Hi I’m really not sure what is happening? It took a long time before GP would test blood and then put me on steroids. By that time I could hardly walk, drive my car and terrified what was happening to me. Anyway after one day of 15mg steroids tablets I felt I had been reborn! Just to say even with this initial blood test my inflammation markers were low, however doc said if steroids take pain away it’s likely to be PMR.
Then doctor said I needed to taper to 12.5 which I did and the pains came back. So another doctor said to go back up to 15mg but this time I still had pain however nowhere near what I originally had. So doctor put me on 20mg. I still have slight pain in the backs of my thighs and occasionally in my buttocks. It’s ok however had to have blood tests and my inflammation markers are normal so doc now saying I may not have PMR and is going to speak to me again next Tuesday about coming off steroids. I’m terrified of the pain coming back.
Is it possible to have inflammation markers in the normal range and still be considered to have PMR?
After being on steroids since Jun 24th, my stomach in the last few weeks has been incredibly painful. Doc gave me Lansoprazole last week, should I be taking that every day regardless if I have pain or not. It’s so hard to see a doc face to face to ask these questions, so great to have this forum and be able to share. Thank you to anyone who can share their experience I’d really appreciate it! 🙏
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Sunshine8888
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Some never have raised markers [studies show up to 20%] even before taking Pred... and once you are on it, they will reduce anyway... that just shows they are doing what they should. It does not show you don't have PMR... unfortunately some doctors don't appear to know that!
Would say you were probably reduced too quickly - although 15-12.5-10 is a recognised taper that doesnt mean it's achievable for everyone - especially if the 15mg hasn't cleared out the inflammation built up prior to diagnosis.
The problem is once you have a hiccup it seems more difficult to get things back under control even with a higher dose.
How long have you been at 20mg ? and even though markers may be okay, symptoms are always the key.
It's going to be difficult conversation with GP, but I think you have to say you'd like to stay on 20mg for a bit longer and see if things improve.
Maybe have a look at this - para 5 in particular noting the comment re individual approach for some patients. Maybe take copy to GP if it's a f2f appointment.
Thank you so much for giving me the confidence to talk with my GP. I’ll definitely look at the information you have suggested and take it along. Interested in what you said about a hiccup, I think my expectations were too high after the initial excitement of the first time I took steroids. I really wanted to feel like that again! 🙏
Yes, common feeling... but you must also remember you have an underlying systemic illness [even if GP doesn't] so life and mindset has to be modified in certain areas... not easy initially.
Hi Sunshine, I was the same , markers for ESR within normal range , CRP(?) slightly raised so rheumatologist wanted to do endless bloods and tests before diagnosing PMR. I had classic presentation and became really debilitated, like you, whilst attending endless appointments and tests, at one point (Xray on hip) couldn't get off the platform (nothing wrong with hip. In the end , with a husband with Parkinsons I had to do something and saw a private rheumatologist. This was after discovering this forum and the PMR website. He was unequivocal on diagnosis, especially when the 20 mgs of prednisolone did the trick. Like you, felt amazing and then overdid it, returned to normal activities and went backwards a bit. So, thought I would share that with you as you maybe have done the same? I am learning to rest, do half the activity I would normally do, lots of advice on here. Yes, challenge that GP, sounds as if they have it totally wrong. Good luck and let us all know how it went. Best wishes.
Sadly a lot of doctors really do not know much about PMR or steroids. Having worked with the pharmaceutical industry for many years it always surprises me. The trouble is a lot of doctors do not tend to read much information about drugs unless super drugs come along.
Up to 1 in 5 patients who are diagnosed with PMR have normal range markers even before diagnosis - I did. That doesn't mean they aren't raised for THEM. mine were, My ESR ran at 16-18 for weeks during a flare when I could barely move - considered "within normal range" but MY normal is low single figures. Normal range is a range of results that includes 95% of a very large population of nominally healthy subjects, they often collect 10,000 patients samples to compile it.
That means that some have much lower levels, towards the bottom end of normal range, some have levels towards the top of the range and 5% have results outside the range but are still perfectly healthy. Normal range isn't a range of results that is normal for an individual, each has their own level and if their result is higher, it suggests there is something inflammatory or infectious going on. It is non-specific so doesn't indicate where, that that there is something.
Once you are diagnosed and started on pred, that level should fall to normal range EVEN IF IT WAS OUT OF RANGE BEFORE. So the fact that your results are in the normal range now is immaterial - they should expect that and be looking to see that. It doesn't mean it isn't PMR or that it has gone away.
PMR is what is called a clinical diagnosis of exclusion - you rule out all the other possible causes of similar symptoms and that leaves you with PMR as the likely option. Then you try a moderate dose of pred - and if the result is a dramatic improvement in the symptoms, that goes a long way to confirming your suspicions. If the doctor is very unsure, they should seek the advice of a specialist rheumatologist.
And as already suggested - did you try to go back to normal activities because you felt so much better? That very very rarely works! The pred hasn't cured anything, it is a management strategy to give you less pain and a better quality of life until the underlying autoimmune disorder burns out and goes into remission, And that is a timescale measured in years - almost always more than the 2 years many doctors will try to tell you. In the meantime, you need enough pred and you also have to do your bit by pacing and adjusting your lifestyle.
Had the same happen to me. Very frustrating, isn't it? Heck I was on 30 mg and my markers went UP, and one of the docs STILL said they weren't "high" enough at 32 (ESR) to be PMR. I just got very adamant that it had to be PMR since everything else had been ruled out, and he relented a bit. Now they pretty much leave me to my own devices. Regardless of what it is, I respond to the steroids, so...what does it almost matter what they call it.
My stomach has been ok, but I do eat every time I take them (split dose). Wish I could help you out there, but others will.
"Regardless of what it is, I respond to the steroids, so...what does it almost matter what they call it."
My view to a great extent. It might not be PMR - but it IS a pred-responsive myalgia which is ruining my life with pain and disability. If pred is the only thing that works - fine by me. It would have been a very long 20 years if I hadn't been offered it - the previous 5 years had been more than enough.
Actually, there is more, when the rheumatologist told me to come off pred and I was trying to reduce the dose very slowly, I told the GP that I was going to have to sell my house and move into sheltered accommodation if I carried on, as I was becoming unable to care for myself. I've never had any issues with him, but it made him wince and it got the message across. Sometimes, I think it is hard to get across how much suffering PMR causes and you have to be really blunt about it.
I'd never thought of explaining it like that - and it is so right. My daughter is keen I live with them at some point in the future, as her grandmother lived with us when she was young and she wants the granny-flat to be "future proofed" as she puts it to be fully disabled accessible. I'm thinking about a boiling water tap - so I won't have to lift a kettle. Before I got pred offered, even lifting a cup of tea was difficult on a bad day. And SheffieldJane sings the praises of a Japanese-style shower toilet - having one of those in my wetroom too because I remember the short-arm syndrome of untreated PMR!!!
Glad to hear about the "Japanese-style shower toilet". We've had a bidet attachment on our toilet for years and it's saved us a lot of money on toilet paper!
We've also just had our bathroom refurbished and the first thing I did was buy and fit a new bidet attachment. The cost was minimal (£25 from Amazon!) and there's lots of choice regarding features and styles, etc., for others that are similar in cost and complexity. Just go onto Amazon and look for 'bidet attachments', you'll be amazed at what there is out there.
Next up is to replace the bidet attachment with a bidet toilet seat, and preferrably one with both hot and cold feeds. Our current bidet attachment only has a cold feed, and it can be something of a shock to the system first thing in the morning when that hits the spot! By the time winter rolls round I want to make sure that we get a warm jet of water, not one of barely defrosted iceberg temps.
I'm also interested in fitting one of those Quooker taps. I used one once at someone's house to make a cup of coffee. It was brilliant! The only thing is, they are expensive, so I guess it will have to wait till we renovate the kitchen in order to justify the cost.
I spent a lot of research time on the taps last week! My cousin had one in the house before last in Dorset so asked her advice. That was an older iteration, been in the current house 9 years already! She doesn't recommend one if your water is hard as it needs a lot of attention with limescale but says friends in Cardiff with very soft water love theirs. There are several suppliers in the UK now and some are MUCH less expensive. I'm swithering - we have soft water here. In a main kitchen, probably, but now in a mini-kitchen where it is likely to be mainly making tea, less sure! I will have access to my daughter's main kitchen if I'm cooking. Maybe a small kettle and a pullout tap like I have now is enough for some time to come.
The bidet attachment is interesting - different realm when it comes to cost!!!!
Well quite. Where I grew up the water was stored in an undergound limestone aquifer - wonderful source of calcium our water! My aunts a few miles down the road had the Wales to B'ham pipeline through their land and got free water from there - softest water I've ever met and no scum on the top of the bath! Made a rubbish cup of tea though ...
Just to add my two-penneth (sp?) - after experiencing using a boiling water tap at my step-son’s, I definitely wouldn’t invest in one. He’s had one for about 3 years and now it has become rather temperamental (and potentially quite dangerous in my view). It is so easy to get scalded and expensive to run too. Better sticking to a small kettle - much safer and far less trouble as one gets older.
I am not attracted to these boiling water taps. I love the whole ritual of scalding the pot etc etc. I only use loose tea - the anticipation is wonderful!!
My daughter was doing that - until I brought my wedding-present picotware 6-cup teapot with me this trip!At home I now use a 4-cup one inherited from my aunt when she died, mum, she and I had all had one. Must have halved t-bag use in this household -and I get a better cup of tea!
I think that is a problem that arises if you are in a hardwater area with scale deposits. I currently have a small kettle but even that is a problem when my hands are really bad. One friend has a very good kettle substitute that dispenses water though, no lifting.
I've quoted your line more than once, that whatever it is, it's a pred responsive myalgia and that it cripples me without the pred. Stops the argument in its tracks.
Yes, yes.....I take Actemra, GCA, but the CRP will still register inflammation. I had perfectly normal markers and had a GCA flare that required IV infusions of prednisone. The body's symptoms are boss and guide. My best..and be comfortable..💞
Doc gave me Lansoprazole last week, should I be taking that every day regardless if I have pain or not.
I was prescribed this daily until under 5mg and definitely helped as my stomach also very sensitive to Pred especially if it’s just the plain white pills not the enteric coated (brown in my case) ones.
I think you’ve got great advice from others on your other queries especially pacing and resting even if Pred gives you a “high” - its not a real one.
My inflammatory markers have never been raised, either before or after pred. But I still had the miraculous response to pred, I noticed a difference within a couple of hours and the pain and stiffness vanished overnight on 15 mg. Same happened to me after 6 months on pred, the rheumatologist told me that my PMR had gone. Had it, heck! It's not an uncommon experience.
hi my markers were also normal took nearly a year to persuade GP to try Pred this after physio, MRI scans and x rays and nothing working unfortunately PMR is a bit of forgotten
I also was unable to stand up and could barely walk when I was diagnosed in December 23 and the 15mg daily dose of pred allowed me to stand up on my own within 2 days. This reaction confirmed my PMR diagnosis. Unfortunately the condition wasn't explained to me and I kept trying to do too much. I soon learned that I had to drastically reduce my activity to feel almost normal. I take Lanzaprazole every morning 30mins before taking pred with food and this works for me. I was given the 15->12.5-> 10 advice but this was too fast for me and I had to go back up to 15mg. I have reduced by 1mg every 5 weeks and am now down to 10. My advice is rest rest rest and slow taper. Good luck xx
I'm sure we'd all agree that the relief we feel after the starting on steroids is so great, we don't really care if there is a small amount of residual pain and stiffness left over. After a while, however, we begin to notice them, because they prevent return to normality.
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Feeling depressed, so excuse me venting!
blood results rising inflammation markers
PMR with no Inflammatory markers
Pmr
