My doctor is now convinced I don’t have PMR, mainly due to my last blood tests being normal. He has put me on ibuprofen, and wants me to reduce my steroids, I’m currently on 10. He has arranged X-ray on hands??, as I was having pain in hands and feet, which he doesn’t think is conducive with PMR, I also have my first Rheumatologist appointment next week.
I’m in a lot of pain, mainly right sided, hip and thigh, am walking with a limp, the ibuprofen has had no effect on the pain.
I’m feeling a bit confused
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Carathedog
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B£^^&% hell - honestly, what do some of them have for brains!!!!!! OF COURSE your blood markers for inflammation are "normal" the pred is mopping up the inflammation so it isn't triggering the "acute phase response" in the liver to make the proteins that send the levels up. If the markers hadn't gone down it would have suggested either it isn't PMR or you weren't on enough pred to achieve the desired effect. They did - another brick in the wall of evidence for something inflammatory and very possibly PMR in the absense of other evidence for arthritis.
Hands and feet CAN be part of PMR, it does mention it in several articles online and Sarah Mackie at leeds did study that found it IS part of PMR for many patients but unfortunately they haven't published it yet - I asked her a couple of weeks ago.
Your right sided pain that is making you limp is probably trochanteric bursitis - often part of PMR. If oral pred didn't help that (higher doses often do) then ibuprofen probably won't either, barely touches mine.
Levels of what? ESR and CRP are both general markers of inflammation - no indication of where it is or why. The best indicator for RA is the antiCCP test which is raised in most people with RA and even some where it will develop later in life. Rheumatoid factor can be raised in people without RA and not raised in people with RA.
Thanks for this! ...Yes CRP and ESR...my levels have always been on the high side ...not majorly but higher than normal (ESR in region of 49 CRP 30) despite Pred, and I wondered as my Rheumy had mentioned the possibility of RA ...seeing her in a couple of weeks so lots to ask her!
I think normally you would expect pred to reduce the levels in RA too and it is used in RA at low doses it seems. It isn't correct that response to pred is diagnostic of PMR - they have to look at a far wider picture.
Indeed. I started pred in 2015 a year after developing symptoms, and although I have usually been at a very low dose (2ish) since the end of the second year, all efforts to achieve zero pred have so far ended in failure. And still more to learn, especially as the disease seems to evolve and change a bit over time, maybe in step with normal aging, and with life changes. Nevertheless there are people who are able to move on and out within a far shorter period of time. There's always hope.
Prof Sarah Mackie was saying at a research meeting the other day that we have to deal with the "2 year myth of PMR". There are a few of us with a really Long PMR but we are pretty rare. 5 or 6 years is not so unusual though.
Now Sarah Mackie has realised we are for real (the Long PMRers that it) it is slowly changing the way PMR is regarded. Non-English speaking experts have accepted long ago that many patients need low dose pred for a long time - the UK and USA lag a long way behind I think, And while it has been a pain having PMR so long - it is comforting to feel I am one of the spokespeople for PMR and GCA patients.
She sounds great!...they need someone like you to speak at conferences! Change is very slow...but at least its happening 😊 ...I'd never heard of PMR until I got it
We are probably more use influencing the way PMR is looked at by the opinion leaders in the field - more comfortable too! We have been behind a few studies - finding the fact ear symptoms are relevant to GCA was almost entirely the result of a question asked at a support meeting, the charity then funded a survey and the NHS funded the study that confirmed it.
Oh dear! Of course your bloods have normalised and the inflammation no longer shows up in your blood tests! That is precisely what Prednisalone is for, it has done its job!Pains in PMR do tend to be bilateral, but the location of your pains is not unusual. Thank goodness a second opinion is on the near horizon. I really hope your Rheumatologist knows their onions. Don’t change anything as regards your treatment until you see them. Let us know how you get on. Good luck! Read up a little bit in FAQs. You are going to have to be the intelligent patient.
Ditto to ALL of PMRpro's comments! I would leave the ibuprofen in packet ...and stay at 10mg until you see rheumy. Hopefully a more sensible response from them.
Does your doctor know anything about steroids and PMR? You take steroids to help the PMR and voilà your blood tests drop to normal. You take steroids because other pain killers do not work. What is so difficult to understand?
If the pain is on the outside of your hip, try doing an exercise called the clamshell. I am better now, after doing this for a few weeks. Initial improvement was quite quick, and then continued to get better until now when I'm doing my daily exercises I actually have to stop and remind myself which side, because I can't tell the difference most of the time unless I'm actually doing the exercise. No problem/no pain walking either. Scroll down for the clamshell.
Hope it helps. I only did a couple of repetitions at first, and couldn't hold the position for more than a second, especially as it hurt, and gradually built up as things improved. I have to say I've surprised myself at how well it has worked.
Thats a very negative and stupid response by all accounts. I only got diagnosed after the pain was in my upper arms - it had been in my feet for literally years and was put down to wear and tear but Pred has got rid of most of the pains in my body - literally I hurt everywhere it seemed in February before I was diagnosed and started on 15mg. I also have back issues and arthritis in both hips and back but amazingly on now 10mg a day 80% at least of my whole body aches and pains have disappeared. It was even suggested that some people "handle pain better than others". when they thought it was "just wear and tear".
Seriously, these people need educating. I am so glad I found this forum it has helped me tremendously - I very much hope you are feeling like you can challenge this small minded and ultimately offhand attitude and get the treatment you need. Good luck
Get a new doctor, fast!In the begin of my journey with PMR, I had terrible pain in my hands and wrists-X-rays showed some osteoarthritis. Doctor had never heard of PMR. When pains began in my hips, back, and neck I diagnosed myself and a rheumatologist agreed with me.
Get another opinion and save yourself more suffering.
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Weakness in hands/wrists, especially in a morning
confused
neck pain
Lost the plot
