This is in response to a question from a rheumy.
Off the top of my head I can think of:
Hand and foot pain of various sorts and swollen hands or feet
PMR only affects body above the waist
There have been a few things that have been mentioned recently - can you remind me here in one place please!
Pain that isn’t bilateral. Lots of us experience worse pain in old arthritic places like knees and neck.
Does Sarah accept unilateral pain may be PMR?
I read a paper the other day that argued it may initially prresent as unilateral. Can't remember where. I need to start a spreadsheet. 😂😂😂
Oh yes - I know there is literature that say it - but it is ignored. Just like hands and feet.
My hands were as painful as my hips, groin and shoulders. I can still only describe it as flu type symptoms in my hands.
Mine was! It all vanished when Rheumy gave me a Pred injection! This convinced him it was PMR despite being unilateral (atypical of course)
Mine was definitely a unilateral initial presentation.
YEs I think mine was too. I couldnt move left shoulder the previous year for no reason and months later my right bicep.
I haven’t specifically asked her but I am having a PET scan soon . In fact I may edit things that I think are due to diagnosed arthritis, like neck and low back pain in particular. Getting out of a car is difficult because it involves everything that is painful and stiff. ie shoulders, hands, groin and knees.
Feeling generally ill ( low level flu, creepy skin) is largely ignored and my most troublesome symptom. My pain levels are from 3-6 out of 10. During a consultation,
I do shade areas of pain on a print of the body that picks it all up.
I agree that feeling generally “not well” isn’t given that much importance, fatigue has been my main problem. Don’t think I’ve been putting it on.
I had bursitis in my left hip for quite some time before the right joined in! I'm sorry I can't remember how long, but weeks, rather than days.
I did/do too.
The belief by professionals that the signs of PMR must come on suddenly? In retrospect my symptoms came on gradually, though fluctuated in severity, over months.
Yes - so did mine. It started with being unable to sleep with my hands above my head - it was probably 5 years (untreated) before I siezed up completely one morning just after a stressful incident.
Me too, pain and stiffness in shoulders, pain in hips but never any stiffness told it was due to lack of exercise, pointed out that I had cycled to the surgery, was ignored. 😩
To be fair it was me that thought lack of exercise (I was at the gym every single day back then!) was making me feel so sluggish I foolishly kept increasing it until I really couldn’t move and was promptly diagnosed at first consultation. Not my finest decision. However I know of two people told their problems were due to being sedatory /depressed -only diagnosed with PMR after several doctor visits.
In my case the PMR symptoms did come on very suddenly. I woke up one morning in April 2017 and couldn't roll over in bed, let alone get out. The pain and stiffness were appalling. My GCA symptoms had started equally suddenly about a month previously when I became aware of this strange headache when trying to sleep.
You weren't already on pred for the GCA then?
No, I wasn't diagnosed with either until 4 months later (not complaining too much - I know that many people wait much longer for a diagnosis) I had already been to the GP about the headache and he said it was because of my neck and I needed physiotherapy.
Brains ! Sorry , Pro , will you be doing a post like this for GCA as well ?
Just in case GCA only people haven't answered.😁
No - it's just PMR I was asked about at present. But you are right - GPs are fairly hopeless at recognising GCA! So, if it comes to that, are some rheumies ...
That’s very worrying, Marijo1951. Especially about the GCA symptoms.
I know. My rheumy was very tightlipped that I wasn't referred to her sooner, though not unprofessional enough to express her annoyance in words. One of my daughters wanted to confront the GP about the fact that he evidently didn't know about GCA, but it would have meant her flying from the US so it was fairly easy to dissuade her! He's retired since then anyway.
Just as well then!!!!
My nursing student daughter had things to say about my care overnight at the hospital. Luckily it was straightened out by the time she drove in. Youth (just 21 and worry) would have had her doing so rather forcefully I expect and the persons available to yell at were not at fault. It was/is hard to raise a dragon but I started thinking there might be an upside to. It too!
Yes really agree with this - which has been well borne out on HU by many of us. It can be 'years' before more major symptoms and then of course calculating the 'average duration' of PMR and or GCA is then a minefield given that many of us aren't quite sure of its 'first' actual appearance ....
That's why we end up talking about time on pred in terms of median.
Age... Ususually too young but someone was told 72/73 too old
Little response to 15mg immediately... Described as a "splendid response" by one review.
Crp/esr in 'normal range"
It's fibro....
You probably have all these but just in case,
Your Ears (rare in PMR)
Myofascial stuff (constant lower back pain)
Leg claudication
Sent you a PM.
Thanks for that my left ear has been a pain for ages...pmr.
There is the age question of course. Sent away because you are 46.
Or even more amazingly recently TOO OLD at 69!
Really young people couldn't handle PMR! : )
I can’t either. ☹️
Wow - that's a new one on me! That's good, I don't have, never have had PMR.☹️ Well of course I haven't, all the pain, discomfort, loss of weight, hereditary proved, is all in my head. Started when I was 72!
Again SJ- it was me googling symptoms and deciding I couldn’t possibly have PMR as I wasn’t over 70. I was arguing with the GP it was a surfeit of yoga and especially “downward facing dog” and he was adamant it was an autoimmune condition that “ladies over 50 get” I feel bad as I avoid him now as he gave me a right telling off for not sticking to his very rapid Pred reduction scheme etc etc x
He should be giving you a wide berth for trying to cause unnecessary suffering.
😂 actually he’s the one you can always get an appointment with on the day, the other GPs have a 6 week waiting time. I do feel a bit bad because he was excellent at diagnosis but is just rude -I’m always smiley and polite-on the surface anyway 😘
We’ve got one like that. We also get medical students doing their GP year, they seem worryingly unhappy. Being good as science does not lead to being a great doctor. One of the students was a ray of sunshine but she is rare.
I do sympathise with GPs not easy job but you have to get some enjoyment/satisfaction. The others at our surgery are lovely though I just keep my head down and keep collecting my prescription. X
Try being more direct with him. We had one like that - actually he was shy!
Hmm I don’t think he’s shy -but I understand what you’re saying x
"ladies over fifty" (what !!??)- I ain't no 'lady' I am a 'woman' !!!
Muscle pain, twitches and atrophy are not acepted as PMR related.
Normal inflammatory markers and age under 50 rule out PMR.
Swollen painful hands and feet (top of them) are accepted.
My onset of PMR was heralded by severe vomiting ( on a long haul flight). This would not have been recognised as PMR but it was my first symptom, never been right since.
That is seen in GCA ...
Gosh, never knew that .
But again , not always recognised on the ground as a GCA symptom , nausea before the onset of head , neck and jaw pain.
Nobody ever told me that and I have described this many times to medics.
I remember Celtic was nauseated during her PMR period pre-GCA when she was bedbound for many months and taken to appointments by ambo. It turned into GCA but she was lucky and it was caught in time. Then she went to Rod Hughes and the rest is history as they say!
I just googled "nausea as a symptom of GCA" and on the first page alone there are 6 anecdotal case reports of GCA presenting with nausea. Wonder if there is any mention in the "ears" study - ears and vertigo/nausea fit together,
This is very interesting and scary. I had nausea for about 4 or 5 yearz that they put down to my neck issues. I also had a numb nose and chin.
Ears before anything , causing not the later severe head pain but that headache that causes nausea and dull aching in the teeth , followed by vomiting if you didn't just submit and go to sleep.
And Fatigue and Brain Fog , memory lapses and absences when I just space out and stop mid sentence or Action had grown more well before the eye problems and severe head pain set in.
To be fair - although ears used to get a mention, it is only recently they did the study to show it is so...
Probably because for many years people have been in and out to the GP with earache , nausea or unilateral gnawing pain and been told it's nothing , and that feature didn't get mentioned up the line , to the point that they realised it was worth researching.
The GP malfunction in passing on communication goes both ways , Specialists can have no idea for years of the side symptoms of Illnesses because Patients only get referred on by the time their symptoms have progressed into the more obvious and don't mention what they felt when problems began .
And GPs don't think about letting Specialists and researchers know early patterns they have noticed in their Patients for one reason or another.
No there is not, no-one has ever mentioned nausea to me. Come to think of it both dizziness and falling down unexpectedly, (which happened to me) and then finding out that I had lost 25% of hearing in the left earand the reason why many years later. Bit complicated to describe it on here..............outcome GCA (no PMR).
Whilst I have been typing this, it comes to mind that I was told by many researchers that PMR impairs the oxygen supply to muscles. Muscles are everywhere, including little ones on every hair follicle, so to my mind, it must affect muscles in hands, feet, fingers et al.
I suspect that Sarah is looking for it or some other large cell Vasculitis in me.
My former rheumy insisted that PMR doesn’t impact the knees (despite my ortho surgeon saying knees can be involved with PMR). Indeed this was my first symptom which came on overnight.
Also my shoulder pain, which came about 4 months later, at first was not bilateral. This threw off my GP which delayed my PMR diagnosis.
I was cold all the time & my skin was very sensitive, l had to wear vest type tops but turn them inside out as l couldn’t bare seams against my skin. I had to wear multiple layers & tuck myself in, I couldn’t bear label against my skin either.
My face was perpetually cold with a feeling of Pins n Needles, & similar in my neck but more ‘icy cold’
This was on top of the bilateral stiffness, inability to get up or down stairs, in or out of a chair.
Noise, l couldn’t stand the sound of a Vacuum Cleaner or the Radio. My irritability levels were off the scale. I didn’t realise until later that l’d lost a lot of weight & frankly looked awful......
My thighs & tops of my arms felt like they were burning as well as so very painful.
Interesting - I had cold patches too.
Noise has been a factor in both fibro and pmr.
Now I know I don't have fibro - but I am very noise sensitive still ...
I think it got much worse with pmr. If I am in a noisy room my brain is hyperstimulated. My brother always wants music on, the kids playing dogs messing about and people shouting over it all. I have to get out of the house when everyone there. My brother never realised how close to death he was in year 1.
You are spot on the GCA/ PMR and Fibro constantly seem to try and sock each other in the face and injure each other when the symptoms aren't under control.
And Pain in general can make everyone more sensitive to sound , smells and touch and cause that Nausea even if you don't have Fibro.
Fibro is to Pain Sensitivity , like the Migraine is on the scale of headaches.
I don't HAVE any pain - but I'm still sensitive to sound.
Yes , but you have the other great hater of sound , smells , bright light and it being too peopley outside , the Kangaroo heart possibilities of tachycardia.
Anything that sends that thing soaring you get more sensitive to by the hour , especially if you have had a long day.
That's a good analogy 👍
And burning thighs very bad. They started again with this flare. I used to walk in a t shirt at 12 degrees... Now I have hats, scarves and gloves.
Yes! Yes ! Yes!
I’d forgotten about seams and labels actually hurting my skin. I couldn’t bear a wired bra or do it up. I moved to one piece lace bralettes, I can’t give them up.
Wearing socks inside out re seams again.
We are the Princess and the Pea, obviously.
Always
If you lower at 1mg per month and you get pain!...it`s NOT PMR.....
😂😂😂😂
I wish that was true, did your doctor tell you this?
It was the second Rheumy I saw...he said firstly PMR doesn't last as long as I had it (at the time 18 months ago it was 5/half years, still have it, 7 years later!)..so he said I will do with you as if you are a new patient with PMR...great I thought. He handed me a sheet on how to lower....I was on 10mg at the time, it was...drop 1mg every month to 5mg....then 1mg every 6 weeks. I got to 7.5mg....couldn`t get out of the chair for pain. Went to him, he said then it can`t be PMR, my patients do it fine with no pain....I am never rendered speechless...but,.....so I said what is I have then...no idea, just take paracetamol!....he said if you were my mother I would be treating her this way, he must have seen the look on my face, because I was thinking....if you were my son I would......can`t print it here!....I have never been back, I now deal with my GP. I am struggling at the moment with un believable tired ness, I feel as though I am sleepwalking!....I`m at 7.5mg....how ever desperate I feel, I wouldn`t return to him!
Sorry for the long reply, and hope you find some answers soon....
Oh dear that does sound difficult. I am going for a PET CT scan next week. My Rheumatologist wants to ensure that I haven’t got GCA or other large cell Vasculitis. I may just be experiencing a flare. ( 4 years, 4 mgs). I am totally exhausted too. I asked my OH to dry my hair for me this morning, I practically fell asleep. He is no loss to the hairdressing world. 😌
Have you had a Synacthen Test for your Adrenal function? If not, I think it would be wise.
I travel to another town for my Rheumatologist ( she was recommended by PMRPro). My first one was not great.
I hope you find some answers, and I wish I had your thorough Rheumatologist....it makes all the difference to how we feel if someone just listens....and does some tests!
I asked my GP about the test, she said they won`t do it until you are 5mg...I`m not sure if this is correct or not...what mg were you at when you had yours done? I just can`t imagine feeling this tired till I get to 5mg, I have to lower really slowly for my body to adjust. I have always been extremely sensitive to any meds..., it`s like I can`t wake up....difficult to explain to those not going through it, as I`m sure you will agree....
Excuse me if I have already said but felt so bad 2 weeks ago that I went to my GP, had blood tests for all sorts.... came back satisfactory, she said at the time that I was on too high a dose for cortisol to be tested, and so it goes on....don`t know where to go from here, but not back to last Rheumy I know!
Lucky you with hairdresser!...my OH half would say it looks ok to me!....
There isn't a lot of point doing it above 5mg, it will just give a skewed result. 5mg should be enough to function but we know it isn't always. But it is also enough to suppress the adrenal gland's production of cortisol.
I was at 6 mgs and I think that’s why I failed it. I passed it at 5 mgs. I honestly think that for us unlucky ones this swooning fatigue just goes hand in hand with our autoimmune disease. A routine helps with a regular swoon time nap, mine is usually 3 pm and early to bed ( around 10) and a walk outside,oddly. For me a FaceTime call from my little grandson wakes me up - he’s an energy enhancer.
Let’s hope the awful phase passes soon. Others have.
I wake up as if I haven't slept or at all........
After lunch is slightly worse....but I feel like I'm walking about in a trance all the time.....I am in bed by 9 .30 usually....
I have two teenage grandchildren...... they wouldn't "get it" even if I told them I feel worse than usual........never mind, they are distraction anyway......college/boyfriends etc.....
keep us posted how your tests go.....
Yes, surely it must lift soon....
Theo is only 5 and still at the age of complete delight.
How long has your deathly fatigue been going on for?
I can’t really remember but I think there were two phases of it. Stress makes it worse I think, distraction can make it better. I can live off a little change like the theatre, for ages.
I just woke one morning about 4 weeks ago....it came with balance and blurred vision too...no warning
Did you up the pre d for a few days to see if it would change anything?.......though with no more pain I suppose there would be no point would there.....
Don't think I could hold my head up long enough for the theatre!!😕
I never think I can and then I do. There were times in the past when getting ready was too much.
I would report that episode to the doctor though. This can be a strange disease and it does trail other conditions sometimes.
You know, never forget that having PMR and being on pred doesn't excuse us from having other things!
Yes I know.....I think that is why my doctor did blood tests, but which ones I don`t know....I know it was VitD/B12 thyroid, possibly the diabetes test, but just don`t know what to ask for next....I am now going to make an appointment on line, which will be in about 10 days time....she does tend to blame a lot on pred, to which I reply, it keeps me on my feet (usually!) I thought at first my symptoms were familiar to others on here with adrenal problems......but can`t get the answer to that....
I suppose I should ask to go back to see another Rheumy but I just don`t have a any trust in them....
Thank you....
Slightly off piste, but a rheumie informed me if I were taking pred I had zero percent chance of getting GCA!
That PMR can't exist side by side with other autoimmune conditions that can have similar symptoms.
My rheumatologist, who is in a US research hospital, has doubts after almost 2 years that it is PMR that both causes ALL the classic PMR symptoms that I have AND responds quickly to prednisone, because I have a history of other ai diseases that can cause similar symptoms. I know it is true that other causes should be eliminated, but he doggedly insists on the principle of you can't have that kind of overlap.
Well he is rather wrong. And in research or not - he wouldn't be my doctor if he wouldn't treat ME and not his imagination.
Autoimmune disorders are a special thing - but having one a/i disorder means you are more likely to develop another. In some cases this leads to a unique disorder: Joaclp disorder. All that needs to be done really is identify which drugs work best for YOUR set of symptoms.
Please doctor - you may be very clever and do "research" but that doesn't mean you don't treat the patient in front of you as best you can to relieve their symptoms. a/i disease can;t be cured - it is up to you to manage the problem in the best way possible. Not to wait for a drug to be developed that fits this disease - it may never happen.
I simplified matters a bit to extract the point. I have a problemmatic relationship to pred and some other serious a/i issues. He is trying to tailor my treatment to this complexity. He is a kind doctor and head honcho in this rheumatology community. I owe you more of an explanation but, just getting over flu, do not have the energy to write in more detail. Wondered though if others encounter this sort of either/or. Thanks, PMRpro. 😊
I read an article a long time ago ( sorry can't remember where it was ) when a Indian Lady was told she couldn't have GCA because of her Ethinicity.
I also got told , in the past, that I couldn't get Behcets if I was white or female.
And spent over a year of agony with my gall bladder because it couldn't be that, I didn't fit into the Five ' F's ' rule!!!
Even last night in the GPs waiting room , ironically, a retired female GP , whom had sat for ten minutes moaning about the number of misdiagnosis she had overturned over the years as a Locum because of the narrow minded views in Practices , then went on , matter of factly , to state to me that I couldnt have EDS or I must be a one off as Ehlers Danlos is a Male Disease!!!!
And it's not just the Ladies that get knocked back , just listen to some of the tragic tales from Men with Breast Cancer , if it's not common for men or isn't disease typical they get the same treatment too.
The doctors , even ones whom know mistakes are made , are constantly blinded by Age , Build , Ethinicity and Gender , and the top five common symptoms on a Disease list, not just with PMR / GCA , but every illness that has had a pattern written about it at the beginning of discoveries into these Diseases.
That's the big issue , they read one summary or article way back when , read NiCE or Insurance prescribing guidelines then never bother to read up anything again.
I understand , they are busy , but if there is a possibility of a Disease in a Patient the least they could do is quickly read a more recent disease summary before they arrogantly dismiss it and kick you out if the door.
Notice the two and a half day Medical Appointment Marathon Fatigue anyone?!!😋😂😂😂
Um - I wouldn't mind so much but all the people I know with ED are female. So where did that come from?
I did point out that there are 13 sub groups of EDS , and as far as I know only one of those is more dominantly Male , her eyes widened in shock.
But , it does prove a point , how can you just state something without double checking the real facts , you can't rely on a BMJ article you read back in 1996!!!
I read that about the Indian woman too.
I find appointments absolutely exhausting. I have just had a 5 week period of scan and other diagnostic appt, pip assessment, Dr's twice and physio, bloods, even the dog has been to the vets and something else that has slipped my mind. Oh, eye screening next week. It completely drains you having to fight your corner. I am surprised you haven't 😜😱🤯 completely. And how ironic the retired doctor reinforced the stereotype.
Hope you resolution and treatment that helps without 72 appointments or something. 😘😁🌻
With preparing for trips and uncomfortable sleep while being monitored it feels like I've been under constant observation ( and interrogation) for the last 72 hours !
We are as bad as each other for having so many different Departments to visit , I think we should be coming up to getting our Long Service Medal to the NHS soon shouldn't we?!😋😂😂😂
The incidence of PMR and GCA in Asian and Afro populations is very very low compared to Caucasians. But it is always likely there is a bit of Scandinavian influence somewhere in their forefathers ...
There was also the data about the Native Americans that had large number of pmr/gca too. I can't quite remember where it was written.
It is those vikings again, they got to USA long before anyone else. They crossed over the Mavis Grind in Shetland.
And that's the point isn't it , just because it's uncommon doesn't mean it doesn't happen.
No matter how many times you are told if you hear the sound of hooves you should see horses not zebras , if it looks like a zebra and acts like a zebra , just accept it's a zebra and treat it accordingly.
Yup
EDS has been brought up for me by a cranial sacral therapist and a physical therapist. I've avoided bringing it up to the rheumatologist as I didn't want to muddy the waters or seem like a hypochondriac and mine (if I have it) would be just hypermobility - not much in terms of treatment except strengthing which I'm doing anyway. When issues hit this summer and the search for answers started I finally said something but he was just interested in ruling out autoimmune connective tissues disorders which he did except Sjogrens for which I have no symptoms!
No such thing as just Hypermobility EDS , and , if you have your PMR and Fibro diagnosis it is good for them to know if this could be a part of the original of your problem as it helps them adapt your treatment to what you really need and can make a difference in what you can and can't do .
Thank you - I'm happy to say no fibromyalgia for me, "just" PMR and a now closed heart pfo. I'll do some more questioning about EDS. Who actually diagnoses it and how?
Send me a personal message about it and I will give you more information.
It can be a bit complicated , although technically your GP can do it , but most haven't read the information and won't so it can slow things down , but it's worth getting it sorted and on your records because it can give them more understanding of why you get certain internal issues , and if you have it there are certain precautions that they should take with medications , dental work and surgeries to improve your recovery rates.
Message me x
The first thing rheumies said to me was they travel in at least pairs.
Mine started with pain in my thighs; it felt like really bad lactic acid that wouldn't go away. I went to my GP when I had to use my hands to lift my leg over a stile; she eventually sent me to a Rheumotologist who sent me for lots of tests including an mRI which showed bursitis in both hips, but didn't explain the shoulder, neck & arm pain which had appeared over the next 10 months. I couldn't turn over in bed, had problems getting up from chairs & toilet & was sleeping sitting up as otherwise it was taking 20 mins to get out of bed. PMR was diagnosed by a different GP when I got GCA symptoms. The Rheumotologist said he was going to study my case as it wasn't the usual PMR path ( but I don't think it's that unusual having read posts on this site). My CRP & ESR were tested a couple of times, once by GP & once by Rheumatolgist & both times only slightly raised & I think this may have been why he didn't think of PMR. CRP was 68 & ESR 96 when I finally got the GCA & PMR diagnosis.
I AM left wonder what he didn't think was "the usual PMR path"!
I think because I initially saw him when I just had pain in my thighs & inflammation markers weren't raised. To be fair, I didn't go back to him when I couldn' t turn over in bed as had refused the steroid injections he offered for the bursitis as it didn't explain the shoulder, arm & neck pain. It wasn't until I got onto this site that I realised he should have been able to diagnose it. I have refused to go back to him.
Thought my ‘morning swollen hands’ were due to Crochet & osteoarthritis...but now my Pred is settled at a higher level I haven’t gad the morning swollen hands...just realised this when you posted! Lots of issues with big toe joint, but that’s osteoarthritis, & cannot be injected right now, but he will consider it when Pred reduced. Just upping my Pred by 1mg has stopped the ‘flu aches & pains, really felt like I had ‘the real thing’!
My GP told me when I was diagnosed that once I was on predisone I would be good as new. Oh that it was so simple. Also that I couldn't hurt myself exercising. I hurt myself all the time, doing the slightest thing in early days. I started out with thigh pain and stiffness. Felt terribly irritable and fuzzy. Couldn't stand noise and confusion. My brain doesn't work like it used to. After almost 4 years I think the pain moves around. Hands, tailbone, pelvic girdle. It's affected my whole life. I would now say I live at about 70 %. Taking meds didn't make me like new but thank God I'm better. And Drs don't really teach you how to live on steroids but I've learned it here. Thanks to you all.
I got the "on prednisone you'll feel like you did before PMR" . Also didn't hear about myofacial issues or periformis trouble until I found this site. Exercise induced achiness that gets worse instead of fading is another although that was solved by CoQ10. A few years before PMR symptoms I had poison ivy that went systemic and needed a prednisone burst to calm and I had a migraine medication side effect that continued on when I was supposed to adjust. I think my body just doesn't know when enough is enough.
I'm so glad you brought this up! For me it's been hands and feet swollen at different times, pain that isn't bilateral and painful knees. I have no other health issues as far as my doctors are concerned but they cannot give me a reason for my swollen hands and feet. I just don't know which doctor can give me an answer...
RS3PE would be the first thing to cross my mind - although that SHOULD respond to moderate dose pred. However, it was a long time before I realised the new shoes I had had to get were now far too big and I could go back to the older stuff.
The knees bit was mentioned recently in a post too.
PMRpro, thank you so much for that information. It certainly is something to look at. Here are the issues that make my doctor say that I have an "unusual kind of PMR". Isn't that nice, I'm so special 
:). The pain and swelling in my feet and hands are not symmetrical nor all at the same time while nothing else hurts. As soon as one wrist feels better, from a cortisone shot, the other one starts to hurt. I only got 1 Cortisone shot in my right wrist, I will not overdo it, I know that's not good. ESR, CRP have been normal since Jan 1st so she considers me "cured". She did raise my Pred to 5 mg, because she was afraid I'd have an adrenal crisis, even, though I had no such symptoms. The increase in Pred did not help with the pain and swelling. NSAID did, even though I know I shouldn't take them, but since I've been given no other remedy... I also figured out that my feet swell and hurt, one at a time, after taking walks on uneven ground. The only thing I can think of now is maybe my ankles aren't strong enough after 3 years of PMR and limited mobility. I do have a question for you. PMR is an autoimmune disorder and it burns out eventually, does that mean that the autoimmune goes away? I was under the impression that autoimmune disorders don't go away, we can only maintain them.
I think the use of the word "cured" in association with any autoimmune disorder should be banned! Especially when they use it on the basis of something being "normal" while on medication! That is drug-induced remission. Except it isn't really as the medication is often only managing the symptoms rather than doing anything to the disease process itself. Of course the markers are normal when you are on pred - that is why you are taking it: to combat the inflammation that is what creates the proteins that are measured directly as CRP and indirectly as ESR!
Some a/i disorders do burn out and go into remission - PMR and GCA are quite likely to for a large proportion of patients. But the predisposition for the immune system to go haywire remains and something MAY reactivate it at some later point. There are forms of inflammatory arthritis that appear at relatively young ages and then disappear for many years before reappearing. And sometimes you develop something different later.
I am the local Organiser of the Whitstable PMRGCA Support Group, in a question and answer meeting, I asked” what do you think triggered your PMR ?” And the majority of those present said “ a dramatic event in their life”, mine was the death of my wife, others said similar reasons, and all had tapered down on their Pred, but we all had discomfort in our shoulders and neck.
I really am surprised when this comes up. I had no stress, no accidents, no dramatic event, but 6 weeks before my 72 birthday I was diagnosed with PMR (as most of us I had never heard of it and asked my doctor to repeat it 3 times before I could grasp it).😂 I laughed! I didn't laugh long though - still have it 8 years later.😬
Do we get annual reviews as PMR patients?
~What immunity have we with a reduced steroid intake for our PMR? ~
What resources do GPs have for PMR?
What Grandchildren can do for PMR/GCA
