Pre Diagnosis

Ailsa, I meant to add that it might be useful for you to ask for a Vitamin D blood test and also a hormone test if you are at the menopause stage.  A deficiency in Vit D can cause pain similar to that of PMR, and we have come across people whose pain has eventually been put down to a hormone imbalance which treatment can help.

Dear Mrs. O, you are so accurate with the description of the symptoms of PMR and where the pain can be located.  I experienced and still experience the same.  Shoulder and hip girdle pain right now, and this can change.  My GP KNEW about the different symptoms and did not even take blood tests, while the RA doctor did not want to fully acknowledge that I have PMR.

I had to educate my Physio yesterday about PMR and showed him a printed copy of the Mayo Clinic description.  He had never heard of it, and I kindly asked him NOT to have me do repetetive exercises for the pain in my left arm in particular.  He did ultra sound and heat for the lower back. It did help some, but of course I am still on a burst of prednisone which is 25 mg for three days, and then to lower to 20 for a week or so, depending on the pain.

With thanks for helping us newcomers to understand....Erika

Hi Ailsa and Mrs O,

I am also new to being diagnosed with PMR.  Mrs O...I had all the symptons you mentioned. Mine started of with big cronic daily headaches

for which I had a CT scan..nothing was wrong. I have suffered with depression for 40 years...so the doc thought it was all down to that and stress...So Ailsa, when you say you don't feel like you are being taken seriously, I so know that feeling!! I have been on steroids for just over a week. They didn't take long to kick in. My blood tests didn't show raised inflammatory levels. So when I saw my doc yesterday, he was shocked to hear the prednisolone had worked...as he thought it was Fibromyalgia. Apparently steroids don't help Fibromyalgia.

All I know is I feel almost human again. I'm going back to work on Monday, having been off for 3-4 months. I still get the achey bits and pieces, but nothing like before. Hope sharing this has helped Ailsa?

I wish you all the best. Keep in touch.

Jennie

Hi Jennie, I'm sorry to hear of all your difficulties you experienced in getting a diagnosis - sadly that happens more often that we would wish.

You haven't said what dose you were started on.  Often with the head pain symptom, the cause is GCA (Giant Cell Arteritis) which is linked to PMR but which needs a much higher starting dose.  Fortunately, whatever dose you started on it has solved your head pain which must be such a relief for you.

Be very careful to avoid stress when you return to work - it is early days in your treatment and you need to have plenty of rest and not overdo things.  The steroids are not curing anything but just damping down the inflammation whilst the disease runs it course, and we have to do our bit to help by taking special care of ourselves.

I'm so glad you are feeling much better and long may that continue. 

Yes, Mrs O...I do tend to do all or nothing. I'll do my best to avoid that.

Thank you for your kind thoughts. Funnily enough the doc hasn't mentioned the headaches! I'm just putting two and two together. It all came on one thing after the other. I haven't suffered from headaches before. So, I do believe they were a part of this PMR. I'm on 15mg of prednisolone a day. I do feel tired bodily, but wide awake. Strange! I guess it's the steroids?

I've been under the Rheumatologist for the past 2-3 years. He was treating me for Psoriatic Arthritis. I don't have psoriasis...my dad did. He was reluctant to label me with Fibromyalgia...wonder what he will say with PMR?? So, my problem is that the inflammatory levels don't show high in my blood tests!!! So my joint pain has been classed as "mild"...

when I know it certainly is not! Don't know if you have heard of anything like this before Mrs O?

I do hope you are ok Mrs O? Have you had this for long?

I think it is a cheek for someone else to assess any level of pain - they aren't suffering it! Apart from the bursitis my joint pain was fairly mild - and that is quite common. And I have never had inflammatory markers that were even high normal never mind raised - but I could barely walk.

I had had PMR for at least 5 years before it went haywire and I could barely move. After 6 months and working out for myself what it was I saw a rheumy because my GP wouldn't accept the lack of blood markers. Neither would he - he wanted it to be anything except PMR and psoriatric arthritis was pushed quite hard. He gave me 6 weeks of pred in the mentime as I had to go to the USA and had no idea how I would manage. Six hours after the first 15mg I felt great! Said rheumy wasn't interested in that - wouldn't listen and told me he thought it was "another inflammatory arthritis". Luckily a different GP in the practice was convinced. 

I'm pleased he didn't want to label you with fibromyalgia - since it was the wrong diagnosis.

From what you have said Eileen, it seems PMR may have been the problem for a lot longer than I realised. Would GCA have shown up in a CT scan? That's what I'm concerned about. I looked into it last night. They say you need an Ultrasound on the veins at the temple and also under the arm...I've had a lump under the left arm for months that one doc said we must keep and eye on and actually looked at, but the doc I have been seeing mostly is male and I'm reluctant to ask him to look at it. He knows about it, and I do tell him about it. (It's not painful, unless poked about with) Surely isn't this a sign???????? Are the docs too busy to actually put two and two together?

Hi Eileen. Just read your thread with interest regarding your blood markers. My original doctor based her diagnosis on my blood test reading, my symptoms and the pain I was in at the time. The reading was 78 which in her mind was high, and when I asked her what the reading should be she stated that 0 to 5 was good. My current doctor feels that I was mis-diagnosed and that I did not have PMR, he thinks the reading was low but does agree that the pain in my shoulders and arms could be PMR but the leg pain certainly wasn’t as he did not think PMR affected the legs. Is 78 a reasonable indicator for PMR and can it affect the legs, in my case behind the knee’s and down the calfs. “Best wishes from her in doors”. Dave

No, an ordinary CT doesn't show GCA - it needs a special sort which is new and not widely available where a contrast substance is injected and the inflamed areas take it up more than other areas. 

They more often take a temporal artery biopsy (cut out a bit of the artery at your temple) then use ultrasound, that is also a relatively new technique and not widely available except where the study for it was done. i think it is unlikely that the lump under your arm is an arteritis - but it is a bit silly NOT to ask the doctor just because he is male. They have seen it all before and it's their job. You can't say they aren't putting 2 and 2 together if you don't show and tell! It could be all sorts of things and DOES need keeping an eye on.

GCA only really is a serious concern when it affects certain arteries supplying the optic nerve and then it can affect your sight. Only about  a fifth of patients with PMR go on to develop GCA and usually you get warnings with headache, jaw pain when chewing, sometimes scalp pain and finally visual symptoms. You can have one without the other in both cases and for some GCA patients they also develop PMR symptoms but not always.

And ESR of 78 is pretty high by anyone's standards. 0-5 is rarely found in our age group - as children we have that sort of reading, it is about 0 at birth, but it tends to rise with age and since ESR also rises witha cold or other infection it is pretty unusual to find 0-5 (don't know where she got that idea from). It is generally accepted that up to 30-ish is fine but above that is a sign there is more generlised inflammation that needs investigating. 

"PMR doesn't affect the legs"? Well it darn well affected mine! It is more hip stiffness that is absolutely typical - but that can affect moving your legs, you walk wrongly and that causes other back and leg pain as a result. I had thigh and calf pain, claudication, when walking or climbing stairs. That is a typical PMR/GCA symptom.

It doesn't really matter though does it - if he accepts the shoulder and arms are PMR you probably do have PMR! I do wish they'd all put their brains in gear...

Thanks Eileen. I am ready to fight my corner with him tomorrow. Take care.

Jennie, have I "heard anything like this before"?  Yes, unfortunately more times than I would like!  

I spent a year in agony, undiagnosed by GPs or my first rheumy.  If, like you, a family member had ever suffered with psoriasis, then I would surely have been labelled as having that, as that is the only question my first rheumy asked.  I wasn't diagnosed until a year later when the symptoms of GCA joined in the 'fun' with what the previous year had been PMR, and that diagnosis was suggested by a pharmacist!  Happily my first dose of 40mg of Pred proved successful in just a few hours and the very worst symptoms of GCA disappeare as if by magic.  Even more happily, both conditions went into remission just over 2 years ago.  It did take 5-6 years to resolve but everyone is different in the way they illness present and their response to the treatment.

As for you describing feeling "bodily tired, but wide awake", that isn't at all unusual.  The starting dose of steroids can give us a 'high' but at the same time can disrupt our sleep.  That is why it is so important to try and set aside some time during the day to have a catnap.  Both the inflammation of PMR and the steroids can contribute to the tiredness/fatigue - again rest whenever you can

Many people we have come across who are at working age when this condition strikes have found they have to stop work for a while in the early days and/or return to work on a part-time basis when they start to feel better, gradually building up their hours. 

You are not alone in having PMR but having blood tests which fail to reveal any raised markers - just over a quarter of sufferers never has raised markers.  It's a pity that your medics obviously weren't aware of that fact, and with your Dr not commenting on the headaches, I wonder if he is even aware of sudden onset severe head pain raising the possibility of GCA?  Probably not if 3 of my GPs failed to find an answer!

Symptoms to look out for in GCA are severe head pain, often around the temple area, and tenderness over the scalp;  jaw pain when chewing; and any visual problems, such as blurriness or pain.  Often if GCA is suspected, a large dose of steroids (40mg and above) will be prescribed and immediate referral to a rheumatologist arranged,who will usually carry out a biopsy of the temple area to look for any large cells indicative of GCA.  However, it is possible for any large cells to escape the tiny portion of artery removed.  GCA can also affect other arteries in the body.  Jennie, you should not dwell on any of this but just remain alert to the signs, especially as you are having such a good response to your 15mg starting dose.  So enjoy the moment! 

 

Thank you Mrs O, and Eileen for all you very helpful comments.

It makes such a difference when we learn what we are dealing with.

I always say, if we know what we are dealing with we will cope. It's the NOT knowing that is the problem. And, like you say being aware of signs.

I Wish you both well & will keep you posted.