Could this be PMR?

Hi Paul,

So pleased for you that your treatment worked. When you say bloodwork was positive, what blood test did you have? Is there a specific one to diagnose PMR?

Thank you

PMR is diagnosed through symptoms and eliminating other possibilities.  Have a look at the first page of this forum and read up on PMR.  Unfortunately there is no definitive test to confirm PMR.

This is a link to one of the information papers on this site.  There are others, I think I gave the link in another reply in this thread.

https://patient.info/health/polymyalgia-rheumatica-leaflet

There is no specific test for PMR itself but the ESR (sedimentation rate), CRP (c-reactive protein) and PV (blood viscosity) are all indicators of inflammation being present in the body somewhere - and you mentioned your doctor had seen those in the past. They take these results plus the symptoms to make a presumptive diagnosis and if they think it could be PMR often try a moderate dose of prednisone - it is the only medication that manages the inflammation in PMR. If you get a very good response of the symptoms they often accept that as confirmation.

By the way - where in the UK are you? There are 3 charities with associated support groups in the UK and perhaps one is near enough to you for you to be able to chat to someone. They all have helplines.

I have been on pred for over 8 years - I have absolutely NO side effects. I did gain weight - and lost it all again. Many people have avoided weight gain and really, for most of the side effects of pred there are ways of managing them well. And, to be honest, I often wonder when someone says they would rather have the pain than the pred, if maybe they don't have PMR! I was practically housebound eventually, crawled upstairs on hands and knees and stomped down like a toddler. I was in constant pain. Another lady was in bed for most of a year because her doctors didn't diagnose PMR and she had to be transported to her hospital appointments by ambulance. 

For PMR there is not yet any option other than pred - and the difference it makes is a minor miracle.

The tests are "erthrocyte sedimentation rate, and Crp. They are looking for inflammation markers.

Hi Lilian,

Thank you for replying and for your kind wishes. I had x rays taken of my neck and spine only. Since my visit with my rhuematologist about 10 months ago my symptoms have become worse. My neck, shoulders, arms and shoulder blades have become more painful this past week. I don't want to go on steroids but if they make these horrible symptoms go away I don't mind trying them. My life is on hold at the moment, I only go out if I have to, I'm afraid to drive because of the light headed feeling. I can't sleep at night either.

Thank you for your kind advice.

Regards

Hi Lina3x

I came off steroids approx ten months ago and had a very hard time on them and getting off them...i still had pain in my shoulders and arms also hips and thighs. My rheumatologist sent me for a scan on my shoulders also x-rays of my shoulders hips and thighs. The Technician who did the scan told me i had bursitis. I then saw my Rheumatologist who gave me the results of my x-rays and diagnosed me with osteoarthritis. I have degeneration of the discs in my lumber sacral region thus causing pain in hips and thighs...and as well as bursitis in my shoulders i have breakdown of cartilage and bones spurs..and it is my belief this is what i had when diagnosed with PMR two years ago..i was not as fortunate as you to be sent for an x-ray i was diagnosed with PMR no x-rays or scans..and believe i went through the dreadful side effects of steroids and tapering and withdrawing from steroids unecessarily. I am now being assigned to an orthopaedic consultant. Three days ago after the orthopaedic consultant assured me that the mechanism of action with a cortisone shot into my shoulder for the bursitis is nothing like the mechanism of action of steroids which enter the system, i had the cortisone shot into my shoulder and i have no pain now.. but i will have exercise and physio plus pain management in the future to manage the osteoarthritis. I was assured that the bursitis will eventually heal with right treatment.

I would try and keep anyone off steroids if there was alternative treatment. Obviously, steroids are absolutely necessary with GCA and other autoimmune diseases.

You mentioned you had enlarged arteries in your temple..do you have bad headaches, jaw pain and changes with your vision along with the enlarged arteries in your temples indicators of GCA...if so mention to your Rheumatologist....it is doubtful that your rheumatologist will give you steroids as this will make your bones worse..with the steroid you would have to have a dexa scan to check bone density, go on Alendronic acid which has awful side effects and Accrete D3 for calcium..

If this sounds like i am trying to put you off steroids, i am, unless it does turn out you have GCA then that's a different reason altogether for taking steroids...i do not know what part of the world you are in but in cold weather osteoarthritis is more painful, mine definitely is. I have been prescibed tramadol and paracetamol to be taken together for the pain and they work..or co-codomol....but speak to your doc or rheumatologist about taking them first....i really do wish you will be able to find the right prescription for your pain......my sincere best wishes to you from one osteoarthritis sufferer to another....

Hi Lina3x

If you are presenting with headaches, jaw pain, vision problems and swollen temple arteries all symptoms of GCA....tell your doc or rheumatologist as soon as you can..you will definitely be put on steroids i you are diagnosed with GCA..my best wishes to you Lina3x...

Hi Lilian,

Thank you so much for your lengthy and informative post. It sounds as though you have really bad a time of it with your doctors. I can completely understand your concerns with steroids but I have come to the point where I need to try something to get me out of this rut. I do have the raised veins, headaches, has pain that you describe. However, these could be attributed to TMD, TMJ, migraines or arthritis. My raised veins are new to me and because of my neck and shoulder problems I immediately associated it with GCA, my GP just shrugged at this idea. My dentist have noted TMJ on my records quite recently though. I do get vision problems but have recently had my eyes checked and had a new prescription. There were no problems identified there but I cannot wear my new prescription. I have been back for a recheck but prescription remains the same. I wear my old spectacles but have gone up one point on my contact lenses, these seem to be ok. I am in the UK and cold weather definitely affects my pain levels. However, I hate getting too warm, I go out in t shirts when others are wearing sweaters. I get cold if I sit around for too long in a cool room and start to ache really badly. Thank you once again for your post and I wish you well.

Kind regards

Hi Lina3x

Your very welcome Lina3x....my very best wishes in getting relief from pain, if possible, without steroids.....x

Hi Lina3x

Yes, my doctors were, i feel negligent when diagnosing PMR, for not ordering scans and x-rays at the time, but my doc and rheumatologist were marvellous when i was withdrawing from prednisolone. I spoke to both of them about it recently and they said they will bear it mind for future patients suffering pain and showing inflammation.....huge best wishes Lina3x.....x

The pain and symptoms of TMJ and GCA can be quite similar and it isn't unusual for a patient to be told one when it is the other. 

What sort of vision problems are you having? I'm afraid GPs don't have a lot of experience with GCA so please, if your visual problems get worse and persist, do please go to A&E and explain all you have told us. PMR is often one of the symptoms of GCA, your headaches are another. Do you have jaw pain when eating or scalp pain?

Hi Eileen,

My eyes ache and I sometimes have pain in my forehead above my eyes which only lasts for seconds. This pain is relatively new to me, so are the noticable veins above my temple. Sometimes I have difficulty focussing, I cannot look at fast moving objects like traffic, tv, or looking around supermarket shelves, for example. I get anxious and do what i need to do and leave. This has been happening for a long time and I have always put it down to anxiety. I do get anxiety and I have been stressed because my elderly mother has been staying with me. I have noticed that when my neck pain is bad, or when I am stressed, it sets off all my symptoms, headaches, muzzy head, woozy feeling and generally feeling unwell. A Couple of months ago I had my eyes tested and all was ok apart from a new prescription. I went to my dentist two weeks ago and mentioned to him that when I move my lower jaw from side to side, I can hear loud clicking and grinding noises. He mentioned TMJ and told me not to do it as it would make matters worse. He noted it on my records for my new dentist as he is leaving. My jaw doesn't hurt when I chew and I am not aware of scalp pain. I don't sleep very well, always had migraines 30 years or more but diuretics help with those. I am also aware that cervical spondylosis can give you headaches and dizziness. So you see I am in a bit of a mess, so many things going on that could be due to many things.

Thanks for reading, sorry to go on.

Regards

Being anxious is likely to make you feel worse - that is obvious, Having elderly mothers around isn't the most calming experience either!

Your neck pain could well be due to something as simple as tensed muscles in your back and shoulders which will also affect your neck. 

However - if the headache gets worse, if it is a new type of ache, don't hesitate to speak to your doctor. And if you get more visual symptoms - see him asap.

Hi Lilian,

So sorry you have had such a traumatic time reaching your diagnosis. Good on you for having the courage to speak up, I'm sure that you have helped many people because of it. Thank you for your good wishes, I send mine to you too.

Kind Regards?