gca symptoms

[Reclus]

i've had pmr for almost five years now. i keep trying to reduce my dosage of prednisolone but each time i reach 8mgs the symptoms flare up again. i'm presently on 10mgs for the past two weeks. recently i've been having irritation in my eyes burning and blurred vision. it seems to be worse in the evening i put it down to watching too much tv. and reading so have cut back but it seems to come back each day although ok in the morning and early afternoon. yesterday i had a burning pain around my right eye and last night i woke with a headache and the burning seems worse. i wonder if i might have gca and when i should seek further advice. i am going for an eye test on thursday just to update my glasses i wonder if they would be able to give me advice. i don't want to contact the gp as i can never get an appointment and it's an hour on the bus to the nearest hospital. i would appreciate so advice. thanks

[PMRpro Ambassador]

Get yourself some good eyedrops - a chemist or the optician can advise. The symptoms do sound possibly due to dry eyes or overuse and I was amazed the different 2x daily eye drops have made to me.

The optician can examine the back of your eye if you ask and should get some information from that. It is possible you have an infection or something.

[Reclus in reply to PMRpro]

thanks for your reply i have tried eye drops all sorts but nothing seems to work. i can live with the irritation if that's what it is. thanks again

[PMRpro Ambassador in reply to Reclus]

It could be blepharitis - ask the optician. There are protocols to improve the symptoms.

[Reclus in reply to PMRpro]

thanks i have been given that advice and have followed the treatment prescribed still no joy i thought it might be an allergy and have cut back on all the sort of food that might have an effect even giving up my glass of wine but still have the irritation. i've tried steam inhalation etc. but if it is just an irritation/infection i'll just learn to cope with it.

[DorsetLady PMRGCAuk volunteer]

Sounds more like eye strain or infection than GCA to be honest, but as suggested by PMRpro get your eyes checked to make sure..

[Croft9232]

There are so many eye drops, ointments, gels etc. I too thought I had tried many for my dry eye, which isn’t helped by Pred or our age or tv/computer screens and reading.

But perseverance was the key, a 2% gel for bedtime to work through the night and Preservative free drops for the daytime.Both my Optician and Rheumatologist were a great help in finding the ones that suit me.

As you are seeing your Optician soon, perhaps they can advise trying something .

[Worthy10]

Hi Reclus. I am have just tapered to 11 1/4mg of pred from 12.5mg and at the moment no adverse reaction. Think people different reactions. Sorry I can’t of my assistance.

[Pritch60]

Hi Rectus….It could be that you’re trying to reduce too quickly…….slowly, slowly worked for me……but I am still in 1mg after years of PMR and GCA.

For your peace of mind it is worth getting your eyes checked as altered vision and headaches can be signs of GCA. Depends where you live you might be lucky enough to get a scan of your temporal arteries - a simple process carried out by a suitably trained rheumatologist…

[Ancestry1234]

Obviously everyone reacts differently so suggest you have to go through some trial and error. Like you I have been on steroids for a number of years and have found that in reducing you have to listen to your body. Maybe you are not staying on your reduced levels long enough for your body to adjust before reducing again. Go back to the level where you felt okay and try reducing slowly taking the lower level every other day or two to give yourself time to adjust to the lower level and gradually taking more of the lower amount until you body has adjusted.

Good luck

[48er]

Hi I was diagnosed with PMR 3 1/2 years ago and prescribed 30mg prednisolone (for what I would now count as mild symptoms) my then symptoms disappeared. I was told to taper and when I reached 20mg my symptoms gradually returned. My rheumatologist tried several other medications which didn't help at all. I contracted Covid in December 2020 and was bedridden for 4 weeks, finally crawling downstairs to spend 2 weeks resting. I was diagnosed with Long CovidOver the last 2 years my symptoms have worsened. I've seen consultants for neurology and haematology but no relief. I stopped prednisolone 6 months ago as there seemed to be no benefit and had caused high blood pressure, weight gain and other issues.i now have blood pressure back to normal and losing weight

8 months ago after a 5th covid booster, I felt a lot worse, aching all over and exhausted symptoms increased. I'm 74 and still work full time in an HR team in a factory, but only from sheer will power do I get up every day. But everything else has gone, no social life whatsoever

I sometimes think going back to 30mgs prednisolone might be my chosen option but medics won't allow

I'm inclined to think it's Long Covid but advice is very sketchy on this

So no clear advice, other than keep trying to adjust your dose to a point that suits you. But keep an eye on the rest of your body!

All the best

[Reclus]

thanks for all your advice such a comfort to know there are others out there who understand.

[Thezillionthsue]

I had the same problem. I could not reduce below a certain level as every time I tried, the symptoms came back

However on seeing a different GP I was told that the pain I was having was no longer Polymyalgia but was due to arthritis 😯

So it seemed I had been unnecessarily on Prednisolone for years, which has caused me other problems.

I'm obviously not saying this applies to you, but worth asking whether you do definitely still have Polymyalgia. My inflammation levels weren't being checked as they should have been. 😡

Also, if you can't get a GP appointment I would phone 111. In my experience, if they think you need to see a GP they will get you an appointment with one quickly, though it may not be your own GP.

It may depend where you live, though. I'm in South East London.

Also, when I thought I had symptoms of GCA my then GP sent me to A&E (it wasn't) so if you are worried you could try that.

Good luck. I hope everything gets sorted out. X

[PMRpro Ambassador in reply to Thezillionthsue]

" I could not reduce below a certain level as every time I tried, the symptoms came back

However on seeing a different GP I was told that the pain I was having was no longer Polymyalgia but was due to arthritis"

So what did you do? And what happened?

Now WE would say that is normal with many patients whose PMR lasts some years, which is common, You aren't tapering relentlessly to zero, you are looking for the lowest effective dose at any given time. And when your body repeatedly puts its foot down at a similar dose, you have found that lowest effective dose. It doesn't mean you won't get lower - just not yet.

That is fundamentally the basis of this fairly recent publication from one of the top experts in the field:

ard.bmj.com/content/early/2...