doctor and I've got new glasses and I've had my eyes rechecked after that but to no avail. My options are to move my monitor closer or buy a second pair of bifocals that would allow me to see the Monitor and the written paperwork on my desk. And in the US where I have to pay for my own glasses that's expensive. So I'm trying to find other options. One thing I found help is to increase the font size on my computer.
I have tri-focals, the middle lens being for the computer. My job...when I am able to work...is at the computer 7 to 10 hours. I did find my right eye irritated even 6 months ago when I was working. Mentioned it my useless rheumy. Might as well not bothered.
My optician here advised 2 pairs of specs - one for distance and the other that does the TV, the computer and at the bottom a bit for reading but the computer bit is bigger than the others because that is what I do most.
Makes sense. I have a separate pair for TV which is the same as the distance lens in my tri-focals. They wouldn't make the lens for the computer wider. Unsure why. Also, I got tired of switching from reading to computer and distance. I am far sighted so the distance isn't that strong, however, in the last few weeks I've found I see better without the distance lens. Go figure. I do have an appt. at the ophthalmology clinic in a couple of weeks about the itchy burning blurriness. Allergy pills do not help. I didn't feel it was allergies anyway. Unless I'm allergic to the detergent my daughter uses to wash my things and bed sheets. Hope not.
I can relate to all of those symptoms.. It sounds to me like dry eyes. I have them also and found even though I have a medication prescription eye drop.... I use Systane. SYSTANE can be purchased at the drugstore or chemist and you can use it 5-6-7-8 times a day, it's like an eye wash and gets rid of that Grit. Right after you put it in your eyes it'll be a little blurry but clears up quickly. I'm dictating this so forgive the errors.. It seems to capitalize at will. Take good care. Is the room you are in extremely dry? If you are hydrated I don't understand quite why you have those Cracks around your mouth.💞
When mine were super bad I used to put an ointment to Medicated ointment in my eyes at night. Can you get the Systane eye drops? I find it's like giving my eyes a shower and it's very refreshing. If you're happy I wouldn't mess with it, it's just an additional thought.💞
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