Not PMR but possibly Axial Spondyloarthopathy
Posted , 5 users are following.
Hi All
Feeling a littel up in the air this morning. Looks like my rheumy is not happy with the doctors PMR diagnosis and prefers to think it may be AS. He thinks I am too young for PMR. Wants me off pred quick due to Oestoperosis diagnosis and onto oesto drug for 5 years now. Can't diagnosis AS until I have another MRI scan which will probably not be until August. I'm on 20mg of pred and reducing 1mg a week. I can feel the aches coming back stronger into my neck and shoulders and am not sure what to do.
I do feel I need to get off pred quicker but am scared it will bring all the pains back. I am not sure aboutt the osteo drug either. Can I take ibruprofin as well as pred? Maybe that will help with neck and shoulder pain whilst I reduce?
I feel as if I should just shut up and get on with this. There is no diagnosis and I just need to do as I am told but waking every morning with a pain in my neck and shoulders is not good. I am not nearly as bad as others on here so maybe I am making mountains out of molehills and need to get back to the person who never complained and just got on with it. I hate this moany person I have become. I no longer can say 'yes I'm fine' to that question 'how are you?' I have to give them my medical history and I have to stop otherwise I will go mad!
1 like, 11 replies
jean50664 elizabeth40672
Posted
You are very important Ms Elizabeth, and your input is very important. This is what this thread is for.
just like you I now relay my medical history to everyone who asks....lol....
I took myself off Pred, but after about 12 days and just on Ibuprofen, Paracetamol and Lyrica....I have the shoulder , hands, right knee stiffness and pain...only diagnosed just after Xmas 16.
Have a review in mid March, (shrugs shoulders with a tear in my eye)......
reckon they will shove me back on Pred.....we will see
anyway honey child, hope you find some answers and peace.
Let us know what happens
Jean
elizabeth40672 jean50664
Posted
Morning Jean, thanks for replying!
Glad I'm not the only one to give my medical history to anyone daft enough to ask how I'm feeling
It's a jouney and it is good to know others are along for the ride. Have a good Sunday.
Elizabeth
EileenH elizabeth40672
Posted
I think you mean ankylosing spondylitis - and it responds well to other medications. It isn't uncommon for younger people with "PMR" diagnosed by a GP to later be given a different diagnosis and AS is one of them. The rheumy I saw wanted ny PMR to be AS - until some test changed his mind! Not sure why. In the end the back pain I get was decided to be entirely muscular - must have been as when they dealt with it on that basis it went away!
I presume you are in the UK, but even in the UK with the NHS as it is at present you shouldn't have to wait 6 months until August for an MRI! I'd ask your GP to investigate whether there is another hospital that can do it sooner. If you are willing to travel somewhere a bit further away there sometimes is.
Unfortunately, your symptoms probably will come back as you reduce the pred dose as it is an inflammatory arthritis and the pred will have helped some. How long have you been on it? I assume it did help?
Once you get down to a lower dose and providing you take omeprazole or something you may be able to use Naproxen which is often used in AS (it is only available on prescription though). One of the ladies on another forum was first dx'd with PMR/GCA but was unable to reduce the pred dose without awful problems - eventually she happened to mention the back pain that was waking her at night and her new rheumy had a lightbulb moment - and an MRI confirmed it was AS. The naproxen has helped in the meantime - and she is about to start on a biologic drug which work well in AS.
elizabeth40672 EileenH
Posted
Hi Eileen, I'm in Guernsey but the reason I have to wait for another MRI is the rhemy wants to wait to see if there is a change in what he suspects is Axial Spondyloarthopathy (he wrote it down for me)
Ive been on pred since Nov and having started on 25mg that made significant difference to the pain I was in I have only just managed to get down to 20mg having to reduce by 1mg a week. The rheumy wants me to reduce quicker due to Oesto diagnosis so will try to do it quicker if I can.
I was on diclofenac and Naproxen before being given pred, both seemed to have very little effect on the pain so not really looking forward to coming off pred.
Yes if he can diagonose he was saying someting about a biologic drug but that has to wait until a proper diagnosis can be made.
EileenH elizabeth40672
Posted
That apparently is the new term for it. Only the name has been changed to confuse the innocent! So all I said would still apply!
Oh dear - Maureen said the naproxen did help her so I do hope he's not barking up the wrong tree. What a shame he wants you to wait so long - though presumably the inflammation will be too subdued by the pred for the MRI.
Fingers crossed it isn't too bad though. Do let us know how you get on.
mirella60121 EileenH
Posted
I just got back from my regular rheummy appointment and he said exactly the same diagnosis as Elizabeth. I am so down as this roller coaster has been going on since March 2016. I have been trying to reduce the steroids down cant seem to pass 7mg. My bloods are worse esr and cpk are now 17 and 67. I have pain in my arm and leg muscles mainly and pain on right hand side under rib cage. He never committed to pmr due to age factor. Now convinced its this axial spondylitis. The 25mg of methotrexate has done nothing. He eventually wants me to go on this bio drugs which give he says instant relief. As uts expensive he says have to show we have exhausted all areas and prescibed plaquanil but said dont take it. I have reduced steroids very slowly and want to know why the inflammation is still so high. Cant begin to tell u hiw many tests i have had in past few months. So disappointed as just want answers. I dont have the shoulder pain like most if the patients on this forum. I have gained about 20kg since this journey began. I have three teenage daughters and i am not the same person anymore. Who and what do i belueve? Now i have been asked to do other tests as i am constantlt getting chest infections with bad cough.
Love reading your advice Eileen you offer to other sufferers and this forum is the only thing that keeps me going.
EileenH mirella60121
Posted
Do keep us informed of how you get on - this bit will be hard but it may lead to better things.
elizabeth40672 mirella60121
Posted
Hi Mirella, sorry to hear your journey but good to hear that I am not on this path alone! I too am very frustrated with the lack of diagnosis and am struggling to reduce pred. I'm on a mission to get down as quickly as I can so that it may hightlight AS quicker.
Good luck with your journey!
mirella60121 EileenH
Posted
Thanks for your response. So can I ask you as my esr and cpr are high again that wouldnt be due to trying to reduce the prednisone. What else could it be then? I have been tested for so many diseases. I still believe i have PMR regardless what my rheumy says as my pains and stiffness is in the arms and leg muscles predominately. The prednisone has helped but now i have come down to single digits the pin has increased and obviously the blood levels.
EileenH mirella60121
Posted
About half of patients with AS do have raised ESR/CRP - and obviously half don't. In AS there can be symptoms in arms and legs - but there are an awful lot of rheumies who seem to have the idea that it is beneath them to diagnose "just" PMR. Don't ask me why - I went through the same thing!
And maybe he'll not find the radiographic evidence and (hopefully) revert to PMR - it isn't beyond them to decide it is fibromyalgia and something they can't do anything about. But since you responded to pred - it isn't that so if that is suggested, look for another doctor.
mirella60121 EileenH
Posted
Yes i think i will providing the new dr don't doesn't put me through the whole lot of tests again.
thanks once again for all your help