I have GCA & am currently tapering down from 4.5 to 4 mg. I've had no problems - I.e. recurrence of symptons- but I am in so much pain in my hands, back and am finding it very painful to bend my knees without pain. My hips also feel stiff & painful sometimes. i I have also had quite a few rapid heart beating sessions & feeling a bit light headed. Is this all to do with the dose or should I be seeing my Rheumatologist? I've not seen him for about 4 months now.I try to do Yoga every day (as I have done for the last 18 months) but I can't even bend my knnes/legs into some of the positions now as it's so painful.
What should I do or is this 'normal'?
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Janeval
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Some aches and pains as you get to lower doses can be normal age related ones, but yours sound too much to be that. The lightheadedness could be adrenals related..but maybe silly question, but are you sure not a virus - covid for example? How long have you had these issues, and have you tried paracetamol?
If so and that hasn’t helped, maybe try a few extra Pred as per flare protocol.
If nothings much solves it, then probably need medical input, just wondering if it may be PMR poking it’s head up, previously hidden by higher doses.
Thank you DL. The pains have been getting worse the lower the dose of Pred I'm on- especially my hands and back. I'm taking paracetamol - helps to take the edge off some of the pain -but I also do feel very tired some days. I don't think it's a virus or Covid as this has been creeping up on me for a few months now. I did wonder about my Adrenals or PMR. However, last time I saw my Rheumy - I mentioned I was getting a lot more aches & pains & he just said ' oh that's Fybromyalgia' & I said, no I don't think it is! He didn't do any tests on me or ask any questions so I really don't know what he'll come up with this time!
Think you need a new doctor with a bit of common gumption!! The FIRST thing to try is a higher dose of pred - preferably after getting your GP to do a blood test for the inflammatory markers in the hope they will be of some use, they won't be after increasing the pred. Whatever the markers show, if a moderate increase in the pred dose helps - it is NOT fibromyalgia, it is PMR which should be the first thing to come to mind in a patient with GCA anyway.
Me for one....and my pains are as Janeval describes. This is fairly new and I am tapering. At 8 mg and tapering to 7.5 tonight. (Can it be adrenals at 8 mg?) In fact, right hip down to just below the knee is now bothering me at night. Nothing has bothered me at night before. All along, I've suspected some kind of GCA, but biopsy 2 years ago was negative. Can I get anyone to investigate? Course not. Ugh.
Yes it can be adrenals at 8mg … we usual quote 7.5mg as being the physiological level your own body would produce cortisol, but it can be anywhere between 5-10mg - even higher for some.
See this -
The body normally makes approximately 30mg of cortisol per day although that is not necessarily a constant level, measurements of 300mg have been measured in patients undergoing surgery. 30mg of cortisol is approximately equivalent to 7.5mg of prednisone.
As you know once you have been on steroids for more 3 weeks and at a dose higher than 7.5mg they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to. So when you get back down to your physiological level they need to wake.
Thanks ever so much DL. I've been kind of dreading this stage, mainly becx GP won't work with me on the slower taper. I've tried to explain to her about the adrenals kicking in, but it's as though she tunes me out. An ounce of prevention and all that. I'll have another go at her on Tuesday. Happy Thanksgiving!
Hello, Janeval. Horrible time for you. I wondered exactly the same as DorsetLady: your pains and stiffness sound very PMR-ish. You do need to see your rheumatologist and if you can’t get an appointment soon I suggest you ring his secretary and ask for a call back from the clinic’s specialist nurse. In the meantime hold back on any exercise that causes pain. I can imagine that at the moment even walking from one room to another is a trial. Let us know how things go.🤞
As I've just said to DL my Rheumy doesn't fill me with much trust as to what he says! I did think about 'trying' to get to see my GP but that is really difficult now. I'm having to reduce my Yoga as it is just too painful & yet I've been doing Yoga for years - even more since my GCA diagnosis to try to keep myself well and flexible & I am taking it very slowly with my Pred reduction .
You may have had GCA to start with - but one of the symptoms of GCA can be PMR symptoms as you taper the high GCA dose which is loads to manage PMR down to the sort of levels at which PMR raises its head again. What you are describing could well be PMR symptoms - so yes, it is a flare, just not the GCA you recognise.
I had a cardiac arrythmia caused by the underlying autimmune part of PMR which was better at higher doses of pred, it was very clearly linked to the inflammation and always worsened with a flare of the PMR. The light headedness could be due to that - does it coincide with the palpitations? Or it could be due to adrenal insufficiency if your adrenal function isn't keeping up with the lowering of the pred dose.
PS - if you are having palpitations, then it needs checking out properly. And just because an ECG looks OK at the time it is done, it is meaningless unless you were experiencing symptoms at the time.
Thank you to all of you for your sound advice. I shall get a blood test done for my markers - not had one done for months now- & I shall also try to get to see a Doc about these palpitations which do coincide with the lightheadidness & dizzy spells. I'll also look at increasing my Pred as you suggest DL. I have wondered about PMR but think I've been in denial as I just can't bear the thought of more Pred and more pain.
More pred and more pain should be mutually exclusive in PMR!!!! I've had PMR for a long time and provided I take enough pred I have no PMR-related pain. Other pain possibly but not due to the PMR. And the pred hasn't caused any serious problems, in fact, as far as I can tell, no problems worth mentioning.
We often talk about advocating for ourselves if we aren’t convinced that what the professional has advised is meeting our needs. A trusted, knowledgable young rheumatologist recently came to our support group meeting and spoke in no uncertain terms about advocating for ourselves. She said that if we felt something wasn’t right we MUST speak out and stressed this several more times. She said that we know our own bodies better than anyone which is, of course, absolutely true. There is nothing worse than coming away from an appointment with a feeling of dissatisfaction where the doctor was dismissive and disengaged.
As PMRPRo has said, Prednisolone, at the correct dose is synonymous with relief from pain: you need the dose you need to manage the inflammation in your body. A practical suggestion as you go forward is to make a diary recording your daily dose of Pred, symptoms and maybe activities through the day so that when you do manage to get an appointment summarise beforehand the information gathered so that you can present this to the doc. Also, don’t be wary of talking about anything you have learned that might be valid or needs clarifying.
Having said all that, despite having my notes in my hand I still sometimes come away from an appointment having forgotten something-grrrh!
I have to say - my Rheumy tends to sit in front of his computer typing notes on there but doesn't actually look at me directly or listen to me as an individual - I feel as those I am being treated as a general GCA patient & not as an individual with my own problems, so I don't really have much faith in him. When he told me I had Fybromyalgia he was looking at his computer & as I said before- never asked any questions atall! The specialist nurses also don't seem to have much idea atall about GCA - wish I could see someone I had faith in.
You can request to be assigned to a different rheumy or have your concerns made known to the Head of the Unit via the PALS system. Obviously that MAY mean someone getting a bit offended at criticism but equally, if others have made similar comments, the hospital does usually see the value of taking constructive criticism.
As for the fibro comment - that really is questionable and you should have insisted on a justification for saying it was fibro rathern PMR which is far more likely in a GCA patient.
Mine used to do that, but I've not talked with her since beginning of April and that was a 5-minute phone "consult". No great loss as she was a complete dork.
As PMRpro has said you are absolutely within your rights to complain and the NHS does want patients to express their concerns when there is justification which there is in your case. I did just that a couple of years ago when my questions and concerns were ignored at a hospital review. I stated what had happened and why I was dissatisfied and what I would like to happen next which included a consultation with someone who would listen and respond with respect and professionalism. I also requested that it would be written in my notes that I didn’t want to see the rheumy in question in future. The outcome was positive and there was no ‘comeback’ whatsoever.
(If you went to a review and sat scrolling through your phone without looking at your doctor I’m sure they’d have something to say!)
It does sound very PMR ish. You can have both PMR and GCA. I have PMR and not GCA, but what you describe is just how I was when I got down to 3 mg pred, when my symptoms re-emerged with the reduced dose. I had to go back up to 6 mg, since 5-6 mg seems to be the amount of pred that keeps my symptoms under control. Presumably, it doesn't respond to paracetamol or ibuprofen? If an increase in the pred improves the pain and stiffness, it is unlikely to be fibro.
hi Janeval. I was able to get off prednisone after 5 years. During my month off various things started to hurt and I thought ok that’s because I’m 71 but each day something different hurt or was stiff. I did a blood test to measure inflammation markers but it really wasn’t elevated but when one ankle had consistent fluid in it I put myself on 5 mg of prednisone and most of my pain, including the inflammation in my ankle, has stopped. I’ll see what my rheumatologist has to say next week but I do think mine was PMR.
Hi there, it looks like you were diagnosed with GCA in Jan 2023? and if so then to be down to 4.5,tapering to 4mgs pred does, to me, seem very speedy! Admittedly I am becoming a 'longtimer' and was very slow in discovering and joining this group, but from my own experience of tapering too rapidly (as advised by my rheumatologist) and suffering two relapses and in A&E and having to start the prednisolone back up at 40mg and then tapering all over again and again, and from what I have learnt on this wonderful forum it does seem to me that your tapering might be a little too rapid. I ended up in A&E as I put up with the pain, was feeling positively ancient, but thought it was all down to withdrawal symptoms.
I wish I had found this forum so much earlier. I am learning to, as 123-go says, advocate for myself.
Thank you to all of you. I am going to see if I can possibly get to speak - or even see - my GP & also go back up a bit with my Pred. I have to say that my hands - my fingers actually are the worst at the moment and my knees if I try to bend down. Very frustrating as I have always been very mobile & supple with doing my Yoga. It is however, comforting to know that I'm not the only one who is going through this at this point in my reducing. My head feels ok now, but my body doesn't!
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