Thankful for this site. But cannot understand why when doctors give their diagnosis, that's the limit of info. You have GCA ?PMR. so now we will set you on a course. Although grateful for the help I was given, also have learned MORE by reading these posts. On my 3 consultants, no warning that Pred causes such havoc with the body: thinning skin/thinning hair/multiple changes in body functions/trouble with muscles/etc etc. Had to experience the symptoms and when asking why, "oh yes will be from the medication. It would be nice to have that forewarning. If any doctors read this wonderful forum, perhaps they could keep this in mind. Also, no warning about tapering either. In summation, a diagnosis is not enough: we need to hear of effects as well. Thanks for letting me vent!
What doctors don't tell us: Thankful for this site... - PMRGCAuk
What doctors don't tell us
As I said on the other thread you said this - doctors do generally expect patients to read the patient information leaflets that are included in their medications. There are many adverse effects with many medications - if they spent their time explaining them to every patient they'd be seeing half the number of patients so you would wait even longer to see a doctor.
Yes, you have a great point...patients would have to wait days to get seen. Here in the states the pharmacist is to instruct the patient. I'm an old RN and we used to ask patients who was responsible for their health care....well, it is not the doctor but the patient!
Unfortunately the concept of self-responsibility for anything seems to have died a death ...
When I asked the rheumatologist, who diagnosed the PMR, about the side effects of PMR, he laughed and said there are too many to mention. I then asked him about diet and he said cut out salt. He then said you will be running marathons next week.
Hi jarn.To be honest, I think two things are possibly going on here.
1 - There are many doctors who don't actually seem to know that much about PMR/GCA themselves and so don't actually have the knowledge or information to impart to the patient.
2- There's so much we could be warned about/told about/advised about, but as PMRPro has already said, it would take so long to explain it all that you'd need a good few appointments to get through it all and you'd feel completely overwhelmed by such a lot of information to process all at one time.
I personally feel that the thinking is probably along the lines of, wait till the patient comes with an issue and then deal with that one issue till they come along with the next one.
I've learnt to be as clued up as much as I possibly can about my condition & meds so I can be in control (for the most part anyway) Most of what I've learnt has come from the people on here. You won't find a better place to educate yourself.
🙂
I agree. With the wealth of accurate information available on the internet most patients can do a lot of research themselves, and really we should if we are able. It is research like this which saved me from taking osteoporosis drugs, and also has helped me mitigate most of the side effects I got from pred.
We definitely have to take some responsibility for our own health & well-being and it can only benefit us to be as knowledgeable as we possibly can about our own condition and the medication we take. It would be nice though to sometimes feel that the medical professionals who 'oversee' and monitor us shared more than a passing interest in our treatment and management of that illness. I know some people will be lucky enough to have a supportive medical team around them, but many others struggle with the knowledge that if they're not one step ahead of the game themselves then certain aspects of their illness may get overlooked causing further issues. Thank goodness for this forum.
The trouble is though that PMR is the poor relation and has not really been considered worth their attention because it doesn't kill or cripple like RA and burns out in a couple of years. That is what they have been taught and they haven't met enough people who've had it badly enough or long enough to learn better because it is GPs who see the true side of PMR. Because it is more common in over 70s, this has been a population who believe the doctor and believe that it isn't PMR after all, just "old age" now. After all, wasn't grandma just like this? So they accept it until they die of something else.
Sadly, I know you're right. It's really hard to bring about the changes in attitude required though so I guess we just have to continue being the educators as well as the patients until such a time as more medical professionals begin to truly understand PMR/GCA and all it's complications.
Also things like RA can often be visualized and PMR can't. My mother had RA and was badly crippled from it. She suffered silently from her twenties until her death.
I agree with all you say. I never saw a Dr in 8 months of being diagnosed by one blood test until i paid to see a rheumatologist last week and he answered all my qjestions and really put my mind at rest about all the worrying syptoms i am getting. It really is not good enough. The forum has been my saviour in the past months and i shall refer to them for help when i get lower on the steroids. I am on 9 mgs for a month now so will ask them soon about what to expect as i go lower. I do read all the post so I have some idea as to what i will experience. Good luck.
I go along with all that, Cosmos. When I mentioned this forum as my information source to one of our GP's, she said 'Oh goodness, it's not another mumsnet is it?' The next GP I spoke to (we have many different recruits since Covid) said with a mocking tone, 'I see you're an avid internet user for your main source of medical advice. ' I reckon they have it written in block capitals on the front page of my notes. They might as well say 'This one thinks she knows better than us.' I keep it to myself now.Even if they don't have time to tell us about the side effects of the meds they hand out, they could advise us to do our own reading up of cautionary notes, etc.
I was told by a Rhuemy to look it up on the net 🤣. I did on this forum
And you hit gold dust!
My GP said “I think you have PMR, go home and read about it”!
They are priceless aren't they though - Dr Google is bad until they can't be bothered to tell you something ...
Nailed it! I was reading a recent urgent care note by a Physician Assistant that I had not seen before but was in the same affiliate University Hospital system, and I found I had a diagnosis I had never been told I had! Not go home and read about it— Never received it.Ever! Now, I have to request my medical records and find out who put it in there, what it is based on (is it even a correct dx?) and why wasn’t I told. If it’s correct, what treatment am I supposed to be receiving for it? 🤔😳🙇🏻♀️
D🏃🏽♀️
And it doesn't seem to bother them when we catch them out does it? Sigh ...
Yes you can see/sense their eyes rolling can’t you? I always try and jump in with the fact that the forum is run/moderated by the main PMR/GCA charity in the UK, that the charity mods remove any misleading posts, that people post sensible stuff with links to proper peer reviewed papers and so on and that it’s not something posted on FB by someone’s mad auntie Doris.
I’ve stuck with the GP who told me I’ve educated him with the information I’ve found on here and not the first one I saw who told me I’d be off within a year (I recently came across the notes I’d taken at the time and had to laugh at that bit - I’m pretty sure I was the first PMR patient he’d ever come across as he just kept saying what a good spot it had been by the chiropractor who’d initially suggested the diagnosis) and the other one who told me I didn’t need 2.5 mg tablets as I wouldn’t ever need to go down by less than 1 mg at a time. It’s harder to jump in when it’s a telephone appointment though. I hope I get through PMR before he retires as I dread having to start again with a new GP.
Those really good GP's are hard to find. It's a pity they have to retire at all. Unfortunately for me it's all been telephone appointments since my diagnosis last October, and like you say, you don't have the time to share what you've learned and the efficacy of it.
He let slip one day that he'd taken steroids in the past - he didn't say what for. I think it probably partly explains why he's more relaxed about letting me take my own time than some other GPs.
There's nothing like personal experience, as we've all learned.
I’m incredibly lucky as My GP is brilliant. She’s said several times over the last 18months, that I’ve furthered her knowledge about PMR by quoting comments/info from this site, and she’s passed it on to her other patients. She is supportive of me managing my own levels of pred, and writes me up for regular blood tests to keep us abreast of any inflammation- (which thankfully seems to still be under control as I’m slowly tapering) She only works one day a week though, (at least at my surgery) and she’s understandably very popular as she actually listens !!! … so getting appointments can be a bit challenging sometimes. I’m finding using the apps to book appointments a bit easier than hanging on the phone for ages 😁
~Agree with you strawclutching - think some Dr's don't like you appearing to have medical knowledge.Dr (ward round when in hospital) asked me if I had medical background?
Way she asked slightly sarcastic - just gave wee smile & said I like being my own best advocate + always have had interest in medicine~
It's undermining isn't it? Especially with an audience of nurses and junior doctors too around your bed. I've always had an interest in medicine too.
~Yes it is undermining. Furthermore I'm sent feedback form via email after each admission which I always complete ~
Yes, I was told by my GP over 4 years ago. "You want to be careful with these internet things - they're not the experts". We thank goodness for the "not the experts" is all I can say - they've all been brilliant which is more than I can say for my GP!!
My thoughts exactly!
I'd bet my bottom dollar that you do have more knowledge than they. We know that GPs can't be specialists in everything but what we do expect is respect. They should be glad that there are patients who take some personal responsibility. Where would they be without us 😂😂😂😂.
They should be, but every time I think of speaking up in the presence of a doctor, I'm hearing this quote from the character Harry Wormwood in the film Matilda : "Listen, you little wiseacre: I'm smart, you're dumb; I'm big, you're little; I'm right, you're wrong, and there's nothing you can do about it."
😂😂😂 I'll learn that in French or a language not commonly spoken. If I come across any sarcasm I'll utter it and if asked what it means I'll say, "Look it up on the internet". (Naughty!)
That'll fool 'em!
A bit mean, really. I've had some lovely, caring GPS in the past.
😂😂😂
Hello Jarn, I can recommend Kate Gilbert’s book Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide.
When I had macular holes (eyes) I always found the women surgeons gave me lots more info. Detailed info.
Well said jarn.
I agree, never was any of the awful side affects talked about , yes they are in the leaflet , but i wonder how many of us at the time would realize the terrible struggle it would be to get off them !!
Leaflet?? What leaflet??!!!
I mean the tablet information in the box.
Different places supply info differently. Here all the meds are decanted by pharmacy into small container and labelled for me, including stickers with special notes like "take with food". I don't even know expiry date. First time you get a new med you get a several page printout of info, most of it generic, some of it specific to your med. The pharmacist will take time if it's first time you've had a med to talk to you to make sure you understand dosage instructions and other pertinent info. I think the only advice I was given, at least that I remember, was to make sure I always had pred with food, plus the dr was concerned about bone thinning and suggesting AA. She also, to her credit, told me I'd have a lot of say in how pred was tapered. I had a slight inkling what this would mean. But I didn't know pred wasn't a cure, that PMR was incurable, and at the time thought I'd be done and dusted in three months!
I did run into a little speed bump this past winter when I filled a renewal much sooner than usual. This was questioned by the insurance company and I needed to get a fresh prescription before I would be able to have coverage for more. This was because my usage pattern had changed dramatically. So someone is keeping an eye on my pred intake, but not for my benefit! It also makes me wonder if because PMR is so unique in the way it's dosed maybe it's the main reason medical types in general have so much trouble dealing with us?
Yes I agree , thought I would be better and that would be the end of it ! How little did we know. I just think before you are given steroids a conversation should take place with the Dr about long term side affects , most people are ignorant to its power and complications !
Indeed! With my first Rx for Pred.......there was NO BOOKLET/pamphlet; just instructions of how many & when to take. Being otherwise healthy & never on prescriptions, knew nothing. Dr just said it was PMR and it was an auto immune. End of discussion. Yes, I agree that we are own advocate, but the docs are educated & should pass along the info. Really don't think they would go over their 10minute valuation time and wouldn't be holding up other patients. My opinion only.Not easy to self advocate/educate when you don't understand the cause.
Well said . Also stop telling us it will be over in 2 years. Giving us false hope
Hi. I too was told by a junior rheumatologist that GCA would be gone in less than a year, well in fact he told my husband not me, what a joke.
🤔😂
My OH was with me on first appointment, Rheumatologist said you will be off these awful drugs in 2 years....my OH has said in the last 10 years I`ve been on them, I wonder why you have been on them so long! grrrrr. I have never taken him with me since!....even though I now have a very clued up Rheumy....thank goodness...
I can see that the tapering regime that has been set out for me for PMR (I think it is based standard NHS guidance) aims at 1 year. Does anyone achieve that?
It is said (on the basis of large patient numbers) that 1 in 5 patients with PMR symptoms are able to discontinue pred in a year - but remain at a higher risk of relapse, often within the first 6-8 months post pred which almost certainly means that the disease activity was not gone but just relatively quiescent and the inflammation took a while to build up again.
Thanks for the clarification. I am presuming that I will actually have to persuade them to let me slow down at some point.
My doctor gave me a rapid tapering regimen, but also told me if there was any return of symptoms to stop. She didn't tell me to go up again, and was on vacation when the inevitable happened when I tried to go from 10 to 9 (increase in symptoms over the week of my taper instead of no pain). I consulted the internet, found Patient forum (later found HU) and learned from there to go back to where I was last comfortable and stay there a couple of weeks before trying again. Also learned about slow tapering plans, cleared it with the doctor (although I'd have used DSNS anyway) and have been allowed to taper at my own pace ever since. I did not actually flare at 9 mg because I got good advice from the internet in time! (Subsequent experience has taught me that it is much harder to recover from a real flare than it is from a few days of not quite enough pred and a quick correction.)
I was told 1 year and that it would be easy! This was from a private Rheumatologist, I manage my PMR myself now aided by lots of helpful advice from this forum 🥰
Too add….. Tele consultation 2,weeks ago my GP said ‘I don’t think you have PMR any more’. I half took it in and started a quicker taper to 3.5. I am now back to 4.5. Was I a fool 😜
Yes, like my doctor when I was down in the getting close to 1 mg territory after two years - use up your tablets, stop and see what happens. I tried it, never actually stopped, but the effort to taper too soon to zero landed me back at a higher sustaining dose of closer to 2 than 1 for years, and eventually getting to zero didn't work longer than a couple of weeks, although I could not have tapered any slower. Have now reached the point where if I can be back at 2 again I will be very happy and accept this is my lot in life. Ironically some months earlier that same doctor had told me she was happy with me at 3. She should have stayed happy with me at 1!
Personally I think I was so pleased to get a diagnosis of the disabling pain and stiffness in my body after many months that I was just too pleased to be given the steroids which mostly took it away and wasn’t thinking about the long term issues.
This forum and Kate Gilbert’s book have held my hand throughout the four and a half years and there is much more knowledge and experience and CARE here.
Think that’s the case with most doctors. I was sent for a bone scan three year into taking pred ,then told oh you have osteoporosis. This site is far better than doctors
We were aware very quickly that there was a need to try and educate GPs on both.
Before we closed down the charity we called for applications for research projects. The one we chose is to take place in the North East and Cumbria on training GPs.
The project is on hold, it should have started in January 2020, we all know what happened. But it will go ahead as the National Charity has taken the overseeing of project and it will still take part within the NE and Cumbria.
Quite a few research projects are on hold.
This is interesting news, particularly as I am based in Cumbria. I would very happily talk to any researchers or help out in some way. After a bit of a shaky start, my GP has been extremely supportive. Unfortunately the local rheumatology dept has been less so, which led to my GP suggesting we seek a second opinion out of county - I could have hugged him down the phone! I hope the research projects mentioned start up again soon as it is apparent that most of us have experienced a real lack of understanding, sympathy - and knowledge - from some of our doctors. It seems that PMR isn’t “sexy” enough to deserve proper research funding or better training/awareness amongst medics. In the UK GPs are the ones who generally diagnose and then manage our conditions so let’s hope that this NE & Cumbria project addresses some of that and we get the acknowledgment, treatment and support that we deserve.
But of course suggests it isn't just the GPs who need education about PMR ...
Too true...............but with a little bit of luck, as you well know, from little acorns Oak trees grow, remember we became acorns.
Absolutely.
Where were you referred to out of County?
QE hospital in Gateshead have quite a few patients from Cumbria.
We also had members who came to the support group from Cumbria.
Now on the waiting list for Leeds and crossing everything (fingers, toes, eyes, legs) that I get to see Prof Sarah Mackie.
I did have the option of QE too, and I know that the Rheumy dept there is good.
One of the Rheumy's in the QE works with Sarah on the GP's research stuff when it starts. Without that Rheumy in the QE who rang us to see if he could help to start up the support group when we put up a poster in the hospital it would have taken us longer to get it set up.
If the support group ever starts up again at QE please let me know and I will try and attend.
It was now meeting at St Aidan's church in Framwellgate Moor on the outskirts of Durham. Skinnyjonny is in charge
Currently with Covid it is all on hold. But will be speaking to skinnyjonny next week.
As PMRpro indicates the NE Support Group have been meeting at St. Aidan's Church Hall, Framwellgate Moor, Durham since the beginning of 2019. All information is on PMRGCAuk website and you can contact me via northeast@pmrgca.org.uk
Great stuff!! Thank you.
You are so right! 2 1/2 years ago was diagnosed with PMR and prescribed Prednisolone + attendant medication to offset the effects of such. I started on a dosage of 30mg and having felt like my whole body was seizing up miraculously I felt like Superwoman- oh joy! But wait! Immediately told must taper. At 20mg all symptoms returned. 9 months ago Rheumatology Consultant prescribed Methotrexate + attendant medication etc to be taken alongside Prednisolone. Plan being Methotrexate to take over. I caught Covid in December 2020 which interrupted this plan but I can safely say I feel just as terrible as I did 2 1/2 years ago before I began this medication nightmare. My rheumatologist cannot understand why I still feel so bad! Great! I am now on 10mg Prednisolone and tapering. I am 72 have a full time job and sheer will power gets me up every morning! I'm a stone heavier, half my hair has gone + the waistline and most of my self esteem but no matter how bad I feel I am determined to get off off this medication Merry-go-round. I wish I'd been warned of the side effects of all the pills. Good luck
"Plan being Methotrexate to take over"
Which would be fine if MTX replaced pred in PMR. It doesn't appear to for the majority, even the ones who are able to reduce the pred dose and actually has some adverse effects that make living with it very unpleasant. It made me feel worse than I had at any time in the 5 years I had untreated PMR. Pred may have its problems - but most can be mitigated and it has given me 12 years of a reasonable, above all almost pain-free, life with no identiable downsides. Some of the problems associated with pred were greater with untreated PMR and being on MTX gave me pred-effects I'd never had before - above all an insatiable appetite, I gained a kg in a month ...
Essentially I feel no different after all this medication juggling. Still in pain, stiff, exhausted and have to face it - disabled. But to boot heavier, hardly any hair, shapeless and no prospect of relief as rheumatologist 'quote ' baffled!
It doesn't occur to him he may, just might, be wrong in his approach? Did you ever get back to being relatively pain-free? Did he start you n 30mg? It's a high starting dose for PMR and can obscure the view ...
GP put me on 30mg prednisolone but I was tapering down quickly and as I said when I got to 20mg all symptoms returned. Now on 10mg and in same state as 21/2 years ago. I think PMR crept up on me because I also suffer from osteoarthritis and lived with a level of pain all the time. Rheumatologist is baffled that the level of inflammation revealed by blood tests is almost normal but the pain and stiffness remains. Since catching covid I also suffered Long Covid but as those symptoms mirror PMR difficult to separate 1 issue from anotherI sound like a right moaner!! When actually no one knows (apart from husband and sister) how awful I feel. What's the point in dwelling on it? Just want to get off all these pills that are not alleviating any symptoms at all. Thanks for listening
🙂
Does a higher dose of pred relieve the symptoms?
Only over 20mg I really don't want to be on such a high dosage. I hate taking any medication so being on such an array of pills when they don't work seems stupid! I asked rheumatologist at my last appointment what was the plan if Methotrexate hadn't 'kicked in ' to take over from prednisolone by next appointment? He said let's wait and see. I get that everyone's physiology is unique and maybe I just have to live with it. But OFF pills preferably! Thanks again
I have read all the comments with interest, l had the advantage of knowing the side effects & the benefits of Steroids (Prednisolone & Hydrocortisone) from my time as a Nurse but on a more personal level as my Mother was a Brittle Asthmatic who then developed Adrenal Insufficiency & a Highly Allergic Son who would have died without Steroids.
But ask yourself this - would you have preferred NOT to have taken Pred? wether or not the Side Effects/Benefits were explained to you at length?
Many Drugs are prescribed & taken without anyone ever asking the Doctor the Risks v Benefits? I sat with those 3little tablets in my hand & pondered on the benefit/outcome but the pain l was in & the devastation of my life was so huge l was happy to take them….
I’ve benefitted & suffered the effects of Prednisolone in equal measure & if l had to go back & do it all again l would…..
We Are Responsible for Our Health & for everything we take both Over the Counter Meds & Prescribed Meds.
I’ve taken & still have Methotrexate Injections, when l was first prescribed MTX l signed a Consent Form with all the Side Effects written in Black n White & believe me they are scary but for me there was no choice.
We have to advocate for ourselves, I’m classed as an Expert Patient but believe me l’d rather not be! It is up to each of us to ask questions, back in the day No One would question a Doctor, his word was unquestioned but now we have to be responsible.
Maybe you wouldn’t have taken the Pred if you’d knew then what you know now but could you honestly answer & say you’d rather have just suffered gradually getting worse & possibly losing your sight through untreated GCA developing.
I know what l’d do!…..
MrsN
In my experience you are lucky to get as far as a diagnosis. Perhaps I've been talking to the wrong medics all these years but with me the process is.....I describe symptoms, GP sends me for a test of some description......end. Seems that being sent for a test which positively identifies the problem quite rightly leads on to further investigation or treatment. If the test is negative or inconclusive then problem solved. It makes me angry - medics do not like this to be pointed out to them and have no intention to change. A little more critical and / or scientific ability is what is needed. Perhaps this is omitted in training since critical ability is a result of education and not training.
I totally agree with you. Everybody’s journey is different. I think the thing that is missing is associated counselling me advice about how this is going to affect your life and how to negotiate it. Look at the support cancer sufferers have available. Also advocacy services to help negotiate the health and benefits system which was a nightmare.
I so agree with you Jarn I’ve learned more from this forum than any doctor. When I started my journey nearly two years ago for PMR I didn’t realise how difficult it would be to come of pred and I’m convinced that the medication creates a new set of problems. When mentioning how you’re feeling I find GP’s quite dismissive. Since tapering to 2mg I’ve found my body just isn’t as before , I can’t walk as far & although I make myself do Pilates I do not have the same fitness level as my body is weak I told my doctor I was experiencing extreme stiffness in my feet & ankles .. he said via telephone because of co-vid no examination,! I had arthritis of the ankles. Last week was a revelation I managed to get private Physiotherapy & after examination said I didn’t have arthritis & with exercises & Physiotherapy I should be able to get my fitness level back ! I now have hope for the first time. I feel after reading all your posts something should be done about all of the forgotten people on pred. Thank you all for you support. Art master
Oh my heart goes out to you. Just keep listening to your body in the meantime, do what you are comfortably doing and hoping that with lowering the Pred gradually, you will progress. My biggest complaint was that they gave diagnosis & didn't inform me just what that meant! Okay. I have PMR (later GCA) so what is the reason? Don't feel that patients should have to research etc to find the meaning. I have enjoyed too much good health, so didn't comprehend just what "auto immune" is/was! So many different explanations but this site was an eye opener. I do not mind researching AFTER a comprehensible explanation. Nothing was said about losing muscular retention/thinning skin/etc. Only after asking, "oh yes, that happens". Now, I was put on 100mg Pred initially then down to 60 etc etc. That strong dosage destroyed my entire being and couldn't understand why. Was trying to clean toilet bowl early on, lid fell on my arm and thought I was amputated!! 2 huge tears of which the scars still linger. Then discovered (as many do) that you must NOT apply adhesive bandages, as you tear more. Anyway, wishing good progress to you and keep sharing. Started to feel that it didn't pay to be healthy all my life as learned nothing about shocking medicines!! Hope your summer goes well.Joyce
" I have PMR (later GCA) so what is the reason? "Unfortunately there is no answer to that so you can't really feel aggrieved at the doctors not saying anything about that. I have no skin problems, I do bruise but that is as much due to anticoagulant therapy as anything else. There are as many versions of PMR/GCA and response to pred etc as there are patients - you can't cover that all in one sweep.
p.s. After over a year, am finally able to walk/hike for 45mins a time; still cannot arise from a squat easily but with continued endeavours, pushing forward! The PMR is just not understood as you have found on this wonderful blog; in fact, my GP obviously didn't realize that it also leads to Giant Cel Artritis as I did have all the symptoms. Granted, apparently diffiult to diagnose but as a result, did lose sight in one eye. Could be worse!! Just hanging on and pushing forward
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