Hate being ill

[Tarryn28]

Hi I'm 48 and have recently been diagnosed with this horrible illness along with GCA I am on 40mg of Pred a day, I don't feel any change in my symptoms, should I . I do have a long list of other medical problems , I suppose I was hoping for an instant fix with the steroids, feeling very low today and exhausted. I am still in an immense load of pain should I go back and see my doctor.

[Labradorite]

I am sorry that you are feeling so unwell. I think you should make an appointment to see your doctor as soon as possible as you are in such pain and feeling low. If you develop severe headaches and/or problems with your vision, ask for an urgent appointment.

I had GCA, without PMR at first. Starting prednisolone brought immediate relief from the symptoms of GCA.

[Hindags]

So sorry you are feeling so low and without relief. How long have you been on steroids? Did you have a positive temporal artery biopsy? It can take several days for relief for some people. It GCA can threaten your eyesight so if you have a positive biopsy and it's been more than a few days, you should let your doctor know status. Many people with GCA start at a higher dose.

[Jackoh]

Think like the others perhaps need more info. Are you under a Consultant Rheumy? Have you had a temporal biopsy? ( not that that is definitive) Like others I think maybe you need to go back to your GP, asap and tell him how you feel, you might need a higher dose of Pred and certainly if you have any trouble with your eyes go immediately to A&E , no messing! Best wishes. Let us know how you get on.

[Woodiesmum]

I have GCA and pmr

I have ben on treatment for over a year now x they couldn’t understand why my symptoms didn’t go until they did a Doppler scan on my head and found thickening in my head and they had not expected that x so up on the steriods again 60mg x I am there on Thursday so hopefully it will get dropped x as this time the GCA symptoms are better but the steriod side affects are horrible x

Also please be aware of your eyes and wear sun glasses when out cos we were told at a meeting by an optician that the steriods cause cataracts and I went the next day and guess what Yes I have the start of them now x I am 53 x but we worked out that this condition had been with me for years x Good luck with your treatment and don’t take no for an answer x

[AnnS in reply to Woodiesmum]

Interesting info about sunglasses. Is that just in bright light or on dull days too?

[Woodiesmum in reply to AnnS]

It’s the uv light that damages eyes but when on steriods it causes them more problems x

I have reacter lenses so darken when I go out and lighten inside x so win win win x

I was shocked that I have cataracts already x

[AnnS in reply to Woodiesmum]

Yes that's horribly early. I was told 2 years ago that I had the very start of them but my opthalmic doctor could see no sign and thought the other doctor might have just been angling for some business. Now I'm on Pred I think I should probably go back and see him for advice. I'm already on another drug that can affect eyes so have regular checks but perhaps reacter lenses are a good idea. Being ill is SO expensive though. I've just spent a small fortune on lightweight varifocals (which are very hard to get used to) and now I think I might need something else. I'm 63 though, so I suppose much of it is to be expected.

[Woodiesmum in reply to AnnS]

Please get them for your eyes x I wear varifocals and I love them x but my eyes do go out of focus a lot and gnat only started after the steriods x

Will see what he has to say tomorrow x will let you know xx

[DorsetLady PMRGCAuk volunteer]

Hi,

As others have said, if you have GCA. then 40mg is really the minimum dose, so if you still have pains then either you need a higher dose, or it’s not GCA.

You need to go back to doctor explaining everything, and ask to be referred to a Rheumatologist.

Good luck, please keep in touch

[AnnS]

Hi Tarryn. I'm sorry you're feeling so horrible and I can sympathise because I'm in pretty much the same situation as you and also have a long list of other conditions to complicate matters. I too started on 40mg of Pred, now reduced to 30mg, and haven't had the relief I was expecting. I have had some horrible steroid side effects though so really, I'm feeling just as bad as I did at outset and getting really miserable with it all. What the Pred DID do, however, was dramatically lower inflammation levels in the bloods, which is obviously a very good thing.

As the others have said, I think you should go back and see your doctor straight away and get referred to a rheumatologist, if you don't already have one.

Stick with this forum too. Being a newcomer, I've already found it invaluable and the friendly and knowledgeable people here have actually been more helpful to me than the doctors, particularly in those horrible moments of anxiety and misery.

[Grants148]

Hi Tarrin,l cannot add anything more to all the info that the others have given you,l just hope that you will soon be feeling much better.

[PMRpro Ambassador]

If you have been diagnosed with possible GCA you need to be started on a dose that reduces the symptoms dramatically - and if 40mg isn't doing it you need to be on a higher dose, Quickly.

Who made the diagnosis? If it is your GP he needs to arrange an EMERGENCY appointment with a rheumatologist. Some hospitals have fast-track set-ups so patients are seen very quickly but if your local hospital doesn't the GP needs to contact the hospital to arrange an immediate opinion.

Where are you?

[Woodiesmum]

I was on 60mg of pred last year and because of symptoms still happening when I reduced there was a question mark is it GCA x well I got a Doppler scan a few months ago and it showed i still had thickening on left side head x

Again this seemed to put questions in the air so rheumy put the steriods back up to 60mg and at last the symptoms started to stop x I have more problems from side affects from steriods x

Well went yesterday and he is reducing to 50mg so over the moon and going on some new tablets methotrexate so hopefully this is a new start x I feel so much more positive .

But the funny thing is we felt he hadn’t believed me so I felt defensive before I went it but it was great so supportive and there’s a big conference coming up and he asks me if he can discuss my case in front of everyone xx well chuffed