Thanks everyone

[SherryAnnie]

Reading the posting I seem to have what everyone is on about, mine started in 2010 full of aches and pains plus so tired all the time my Gp did not know what to do with me and I was beinging to think it was all in my mind. Then in 2012 we had a young student doctor for 3 months she fought for me to have a CRP blood test the next thing I knew I was rushed into hospital as the CRP was up at 300 where I was told I had GCA plus PMRG (I never do things by half measure so my hubby always says ) Have gone through all the treatment still on low dose of preds and still having lots of problems the main thing is I am so tired all the time plus my sight is badly effected and getting worse. My health is not the best with lots of other problems one of which is CKD and I can handle that but PMRGCA is really getting me down and it is not fair on my hubby

[Celtic PMRGCAuk volunteer]

I'm assuming you are getting your optician to periodically examine the back of your eyes, and that your GP is routinely carrying out ESR and CRP blood tests to check that the inflammation is under control and not the reason for worsening eyesight and tiredness? Also, you need to be sure you are on the correct steroid dose that is maintaining control over any inflammation, remembering that the lower you get on the dose the higher the percentage drop each time - tapering ever more slowly and in smaller amounts can prove more successful at these low doses. I both sympathise and empathise with the CKD - mine is at level 3 - that's one extra problem we could do without.

[SherryAnnie in reply to Celtic]

Yes I do have my eyes checked at the hospital and they say nothing can be done to help to slow things down and regular CRP tests but never been told if they do a ESR test and what it is for. As for my Ckd one kidney is down to 15% and of course having PMRGCA does not help the matter.

[Celtic PMRGCAuk volunteer in reply to SherryAnnie]

The ESR test is just another marker of inflammation. However, the CRP test is often considered by doctors to be the more specific marker of the two. I'm assuming your CKD is at level 4 - was it diagnosed before the onset of PMR/GCA or some time afterwards?

[SherryAnnie]

a good few years before PMR/GCA. I had a call from the hospital yesterday seems they are doing a research program on GCA so I answered their questions and have requested that they keep me informed on what is going

[jinasc]

Sherry, you wrote "plus my sight is badly effected and getting worse".

You need to see your GP and your Consultant pronto and if not a Consultant Opthamologist, your eyes should not be getting worse if you are on the correct dose.

Sherry this is not a matter to mess around with you must make them take notice of you.

It sounds like your GCA is not under control.

[SherryAnnie]

Yes I do get my eyes checked about every 3 /4 months but always get told the same nothing can be done they have now registered me Gpart sighted. What is getting me down so much is feeling totally drained/ dizzy/just want to sleep all the time. I'm down to 2 1/2 mg of preds a day and wonder if I up it would help my GP does not seem to know much about it

[PMRandRA in reply to SherryAnnie]

You should get yourself to A&E pronto as this is a medical emergency and your Doctor should know that. If you call 999 and tell them you are having symptoms of GCA they will treat is as an emergency. But even if you get to hospital and they tell you that you are OK then it is still worth the trip. 2.5mg of pred is a very very low dose and will not fix GCA.

Shout SherryAnnie, don't let them do this to you.

[Celtic PMRGCAuk volunteer]

Sherry, if you are under a rheumatologist then do seek some advice from him/her about your fatigue and dizziness. Also get them to refer you to an ophthalmologist for a thorough investigation of your eyes.

Yes, it is possible that an increased dose of steroids, say to 5mg, may help you to feel better, but you really need some expert advice for your eyesight.

Some people find that they cannot reduce below 5mg, and, in that case, you should request a Synacthen test to investigate whether your adrenal glands are back up to speed in making sufficient cortisol (the body's natural steroid) following the usual production having been suppressed by the high dose steroids.

I'm assuming you have had your blood sugar levels tested and been found not to have diabetes which can also affect vision.

Do get everything checked out - and the sooner, the better - and keep in touch to let us know how you get on.

[SherryAnnie in reply to Celtic]

Yes I am diaetic but that is fully under diet control and it was checked out last week infact my GP sent me into hospital last Friday as I felt so ill but was taken into SAU because of a history of severe bowel problems which may I add have not had any problems with for years now waiting for appoinment to see the bowel surgeon they did not seem to worry about me having PRM/GCA