I was diagnosed with GCA in April 2021 and started on prednisolone 60mg, since then I have been tapering and now on 17.5mg. I’ve only had 1 face to face appointment with a rheumatologist and 2 phone calls. I have had various scans and ophthalmology appointments as I had a temporary loss of vision in one eye.
Since starting on prednisolone I have felt spacey, like I’m drunk or disoriented. I thought this was a side effect of the meds and would reduce as meds reduced. It hasn’t and actually seems worst now, it only eases when I lie down or sit with legs raised. Any standing or motion is really debilitating, so much so that I’m not able to do much at all. I also have pins and needles, mainly in my hands and feet particularly on my left side. When I spoke to the rheumatologist today she doesn’t think this is anything to do with the meds or GCA and suggested I book an appointment with my GP which I have done and is scheduled for next week.
I just wondered if any of you with more experience and insight of GCA or prednisolone have any ideas or similar experiences as to what this might be?
Many thanks.
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Avon14
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Would agree the disorientation does sound a bit Pred related, and should have decreased as steroid reduced -,although taper is very quick, so that may have a bearing.
However could be following -
Has your blood pressure been monitored,
Ears can also be affected by GCA, has Rheumy considered that? May have triggered labyrinthitis if just a general feeling of unsteadiness.
Do you have PMR R as well? That could be pins & needles, but as it’s left side only, it really does need to be checked. Any chance you can see GP earlier?
Thanks for your prompt response. I have been following rheumatologist tapering instructions , 60-20mg reduce by 10mg per 2 weeks then reducing by 2.5mg every 4 weeks until 10 mg them 1mg per month. I monitor my own blood pressure which is stable and normal.
Could well be labrynthitis, I didn’t think of that, I will mention to GP.
I haven’t a diagnosis of PMR but I can think of a number of occasions when I may have had the symptoms prior to the GCA diagnosis.
I’m only on the prednisolone and lansoprazole as I am reluctant to take the vitamin D and AA that has been prescribed as I also have a sensitive stomach and had pancreatitis last year which was awful.
Next Tuesday was the earliest appointment with my GP, obviously if I get worst I’ll contact them again.
As with many people who use this forum we do seem to be left very much on our own, unsupported by Heath services with very debilitating, serious illness.
Thank you for your help and support, it is very much appreciated.
Agree with DL. Will say though that your reducing speed would have floored me with withdrawal effects. Also, I felt so drunk on high to medium doses is had to take it before bed. Weakness was with me until 10mg and by then the weakness was due to muscle loss and not the Pred. Have you had your blood sugar checked recently?
Thanks for your reply. I will definitely get my blood sugars checked as it did occur to me that might be a cause. I did also think of taking the prednisolone at night but worried about the insomnia as on the high doses I didn’t hardly sleep for 2 months but now sleep is fine. Did you experience this? I know I’m lucky that I don’t experience the pain that many others have but but trying to just do regular things has become increasingly difficult.
If your sleep is okay, then it might be worth considering taking Pred at night - and then hopefully you will sleep through the symptoms of disorientation - the only way you will know us to try,,,but you need to try the new system for at least a couple of weeks.. I didn’t have the issues you describe, so can’t give personal advice on those, neither did I change timings of Pred - sometimes it’s a bit of trial and error to find what suits YOU best.
I did have insomnia once the grog effect of the Pred wore off. It was like a sleeping drug one minute then a whizzy buzz pull the next. I would wake appallingly early. I lived on naps. I think the hardest thing to accept is that it isn’t a case of popping the pill, pain going and then back to one’s day like a normal pain killer. Daily life does become more difficult until the dose drops and one’s autoimmune activity subsides.
I think the hardest thing whilst living with the debilitating symptoms is whether it’s the original illness, the meds, the withdrawal from the meds, another illness or a combination of all, or indeed even connected with COVID or the vaccine. Uncertainty is difficult while trying to maintain some sort of normality. Trying to accept it is whatever it is and take a day at a time whist appreciating the difficulties with this sounds a good way forward.
Yes, is DL says, time does help one see more of a pattern in symptoms. Yes, it is very wearying constantly trying to second guess what is causing the latest crop from a pick and mix of reasons. Do you leave it? Do you need to do something about it? The first four months were the worst for me. I spent a few days mostly in bed just from withdrawal at higher doses. One of the reasons for reducing more slowly is to be able to work out what is what. Docs have no idea it seems what the patient is up against and I haven’t yet met one who has had to come off high doses themselves. It is vile if you go too fast. One day at a time whilst making notes and looking back to spot links is all you can do.
Personally I have not found it all that easy, even after six years, to distinguish between PMR and osteoarthritis; in fact I think it is harder now as my memory of the original untreated PMR becomes fuzzy with the passage of time. Also this year with a string of knee injuries and vaccines I think my body is crying out "enough already" and wanting me to just take it easy, avoid stress (hah, I'm living through a once in a hundred years pandemic!) and not sweat the small stuff.... Really not so easy.
In early days, however, I think it important to take what you need to control symptoms as much as possible and if the "other" things temporarily disappear, as they did in my case, enjoy the respite!
I am glad that you have had Opthalmology appointments and various scans. I must say that I find your Rheumatologist a bit dismissive. They have just prescribed a huge dose of a powerful drug and they just send you to your GP when you feel strange. The AA alone has myriad of side effects. I think you are wise to hold off until you have a bone scan at least. GCA is a serious systemic disease, of course you feel ill, worn out and in need of total rest. I also, like you, think that the fact that you’ve had acute Pancreatitis needs to be factored in. Prednisalone can be harsh on the digestive system. You are also coming down in dose very quickly and this will confuse your body. I hope you have begun to taper using one of the slow tapers recommended on here. I think a lot of people on here will relate to the disorientation you feel right now. The left side symptoms seem odd. This does need further investigation. Let us know what happens and welcome to the site!
Thank you for your support, I do feel like my concerns weren’t acknowledged by the consultant. Perhaps over the phone I sound fine, if she had seen me stagger in she might have thought differently. I’ll see what GP can offer and then try taking prednisolone at night to see if there is a difference. I may also slow the taper down when the next reduction is due. Thanks again, I’ll keep you posted.
When I was on 60mg of pred for GCA, within 2 hours of taking it I felt spaced out & dizzy & just peculiar. My Rheumi said it was partially due to the GCA but more so the pred.I used to have to lie down for at least 3 hours in the day, also v. fatigued. she also was pretty sure that the feeling of pins & needles was because of the inflammation in the arteries. But agree really sensible to get yourself checked out by the doctor. The spaced out feeling eventually decreased as the steroid dose reduced, for me not until 10mg but everyone reacts differently.
Hi Avon14 I experienced the feeling disoriented and dizzy but reduced pred from 12.5 to 11 more or less gone. I hated that feeling. I’m tapering very slowly. I do get a bit light headed and will check with Gp on next appointment. Maybe just get the once over with doc. Hope you feel better soon.
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