New, could someone advise me please.

Jenny-

Perhaps it would be best to consult a Neurologist , to be sure you don't have a problem in your skeletal structure. My wife had big neck , shoulder,arms and back problems and it turned out to be a problem with her cervical column. She suffered for a long time while doctors made "educated guesses", with all the different medications to resolve problems which were not the real problem . Now, finally after a cervical fusion everything is going well. This is not to say that you have a similar problem, but I would think it would be most prudent to find out for sure what the root of the pain is.

Just my opinion...

Hello Jenny and welcome, although we're always sorry to hear of yet another PMR sufferer.

Yes, your symptoms do sound very much like those of PMR and the fact that you became pain-free after just a few days on the steroids does confirm this diagnosis. Anaemia was part of my initial diagnosis too. You can still have normal blood test markers in spite of having PMR - about a quarter of sufferers never have raised markers.

It is, of course, easier to monitor a patient with raised markers - in my case the markers correlated with how I felt. However, in your case you will simply have to go by your symptoms alone - how you feel. If any pain returns within a short time of reducing the dose, then that can simply be due to steroid withdrawal pain which should then ease up after a week or so on that dose. However, if the pain returns after about a week of any reduction and then continues to build that can be a sign of increasing inflammation which means that that particular dose is a step too far for now. You will gradually learn how to listen to your body and know the signs.

It isn't at all unusual for you to still experience pain in your lower back - the steroids aren't curing PMR, they are simply reducing the inflammation that causes the symptoms. A few lucky people do become pain-free down through the doses but that is fairly unusual.

As for how long you will need to stay on steroids, that depends on the individual. Everyone is different in both their severity of PMR and their response to the steroids. Most medics will say that it takes two years to run its course but for many people it can take three years and more. The important thing is to give yourself plenty of TLC to allow the steroids to do their job of controlling the inflammation. On a good day especially, don't overdo things as PMR has a way of biting back.

Very importantly, don't let anyone rush you into either large or fast steroid reductions. You will need a good few weeks on 15mg and then, and only then, if you are feeling comfortable a reduction can be tried but no no less thto 12.5mgs at most.

If you haven't automatically been given one, you should have a Vitamin D blood test as any deficiency can lead to similar pain as PMR.

Hope that helps but do come back and we'll be happy to try and answer any other questions you may have.

MrsO

"She wanted to start me on steroids but after consulting with other doctors said unless I had high blood markers she was unable to prescribe the medications."

That's rubbish - as MrsO has said (and she has said just about everything!) about a fifth to a quarter of us don't ever have raised blood markers. That is why the diagnosis should be on the basis of the clinical symptoms, the blood tests are only part of the picture.

If you follow this link

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

you will find a post on this forum with more links in it. One is to the site run by the Northeast of England PMR and GCA support group which has a lot of information from both medics and patients, all checked and approved, no wibble!

There is also a link for a paper by the rheumatology group in Bristol:

"Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis by V Quick and JR Kirwan"

It is aimed at GPs who often struggle with diagnosis and treatment - so you can download/print it and show it to your doctor. Most of it is easy enough to read for yourself and it has a scheme for reducing the pred which they find reduces the rate of flares to 1 in 5 patients (other schemes result in flares in 3 in 5). We belive going even more slowly (never more than 1mg at a time and even slower below 10mg) reduces the flare rate even further and a few specialists are starting to use that sort of reduction scheme.

Not being able to turn over in bed and being unable to get out of a chair are typical textbook symptoms. Anaemia is often the result of the underlying autoimmune disease that causes the symptoms. An improvement of the symptoms by 70% within 24-48 hours of starting 15mg/day pred is seen as almost a confirmation of the diagnosis of PMR - nothing else responds as dramatically. That is the basis of the Bristol group's procedure - they give 15mg pred for a week and if the patient's symptoms improve in that way and then return as quickly when they stop the pred - it is most likely to be PMR.

But you note - by 70%. Not all the pain will go immediately or even totally even though some doctors think that. I and a couple of others told some specialists that a few weeks ago in a research meeting: "What - you mean it doesn't remove symptoms completely?" they said in amazement! Er - no! But over time it will often improve more - but I had low back and hip pain that took a few months to go away. It can be due to more local and more severe inflammation and the pred takes longer to calm it down.

It is possible to have pain from other causes, banjobob is right, having PMR doesn't excuse us from other things. But your description sounds very PMR-ish and it is worth accepting that for the moment. If you have severe back pain that doesn't resolve then maybe a few more tests might be called for. As for monitoring your progress - it will be by the symptoms and we can explain that later. I have never had a raised blood test even when I couldn't walk. But I am now down to 5mg after four and a half years with few problems once some other curved balls were dealt with - and using a VERY slow and gradual reduction programme.

Where are you Jenny? If you are in the UK there may be a support group nearby.

Eileen

I'm not as knowledgeable as Eileen or Mrs O but thought I would share today's experience.

I have a very sympathetic GP who is happy to hear the very helpful advice from this forum. Today I had my first rheumatology consultant apps. He seemed set on deciding that I didn't have pmr, first question how old are you, 2nd was about stiffness in the morning. Well I said it was more about extreme pain and inability to move rather than just stiffness. Never mind pain, did you have stiffness.

It kind of went downhill from there. I also didn't have the very high blood test markers, but the pred was a miracle result. He has reluctantly conceded that I may have 'atypical pmr'.

My gp started me on 20mg of pred, but raised it to 30 after 2 weeks when I reported that not all the symptoms were relieved (too helpful!) So a month ago I reduced to 27mg, and 3 weeks later to 25mg.

The consultant now wants me to reduce from my current pred dose of 25mg to 20 immediately, then in a month to 20, then by 2.5 monthly to 10, then by 1mg monthly. Not sure I agree, and will wait to see gp before implementing.

Essentially the gp embraced any info I brought, and the consultant seemed to feel it not relevant and was very dismissive. Maybe feeling a little threatened? To be fair they train for many years!

I have not been very active in posting, but read avidly and there is so much that is consistent both in help wanted and offered.

Good luck in your journey with pmr, it's not a wonderful thing to get dumped with - but there's worse! At least the steroids work!

Funny - we discussed the "morning stiffness" thing the other week with research people. They were quite surprised when we said it isn't "morning stiffness" - it's pain and "all day stiffness" but it is difficult to say what is "stiff" and what is "pain". What we as patients say is being misunderstood on many occasions - mostly we suspect because they have never had PMR!!!!

See this "atypical" label - it's beginning to irritate me! If you understand statistics you will also understand that half of patients will be "atypical" in some way. I was "too young", didn't have raised bloods, blah blah - and the rheumy I saw desperately wanted it to be something other than PMR - PMR was not a "clever" enough diagnosis for him to make was the impression I gained. Each of his "clever" ideas was ruled out by blood tests and x-rays - so he reluctantly allowed me t o have pred for a few weeks to get me through a trip to the USA. I took my first dose of 15mg pred - and 6 hours later walked downstairs normally. And back up. On my feet not hands and knees. Three days into pred I went to the GP who'd had no idea what it was and to whom I had presented the "?PMR" diagnosis. A few weeks later, after returning from the USA I stopped the pred, I'd been told to take 2 weeks each of 15/10/5 mg. 15 was brilliant, 10 was OK, I could have lived with 5mg and what was left - but within 24 hours of stopping the pred I retreated to bed in tears with the pain. Was it worse than before or was it just the comparison with pain-free? I don't know - but I DO know that I had the typical dramatic response to pred but the rheumy wasn't interested - he was downright rude. I went back to the practice - but luckily to a different GP. She recognised the lot and provided the prescription. Had I seen her first there would have been so much less of a problem - but she'd been on maternity leave.

Jenny sussex - if you have a good GP stick with them. You do not need a rheumy if you have a good GP. I would suggest you take that Kirwan paper I recommended before and discuss it with your GP. The reduction that consultant is demanding is actually very similar to his regimen - but we as patients have found that a slower reduction works even better than his. It depends on the patient - we are all different - and several of us have found that reducing 1mg at a time from 15/20mg works better. Some people do manage the 2.5mg steps but often they will settle at a lower maintenance dose that controls the symptoms.

I never returned to that consultant - I was moving abroad anyway a few months later but stayed with my UK GP for the first year or two in combination with the local GP and rheumy for emergencies. Then I moved here permanently and things changed. Two years ago I had a major hiccup after a dodgy batch of pred that led to a flare, a change of pred to Medrol (the corticosteroid used here) - and that was horrendous. The medrol simply didn't work for me and I had a major flare and some other problems. After that my GP here, rheumy trained, switched me to Lodotra, a special delayed release form of pred you take at night. It's brilliant and I have steadily reduced 1mg at a time over 6 weeks constantly since. I'm resting at 5mg for the moment. But my GP here has one single mantra: SLOWLY! She couldn't care about blood results - she is only interested in symptoms and how I feel.

If you can find a GP who is interested and willing to discuss the situation you are on to a really good thing and it is the thing I would wish for anyone with PMR - and some of the specialists are beginning to understand where we are coming from. Our "dead slow and nearly stop" reduction plan is being tried out by a rheumy: "It works" he said. The next thing is to get them to understand that if pred works there is no point in messing about with other unproven drugs (with horrid side effects as well) until they have sorted out the best way to use pred. Go slowly enough and you will get your patients down to a low enough pred dose to not have to panic about side effects without adding in another confuser.

Good luck ladies ;-) - oh yes, Jenny sussex: now you've come out of the woodwork please post :-) It is nice to have other people talking besides us!

Eileen

Oh, Gosh what a horrible experience! Went for my first Rheumy appointment today. For the last 12 days of taking Pred felt really good (first time in months). Normal markers but responded to steroids within three days. The appointment lasted 10 mins, quick details of medications pulled my arm twisted my neck and told me she didn't know what I had because markers are normal and told everyone who had prm had high inflammation results. Now I have to reduced the steroids to 12.5mg and in two week 10mg then lower and lower. Was told to have a blood test long as a shopping list (already had these in the past with normal results)! The rheumy was rude and dismissive.

The problem is that she doesn't think I have pmr and when the results come back negative I will be at square one with reduced steroids be in terrible pain again. My GP is a new young trainee and will probably take on the advised of the rheumy.

I have seen several GPs and they seem to be on the side of high inflammatory markers!

Please can someone help and advise me when I am up against inexperienced sheep minded consultants.

Kind regards Jenny X

Jenny - I am so sorry, I've been there too, I sat and cried and for the first time my husband saw what I was going through. I was lucky - the GP with whom I could get the first appointment listened, knew the signs of PMR and enough to realise if pred did the job, she wasn't going to argue with that even if it wasn't 100% textbook. This theme of rude and dismissive rheumys is taking off.

Go back to your GP immediately - try every one in your practice until you find one who will listen. Your second GP put you onto pred - and she must have seen what you were like before. Go back to her with the Kirwan paper and point out the "response to pred" criterion.

It is NOT true - approximately 1 in 6 patients with PMR have normal bloods. My rheumy wanted it to be anything else - it's as if it is beneath them.

I've just read the Kirwan paper - they also have this insistence on raised acute phase reactants BUT say on page 2:

"Rapid and significant responsiveness to glucocorticoid treatment is a key feature of PMR. ... Marked relief (more than 80% improvement) of myalgic symptoms within 48 hours of starting the glucocorticoid followed by a relapse in a similar period of time is strong supportive evidence of PMR. A lesser response prompts us to look for alternative diagnoses."

The link for this paper is a few posts ago - download it and take it with you to the practice and insist a GP goes through it with you. You have started on the "pred sandwich" the Bristol group mentions and have demonstrated the good response - at the worst now you may have to bite the bullet and stop it and show the symptoms are back.

I am about to get into this problem with some experts - this inability to accept there are outliers is getting silly. Add to that the fact that this disinterest in identifying WHAT it is when you have a patient who is well on pred after being in severe pain and immobile beforehand but the rheumy disagrees after a cursory examination and history taking is also unacceptable. My first appointment with a rheumy was a good half hour - he did a thorough examination. Six weeks later I had an identical examination - by a minion who admitted he hadn't a clue (he was a GP doing "special interest" day in the clinic).

Where are you? Which hospital were you sent to? We'll work on this.

Oh how frustrating for your Jenny.

"she didn't know what I had because markers are normal and told everyone who had prm had high inflammation results"

Well that just about proves that this is a rheumatologist who isn't abreast of the true facts.

Download the paper that Eileen has recommended and take it to the GP who prescribed the steroids, at the same time stressing how much better you have felt since starting the pills.

The most frustrating part of this is that if you now reduce as instructed and do so again in a couple of weeks time, you risk return of the original pain, leading to the need to increase the dose back up. This can then produce the yo-yo effect which can lead to difficulties when trying to reduce again, whereas at the moment you are on a nice even keel with the steroid starting dose getting control of the inflammation.

I feel for you Jenny especially as I spent almost year under my first rheumatologist whose failure to diagnose me led to many months unable to get out of bed and finally to succumb to PMR's linked condition, GCA, due to that non-diagnosis and necessary treatment. Needless to say, once eventually diagnosed, I asked for referral to a different rheumy recommended by my pharmacist. Oh that everyone lived here in Surrey, so that you could see him too!

I asked one of the research people about this - I really liked what she said: "I prefer to call it "steroid-responsive polymyalgic syndrome" so I have asked her more questions.

As she said, the problem is which comes first, the illness or the label: PMR is what we say it is and what I have as symptoms that respond like magic to pred are not the same as yours, or MrsO's - or what that rheumy has read about or met. Though I imagine she has left a lot of patients like MrsO, undiagnosed and immobile because her criteria are too narrow.

This research person said yesterday she imagines there are a lot of undiagnosed young PMR sufferers out there - which is exactly what I have been saying as a mere patient for the last 4 years!

Ask your GP what she would feel about the label I have given you above.

I think we are getting there - though doesn't help you at the moment Jenny. The next bit is - reduce slowly in small steps...

Eileen

"steroid-responsive polymyalgic syndrome"

Oh I like that too, Eileen! Ok it means some patients might be subjected to a dose of steroids that they MAY not have needed if another illness turns out to be the cause (many of which can be ruled out by specific blood testsin the first place anyway), but no harm is done from such a short trial dose; on the contrary many more patients could be saved the misery of untold pain and, in the case that it is PMR, the risk of GCA due to untreated inflammation.

"This research person said yesterday she imagines there are a lot of undiagnosed young PMR sufferers out there"

I don't know if it's my imagination but we do seem to be hearing from many more people in a younger age grouplately, such as the lady who posted a couple of days ago saying that she had been suffering for years before diagnosis at 41.

MrsO

Yes - purely subjective of course but it does feel that way doesn't it? When you think that when we started participating in the forums you would have expected younger patients to be more internet-savvy but they didn't figure in the population that much it has definitely become more balanced in terms of age range.

If the concept Bristol uses became fairly standard practice I really don't think it matters - one week of 15mg/day pred is nothing. If it works and makes someone who has a very low quality of life able to function again in a relatively pain-free way - what is wrong with that? Combine that with a pretty much mandatory reduction in our way - continuing reductions of 1/2mg at a time over 4 weeks, say, after a starting 6 weeks at 15mg and I really believe you would avoid almost all flares - and even achieve a target of zero after about 2 years which the medics seem to be happy about - but with the option of really being able to identify the dose that doesn't control the symptoms without having to subject the patient to the agony of a flare.

The problem is that with the big step reductions it is impossible to tell which is PMR coming back and what is steroid withdrawal pain because they ARE so similar. I might have been able to reduce long ago had I been on Lodotra or ordinary pred and hadn't had all the problems 2 years ago. If, if, if - but it doesn't alter the fact either that there is what we call PMR that can be messed up by bursitis and/or myofascial pain syndrome and that confuses the process too.

But I think this is being heard - and chewed over.

Eileen