PMRGCAuk
7,234 members11,777 posts

? PMR

Hello. I hope you don't mind me posting . I don't know who else to ask and you all seem so friendly and caring. I am a reasonably healthy 73 year old woman and apart from osteoarthritis of spine and hips managed to walk 3 or 4 miles a week and manage a large garden. About 3 months ago I started with pain in hands and feet and on visiting Doctor and blood tests was told I needed folic acid and Vitamin D 3. Since then I have developed very severe pain in back,hips ,arms and hands. Returned to doctors and had Spine Xray. Given Butan patches and Naproxin. Had to come off Naproxin because of bruising. Pain relief doesn't have any effect at all. So tired and down with constant pain and feel life as I knew it is a distant memory. I hoping to get an appointment on Monday but don't know how to broach my ? self diagnosis of PNMR. As an aside I had Shingles vaccine in July. Sorry to go on but would be grateful for advice. Thank you.

18 Replies
oldestnewest

Hi,

Of course we don’t mind you posting, that’s what we’re here for!

Your continual pain not being relieved by normal pain killers does sound suspiciously like PMR, but it’s very often a last resort after other illnesses have been discounted. Have you had blood tests to rule out other illnesses other than Vit D defiency? Plus if you think it could be PMR perhaps you could request blood tests for inflammation - ESR and CRP, although they are not always conclusive. Symptoms really are the key, and your pains and fatigue certainly could be PMR.

There has been some discussion about shingles vaccine and the onset of PMR on this forum, you might like to read through the following

healthunlocked.com/pmrgcauk...

3 likes
Reply

Hello and welcome to the site! Sorry to hear that you have been suffering so much!

It is very difficult to separate symptoms out when you suffer from multiple ailments, as so many of us do.

In my experience there is a kind of acute urgency about PMR. I found that my walk was a shuffle and I bent over. I couldn't raise my arms above my head. The horrible pain in my shoulders and groin was always both sides. I needed help to get out of bed, getting in and out of a bath seemed insurmountable. I felt as if I had flu in my body. I am not sure how long a milder version of this had been going on accompanied by low mood. A clever young doctor spotted it at yet another appointment for vague, painful ,troubling symptoms.

I was given a prescription for Prednisalone 20 mgs a day. The relief began as soon as the steroid was in my system, within 48 hours I was completely mobile, the pain was practically gone, the depression completely lifted. I remained euphoric for about 6 weeks.

Apart from the blood tests to look at inflammation levels ( a useful indicator) the test is really your response to Pred. It might not be as dramatic as mine and it might take longer, but if your symptoms fit and the relief is huge, then you've got it.

So perhaps your GP would give you a trial dose, for at least a couple of weeks. This would let you both know, one way or the other.

5 likes
Reply

Thank you. I am pleased you were diagnosed and treated so quickly. I hope you making good progress and feeling better. I'm hoping my GP is as quick to offer me a trial dose. My GPs can be a bit dismissive and put things down to ones age! Will let you know what they say. Thank you once again.

Reply

Insist, put your foot down ( if you can) . Can't keep calling you 11044! Let us know what happens!

Reply

"As an aside I had Shingles vaccine in July."

PMR is actually listed by the manufactuers as a possible adverse event for the shingles vaccine!

You need ESR/CRP blood tests - although you can still have PMR even if they are normal (1 in 5 patients don't have raised markers for inflammation). The physical examination is also pretty characteristic.

This may help:

rcpe.ac.uk/sites/default/fi...

It isn't a particulalry difficult read - and is aimed at GPs so your GP shouldn't be offended.

Do let us know how you get on.

Reply

Thank you. I read the article. It is interesting and I certainly do have some of the markers. Of course , it could be something else entirely. I will let you know after my appointment with my GP. Just want to know what's happening and hopefully some relief from the pain and stiffness. Thank you once again.

Reply

Try Prednisone as fast as possible! Report back.

Reply

Will do! Never see same GP twice ( I don't go very often ) Hope I get a sympathetic ear ! Thank you.

Reply

Please don't apologise. I was new to this 'disease' thing after not seeing a doctor for 20 years or having drugs stronger than panadol for just as long. Not until I was diagnosed GCA in Dec 2016 and now I'm drowning in doc visits and pills!!! The forums and the advice from fellow-sufferers have been invaluable to understand what is happening, and how to cope.

Keep asking, Christina.

Best wishes from Auckland, New Zealand.

1 like
Reply

Thank you ,Sondya for your comments. I can see how lovely and positive everyone is and such a fount of helpful information. Hope I get the same from my doctor tomorrow !

Best wishes from Yorkshire and thank you once again.

Reply

Where in Yorkshire? There are a few support groups in various directions in Yorkshire and one of the top PMR rheumies is at Leeds - works out of Warfedale at Otley now I think (don't quote me, might be another hospital). One lady traveled from Kent to see her!!!! It was worth it - she got the right diagnosis as a result.

Reply

Hallo.

I'm in Leeds ! I haven't had a definite diagnosis yet. Went to Doctor this am. She has started me on 15mg of Pred for 5 days and to see her on Friday. My blood markers are normal so she was dubious . The diagnosis was complicated by a fractured lumbar verebra which showed upper on the Xray which I had last week. It will be interesting to see if my symptoms are helped. It does possibly explain my back pain but not my other problems. Thank you for your suggestion. I have heard about Doctor Mackie and how good she is. Thank you for your interest - I will keep you posted.

Reply

If you look at the pinned posts on the side bar there is one about the December Ilkley meet-up.

Reply

Thank you. I should know by then if I am eligible to attend!

Reply

Hi ChristinaR!

The Rheumatologist PMRPro is referring to is mine. Dr Mackie who works out of Chapel Allerton Hospital and sometimes Otley. She is a leading light in PMR/ GCA and a lovely person.

If this isn't " meant" I don't know what is. Ask for a referral. Keep us posted!!!

Reply

Thank you. She does sound very positive and approachable. It all depends whether the doubtful senior GP decides my symptoms are not due to PMR but the fracture. He's a nice guy and I can see it is difficult He wants to refer me to the Spinal Unit so..... See what happens on Friday. Best wishes and thanks again.

Reply

Whatever is making you suffer, I sincerely hope that they find out soon and get you some relief!!!

Stay with us in the meantime. PMR is no respecter of other conditions, it just piles on the agony.

Reply

Thank you. I will stay in touch. Best wishes.

Reply

You may also like...