I'm new to this site and to the world of PMR. Hoping to get some guidance from this lovely community.
My GP has diagnosed me with PMR at 42 and I'm not entirely convinced as I don't fit the symptoms of aches and stiffness in the shoulders and hips.
This all started in March 23 where I woke up with a stiff neck which went on for months so I had physio which didn't do anything. Then my big toe and my index finger became painful and it hurt to bend. The worst were my knees filled with fluid and I could barely walk (both knees). Blood test showed that my ESR was 49mm. Doc asked me to go for another blood test a few weeks later to see if the results change but ESR shot up to 59 and CRP 29. After an examination the doc believed I had PMR so started me on 15mg of Prednisolone a day. He has ruled out Arthritis based and is convinced it's not bone related.
After 3 weeks on Pred I've just had my bloods done again and although ESR and CRP are now within normal levels I'm now having to take strong antibiotics as my white blood count is too high.
Waiting for a appointment with the Rheumatologist but I have a long wait.
Hello and welcome. First things first, are you getting any benefit from the steroids?
Autoimmune conditions can be a bit wodgy in terms of establishing exact symptom profiles to give a name to them. The medical world has a jolly good stab at it and some are more distinct than others by showing up on scans or having a more specific blood test profile. Also, when does one condition start to become something else or be as well as another? PMR is a name given when people present with a common set of muscles being painful with or without increased inflammatory markers. Some people have sore feet or knees or hands with it and some don’t. They all have in common a need to have an immunosuppressant to damp down the inflammation due to your immune system attacking the wrong bits whatever the name put to it.
Pred is known to increase the white cells called Neutrophils above normal as a side effect but they might be suspecting infection because your other white cells are out of whack too. I do know if that can happen with Pred and perhaps someone else can say. Do you have any other signs of infection? Have they put you on a broad spectrum antibiotic to hedge their bets?
The Pred will and should make your inflammatory markers normal, that is the whole point of it and shows it’s helping. But, do you feel better?
Think you’re right to question the diagnosis but surprised they started steroids - I had to wait for rheumatology referral due to young age despite more typical PMR symptoms
How has he ruled out arthritis-based? I ask because I honestly don't see how he can be so sure this is PMR because it really isn't typical. You are very young - not saying that is a rule-out but with all the other bits, a GP should be referring you urgently for a specialist opinion since it is a very atypical presentation. Autoimmune disease is rarely clear cut. I'm also far from sure you need abx - pred sends white cells up and although it is mainly due to neutrohils, others can rise too. Reactive lymphocytes are more likely with a viral infection than a bacterial infection - and as everyone knows, viral infections do NOT respond to abx.
And as Snazzy says - are the steroids doing anything in terms of the way you feel?
Thank you for your replies. I'm 99% back to normal after taking the steroids. No aches or stiffness apart from my index finger which I can deal with.
The antibiotics I've been given are Co-amoxiclav 625mg 1 tablet 3 times a day.
The GP has ruled out arthritis as my Rheumatoid Factor was normal.
The GP wasn't treating it as urgent and said the waiting time for a Rheumatologist on the NHS is long so im going through Bupa which I've luckily got through work but still a month and a half wait. They only seem to work 1 day a week. My GP thought that was too long with the high ESR so he wanted to control the inflammation.
"The GP has ruled out arthritis as my Rheumatoid Factor was normal."
There is a form of RA that is called seronegative - RF is normal, not raised, But at least you are seeing someone soon. Private rheumies almost all also have day jobs in the NHS, that's why they don't appear to work much privately.
The response to pred is definitely in line with it being PMR but it isn't conclusive. Don't be surprised if the rheumy wants you to get off the pred so he can see you without it.
At least, he hasn't ruled it out because of your age and he is listening to you and investigating. From my experience, that's a real bonus. I remember being very confused initially when I was given a tentative diagnosis last November, as it all seemed to be very uncertain, but gradually with time, more tests and other illnesses being ruled out, the picture became much more clear. There seems to be a process that they have to go through to be sure. I hope it all shakes out for you soon and that you get some relief. One thing I would say is that whatever ails you, you are not well, be kind to yourself, lots of self care, take whatever rest you need without guilt, and do whatever makes you feel happy.
in the UK, it would be extremely rare for a consultant rheumatologist to diagnose PMR in anyone under 50. Move started at about 48 but I didn’t get diagnosed until 52 and that was a struggle. Eventually I was diagnosed by pet/Ct scan and it lit up like a Christmas Tree! It’s all a bit of a minefield unfortunately
What do they look for on the scans? I'm waiting for my Bupa appointment but my ultrasound with the NHS is next week on my knees and I don't think they'll see anything as the Steroids have done their job. I was going to cancel and have the scans through Bupa but GP advised me to go for it. All the swelling and stiffness has gone so will they really see anything?
My other concern, from reading other postings, is tapering off Pred. My GP has taken me from 15mg to 10mg within 3 weeks and from your postings this is a big no no and I'm likely to relapse if its PMR. I'm day 1 of being on 10mg and my neck is starting to stiffen again.
Shocking and scary how the advice from these forums are more helpful than the GPS who are paid to look after us.
They really should have gone via 12.5 - there isn't a guideline I know of that says 15 to 10mg. I know that is standard when using pred for other things. This is PMR, it is different.
If the symptoms return, don't give it more than a few days at most, go back, tell the GP why and then reduce to 12.5mg once you are back to where you were before.
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