Hello everyone - especially you European/UK crowd buried under snow drifts !!
I am feeling a bit 'peeved' as most of us do from time to time trying to control GCA/PMR with the appropriate dose. I have been sitting on 15mg for about 10 weeks now after tapering from an initial high dose for GCA about a year ago. I tried reducing once or twice in that timeframe and reverted very quickly when symptoms returned. i have felt that 15mg is 'on the cusp' but generally speaking it has felt like enough and there has been only a very slight increase in my inflammation level (which were never very high anyway) so I have been marking time. Recently however I have had some nasty dizzy spells - my BP which I keep a general eye on (familial problem - but I've never needed to be medicated for it) seems a bit low at times - diastolic in the mid 60s - systolic usually normal - and on & off I have had a bit of headachey/face pain - but nothing major. I am wondering though if the Pred is actually causing this dizziness or whether I am not getting enough and the symptoms are 'just' the disease. My GP is quite flexible - but no expert on PMR/GCA so this is really up to me whether I decide to try a (reluctant of course) 'upward' taper for a while. I do realise the disease activity may wax and wane but I'm trying to avoid yo-yo-ing... but what do others think ?
Many thanks
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Rimmy
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I yo-yo’d for almost three years once I got anywhere near 10mg. It was very frustrating but I would feel terrible and needed to increase and start to taper all over again. I had leg cramps at night at times and felt a bit dizzy and so my doctor told me to drink lots more water... they mean well but I don’t think they understand the frustration, pain, discomfort and lack of comfortable sleep that we deal with. It becomes a real introspective journey and you listen to your doc and your body. This forum is the right place to be with support from people who have walked a mile in you shoes. I’m sorry you are feeling poorly and worried. There will be some others along shortly with great advice.
Thanks northwesterner - your experience offers me some much needed 'relativity' - I try to read everything on the forum which I agree is a fantastic info source but it's always that 'trick' of being able to apply things to your own situation. I do realise my taper to 15mg from 60mg in a year isn't too bad for GCA - some would even say 'fast' I'm sure but as I had sat satisfactorily at the same level for a while I felt surprised at re-emerging symptoms.
Best wishes to you as well
Hi Rimmy, I just wanted you to know that I'm sorry you're struggling with this. I hope you find the solution that's right for you and the downward trend continues. Hang in there!
Thanks Melissa - I am almost certain we all go through similar stuff - but you know what it's like - we'd all rather just continue with a nice smooth 'elegant' downward taper while (sometimes at least) 'pretending' that the disease is also declining at a 'parallel' rate. Much as I'd like to consider i am immune to this clear lack of rationality - I know I am not - cos I think: this should really ALL be over with by now ! - despite the fact I KNOW it can go on for much much (even several years) longer. However I'm still not quite sure if i should just sit on this 15mg for a wee bit longer to see if i stabilise again as my symptoms aren't too terrible just 'bothersome' .
R.
In the grand scheme of things 10 weeks isn't a long time. Even for PMR I have read that one succesful theory/strategy is to have 1year stay at 10mg (sure you have seen that on here too). The dizzy spells and bp need to be addressed. I had dizzy spells at 15mg but you have obvs been higher. My bp was high for years but has been great for past 12mobths.
Not sure if any of that helps. I would definitely be waiting until symptoms weren't so brittle and if they start feeling worse then you know you may have to increase to just keep it under "control" a bit.
The tapering/staying is a bit of a nightmare. I stayed at 10mg for months and have spent since January trying to drop to 9mg. Latterly returned to dsns and have been on 9mg for 6days and can feel the withdrawal despite slow taper. As you say weather here in UK not helping. I reckon I spend at least 30% of waking hours wondering if steroids at right dose. Hope things settle a bit and you feel a bit better.
Thanks poopadoop - I am obviously revealing some impatience - exacerbated by a few days of the intermittent but unpleasant dizziness I mentioned which may just be a 'parallel' rather than directly related issue - although it is also regarded as one of those many 'side effects' - most of which have not descended upon me as yet ! Ironically of course dizziness is also a symptom of 'insufficient' cortisol - but I am not sure how to 'calculate' that observation in this weird context of having a body with around double 'normal' levels !
Very similar experience to myself Rimmy. 4 times have gone back to 20 from 15. on 17.5 at the moment. Niggling rather than severe jaw, shoulder, back of the neck pain. 8 month taper from 40. Too rapid a reduction to 20 but I was going bonkers! It's difficult to know how far to tolerate returning aches & not trigger a full blown flare isn't it! ATB
Yes Pepperdoggie - thanks - some of these are 'fine lines' and however our choices (or directives from doctors) are decided there is certainly some degree of 'trial and error' involved.
Think you may well have hit the nail on the head with your comment “15mg is on the cusp”.
As I’ve said before, it’s relatively easy for GCA patients to reduce from high doses (once initial inflammation controlled) when there’s plenty of Pred sloshing around in the body (same applies for PMR patients, but obviously at smaller doses). However, with only a year in I would suggest you are at the point where you need to stop and evaluate the situation. Maybe you are just on the cusp but I would think you are actually slightly below the dose needed. If that’s the case then why not try 17.5mg for a couple of weeks and see if there is any improvement.
Don’t get hung up about being at a particular level for 10weeks, I stayed at some doses for a longer time than others - if that’s what your body needs then go with it. As Poopadoop says in the great scheme of things it’s no great shakes - if your GCA is anything like mine it ain't going nowhere soon! Mine lasted 5&half years.
I understand you don’t want to yo-yo, but on the other hand you need to take what your body needs...simple as!
I would mention your dizzy spell to doctor just so he’s aware and also monitor them- I would think it’s probably a combination of medication/GCA/low BP - but best to keep an eye on things.
Hello DL - I hope you are not too 'freezing' - all the images I've seen of UK weather look very extreme - and you must really be feeling the difference from 'mild' NZ .
Thanks for your comments which are so reassuring - I needed some of that - I will do as you suggest - it all sounds perfectly sensible coming from you ! It is so easy to get fixated on the 'short term' when ultimately (I must tell myself) in the larger scheme of things it is not that bigger deal -which is just what I would say to someone else (LOL) !
I would be inclined to try an extra mg of Pred. It can be amazingly effective for a tiny dose. I was feeling unwell on Thursday ( a sort of viral feeling washing through me) I took 1 mg of Pred and was better within the hour. I am carrying on with my taper from 7 -6 . I can see why you would stay at 15 for 10 weeks, but maybe 16 would just sort it.
If it were me I'd like to see a couple of 24 hour studies - heart rate and BP and until you had an episode during the recording (which with BP is easier said than done I admit!). Other than that I agree with DL.
Thanks PMRpro - I had a 24 hr halter monitor a couple of years ago - but I'll raise this with my doctor when he gets back from his knee surgery soon as things can change I know - and yes more difficult with BP but when I check it close to an episode it seems mostly lowish. I do appreciate your input as always and 'patience' IS a virtue for me to cultivate for sure ,,,
It just so happened the holter started measuring just as I had a "whhheeeeee" moment - they tended to happen for me if I was in a shop and got too warm. Wasn't surprising I felt as I did - 70/50 or thereabouts! Rest of the time it was fine! So we reduced the Losartan part of the BP meds - and it has been much better. Until the a/f woke up during "flu" the other week!
Hi Rimmy, I have been on Pred for PMR since Jan 2018 (15 mg) and am down to 12.5 now. I, too, get dizzy. My constant motto is 'watch your step' just so I stay upright. When I told my Rheumie she raised her eyebrows and wrote it down. Is dizziness a side effect of Pred, or PMR?
Hi Diane there seems to be a 'dollar each way' on this one - and unless we can discover another clear medical reason for 'dixzziness' (which is how I think it SHOULD be spelled) we may just have to 'wait it out'. It's pretty unpleasant though and as you imply also disconcerting the possibility of falling over or fainting sometimes seems perilously close ...
If you don't have just PMR but something verging on GCA then the blood flow to the ears can be affected and that can cause dizziness and hearing problems. But it can also be due to pred.
Hi PMRpro, another reason for my dizziness may be BPPV, which I have had in the past. A visit to the ENT for the Epley manouver may be my next move. That is easier to fix than having dizziness from Pred. or GCA...never a dull moment!! Thank you for your reply.
Thanks - interesting about the ears and I had also read about BPPV too but that Epley manouver did nothing for me. I took an extra 2.5mg (15.5mg total) today and felt a lot better generally - no dizziness either so hoping that will help overall and not make things worse if it is a Pred side effect - time will tell no doubt ...
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