My GCA journey

[Labradorite]

Hi,

I am a newbie having just joined PMRGCAuk. I am a 68-year old female who had a GCA diagnosis confirmed in December 2015. (My younger sister had GCA and PMR, and my mother had PMR.) I was treated as an out-patient in the rheumatology department of the orthopaedic hospital where I live, and I consider myself fortunate to have received the specialist care provided.

When GCA was first suspected I was started immediately on a prednisolone dose of 60mg per day, which was tapered gradually to zero over a period of approximately 20 months. I did have one or two PMR flares and twice I had to return to a higher dose. While on prednisolone I was also prescribed aspirin, omeprazole, alendronic acid and a calcium/ vitamin D supplement. I have kept reasonably well, although initially I did suffer from dizziness and I continue to experience fatigue, stiffness, aching muscles and tendinopathy.

At my last hospital visit in July, ultrasound scans of the temporal and axillary arteries were normal. The rheumatologist told me that the symptoms I described were most likely due to the effects of the cumulative dose of prednisolone and he did not think I had PMR. He referred me for physiotherapy and transferred me back to GP care. My GP organised blood tests about 7 weeks after coming off prednisolone, which showed that my inflammatory markers were not elevated.

I have soldiered on for weeks now with pain and stiffness that make sleeping and carrying out everyday activities increasingly difficult. My mood is often quite low. I was advised to take analgesics, but paracetamol does not really work and I am reluctant to take it on a daily basis. I find it hard to accept that my symptoms result from steroid deconditioning alone and I think that I may have PMR. Has anyone had a similar experience?

[SheffieldJane]

Hello Labradorite!

Your symptoms are ringing awful PMR bells. It is perfectly possible to have PMR after , during or before GCA and with your family history all the alarm bells are ringing. No wonder you feel low!

You probably know that some of us have the whole thing without raised blood markers. It looks like PMR is making a re- appearance and needs to be slapped down with at least 15 mgs of Pred. But what do I know? I only live with it every day. Would your doctor consent to a 2 week trial of Pred to find out?

I hope you get the instant lifting of a low level depression that I got too.

Don't suffer in silence, insist on the help you need.

[Labradorite in reply to SheffieldJane]

Thank you for your prompt response SheffieldJane. I have an appointment with my GP at the end of the month and I will ask for a prednisolone trial, as you suggest.

[DorsetLady PMRGCAuk volunteer]

Totally agree with SJ, sounds suspiciously like PMR, and as you know painkillers won’t touch it - the only way is Pred.

A return visit to the doctor I’m afraid!

[Labradorite in reply to DorsetLady]

Thank you for your response DorsetLady. I have an appointment with my regular GP at the end of the month.

[PMRpro Ambassador]

About 20% of patients with PMR or GCA do not have raised inflammatory markers - and some people who have had raised markers originally don't always have raised markers later for some reason. No-one knows why.

The fairest thing your GP could do is allow a trial of pred to see if it relieves your symptoms. If it doesn't it would suggest it isn't PMR but if it does - it is something other than the "left-overs" from pred. Which I don't think are half as common as rheumies appear to think.

[Labradorite in reply to PMRpro]

Thank you for your helpful response PMRpro. I have an appointment with my GP at the end of the month. I shall ask for a prednisolone trial, as you suggest.