Eye aches making life miserable

[Dubonnet]

My husband has had PMR since January this year. He is on 5 mg of Pred. Recently he has had more pain in the legs and will have to go up to 7.5 mg . His inflammatory marker has gone up as well, after a recent blood test. He gets very despondent about the PMR as it limits everything he does. He couldn't manage a short walk the other day as he was so full of aches and pains, so we can no longer have country walks together. The worse thing at the moment is a constant ache in his eye.He has talked to the doctor about it but she doesnt think it is linked. He has booked an eye test, but I am sure I've seen on this site that eye problems can be linked to PMR . Any advice would be so helpful.

[123-go]

So sorry to hear your husband is struggling and horrible for you to see him like this.Yes, eye problems are well known to be associated with PMR and this should be investigated thoroughly and immediately. It would appear that the GP isn't as knowledgable about PMR as the disease requires. What dose of Prednisolone was he given on diagnosis and was he ever pain free?

Others will be along but in the meantime have a look at the 'related posts' on the right of your screen.

I would suggest that he needs to see a consultant rheumatologist and should ask to be urgently referred. An appointment may take some time due to the current situation but I feel you should push for this considering his symptoms.

I would also advise an immediate appointment at an optician's telling them of your husband's condition and ask that the opthalmologist takes a good look at the back of his eyes to make an assessment. Most opticians are well-versed in this and will give you information straight after the examination.

Pleas don't allow the GP to fob you off.

There are many on the forum who have extensive knowledge so please come back to read what they say.

You aren't alone in this.

[jinasc]

Diagnosed in Jan this year, was your husband started on 15mg or 20 mg?

When starting on pred and then tapering down, no more than 10% at time and taking at least a month to drop the dose and watching to see if it is working.

To be down to 5mg within that timescale is very fast. I would be going back up to the dose on which he was comfortable and stay there for at least a month then use one of the tapering plans. You can find them on the right hand side of this page. 'Tapering Steroids'.

I understand his frustration as you cannot see an end - I wonder if you both took a look at the video on You Tube, 'You are NOT Alone' (link in the FAQ's) would help him to understand more about PMR. It is not life threatening just a big life style change.

It is good that he has booked an eye test as well. Opticians know about GCA as well.

Remember that you cannot win against either PMR and/or GCA they have a mind of their own, they come when they want and go when they want and the pred is to manage to live your life as comfortably as possible.

[Dubonnet in reply to jinasc]

Thanks. I shall look at the video. I think he started on 10 mg and he is down to 5 now but he will go back to 7.5 ...A tablet and a half. He thinks this is a set back but I have read lots of posts and I think it is normal for there to be this fluctuation in the condition. Thanks for the reply.

[PMRpro Ambassador in reply to Dubonnet]

10mg isn't really enough for a starting dose - you have to springclean before you can get away with dusting! The existing established inflammation must be combatted thoroughly and then you reduce the dose to find the lowest effective dose - the lowest amount that manages the daily dollop of new inflammation created each morning. The steps down must be small beow 10mg - and 2.5mg at a time is too much, you need small adjustments to find the dose most accurately. If you go too low then the inflammation will build up again until you are back where you started.

Living well with PMR is possible though very long or hard walks may be too much - but you need enough pred, you can't rush off it, it is a chronic condition and you need what you need to manage it

[Dubonnet in reply to PMRpro]

Thanks. He wasn’t diagnosed until March… I thought it was the January but that was when he started to feel so unwell, took ages to get it all sorted. They started him on 15 mg of pred. He has slowly dropped to 5 mg but probably it has been too quick a drop. He was so wanting to get better I think he hastened it too much. He is going back up to 7.5 and I shall try and persuade him to listen to his body and not try so hard to think he is able to do without the drug. Sadly even a short walk seems difficult. He says he can’t stand for long either. He either has to keep moving or sit down. Standing seems really difficult. I’ve suggested one of those shooting sticks that you can lean on but he won’t do it. He won’t look at this site either so I have to try and research for him!

[PMRpro Ambassador in reply to Dubonnet]

Sounds like a fairly typical male in denial ... He has to find out for himself - and he cannot rush it.

[HeronNS in reply to Dubonnet]

Just a point of interest. When I got to 4 mg I found my legs didn't want to work well. I felt like I was walking through water. It was the level where my adrenal glands had to start working again. This could be contributing to his symptoms.

Mind you, it sounds like your husband's dose is currently too low.

[Bcol]

Morning Dubonnet - not drunk one of them for a very long time. So sorry ton hear of your husband's troubles. Couple of things come to mind, has this present set of pain just come about or has he had them all the time he has had PMR. If they are newish I would possibly look at increasing your/his Pred dose to the amount when he was last out of pain and relatively comfortable, staying there for a few weeks then use one of the tapers ( in FAQ's) to reduce very slowly and staying at the new dose until feeling comfortable to move down.Eye pains and associated problems can be serious and I would also suggest that a visit to your optician as soon as possible, preferably today, is needed. If they get worse then do not hesitate to ring 111 or go to A&E.

[Dubonnet in reply to Bcol]

The eye problem is an issue over the last few months and definitely getting worse. he says it is too painful to read, which is worrying. It is seemingly impossible to get an eye test quickly. his is next week I think, after a 2 week wait. I shall tell him again about the need to increase the dose to a point where he feels pain free. he sees it as a set back and disappointment. Thanks for your reply.

[Bcol in reply to Dubonnet]

Hi Dubonnet, My own thoughts are that eyes are too important to be worrying about. If they are getting worse I really think you should consider ringing 111 or going to A&E to get them professionally checked out.

[Dubonnet in reply to Bcol]

Thanks. I bought him eye drops ages ago that he hasn’t used .He says it isn’t too bad today so we will just wait for the eye test. He tried getting one quicker but no local opticians had any availability for weeks. I helped him with the eye drops today and he said it helped. Says his eyes feel sore, gritty.

[Bcol in reply to Dubonnet]

OK, but please, please bear in mind the comments in my last post.

[Dubonnet in reply to Bcol]

Thanks. I’ll certainly be aware and keep watch over him.

[SheffieldJane]

At one point during my PMR I got an awful symptom of eyestrain that also involved photosensitivity. An almost bursting sensation. Eye checks showed nothing that was causing abnormal pressure. The only thing that relieved it was a nap - total eye rest, sometimes with a heated mask. This symptom, like many others, disappeared without explanation. I can certainly relate to his despondency. This wet weather is causing a lot of extra pain for me, I think my osteoarthritis is also causing trouble. My walking was really helped by the Nordic walking poles that Heron recommends. I even managed a craggy cliff path on a Greek Island with their help.

[123mossie]

Sorry to hear that symptoms are bringing you both down. Good advice has been given here, it seems that the inflammation isn’t under control and it’s only getting enough pred that will help with that. Quality of life is so important, even though achieving it may seem like taking a step back. Pmr is always in charge sadly, we just have to go with the flow & go slowly, slowly. Hope you both feel better soon.

[Dubonnet in reply to 123mossie]

thanks

[Dubonnet]

Well done to you , doing the cliff path . Ah, the thought of a warm greek island ! I know it would be useless me suggesting he uses a walking pole, even though I have a very neat pair for walking holidays,which Covid has put an end to for a while. He does rest his eyes a lot, just sitting watching the birds from the sitting room. he doesn't read that much. But he DOES watch a lot of videos etc on Youtube, usually car or motor bike related. So maybe that doesn't help. Thanks for your reply.

[SheffieldJane in reply to Dubonnet]

Well serious walkers use them. I saw plenty of brawny Germans with them. Yes the thought of that soothing Greek warmth.Low mood can descend with this, keep an eye on him. If it persists, it should be treated.

Screen work plays havoc with the eyes, that caused mine I think. The muscles are weaker. Has he adjusted the blue screen etc?

I have at least a dozen goldfinches at my feeders. They are fascinating, I think we’ve had 4 lots of babies this year.

[Dubonnet in reply to SheffieldJane]

Lovely to have Goldfinch youngsters. We are keen bird watchers and used to do lots of walks, but now I have to go without him. It is such a shame and sad that he can’t do any of the bird walks any more. Fortunately we get lots of the woodland birds in the garden. Thanks for your answer. I’ll try again to suggest the walking poles. They don’t get much use these days !

[Sharitone]

I sympathise with his frustration, though I think 5mg after only 10 months is impressive! My eyes are photosensitive, particularly watching TV, and sometimes it helps to wear low-strength sunglasses.

[piglette]

Has your husband ever been nearly pain free? It was just that starting on 10mg may not have hit the PMR on the head totally. On the correct dose of pred he should be able to enjoy a short walk unless he has other problems too. He must realise however that PMR is life changing and he needs to rest. He cannot just carry on as if nothing has happened. He can try and getting involved in other things he did not do before. I have started joining in on wine and cheese webinars!

[Dubonnet in reply to piglette]

I think about 1 mile is the max for a walk at the moment. Which is really not far at all. He will increase the dose and hope that helps. he cant get an eye test nearer than the date set for 2 weeks time so we will have to wait and see. Fortunately he is a keen motorcyclist and he can ride the bike without too much pain as his weight is not on the legs. Thanks for replying

[piglette in reply to Dubonnet]

If his eye problem gets worse or he has problems eating or his scalp becomes tender I would go to A&E. Eyes are too important. I am glad he has a motor bike to enjoy! I know a mile with PMR can feel like climbing Everest.

[Dubonnet in reply to piglette]

thanks. I shall keep vigilant.

[Gardenbay]

I was diagnosed in March of this year, I started on 15 mg and told to drop by 1 mg every 28 days, I am now on 6 mg once I have done 28 days I then drop 1/2 a mg a day. I ache a little but I work through it. Keep smiling,

[Nextoneplease in reply to Gardenbay]

Well done Gardenbay 😊 x

[Dubonnet in reply to Nextoneplease]

That is exactly when my husband was diagnosed and he was given the same directions re the medication. He was down to 5 mg but has gone up to 7.5 mg recently as he had such aches and also the eye problem. It’s a bit of a trial, this PMR .

[Dubonnet]

I’m not sure how to write an update , but here goes. My husband had such pain in one eye and we didn’t know why. He booked an eye test but had to accept one weeks away. He then increased the prednisone as his legs etc ached so much. Bingo ! The eye pain has gone and the aches are less intense. But the pred affects his sleep …he says he gets awful dreams…. And it also lowers his moods so he feels quite depressed and low. So he wins one way and loses another. Still, at least the eye problems have sorted themselves out.

[PMRpro Ambassador in reply to Dubonnet]

I don't think you can say it has sorted it out - you don't know what the cause is and that does need to be investigated. It must have been some sort of inflammation and there must be a cause.

[Dubonnet in reply to PMRpro]

That’s a good point. He was so relieved that the pain had gone. He has an eye test in 2 weeks time so he will tell the optician his condition. I hope it is a good optician that listens and is well qualified.

[PMRpro Ambassador in reply to Dubonnet]

Are they part of the MECS scheme?

primaryeyecare.co.uk/servic...

They should be able to provide faster responses than that

[Dubonnet in reply to PMRpro]

I've never heard of that scheme. Thanks. I'll pass on the info.

[PMRpro Ambassador in reply to Dubonnet]

See - should have read the FAQs - there's a post there from MrsNails about it. The scheme covers a lot o stuff - and they have better equipment than the average A&E so it really is useful.