Hi Just wondering how many people have been diagnosed with this disease under the age of 50?
Polymyalgia Rheumatica: Hi Just... - Fibromyalgia Acti...
Polymyalgia Rheumatica
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Northernnugget
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desquinnPartnerVolunteerFMAUK Trustee
Tends to affect people over the age of 50. Incident rates of 50 -- 68 per 100,000 are normal.
I was diagnosed with GCA at 48.
Although official guidelines state that PMR or GCA effect people over 50 it is not as rare as Doctors would have people believe for people to suffer from these conditions under 50.
In fact , as I found from being a member of the PMR/ GCA uk forum on Health Unlocked there is a high incidence of people with Fibro then developing PMR , or PMR then developing Fibro.
Often , if you have Fibro or another type of health condition like Lupus , a type of Arthritis, Diabetes etc. you seem more likely to be in the group of people that get PMR at an early age or below 50.
And, unfortunately, because Consultants have a habit of not deviating from the "one size fits all" guidelines approach to medicine there are many people that suffered with PMR for a few years with it not being discussed or treated until they reached 50 because " it shouldn't happen before you are 50" , only then getting the diagnosis for PMR and a treatment that helped just because they had a birthday.
If you have been diagnosed with PMR, or you think you could have it before 50 , you want to know more , and find out how to get the right help I would definitely suggest you join the PMRGCA uk forum on Health Unlocked and post this question there. They are an amazing group and have some really knowledgeable members and Ambassadors .
If you do have PMR and Fibro it can be a balancing act getting your medication right fir both and also to stop each condition causing a flare up in the other. It definitely requires creating a New Normal with a lot of pacing and plenty of rest between activity.
There will always be a bell curve or similar and perhaps a 95% spread that the trend is taken from. The 5% is not the norm but is still recognised so there will be people outside the norm that will still be diagnosed, and I agree the norm should not stop the diagnosis being made. But the study I referenced was multi country / multi decade and large scale which will have normalised a lot of data points.
But as you say being under 50 should not preclude a diagnosis of PMR but thankfully treatment is fairly simple and indicative of the diagnosis quite quickly.
Agree , the studies have these figures but they are unfortunately often wrong as they can only base them on figures reported by professionals. If they don't diagnose it in the under 50's it doesn't show up in the figures and one if those awful medical vicious circles occurs.
The situation with PMR , much like with conditions like Fibro, is that official figures rely on people getting diagnosed quickly and efficiently , and as we know with Fibro that is often not the case because of the lack of knowledge or tunnel vision that occurs regularly in the consulting room.
It drives the PMR forum mad when they see people struggling because doctors don't recognise that a patient has PMR or regularly dismiss it as an option just because the guidelines state over 50.
Unfortunately, the treatment options are limited to steroids unless you can't tolerate them and they have their own problems in terms of side effects and an early diagnosis can help people avoid the extra damage caused by the condition and length of time you need the treatment. If you also have Fibro it can complicate matters in trying to get your pain to a manageable level for both conditions , and doctors dont easily understand the need to alter the medication to help both conditions at once , not just one at a time.
Multi decade and in the millions survey data tend to validate the prevalence if not a higher in a UK population. Patient surveys were used to collect any undiagnosed cases but did not find any additional ones. Their age range was >40 so younger.
Forums are always going highlight the people that fall through the cracks and guidelines as that is the nature of things. Co morbid conditions will always cause an issue with treatment. GCA is one of those conditions that intervention early means that negative outcomes over time are prevented.
Yes , I was very lucky , my GCA. was spotted unexpectedly at an appointment for something else with the Opthalmologist . I had been putting down my constant headpain and vision problems to my Neuralgia , Fibro and the Uvietis I was being treated for.
That's why it is so important for clinicians to be more open and aware to the possibilities of patients to occasionally be outside the common guidelines.
Hi thanks for your response So my back story is I started with a frozen shoulder Over time I then had pain in my wrist The shoulder healed the wrist pain continued and seemed to start in my other wrist and I tested negative for Carpal Tunnel and no Immfalmation showed on an ultrasound I was referred to Rheumatology and finally seen after 7 months My sister has PMR and was diagnosed around the age of 53 Inflammation didnt show up her bloods but they started her on a reducing dose of Prednisolone which worked By the time I saw the consultant I had neck pain and numbness in my hands and my shoulders really ached I cant say I suffered fatigue until now I had very similar symptoms to my sister except the wrist pain I explained to the consultant that like myself my sister showed no inflamatory markers in her bloods but has positively responded to steroids The consultant said I couldn't possbily have PMR as I was far to young I was 49 at the time She was very absolute Since then I have be diagnosed with Fibromyalgia I cant help but wonder If the Fibro Is manifesting itself in my wrists as scans etc have shown nothing and the my the rest of my body is feeling the effects of PMR Rheumatology have discharged me in to the care of my GP who has prescibed Gabapentin with the option of switching to Amitrityline then Duloxetine The Gabapentin I feel it has no effect I'll be contacting my GP soon to ask if I can trial steroids x
It may well be worthwhile trying the different neuro med options or a combination of them first with Paracetamol and gentle rotation exercises to help with the inflammation to see if you get the benefit first.
You can need 4-6 weeks and alterations to dose as well as pacing your activity and finding and avoiding certain movements that trigger the pain or issue before you feel real benefits.
Some people don't have high inflammatory markers but also some people with more severe Fibro pain and symptoms can have similar symptoms to PMR while in a flare.
Some people do get wrist issues with PMR but it is less common than constant shoulder , neck , hip and thigh pain that is much worse in the morning can prevent movement and doesn't have any relief at all from standard painkillers or neuro medications.
Basically , have your inflammatory markers checked about a month after your initial test if things are not improving or getting worse as sometimes it takes time for your blood tests to show what inflammation you have.
Its also a good idea to ask the GP to do the blood tests used commonly in diagnosing PMR to rule out any other cause . Testing your ANA for arthritis conditions , getting ultrasound or x-rays on joints to rule out other wear and tear or torn cartilage or synovitis. Testing your Vitamin B 12 and Vitamin D which both commonly cause severe joint pain especially in the wrists , knees and ankles and balance issues and swelling if you are very low or deficient. If you have had previous injuries or surgeries on things like shoulders Fibro or osteo arthritic pain and stiffness can be far worse with these deficiencies while you flare.
Inflammation can be made worse by the effect that vitamin deficiency has on fluids in the body too. Internal dehydration can make all chronic pain and stiffness issues worse but you often don't realise you are suffering from it if you don't feel thirsty.
You have had Carpal Tunnel ruled out , did you have nerve conductivity test to do that?
If not this may help too to rule out issues from essential tremors or peripheral neuropathy .
If you find that you are getting worse or having no or little response to any neuro medications and it's effecting your mobility and quality of life then ask for a Rheumatology referral , you have the right to firmly request one , and ask if you can trial the steroid treatment .
Rule of thumb for PMR is that it responds in days to steroid treatment but you do need to stay on it slowly reducing over time and pacing your activity carefully to prevent flares as long as PMR is in the system. The guidelines state it lasts for upto 2 years but it isn't the patient experience on the PMR forum many find it can take up to 5 and take longer to recover from if you have other conditions like Fibro , OA or Arthritis to manage as well.
If you can it is better to find out as conclusively as possible that the pain is because of PMR and not Fibro or other joint , inflammatory or cartilage problems because you don't to start a course of steroids unless you really have to as they can be hard to get off , even after a few weeks and have a lot of side effects. If it's PMR it's worth the side effects but frustrating if you had got the wrong diagnosis and have to deal with them.
Good Luck , I hope you get answers soon ,
Thank you x
i have been put on at done point and tried all 3 of these and found they did not really help my symptoms ..so after several months I weaned myself off as what's the point in popping pills unless they show improvement and I don't want to cause damage to other parts in my body which according to pain specialist all the stuff I was on would..so was only allowed to take some twice a week and rest the other days if pain too bad...part woman..part mattress..that's me.. i hope you have more success as everyone's body is different and I always hope others don't suffer as bad
Thank you x
My sister had it for quite awhile before it was diagnosed...I think she started with several different complaints but kept being treated wrongly.
The main one was fluid build up in knee and she had slim legs so very noticeable. I kept telling her to keep complaining as they said her knee was ok no arthritis..I said rubbish if it was ok it would look same as other he's talking rubbish.
In the end I was diagnosed at 44ish with fibromyalgia so that is when she told her doc as some of her symptoms were similar to mine..plus a sister in yorkshire had been ill for roughly 10yrs with similar things and not diagnosed correctly.
he gave her more tests and she was diagnosed and put on steroids 6 a day if I remember right plus other stuff... So from the start I would say she was late 40s when she started..but not diagnosed and treated correctly till in early 50s..
she seemed to get better over the treatment and cutting back on steroids..but the a year ir so after finishing treatment she started feeling bad again. It had come back and he said she would probably hsve it for life.put her back on steroids but they did not seem to work as good.. and different name do she asked if she could ho on ones she had been on previously.. he said they had been discontinued and so ahe was on these.
Luckily she had a pharmacist friend and he told her doc had put her on cheap generic version and he had lied and they still did the others..so my sister was brave and went back and in a nice way confronted her doctor and he put her back on the original ones and her health got slot better... unfortunately she passed several years later waiting for a pacemaker for her heart.
My sister in Yorkshire was told she possibly had both as she has a specific gene that masks health conditions.she had a special blood test done to find this out...I had test done too but I do not carry the gene.
Very like my mum. Her PR started with continuous migraines for 2 months bc she did have occasional migraines they didn't look at other possibilities. When she was eventually diagnosed the steroids were miraculous. However she has osteoporosis and the steroids were bad for that so when they could they changed her to methadrexate. It's a few years on now but she still has the swollen knees, she is skinny too so also is very noticable.
They origonally said she didn't have arthritis in her knees from the scan they did, now with no further scans they are saying she does. She finds that hard to believe.
I think she has fibro now bc she's starting to sound like me despite being very healthy for all her life and the immuno suppressants don't help anymore.
please could you expand on what the faulty gene was & the blood test you mentioned ? Was it to do with blood iron/ferritin levels? Thank you 🙏
i have emailed my sister to find out what the blood test was and what it masks...I know they said she had poly even though it did not show up in her bloods and probably fibromyalgia too..plus other health issues but she went private to get more help and took it back to NHS in Leeds in UK.. they now think she also has something called IGG4.... Even though we are sisters we are allergic to different things..like I can take penicillin..she cannot..I could take diclafenic but she couldn't and I was allergic to then what the NHS prescribed in its place but I will get back to you.
thanks Smoggie1, I appreciate your taking the time to respond 🙏 coincidentally, I live near Leeds 😀
my sister got back to me.. it was HLA -B27 blood test. She was having chronic pain in back and hips.. but tests were coming back normal..she was positive for this gene and it masks conditions..I think she said especially arthritis related..but she thinks it masks others too..xx sorry took awhile but she is away at my aunt's who is 86 and just had knee operation to keep her company for a couple of months.
thank you so much for finding out this information/specific gene. I’m going to do some research on this & see if it’s likely to be at play in my case symptoms. Interesting in that I too have terrible pain in hip & lower spine area & foot/ankle on same side! Oh to be 21year old again! 🤭
This is very interesting x
thats ok I think we all started looking into conditions as being 3 sisters with similar symptoms we wanted to know what was going on..my fibro started in my elbow.. one sister in her knee and my sister in Yorkshire her back..she had been ill for quite a few years..then my sister and then me at 43... My sister are 12 and 14yrs older and I was worried I would end up like them..we all have had very stressful lives including serious depression..so not being believed with health problems has got to us over the years as out mum was mentally ill from me being 12... So it gets to you.. I think I had fallen down the stairs and had treatment at hospital due to pain and they thought it might be sacroiliitus . .. my sister was seeing private doc in Leeds and told him all family symptoms..so she got checked my thorough..here I got very little in Suffolk...we also think my mum's mum may have had it as she was wheelchair bound most of time when I was young..but we though arthritis as she had it in hands and mum did..but may have been more but back then over 50yrs ago they did not know alot of these conditions and may have been lumped in with arthritis.. I hope you can get some help.x good luck.
Hi thanks for your response So my back story is I started with a frozen shoulder Over time I then had pain in my wrist The shoulder healed the wrist pain continued and seemed to start in my other wrist and I tested negative for Carpal Tunnel and no Immfalmation showed on an ultrasound I was referred to Rheumatology and finally seen after 7 months My sister has PMR and was diagnosed around the age of 53 Inflammation didnt show up her bloods but they started her on a reducing dose of Prednisolone which worked By the time I saw the consultant I had neck pain and numbness in my hands and my shoulders really ached I cant say I suffered fatigue until now I had very similar symptoms to my sister except the wrist pain I explained to the consultant that like myself my sister showed no inflamatory markers in her bloods but has positively responded to steroids The consultant said I couldn't possbily have PMR as I was far to young I was 49 at the time She was very absolute Since then I have be diagnosed with Fibromyalgia I cant help but wonder If the Fibro Is manifesting itself in my wrists as scans etc have shown nothing and the my the rest of my body is feeling the effects of PMR Rheumatology have discharged me in to the care of my GP who has prescibed Gabapentin with the option of switching to Amitrityline then Duloxetine The Gabapentin I feel it has no effect I'll be contacting my GP soon to ask if I can trial steroids x
Unfortunately , much like most illnesses , PMR doesn't read guidelines and even if it could it would ignore them anyway!
People on the PMR forums most common complaint is that their Doctors and Consultants try to reduce them too quickly and always state PMR should be gone in 18 months to 2 years , so if it stays they start to say it can't be PMR!
Patient experience is very different up to 5 years in some cases , especially for people whom have another health problems as well and doctors are expected to take that into account in their treatment of patients but seldom do without causing people a lot of extra pain , discomfort and drug yo-yoing first. Everyone wants to get off steroids as quickly as they can but not in a way that means they have to keep going back on higher doses again and again when symptoms flare up again.
Silly really , as it is a false economy and ends up making people's treatment and recovery take longer.
And it's common to have to remind Doctors that just because you have been diagnosed with one condition it doesn't mean every symptom is caused by that and you couldn't have another condition to. Often it's not a case of Fibro or PMR , it's a case of Fibro and PMR , and possibly other issues too.
Take care and my condolences for your sister ,
hi there im 40 diagnosed at 39 had since 35
How are you getting on?
finally have appointment with pain management team tomorrow so hopefully can get on right medication I'm on tramadol and gabapentin at the moment but I'm constantly in pain
Fingers crossed for you lovey Let me know how you get on x
One doctor said I had it three years ago, another doctor pooed pooed that and said it was my age, dear. I didnt accept that and saw another doctor who referred me to physio who diagnosed stenosis of spine, still not getting anywhere and so a senior who said she didnt think it was this and did further tests and said I had fibro, been struggling ever since until a few months ago when on review it was suggested it might be PR put on steroids and hey presto lots better, not fully, have 3 years of damage to repair. But did 11000 steps on Monday result.
Read my response to Smoggi and Blearyeyed and well done with your steps x
ive just found out I've had it since 2014, my GP isn't very good but seen a Rheumatologist for the 1st time since the 90's. I had Juvenile idiopathic arthritis when I was 16. I didnt know anything about it. I'm being checked for Fibromyalgia and other things right now after becoming poorly after having my 5th child prematurely in 2014. I'm just reading about it for the 1st time so if anyone has any information that would be useful.
Thanks Donna
Wrote a long answer but a short one better-started with atypical symptoms- male, 45, presenting with variable, intermittent joint pain, wrist ankle pain inflammation and tendonitis. No shoulder/pelvic girdle pain or clear EM stiffness. Without saying too much, good Drs and physio didn't suspect
Finally made sense at 61! Two months of unable to walk, tendonitis++, feeling yuk. Self diagnosis and off the GP that evening (the days!!)
Markers+ and classic +ve response to pred in 3 days.
Still tapering (managed to get down to 4.5 at one time) and flaring (later flares included "proper should pain and EM stiffness) which is why I'm on here today!
Hi Sorry for the late response I have been out of the country for a couple of weeks What was supposed to be a fab holiday had me felling axious has hell My sister was diagnosed but she she never shows inflammation in her bloods Her doctor refered her to Rheumatology who popped her on Pred with the attitude it sounds like PR if pred works then great if not then we'll have to go down another route The Rheumatologist was very absolute with her attitude I was 49 when i first saw her x
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