I went private to see a consultant rheumatologist last Thursday evening as I was told by my local hospital I probably wouldn’t get to see anyone till November, the first thing out of her mouth apart from hello after handing her the referral were you don’t have PMR your far too young {49} people your age don’t get it she repeated this throughout the whole 40 minutes while taking my medical history.
She believes I have RA as there is a strong family history of it on my mums side great grandma grandma mum and 28 yr old niece so she has done the RA blood test and I go back to see her this Thursday evening again.
My question is she has told me to come off the steroids from today as she needs to see what my joints are like, I have been on them since the 6th July this year 15mg is this ok to do? I’m sure it must be but just wanted to know your thoughts about this.
Thanks Angie
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No this is not okay to do. You have been on the steroids for over a month so you must taper. I think if it had only been a couple or even three weeks it might have been all right but I think it would be risky now. That said, you may be able to taper quite quickly. I'm sure the experts will know.
Thank you HeronNS I’m dreading not taking it to be honest and she just wouldn’t entertain the idea of me having PMR just kept saying no one your age gets it and when I said I have heard of people in there late twenties who have it she just laughed at me 😐
Well you and I know she's wrong about the age at which PMR/GCA can strike, but I suppose it's possible she's right about the alternative diagnosis. It is just as well to make sure, and this is why some GPs don't want to prescribe pred before the specialist has been consulted as it muddies the diagnostic waters. Acute GCA symptoms being the exception of course because of the threat to eyesight.
I tried to find some info about how to taper after a relatively short time of taking the pred, as opposed to those of us who have been on for years, and those who've just taken a short spurt for an acute condition, but didn't find anything yet.
After she had taken my history she said if I was 59 or 69 and sitting in front of her she would have said yes you have PMR as I have described all the pain associated with PMR not being able to turn over move my legs or arms and so on.
As HeronNS says, depends how long you’ve been on steroids. As you’ve been on longer than 3 weeks, then your own adrenal glands will have stopped working and need time to kick back in.
As she told you to finish then I assume she’s aware of how long you’ve been on steroids, and did she offer any help? It won’t be very nice, and I think you need to clarify with her that she’s aware of that!
Yes I told her how long I had been on them, to be fair to her she said that if I am in too much pain then to call her office and leave a message she will call me back and get me to take pictures of joints, I’m wondering if I should take maybe 5mg and see what happens?
No she said I could take them over the weekend and not take any this morning but I had to as I’m on return to work after 4 months off from having cervical spine surgery with fusion and didn’t want to be in pain while at work then trying to get home on the train. I’m due to take my next lot at 6pm as I have found splitting the dose has been better for me. My boss has let me have the rest of the week off! I’m thinking take 5mg instead of the 10
I think you need to taper down Angie. Perhaps 2.5 until 10 mgs and then 1 mg after 10 mg. A month is still long enough to have become dependent and for your own Adrenals to stop working. You could try a week for each drop, checking how you are before carrying on.
She has specialists who would disagree about your age being a massive factor. Though your family history is a big sign post. Am I correct in thinking that there is a definitive diagnostic test for RA unlike PMR? Stick with us as long as you like. I for one would be interested in how you get on.
Yes I have taken 5mg at 6pm as I took 10 this morning.
I had the RA blood test on Thursday after I saw the rheumatologist so should know Thursday if it is RA or not but I do know that the blood test doesn’t always come back positive so who knows.
I know she just wouldn’t entertain the idea at all and said if I was 59 or 69 then I have all classic symptoms and have described the pain to a T but still wouldn’t budge 😐
Do not miss your appointment. It's expensive so just sit and there and listen and see what the consultant has to say (they do like the sound of their own voices) and then say your piece and ask the questions (you will have them written down of course)
Yes there is a test for RA plus some of the other Auto Immune’s, l had a boatload done last week but some of them take a while to come back, so it’ll be interesting to see if anything else shows up!
Tell her no thanks, but that you'll be happy to have her arrange for xrays to examine your joints.
Really, she's not going to see anything just by looking at your joints unless you're well along in RA, which just isn't possible given the time frame.
Well, the best of luck to you! We all know 49 is not too young to have PMR, but I guess they are basing it on many other factors. I wish you the very best of luck in treating whatever it is!
Hi. I've just looked at the NICE prescribing recommendations for tapering in your situation. They say reduce by 2.5mg every 3 -4 days until you reach 7.5mg. From there reduce by 2.5mg every week or two weeks until zero. You should familiarise yourself with adrenal insufficiency symptoms which are fatigue, nausea, abdominal pain, headache,joint pain, dizziness and fever. If your Rheumy doesn't agree with this tell her it's NICE's protocol.!
I wasn’t happy about coming off them altogether as I’ve been on them for 5 weeks so after reading reply’s from my post I took 5mg last night and 5 this morning but already both hands and arms are hurting struggled to put a cardigan on left knee is hurting and I’m limping again ☹️
Perhaps I should have a sign that says Tapering, round my neck. I think it was the RA test at this stage that confused me. I have one eye on Sky News about the incident outside Parliament and the Italian bridge collapse.
Sounds like a plan! I’m at the new house, the furniture arrives tomorrow! But we’ve brought the things we unpacked at the rental house so I’m sorting them out, well l was until l felt overwhelmingly tired, so have sent Terry to buy Chocolate on his way back from the Skip & I’m having five minutes in the deck chair in the Conservatory!
Saw the headlines on my phone but no WiFi so can only get the headlines on 4G on Twitter!
Haha you two made me laugh. Thanks I needed it! One of you sends Terry out for chocolate the other one craves Terry’s chocolate orange. That’s so funny. In Australia I miss English sweeties so much!!!
I know, but your ice creams are nice. I am coming out for Easter. I wish I could smuggle Easter eggs for my grandchildren but I’d probably be arrested, and deported.
As long as you declare them they just might let them in....but might not be in one piece on arrival! Plus too bulky to carry in hand luggage. I'd take the small Cadbury's cream eggs, they'll love them - just jealous you're going! How long will you stay for?
Haha yes you might be. Australia is fiercely defending it’s wildlife and fauna from overseas pests and customs are scary guys indeed! Your chocolate is the best. I feel tempted to ask for an Easter egg myself! Where abouts in Aus are you coming? I am in Melbourne. How on earth do you cope with that ghastly journey!!! Linda xxxxx
Coffs Harbour is my nearest airport to Sawtell where my middle daughter is. My eldest lives in North Boambee Valley in quite a rural spread. She keeps chooks and peacocks.
Jane please forgive me if I drive you mad by getting muddled and forget what you tell me. It’s really hard cognitively at the moment. So you live in the uk and your two adult children live here in Aus? Is that right? That is very hard for you xx. I think to have chooks and peacocks is like a wonderful dream come true xxxxx
You’ve got it right! Two daughters and they have 2 children each, 3 boys and one girl. My second daughter is supposed to be having time with her sister before her children are school age and then to come back. Her husband is working as a GP in Australia. He is doing very well, he goes surfing before work every morning. I fear I’ve lost them. My eldest with the peacocks has really worked to make her dreams come true. She is a child and family therapist, with more work than she can handle. I still have my youngest son at home. It is really hard. I cared for my almost 4, year old grandson from babyhood - we miss each other viscerally.
I am having a tearful moment. I feel acutely for your experience. It’s horrible. I understand how and why these things happen and I judge no one. But how desperately unfair it is when two people who love each other so much are torn apart. The pain is dreadful. I won’t say more. Just know I care A LOT XXXX
We go business class with Korean Air - substantially cheaper than Etiad or Singapore or Emerites or Quantas and just as comfortable. They put you up in an amazing hotel half way in Korea.
PMR came on, on one of their planes ( complete with throwing up) they were so kind to me, I feel loyal to them.
Jane that’s wonderful. I would feel loyal too. It’s a dread of mine, a phobia really, yo be taken acutely ill while flying. Before My mum came out here to live with my step dad as a self funded retiree we went back to the uk every couple of years. As my heals deteriorated it got more and more stressful. I knit couldn’t do it now. Business class will be the thothat allows you to do it and I am very happy for you xxxxx
There's usually a 'British' shop but the prices are unbelievable, $3 for one packet of Quavers, my granddaughter's favourites, under £2 for a bag of 12 here! Same with chocolate $30 for a tin of Celebrations! £5 here! BUT you have other advantages I could name like the weather....where are you in Oz?
Do you really think I’d get away with creme eggs? I know the prices are ridiculous for British things.
We will be staying in Sawtell about 8 hours from Sydney along the East Coast. Beautiful place. We have a house, just where the river meets the sea. The views are amazing. We may go somewhere child orientated during the schoolies.
Not for one minute did I think that but just a small treat on arrival as they taste much nicer than Ozzie choc, which is yuk to put it mildly, and if you're like me you'll still buy out there!
Sounds amazing where you are going, I don't know Sawtell, will you be driving there or flying - I'm trying to gauge how far up you'll be going that's all. No 2 son lives on the Sunshine Coast just inland at Sippy Downs. an outer suburb of Brisbane.
Anyway enough of that where ever you'll be I am jealous!
Flying. It’s like taking the train isn’t it? About 90 minutes from Sydney, very laid back security etc. They let my grandchildren stand sobbing at the window at Coffs Harbour . I wish they hadn’t. 😢
Telian you have a son on the Sunshine Coast? Leon and I just had four days in Brisbane. I only ended up in Emergency once lol. It’s so beautiful there. So hate in the UK? Sorry I get muddled so easily at the moment xxxxx
Oh Jane!!!! How utterly idyllic. I am delighted for you that you have a house in such a beautiful place. The flight from the uk is brutal isn’t it. Do you cope? I think yycan easily get English crepe eggs now so please relax haha xxxx
Hi Telian I am in Melbourne. I have been able to buy a few English sweets oh the bliss of walnut whips and fry’s peppermint cream!!!! I badly want to buy English weetabix but it’s $8 which is three times the cost of Aussie weetbix. The Aussie one is revolting in comparison though. No taste. Also I can now buy Alpen but it’s too late as my low carb diet means alpen is too high in sugar. Where do you live? Xxxx
Nice climate in Melbourne, more bearable for us Brits... It is worth a treat now and again even though they're costly, you couldn't force feed me Oz chocolate. Haven't had Fry's peppermint cream for ever, don't seem to see it now, must have sent them all to Oz! Diet eh! we can't win. I live in Essex. Hope you're feeling okay? xx
Everyone should be entitled to a second opinion. iIf your gut instinct is to have doubts about her conclusion on the basis of your age, is it worth setting up the appointment in November with the NHS consultant? Have you enquired about different hospitals, which may have shorter waiting lists? Good luck.
The first GP he saw was absolutely adamant that I did not not have PMR as I was the wrong sex and he had never heard of happening to a male in my age group. (62) He ordered a blood test just to "show you that you don't have it" Well of course when the tests came back it gave all the indicators of PMR and after a few days on Steroids that pretty much confirmed it. I have PMR. It seems to be very misunderstood by many GPs. They don't know everything. Hope you get it sorted soon.
As about a third of PMR patients are male that was extremely ignorant of your doctor! It's just as well your inflammation showed up on the blood tests, though. I wonder what he'd have put you through if they weren't raised, as they aren't in about 20% of cases. Hope you are doing well?
HI, Thanks for the reply. I agree it was very ignorant of the doctor. I didn't see that doctor for a while after that incident. I saw another who was in the RAF and doing his training at the practice I went to. He was also surprised as well but as he was used to dealing with fit and healthy service personnel with trauma injuries. I can understand him not being familiar with it. We learned about it together after my first visit. He has now left and i'm back to the first doctor again. I really want to reduce the steroids as the side effects they are giving me are almost as bad as the original condition. I have another blood test on Friday so should know more after that. Thanks again for your reply.
I was 49 when diagnosed with PMR -although I had symptoms approx 18 before this, which I put down to the onset of the menopause. However It wasn't the menopause. I was referred to a rheumy who diagnosed PMR even though my levels and readings weren't elevated. The Prednisolone worked almost immediately, which helped him reach his diagnosis. He said I was atypical as PMR does usually affect over 50s, but not always. He said the youngest person he had come accross with PMR was 18!
I'm pretty sure our bodies don't think 'Right, you're over 50 now, you are eligible for PMR'. It happens when it happens and each person is different.
I don’t know what to think anymore will see what happens on Thursday when I go back to her for the results of RA blood test and other ones she has taken, I’m 50 next January.
Well when I told her that I took the steroids at 4pm on the Friday afternoon and by 6/7 pm that night I was feeling better she said they don’t work that quickly which got my back up and I told her in no uncertain terms that that night I slept for the first time in about 6 weeks and was able to get up in the night and get off the sofa without any problems and go to the toilet.
I wouldn’t mind but she specialises in PMR according to her profile so thought she would be a bit more open minded.
God preserve us from confidence over competence, it just becomes arrogance. Selectively memorising some statistics does not make you a PMR specialist. You need to be careful of your own health.
They worked that quickly for me!!! I will never forget how much pain I was in. The 1st physician would not prescribe the prednisone. When the 2nd physician did prescribe it, within 2 hours I could walk up the stairs without slowly dragging myself using the banister.
Given your family history, it is probably good that you are getting tested for RA. But some of the other things your physician said sound very strange.
You mentioned having surgery recently. For some folks, surgery can be an initial trigger for PMR.
I’m shaking my head at your doc’s comments. The prednisone worked in 6 hours for me. Such relief after so much pain. A rapid response to steroids was one of the indicators my rheum doc was looking for when confirming PMR.
I hope you get a definitive answer when you go back on Thursday. It's a shame when the supposed specialist is not open minded. It might be worth seeking a second opinion. My symptoms sound similar to yours. I couldn't turn over in bed, put socks, get up from the sofa or in and out of the car, or wipe my bum (sorry t.m.i) The pred gave me a new lease of life. Good luck for Thursday.
I don’t think they do, and I’m back to that today having difficulty and I’ve only dropped 5mg just to see what I would be like! hands arms and knees hurting and I’m limping again ☹️ so god knows what I would be like if I just stopped taking it, my boss has let me take the rest of the week off but I’m back in next Monday and don’t want to be in pain.
Hi
The Locum l saw last week is checking me out for RA as well as many other Auto Immune but in the meantime my ALT Levels have more than doubled above normal, so l’ve had to stop the Methotrexate as that can be toxic to the liver but if l do have RA & my liver is affected all DAMARDS could be a problem!
Hey, Ho!.......
Hope you get on OK reducing your Pred PMRnewbie2017 has mentioned the NICE Guidelines on reducing Pred which might be worth looking at!
It’s a nightmare isn’t it, I can see where she is coming from with the RA because of family history with it but to dismiss straight off that I can’t possibly have PMR before she has even asked me about symptoms and then saying halfway through me telling her about my symptoms and pain that if I was 59 or 69 she would say that I did have it 🤔
I have only dropped by 5mg and already I’m in pain with the stiffness coming back and can’t lift my arms up ☹️
On no Angie, that’s awful, l’m sorry you’re stiffening up & in pain again already. They said l was too young too at 55 but there are younger & younger people being diagnosed!
Perhaps worth a call to her Secretary or Rheumy Team if she’s attached to one?
Please don’t let yourself get too bad as it’ll be harder to get under control again.
I’m going to see how I go tonight and what I’m like in the morning and if it’s really bad I will call the hospital and she said she would call me back.
When my "useless rheumy" saw me, I took my sister with me who has RA, he always questioned weather I ever had PMR (6years) I said could it be RA then......no, because you were zero negative....to which my sister replied, so was I but I have RA.......blank look, no reply......now I and doctor deal with my needs........to a point.........
Arrogance with medical profession gets worse it seems after reading many of our posts....
Doesn’t sound likeRA to me. Any I have come across, the first symptoms are heat and pain in joints, sudden onset. My GP was really quite speedy on diagnosis. That was ten years ago and I’m still taking Predisolone, had to increase dose recently after a flair. I think that this illness is one that until you’ve experienced it you can’t conceive the pain. I still persevere with decreasing my meds, perhaps by my centenary 😸
I was 3 months into my 52nd year when I got the symptoms of PMR and I was diagnosed 3 months after that...when I could no longer walk standing straight up. I did eventually have a blood test for RA and it was negative.
If it were me I think I'd ignore her - because her argument is totally flawed. And said herself " said if I was 59 or 69 then I have all classic symptoms and have described the pain to a T". If it looks like a duck etc. As my nurse daughter just said - diseases do not take note of birthdates and the guidelines say quite clearly "over 50", 5 months is immaterial.
However - you are where you are and maybe it would be worth stopping the pred for a few days just so she can see you. Five weeks is about the borderline for a 15mg dose - you might be OK for a few days but be ready to take some if you feel really unwell.
If only they could identify a test that would confirm it...
Things get so muddled because early stages of RA can respond to prednisone just as PMR does. HOWEVER, your symptoms exactly match PMR and not RA, so she has only blood tests to go on. At 15 mg, does she think the RA markers will be masked or what? She certainly isn't going to see disfigured joints or any such thing in this time frame. First do no harm and I would say withdrawal to "can't get out of bed" pain is going to do a great deal of harm. Just ask her which tests are invalidated by your taking the medication as originally prescribed or reducing in a safe way. Please slow down and listen to your body instead of this programmed nitwit. You know best.
I know I have been doing a lot of research today between the 2 conditions and the fact that I could not turn over in bed couldn’t lift my arm without using the other arm to move it couldn’t move legs it was like I had been turned to stone. Couldn’t get off the sofa or go to the toilet without crying out in pain. I have only reduced by 5mg and it’s working its way back again.
Early RA does respond to pred too, you are quite right, but the consenus is that not more than 15mg should be used to start - and PMR is characteristic in responding to such a low/moderate dose.
Before changing your meds it could be a good idea to get an appointment and explain the urgency of the request, you could have a phone consultation .
As you had your blood tests last Thursday the results should be available for your GP to see on the computer, and they will be able to tell you if you RA factor is positive , high before changing your medication.
If the blood tests do not indicate RA , you could choose to continue the steroids and keep that Thursday consultation when you could explain why you did not come off them, or even if you are positive, you could keep on your dose and talk about your concerns about going cold turkey and request for time to taper your dose and then have an appointment after that.
You must work out a way to prepare for tests that is comfortable and appropriate for you as well as for your doctor's. The added stress of worrying about how medication changes will affect you will not help you health or create the right conditions in you physically for the most accurate tests.
It is so unfortunate that age has become the cut off point for diagnosis in these conditions, as others say, the idea that you can be told you are too young at 49, but that it is considered at 50 is preposterous, a diagnosis should be based on evidence of symptoms not your birthday.
Good luck and let us know what you decided and how things went, we are all hear with words of comfort and support whenever you need it.
I only dropped by 5mg in the end but that was enough to bring the pain back, I’m not prepared to go back to all that pain before I started on the steroids.
Hopefully it won’t get that bad, I will give the drs a call tomorrow and see if they have the results of my blood tests.
Yes that's a good point, hence the reason I suggested staying on the meds until our friend had spoken to the GP and had the Thursday consultation when she could ask why the " cold turkey" approach and requesting a tapering down and another later consultation which would be easier for her as the patient
Whatever the results there is probably some way to getting a full diagnosis just now, unfortunately, many conditions also overlap, it certainly isn't time to say goodbye to the group just yet, in fact now is the time everyone could help you the most.
I am sure that there are many people who have been through the same as you here, and they should be able to give you advice from their experience about what happens next , and about tests or how to deal with doctor related problems.
Keep everyone up to date and they should be able to help you through it, and if you do not have PMR but another illness they may be able to suggest the best new groups for you to join on this site too.
Take care and hope you get some help from talking to the GP tomorrow.
Following on from my post on Monday just gone, I reduced by 5 mg and pain returned in left arm left wrist and knee I saw the rheumatologist last night and she advised that the RA blood test was negative but I could still have it ☹️ she said.
She now thinks it was a transient infection and has told me she wants me off the Pred ASAP she has given me a reduction plan
4 days 7 1/2 mg 3 days 5mg and 3 days alternate 5mg she wants me off them by the time she sees me again on the 30th of August.
I’m really confused now as to what to do! Last night could feel the familiar feeling returning to my buttocks and back of my legs not painful can just feel it when I go to sit down.
Last week she was adamant I haven’t go
I find the rheumatologist quite confrontational to be honest and don’t feel well enough equipped with knowledge to stand my corner with her which is a bit unusual for me as I’m normally a punch first ask questions later kind of person {not literally} 😊 but since menopause kicked in I seem to have morphed into my sister and she to me hahaha.
I will be making an appointment with my Dr for next week and am considering asking them to manage me in house and see how i get on or Should I seek a second opinion from another rheumatologist? Who will actually listen to what I have to say instead of interrupting me and dismissing what I’m saying.
If she isn't listening - yes, find another asap. I had one like that, didn't want what I had to be PMR despite the miraculous effect of 15mg pred in under 6 hours, it was VERY obvious he felt it was beneath his skills.
Where are you? Are you seeing her privately? If not, is private an option?
We live in north wales, Yes she was private and supposedly has an interest In PMR I’ve been In touch with the private hospital and told them to cancel the appointment I won’t be going back there.
I’ve got an appointment at the drs on Tuesday so will hopefully get some advise from them as they have been great and didn’t bat an eyelid when the specialist physiotherapist suggested PMR as drs said my inflammatory markers and white blood cell count were extremely high and stated me on Pred and within a few Hours I felt great 😊 but apparently according to the rheumy they don’t work that quick.
That "interest in PMR" is seriously flawed and she needs calling out on it - not your job though. I had the miracle in under 6 hours with 15mg pred. There are several people on the forum who can tell similar stories. It can be a characteristic of PMR. The return of the symptoms in a similar time frame when pred is stopped is also characteristic - I had been on pred for 6 weeks, 15/10/5 each for 2 weeks. and had been OK. Within 6 hours of missing the first 5mg of pred it was back, worse than before. Or it may have been just the contrast between being pain free and not on 2 consecutive days. Whichever - it was hell! And a different GP in the practice said, yes, that's good enough for me.
Hum - can't think of anyone reliable really handy for you. I do hope your GP is happy to work on what he sees.
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