I was diagnosed with PMR in May 2016 ( may have had it for several months). I have tapered down to 7 mgs and hit problems when I try to DSNS to 6 mgs. Apart from deadly fatigue my most troubling symptom is eye strain. It is actually fairly unbearable, it feels as if my eyeballs might burst. This is accompanied by a mild migraine type headache not relieved by painkillers. I am photosensitive and eventual relief is obtained by having my eyes closed in the pitch dark. This is the reoccurrence of an old symptom. I had fairly comprehensive eye checks by an ophthalmologist early cataracts were found, my eye pressure was normal. Nothing else except dry eyes that I use drops for.
This does not fit GCA I know and it may be a Pred side effect due to length of time on it rather than size of dose.
Has anyone had this symptom? Does anything help, apart from living like a mole?
I see the GP tomorrow.
I had exopthalmic goitre with Graves' disease 30 years ago, very prominent eyes for a while.
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SheffieldJane
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With PMR I've certainly found that my eyes are more sensitive to bright light and get 'tired' easily. I read somewhere that the optic nerve uses a lot of energy so, to me at least, it makes sense that eye strain could be yet another consequence of the body and brain's energy battery being 'low'. Also, I'm always aware that the inflammatory 'stuff' of PMR is washing around in the blood generally, and can find its way into every bit of you (not just the usual places).
I've also had a few episodes of slight migraine with PMR and / or the Preds and, like you, I really appreciate total 'black out', especially at night to help me sleep. I actually look forward to the darker evenings / mornings at this time of year - never thought I'd find myself saying that!
Sounds like you're doing all the right things - regular ophthalmic checks, GP consultations etc. But, as always, I'm sure the Aunties will be along soon with their greater wisdom..
MB
aka 'Old Four Eyes'
(Background: PMR since 04.2015, currently at 3mgpd Pred)
That helped Mark, good sound common sense. My great escape is reading, I always have a book on the go. I've just realised that the last time this symptom was really troublesome was last year, when I had flown, taken boats and trains and read, read read. Blast! D*** and blast!!
Anytime my eyes go weird or I have a headache, GCA is the first thing that comes to mind. Everything I read about GCA stresses the painless nature of loss of eye sight, but still, Im paranoid
It's so uncomfortable to have anything wrong with your eyes..I get the bulging eye feeling when my BP is high.Ive been having trouble controlling my BP...if I take a minimum amount of BP meds, it goes way down to the point of getting dizzy, etc., but when I skip a day of the meds, it goes back up high to where I have headaches and my eyes feel weird.
PMR or the pred., not sure what, but my eyes are definitely affected .. I've gone to three different ophthalmologists and they all day basically the same...early cataracts, dry eyes and how to manage them, no intraocular pressure. The last one I went to said I had blepharitis.
That sounds really similar and I do have steroid induced hypertension for which I take Atenolol 50 mgs and Amlodipine 5 mgs something I just accepted because my blood pressure was always raised. Not even sure that they make sense together, two separate GPs. I find being bounced about in bed really uncomfortable too ( ha ha) my OH twirls around like a dog before he settles. Shoot me now.
I was precribed both -Atenolol not so high - along with Ramipril and Apirin in the dark ages when it was the 'in thing' to be on a cocktail rather than one drug for HBP.
GP left me on them during GCA/Pred years, but now only on Ramipril and Aspirin.
I think I'll ask for my BP meds to be reviewed, sometimes there is no joined up thinking about prescriptions. Thanks DL, your blah blah made me laugh, more like blerg blerg. X
My second doctor said " Oh we don't prescribe Atenolol for high blood pressure anymore have these ( Amlodipine) When I asked if I could stop Atenolol she said she wasn't sure what would happen, so I'd better not. Great!
Polypharmacy is a major cause of hospitalisation (never mind multi-morbidity) in the elderly. And it is very often due to that sort of approach by GPs. They dish out so-called "better" medication and don't stop the old stuff and then wonder why the patient comes over all funny and falls. breaking hips or whatever...
Just google polypharmacy and morbidity!!!!!
However - it still seems to be in use although questions were asked about using it in 2004. But that s hardly recent is it?
You told me that before, PMRPro, when I developed a cough with a medication that ended in "pril". You said you took a very small dose of two different medications. But I must be one of these people that are under the effects for over 24 hours ..so when two doses overlap, my BP goes way down which is uncomfortable,too, so I " forget" to take a dose here and there and my BP goes up again and I get the headache and weird eye symptoms.
Sorry to hear about your eye problem. I had a similar problem earlier this year where I felt my eyeball was going to burst..so painful with any kind of eye movement. My opthamologist put me on a course of 40 mg of preds for five days and that seemed to do the trick.
I do have n stage glaucoma so not sure if your eye problem would react the same.
Hi Sheffieldjane, I am reading your post with interest and was pleased to find your post a year ago about the matter.
Recently I reported the pain in the back of my eyes to my GP and he referred me to my Optician who was extremely thorough when I saw him last Thursday and reassured me that there was nothing to worry about in terms of raised pressure, nerve damage, cataracts or glaucoma but did confirm some reduction of oily film on the surface (dry eye) and "tortuous blood vessels" but nothing to explain the pain.
This was very comforting and I have to say the pain reduced after his reassurance so clearly the stress was an additional factor. Also a migraine treatment (zolmitriptan) helped afterwards.
What the Optician did say was that his tests and investigations would not show up GCA, which like many others here remains a terrifying prospect, with the regular pain in my jaw adding to my anxiety.
My GP told me to taper to 6mg from 7.5mg at that appointment and I knew from the start that would not be possible. I am experiencing more extensive pain at 7mg and certainly not planning to go any lower at the moment. PMR has been with me since January this year, and a daily challenge!
Thank you for taking time to write when you have your own health worries. You've helped me in that I saw a GP this morning who did a few basic vision tests and noted that Optician tests with state of art equipment had failed to show anything a few months ago. She decided it was Migraine and prescribed pills for it. I feel sure that it is more connected to either Pred or the blood pressure meds. Blood pressure was normal rather than raised for once, so she's leaving those pills as they are.
However, if Migraine tablets relieve it maybe I should give them a try when it next happens.
I am loathed to add another pill to the cocktail and concerned about the effect a pill that widens blood vessels will have mixed with PMR, a beta blocker, blood pressure pills and Prednisalone . I really have little faith in most of the medics I come into contact with I am afraid.
A thought about your jaw pain, you may be clenching it as you are under stress. I keep catching myself doing that. Perhaps we need some mindfulness classes. 🌻
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