What are PMR and GCA? Simple explanations of the ... - PMRGCAuk

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What are PMR and GCA? Simple explanations of the basics for family and friends

PMRpro profile image
PMRproAmbassador

I am a member of another forum where we had an easy to find section with this sort of information. Some one asked for a non-academic explanation of PMR the other day so I have taken the one from there to repeat here.

The basics of PMR:

Polymyalgia rheumatica is disorder that affects large muscle groups in the body with episodes of pain and stiffness. Polymyalgia rheumatica is generally a disorder of older adults over the age of 50 and affects twice as many women as men. In general, the older a person is, the higher the risk of developing the condition.

The cause of polymyalgia rheumatica is not known, but it may be due to an abnormal response of the immune system. In an autoimmune disorder, the body's immune system mistakes healthy tissues as foreign and potentially dangerous invaders into the body and attacks them. This results in inflammation and may lead to the painful symptoms of polymyalgia rheumatica.

The symptoms of polymyalgia rheumatica usually appear suddenly and are moderate to severe. The hallmark symptoms are pain and stiffness on the neck, hips, and shoulders. About 15 percent of people with polymyalgia rheumatica develop a potentially serious complication called temporal arteritis, which includes additional symptoms. For more details on symptoms, refer to symptoms of polymyalgia rheumatica.

Making a diagnosis of polymyalgia rheumatica begins with taking a thorough medical history, including symptoms, and completing a physical examination. There is no precise test to diagnose polymyalgia rheumatica. Medical tests generally include a variety of blood tests that are nonspecific, but their results may increase the suspicion of a diagnosis of polymyalgia rheumatica. These tests include a complete blood count (CBC), which can reveal anemia, one of the symptoms of polymyalgia rheumatic. They also include an erythrocyte sedimentation rate (ESR), which can reveal an inflammatory process occurring in the body.

Tests are also done to rule out other conditions with similar symptoms, such as rheumatoid arthritis.

It is possible that a diagnosis of polymyalgia rheumatica can be missed or delayed because the disease may appear similar to other conditions or diseases, such as aging, influenza, and fibromyalgia. For more information on misdiagnosis, refer to misdiagnosis of polymyalgia rheumatica.

Polymyalgia rheumatica usually disappears on its own without treatment. However this can take several years. In the meantime treatment can be very effective in relieving symptoms and helping people to live normal, active lives. Treatment varies depending on the severity of symptoms, the presence of complications, a person's age and medical history, and other factors. Treatment can include a combination of medication, regular exercise, and eating a healthy diet.

I will also add the GCA Basics article here:

Also known as temporal arteritis or cranial arteritis, giant cell arteritis is the most common form of vasculitis that occurs in adults. Almost all patients who develop giant cell arteritis are over the age of 50. Temporal arteritis commonly causes headaches, joint pain, facial pain, fever, and difficulties with vision, and sometimes permanent visual loss in one or both eyes. Because the disease is relatively uncommon and because the disease can cause so many different symptoms, the diagnosis of temporal arteritis can be difficult to make. With appropriate therapy, temporal arteritis is an eminently treatable, controllable, and often curable disease. The disease is called temporal arteritis because the temporal arteries, which course along the sides of the head just in front of the ears (to the temples) often become inflamed. The term giant cell arteritis is often used because when one looks at biopsies of inflamed temporal arteries under a microscope, one often sees large or giant cells.

Who gets Giant Cell Arteritis?

Temporal arteritis is a disease of older people. The average age at onset is 72, and almost all people with the disease are over the age of 50. Women are afflicted with the disease 2 to 3 times more commonly than men. The disease can occur in every racial group but is most common in people of Scandinavian descent.

Classic Symptoms of Giant Cell Arteritis

The most common symptoms of temporal arteritis are headache, pain in the shoulders and hips (called polymyalgia rheumatica), pain in the jaw after chewing (called jaw claudication), fever, and blurred vision. Other symptoms can include tenderness of scalp (it hurts to comb the hair), cough, throat pain, tongue pain, weight loss, depression, stroke, or pain in the arms during exercise. Some patients have many of these symptoms; others have only a few. Blindness the most feared complication can develop if the disease is not treated in a timely fashion.

What Causes Giant Cell Arteritis?

We do not know. We do know that aging has something to do with the disease. And we know that the body's immune system attacks and inflames the arteries. But we do not know why the immune system attack occurs when and where it does.

47 Replies

Thank you PMRpro; this is very useful. I will keep it to inform my friends (and dare I say it, our local doctors. And even the rheumatologist......)

I well remember that explanation many moons ago and searched my computer when I read that post. I gave up after a couple of hours.

On 12th May 2010 at 9.45am sitting outside in a wheelchair, I met someone with PMR, knowledge and a good memory. Stay well and safe xxxx

PMRpro profile image
PMRproAmbassador in reply to jinasc

Doing my best!

Thank you for posting this!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Just a comment on common Classic Symptoms of GCA above - if you have cranial GCA (Temporal Arteritis) only and not PMR, you usually have issues with shoulders only not hips, and can very often be diagnosed initially with a frozen shoulder.

Thank you for posting this. I always find it difficult explaining PMR to family and friends.

Thanks for these excellent explanations, really useful for puzzled friends.

Very useful! Thanks for this. Only thing I would add, CRP is not mentioned and in my case my ESR was classed as within the normal range in the 20s but my CRP at 27 clinched the diagnosis. Both have been in low single figures since taking pred.

PMRpro profile image
PMRproAmbassador in reply to Rache

Your family and friends aren't interested in the blood tests - unless they are like me ...

Thank you so much.

Very good post and interesting to learn how closely PMR and GCA can be the same symptoms. I've suffered from headaches for years and years, then came the neck and shoulder pain...all put down to the ageing process, but could have been PMR lurking back then. The symptoms I experienced with GCA were: Jaw claudication, tender head (not temples) and headache. I think it was nipped in the bud, but very aware it could return whilst reducing. Good article that I've now printed off to keep.

Thank you very much for this excellent explanation - very helpful.

Interestingly, it was only this morning that I was toying with the idea of a Frequently Asked Questions sheet for PMR from a non specialist viewpoint.

'

It seems to me, after six years on this Forum ( not that long by some people's experience) that so many questions cover similar topics.

If something like this could be kept short, simple and easy to read, might it help, or would it be, quite simply, not practicable bearing in mind the scope of PMR ?

Paddy

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Charlie1boy

It has been much discussed - and again recently...but it does mean that a lot needs to go on in the background before it can be achieved. @PMRpro has made a start by trawling through her records...

hence this post!

Yes, I do understand that. What started me off was the number of times posts ask what to do when a flare comes along. I guess it's not that simple at the end of the day, and not really helped my NICE guidelines for PMR treatment.

Exeter not quite good enough yesterday, but what a game!!

Paddy

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Charlie1boy

Good game, wrong outcome, but never mind...have to go for Premiership now!

PMRpro profile image
PMRproAmbassador in reply to Charlie1boy

Such a thing exists on another forum, the first PMRGCAuk charity forum as it happens, started after some ladies met on the patient.info forum. The format there allowed it to be done very easily but the format here is fairly useless for doing that sort of thing and we have tried to work out a way of doing it for a long time. I will be able to access these from my own profile here as well as however we manage to sort it out - I thought I might just as well post them in the meantime so you will see a lot of activity in the near future.

The repeated questions are because people simply don't read all the posts. I know it isn't easy now - but this week there were two identical posts on one day!!

Charlie1boy profile image
Charlie1boy in reply to PMRpro

Yes, I can quite understand that about people just not reading posts. I'd find that really frustrating.Cheers

Paddy

i see now that alot of post are the same but being new i couldn't find the right post on the site and posts are not date marked

Hh

Hi I thought your explanation to GCE and Pmr was great easy to understand, Iwas first diagnosed with GCA.and started on a high dose of prednisalone, much later had a biopsy but had symptoms of GCA Ihave PMR and have had to to put my meds up to 15% with my Rheumatologist help,I'm feeling better but it takes a awhile to come right, I was in quite a dark place afew weeks ago but I don't feel so alone now your help and jokes are a great tonic,THANK YOU SOMUCH.

Great information I’ve had pmr for just over two years now, and I’m on 4 mil of presidone. I’m just wondering how many or the percentage of people recover from pmr

Thanks

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Streetglide18

The majority….. PMR & GCA are classed as self limiting diseases, unless you have a form that just doesn’t want to go away…unusual but certainly not unheard of!

But as for actual numbers, I doubt anyone really knows.

Ok Thank you

Fyi

At my current 4 mil grams I’m not pain free but I’m living with about as much pain as I want to tolerate

I’m not sure what is best , to increase my dose and go pain free or stay at my current dose?

PMRpro profile image
PMRproAmbassador in reply to Streetglide18

How much better are you on 5mg?

The trouble with putting up with the dose being a tiny bit too low is that the left-over inflammation builds up and like a dripping tap will fill a bucket sooner or later, the inflammation will eventually get to the level where it causes symptoms and you may be back where you started.

Streetglide18 profile image
Streetglide18 in reply to PMRpro

Oh. That makes good sense ! I’ll try to back to five and see what happens.

Thank you!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Streetglide18

PMRpro has given good advice, and I agree…but would also say 2 years into PMR, no matter what you have read/been told by medics is not very long…so your illness may well need 5mg at this moment in time.

ThanksI neglected to say that I’m half way through my Prostarate cancer radiation treatments I have about 12 left to do. I do it 5 days a week

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Streetglide18

Sorry to hear about your cancer…..personally don’t know how that affects your PMR, but sure MrsNails will be along idc with advice.

Thanks It’s amazing how fast life changes 2 years ago I was in very good health .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Streetglide18

Yes it is!….good job we can’t see into the future….but we humans are a very resilient bunch! Take care.

Thanks

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to Streetglide18

Hi Streetglide, l’ll touch base with you tomorrow as per DorsetLady - been on an Away Day today so will be relaxing tomorrow 😉 it’s all about pacing! Kind Regards

MrsN

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to MrsNails

Thanks MrsN

Ok

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to Streetglide18

Hi StreetglideJust catching up on yesterdays posts/replies.

When you are undergoing treatment for Cancer either with Chemotherapy or Radiation it certainly takes it out of you.

RT can certainly make you more tired & personally l would not struggle on 4mg Pred when 5mg may make all the difference.

Certainly for you, rest & pacing is paramount as you have two major things going on in your body so you need all the help you can get. This exceptional hot weather will also makes things more tiring for you.

Wishing You All The Best 🍀

MrsN

Thank you I did go up to five migrants today, I think I’m better But I take your advice and make sure it keep the inflammation down, Yes the radiation does make a person tired and low on energy

PMRpro profile image
PMRproAmbassador in reply to Streetglide18

I hope you didn't tell Priti Patel ;) Autocorrect can give us a load of laughs ...

PMRpro profile image
PMRproAmbassador in reply to Streetglide18

Having been the other half of that experience, I'd say the stress will not be helping the PMR! It feeds on stress - and if a bit more pred keeps you feeling more human then that is what you need. Plus the radiotherapy makes you very tired - it mightn't be just the PMR and you need all the help you can get.

Life can change from one week to the next - never mind in 2 years.

PMRpro profile image
PMRproAmbassador in reply to Streetglide18

I think the figure is thought to be over 90% - but that doesn't happen in the few years many doctors think. About half of patients are off pred by 6 years - but many need a low dose for a long time. It is difficult to say whether that is for the PMR or because of adrenal insufficiency secondary to long term pred. I know of people who eventually got off pred after 10 or more years.

Streetglide18 profile image
Streetglide18 in reply to PMRpro

Thanks for your insight, I will take your advice and bump up to 5 mil grams. Because what you have said makes so much sense.Thank you

Thanks for explaining in simple way difference between gca and pmr

Hi thanks for that. Saw rheumatologist today it has been confirmed I have GCA with my PMR. A bit hard to take in but once I get my head around it I will deal with it. Still on high dose steroids and more blood tests to monitor me in the pipeline. I find it hard to sleep having to take the weekly tablet for bones a certain time before taking regular daily meds. I look and feel a 100! It’s good to know I’m am not the only one feeling bad.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Richmond162

You only need to take bone protector half an hour before other meds/food, so why are you finding it hard to sleep.

If you have an issue, might be worth creating a new post...only a few of us will see this as it's in an older thread.

..and on this forum- PMRGCAuk not the NRAS one you are also on.

thanks for replying. I find i must take steroids about 5am then i am able to function. weekly tablet says I should take before all other medication. Hence all the broken sleep. Thank goodness for these forums.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Richmond162

Okay..,,

It's the steroids causing the sleepless nights. They affect many of us. My doc gave me some Zopiclone 3.75mg sleeping tabs...they work !!

Thank you for that. I have made a note of it.

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