Hi All , I hope today is a good day . I recently posted that the Rhuemy said to my GP I will probably be in a low dose of pred for life . I still try every now and then and even got down to 1mg a year back but was taking Arcoxia 60mg which just acted as a pain killer. I dropped recently to 3.5mg and over a period of 2 weeks the pain got worse in my back and neck. Increased back to 4 but just the same , I had a week over in Malta increased to 5mg thought that would sort it with some nice weather but just the opposite , I haven't Got the hip problem which I had when I was diagnosed back in 2015 but everything else is back with a vengeance , trying to get an appointment at the GP’s but that’s a week away. Question is do I suffer or go even higher with the pred . I’n So low at the moment. I work as a martial arts instructor and just don’t know if I can continue from one day to the next . Considering a private Rheumatology consultation , any body tried that path . ?
Is it a flare or snething else , so much pain - PMRGCAuk
Is it a flare or snething else , so much pain
Where do you live Gaz, somebody may be able to recommend a consultant. I've just had a consutation with mine (Dr Rod Hughes at Chertsey) since I was having a flare. The strategy we agreed was to try a higher dose for a few days, say up to 5 and then reduce back to your usual dose, in my case 4mg. If the higher dose works then this technique acts to "stabilise" the condition. Good luck.
Hi Podo, I live in Birmingham w-mids , that’s the strategy I have just tried went from 3.5 up to 5 , been I 5 for over a week now still got the same symptoms , the question is how much of it is osteoarthritis , if the experts don’t know what chance have we got . Thanks for your reply
Sorry that was been at 5 for over a week . 👍
I actually tried 15mg for 2 days which worked immediately and then back down to 4. Hope somebody comes along with a good consultant in your area.
I’m tempted to try that for a couple of days maybe with10mg then back to 5 , do you think that method would confirm it’s a flare ?
I think so, at least a short burst of 15 would not do any harm, I believe up to 5 days is safe without needing to taper again.
I’ve gone for it 2 days at 10mg then drop back to 5 , i’ll Let you know how it goes.
To add to this conversation - the 5mg is to ADD to the dose at which the flare appeared. So for you you would need 9mg. You let it mount up for 2 weeks - the inflammation must be cleared out first before a lower dose will be enough.
Hi Gaz227,
From personal experience would say your GCA is still active - three years in may seems a long time, but mine lasted nearer five.
If you’ve got sufficient Pred why suffer, why not increase your dose to 10mg for a few days and see if it makes any difference. Then you can discuss reactions with GP and hopefully come to a sensible way forward.
Quite a few have seen Rheumatologist privately, but that’s usually because the NHS system is too long winded or they’re not happy with diagnosis - are you disputing you have GCA, or not happy with treatment?
You may be on a dose for life, but if it’s GCA then I doubt it, and what if you are? A small maintenance dose is nothing to get hung up about, and if it gives you relief and means you can still enjoy life it’s a win win situation surely.
Just as a thought, are you trying to do too much in your work for the level of Pred you are taking?
Hi Dorset Lady , yes I definitely do to much my wife tells me that often enough . I have always been a very active person and find it difficult to slow down , I have only been diagnosed with PMR not GCA , keeping my fingers crossed that dosen’t show It’s face . Thanks for the reply
The NHS system to see a Rhuemy is so slow , each appointment for me took about 6 months , thing is its now we need the treatment or at least a consultation .
Sorry, don’t know why I thought GCA. In that case then if it’s PMR it’s likely to last even longer - sorry! Pmrpro and podo can testify to that!
What you have to remember is that the Pred is only working on the inflammation caused by PMR, it does nothing for the illness itself, so as long as that’s there and you are putting a strain on your body - whether mental or physical it’s likely to object!
Yes , and I still after 3 years I keep over doing it 😩. Also I am one of those people that have never showed a high ESR or CRP blood result so I always have it in the back of my mind is it a wrong diagnoses which effects me mentally developing more stress. I haven’t got an answer at the moment .thanks for the reply
Well the stress is not helping either if it is PMR.
If you’re really not sure, then maybe you have to bite the bullet and see another Rheumy privately just to put your mind at rest.
Yes I think you might be right there, but it’s difficult to get a definitive diagnosis , the Rhuemy I saw when I first got the condition would only say probably PMR and then the only thing on there mind is to get you off the pred as quickly as possible . All the searches I do in the midlands area take me back to the same Rhuemy a chap called Dr Kahtakk excuse my spelling . I don’t mind travelling if anyone reads this post and has good recommendations .
Might be an idea to start a new post - then everyone gets to see it.
Gaz I live in Birmingham and see Dr Ben Rhodes at the Q.E. He's ok but my appointment for October has been shifted to February. Not seen him since April!!! So it will be 10 months when I finally get to see him again. He has given me the rheumatology nurses contact number. I have used this, they either speak or email him and he has got back to me. I've been trying to manage a flare, so will have to get on to it via this route.☹️
20% of us don't have raised bloods. I don't - but pred does the job so I accept that as good enough. It isn't significantly worse than other drugs at PMR doses and used properly - i.e. not overdoing things and inviting trouble and not ignoring the evidence of a flare. Quick action avoids a lot of problems.
Rod Hughes at Chertsey is a top address if you are willing to get there and go privately. He does NHS too and may put you on his list.
Thanks PMR , good advice as always . I’m having a partially crappy time of it at the moment . I have increased to 10mg from 5 for a couple of days , apart from the neck and back pain I have nausea and a fizzy head new ones to me . I was in Malta and over eat as you do on these all inclusive holidays so the stomach trouble might just be the withdrawal from all that nice food. 😩
Piggy!!! We don't do all-inclusive as I object to subsidising the people who eat for 5 on all-inclusive! Between us we can't manage a normal full meal - on the ferry from Newcastle the other day the a la carte menu made you pay for at least 2 courses each - so we went to the Brewer's Fare at the entrance to the terminal beforehand and took a picnic and a bottle for the cabin since a large glass of wine was a mere 15 euros. Their loss!
Where were you in Malta? We're off there again at the end of November
But beware with those symptoms - nausea and fizzy head makes me nervous about GCA.
I’ll keep a close eye on the symptoms , we stayed at Mallieha bay (excuse spelling ) if you know it , it’s over by the ferry port to Gozo , we did the 3 islands while we where there as they are only a stones throw away. Temperature was perfect 24 / 25 c , hope the weather holds for you 👍
No haven't ventured that far yet! Been over to Gozo though and will go back using public transport - the tour we used to explore it was pathetic (spent all the time on buses/the boat as it was packed to the gunwales as they'd had a couple of rough days and all appeared on our day and they hadn't planned). We just go to sit and do not a lot and have less cold walks for 3 weeks - it is ski season here by then! November was great last year but I'm not sure what December will be like. Upper teens and sun is fine by us!
Spot on as usual PMRpro.
I have a few friends who have gone down this route to get quicker and better NHS service.
They invested in an initial consultation with a highly recommended consultant that works locally ( or as local as they could get) on the NHS too.
At the end of the consultation the specialist made the recommendations for care and further testing at that point of care ( which were then sent to them, their current Rheumy and GP) .
The specialist recommended they had a Rheumatologist . They either offered to take them on their NHS list , or you can ask and they were happy to do that with my friends.
It kick started or sped up care for my friends , the people who they see via the NHS list that they referred from private consultation , sadly , but invariably do get quicker appointments and more consistent service .
If you choose to go that route , make sure you create a file of your medical history, any medications you are on and amounts,, the tests and letters and advice for your PMR ( you can get copies via the hospital service and your GP) .
Write a pain record for each day , pain level ( 1-10) in the morning and where , pain level when it spikes ,and where, and what you were doing, pain level middle of the day and at night.
If your pain is also causing any visible inflammation and swellings take a photo and add to a photo file on your phone or a tablet ( it's easier for them to see it ) take it in to your consultation to show them . They love visible evidence, and we all have the issue of turning up at appointments with nothing going on ( being asymptomatic) .
These records are useful for any appointment , GP, NHS or private , and often get you to the root cause and specific treatment faster.
In the meantime, I hope you can get some help via your GP or elsewhere and are allowed the temporary increases that the Pros on here are advising.
And try, although I know it's hard, to slow down on the active class involvement in teaching the contact sports ( you may have to teach from the sidelines for awhile until the inflammation subsides).
Take care and let us know how you get on.
Thank you Blearyeyed, some great info there , I feel like I really have something to work towards . i’ll Let you know what happens 👍
Quite a few of us go to a private rheumatologist if the NHS (or equivalent) isn’t swift enough. Many see you first privately then transfer you to their NHS patients.
Hi Constance , thanks for the reply have you got any Rhuemy’s names I can google presuming you are in the uk . 👍
Sorry Gaz! The reason I said “or equivalent” is because I live in Germany. But I used this method several times when I lived in the UK - so did many of my family/friends.
If you have a flare - and it certainly sounds like it - you will need more pred. Though if you got relief from Arcoxia I would doubt it is "just" PMR, painkillers rarely work to do more than take the edge off. And personally I'd take a higher dose of pred rather than Arcoxia any day!!
As DL says, 3 years is nothing - 4 to 5 years is far more usual for GCA and longer for PMR. The rheumy can't tell if you will be on it for life at this stage - unless he is being kind and persuading your GP there is no purpose in trying to force you off the pred.
And to repeat my other comment: the 5mg is to ADD to the dose at which the flare appeared. So for you you would need 9mg. You let it mount up for 2 weeks - the inflammation must be cleared out first before a lower dose will be enough.
In the UK, seeing a private rheumy is no different to seeing an NHS one - just you pay to jump the queue. Almost all private rheumies also work in the NHS so you might not get any better treatment!
Thanks PMR pro
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