GCA query

[SanG55]

After my recent posts and your very helpful answers, thank you, I have been reading FAQs and old posts and wondering about a couple of things. On waking I have severe lower back pain which means I want to keep my body bent, it will subside as day goes on but is debilitating. Also the eye situation - my sight is not as it was before GCA diagnosis and I’m not sure if I should go back to optician and have another eye test (last one 5months ago) or is my sight going to take a while to settle? I feel a bit wobbly, like I have been wearing the wrong glasses and/or stepped off a boat! Is fatigue part of GCA? My brain tells me what I can do in a day, my body tells me differently!

Thank you as always

[DorsetLady PMRGCAuk volunteer]

Always sensible to get eyes checked, especially with newish diagnosis of GCA… but would also say that higher doses of Pred can cause the issues you describe. But to put your mind at rest get them tested. Did you have issues which led to this diagnosis or has it come on since upping Pred?

Fatigue is part and parcel of any autoimmune disease - and again Pred doesn’t always help.. so until it eases, listen to your body

Back pain is not usually connected to GCA. How are you sleeping?

[SanG55 in reply to DorsetLady]

Thanks for your prompt reply DL. I have been having disturbed sleep since the increase in steroids a couple of weeks ago. I am unaware of my back hurting until I go to get out of bed! I had new glasses after my last eye test and have not really got used to them (an ongoing dispute regarding a scratch on lens has made me reticent to go back, although the actual optician seems very good and knew about GCA). Think I’ll grow up and make an appointment! Always worry they’ll say I can’t drive - although I feel nowhere near that point! Obviously wouldn’t want to drive if I wasn’t safe. Thanks again DL 😊

[DorsetLady PMRGCAuk volunteer in reply to SanG55]

Many cease driving when initially in higher doses until things have settled… and then feel fine yo get behind the wheel again.

Back sounds a different issue -and probably mechanical. Might be good idea to get it checked to see if there is an obvious answer, and then try exercises, but you need to know what it is, to make sure you do correct exercises… but perhaps just some gentle stretching initially.

[PMRpro Ambassador]

The easy question first - yes, fatigue is definitely part of GCA! It is a serious systemic illness and continues in the background - pred is only mopping up the inflammation so it does less damage.

SnazzyD and I both found our vision changed from day to day almost - took us longer to adjust from close to distance vision. We solved it by moving our specs up and down our noses to imrove focussing! Cheaper than frequent prescription changes - I never spent much on lenses so didn't go for variofocals because it was easier to adjust the position of single strength lenses. But regular eye checks are important - just not necessarily with a new prescription.

Do you have any component of PMR in your symptoms? I have PMR and almost identical back problems to what you describe - I'm fine lying down but anything involving balance changes when upright can be excruciating! I have sacroiliitis and my rheumy solved it a few months ago with a steroid injection. There are still other bits that hurt but they are usually manageable. I am currently at my daughter's and since being in the UK the back pain has been different and much better, The difference is the thicker softer mattresses - which in the past I'd have hated, Maybe I need something to soften my relatively new but firm foam mattress. I have also done aquafit designed for rheumatology patients for the last couple of years and while with the first instructor it helped immensely, last year's different emphasis often caused back pain and I was considering not going back - problem solved, she is leaving!!!! But it is important to identify actions that don't help.

[SanG55 in reply to PMRpro]

Thanks for your reply. Did yours and Snazzy Ds sight settle down? I have PMR since April 2020 and was down to 5mgs of Prednisolone before the GCA. Being in water is my happy, comfortable place. Thanks again 😊

[PMRpro Ambassador in reply to SanG55]

Yes, to a great extent but if I remember rightly, both of us still suffer from slow accommodation from near to far vision. I find it bad when I have spent all morning on the computer and then want to drive - takes up to half an hour to fee comfortable. I suppose it isn't helped by the fact that if I want to do the whole eye rest thing every 10 mins when on the computer it requires a change of specs!!!!