PMRGCAuk

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Rheumatologist says I’m too young for PMA, I’m 52. Help!

Bramble2000•

2 months ago•61 Replies

Hi everyone,

I’m new here and in desperate need of some help.

My GP diagnosed PMR due to my severe symptoms, ESR and CRP high and climbing in direct relation to my pain and stiffness. He started Prednisilone 20mg and within 12 hours, I was pain free!

Three weeks later, I saw my rheumatologist. He said I’m too young at 52 to have PMR and stopped treatment. Needless to say, I’m now bedbound again. He ordered a PET/CT scan which I had 10 days ago. I am under the rheumatologist already because I have Ankylosing Spondylitis but recent MRI’s have ruled AS out as the cause for all this.

I’m really worried that this rheumatologist isn’t going to accept I have PMR. He was so irritated that my GP had diagnosed it. I’m also concerned that the scan won’t show it. I live with my 17 year old who has severe ME so he can’t help me. I can barely get out of bed to the toilet. I can’t drive, can’t get dressed, showering etc is a nightmare.

If I don’t get anywhere with this Dr, what do I do? Do I see someone privately even though I can’t afford it? If so, any recommendations as to who I should see? I live near Brighton. Will the PET/CT scan show PMR?

many thanks!

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Bramble2000

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61 Replies

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DorsetLadyPMRGCAuk volunteer2 months ago

What is it with some of these Rheumies -🤦🏻‍♀️

jinasc has a list of good Rheumies -sure she’ll see this and PM you. But you may get other recommendations from members.

Bramble2000 in reply to DorsetLady2 months ago

thank you

jinasc2 months ago

Oh dear not another one.............who has obviously never read the guidelines on Diagnosis and Treatment.

academic.oup.com/rheumatolo...

Page 1 (i) Core inclusion criteria: PMR can be diagnosed with normal inflammatory markers, if there is a classic clinical picture and response to steroids. These patients should be referred for specialist assessment.

Age >50 years, duration >2 weeks

I suggest you print them off and talk to your GP.

When I think of the work done by two patients who both had PMR for many years.

As patient representatives on the BSR committee and the hard work done by them (with a little bit of help from others) to get those guidelines amended, and there was resistance by some medics. Sometimes it breaks my heart.

I am sorry but you are going to have to fight your corner or alternatively perhaps another Rheumy? If the latter send me a PM.

Bramble2000 in reply to jinasc2 months ago

hi, I’m not sure how to pm you but yes, I need to see someone else. Could you send me the list? Thanks so much x

jinasc in reply to Bramble20002 months ago

I have sent you a PM. I don't share the list - just supply a name if I have one near you.

PMRproAmbassador in reply to Bramble20002 months ago

On the top of the page there is a line with My Feed My Hub, Chat, Alerts. Chat is the private message facility, only you and the person you are corresponding with can see the replies but otherwise it i's the same as on open forum. An orange circle with a number in will appear when someone sends you a message - click on it and a list of your private conversations will appear.

123-go2 months ago

Bramble2000, your post makes me want to scream! You have enough to try to cope without dealing with a bull-headed rheumatologist. Many of us have had to advocate for ourselves somewhere along the way but to do so is especially stressful when body and mind are so compromised and I have every sympathy for you.

If you haven't already done so, I would advise you to try to speak to your GP telling him what has happened. I don't know if it would be possible for him to arrange for you to see someone else but you cannot stay with this rheumy and in any case he, your GP should be kept in the loop.

Another suggestion is to ring the rheumatology department at your hospital and tell the secretary that you wish to speak urgently to the specialist nurse as you are having a massive flare of symptoms. Be honest about how you are suffering and ask what can be done for you.

I hope there will soon be a resolution for you. Please stay in touch with this forum.

Bramble2000 in reply to 123-go2 months ago

thanks x

PMRproAmbassador2 months ago

Yet another **$!

Can't he read? Or does he think he is better than the experts in the BSR? In addition, the criteria jinasc has quoted are actually aimed at research, not clinical diagnosis. They have specific criteria to try and standardise the populations in a research study so the idea of "over 50" does not in any way mean that you can't have PMR under 50 - but you are indeed in that age group so heaven knows where HE is coming from.

Were you already symptomatic again by the time you had the PET-CT? With a bit of luck he'll have to eat his words.

Do you have a good relationship with your GP? Since pred worked so well before, maybe he'll take pity on you. He doesn't have to dance to the rheumy's tune.

Bramble2000 in reply to PMRpro2 months ago

my GP would treat it regardless. He’s been my GP for 27 years. I’d been off the Pred for about 6 weeks when I had the scan and was well and truly symptomatic. The healthcare person had to lift my legs for me on to the scan table because I can’t lift them! Ugh.

PMRproAmbassador in reply to Bramble20002 months ago

Then sit down with your GP. The PET-CT result should be available by now - most PET-CTs are done in cancer diagnoses, they don't leave reading them for ages. Being of a very cynical turn of mind - I wonder what the rheumy will do if it shows inflammation typical of PMR? And even if it does - I would be very keen to shift to a different doctor on the grounds the doctor-patient relationship is very rocky. He doesn't seem the type to back down gracefully but maybe he will learn.

Bramble2000 in reply to PMRpro2 months ago

agree!

SnazzyD2 months ago

I won’t add to the #..*!

I hope that with no other compelling reasons for your diagnosis reversal than age, your GP armed with guidelines to back them up professionally, will treat you as PMR. Did your rheumatologist give an alternative diagnosis or was it one of those, see you when we see you after the scan? 123-go’s idea of presenting your flare to the specialist nurse in parallel might be a good one. At least the rheumatologist might learn that you are totally incapacitated.

Bramble2000 in reply to SnazzyD2 months ago

yeah, I don’t have an appointment with the rheumatologist until the end of January. By then I’ll have been practically bedbound for 10 months. He thinks there’s probably another reason for it all hence the scan. But mostly he was just really pee’d off that the GP had diagnosed it! I’ve had the same GP for 27 years and he knows me really well! Ugh, fed up. X

SnazzyD in reply to Bramble20002 months ago

PMR is routinely diagnosed and treated by GP’s without the opinion of a rheumatologist. I would like to ask him if being more or less bedbound for 10 months is better for the patient than a moderate dose of steroids that improved mobility. Immobility carries its own risks and they are willing for you to face these while they have a think.

Bramble2000 in reply to SnazzyD2 months ago

Absolutely. He was so angry that my GP diagnosed it instead of him. He’s insisting I don’t have it as I’m too young. I just really really hope something shows up on this scan or else I’m really stuffed! I can see my leg muscles wasting away in front of my eyes.

SnazzyD in reply to Bramble20002 months ago

Angry for himself or for your quality of life? Urgent second opinion to at least find out of this enforced immobility is worth not having Pred for. Does the GP know all of this and how you are now?

Bramble2000 in reply to SnazzyD2 months ago

GP wants me to do as Rheumy says. I’m pretty much bed ridden.

SnazzyD in reply to Bramble20002 months ago

Perhaps a letter to both the GP and Rheumy to ask who is accountable for the risks of you being bedridden when Pred prevented it.

Does the Rheumy and GP know how immobile you were/are?

Bramble2000 in reply to SnazzyD2 months ago

GP definitely does but Rheumy not interested, doesn’t listen. GP wants me to go with what Rheumy says.

SnazzyD in reply to Bramble20002 months ago

Sorry to keep on, but does the Rheumy know about your immobility, even if they don’t care?

Bramble2000 in reply to SnazzyD2 months ago

yes

HeronNS2 months ago

You've already had the scan so there doesn't seem to be a compelling reason to withhold treatment of your symptoms at this point. Can your GP not prescribe you pred now? And if you have the expected miraculous recovery that in itself should be a big plus on the side of PMR diagnosis. I understand about needing to be able to move! I had a knee injury a couple of years ago and until I was able to turn the situation around (long story) I could see that leg wasting away. It was quite alarming actually! All good now, but it wouldn't have been if I hadn't figured out how to get that leg useful for walking again.....

Bramble2000 in reply to HeronNS2 months ago

hi. My GP prescribed Pred initially but the consultant stopped it because I’m apparently too young for PMR. I don’t know yet if anything showed on the scan. X

HeronNS in reply to Bramble20002 months ago

Does the GP have to follow rheumatologist's orders? I mean, you absolutely should not be left to, basically, deteriorate for the next however many months. Especially as the theumatologist appears intent on overturning the GP's diagnosis. It's not right, especially as you and your GP already know that pred helped you. If you decide to leave that particular specialist who ordered the scan - and, not incidentally, appears to have a big ego problem - surely then your GP can resume your care? Was there a particular issue which encouraged him to refer you? As others have stated, many, maybe even most PMR patients are treated by their GP.

Bramble2000 in reply to HeronNS2 months ago

I was already under him as I have Ankylosing Spondylitis

HeronNS in reply to Bramble20002 months ago

Oh right, I forgot you told us that. I assume you are doing well with his treatment of that diagnosis? I think my main concern for you at this stage is what you've been telling us - that no one is giving you a proven treatment (with a well known, well tried medication) for a condition which is making your life so very difficult. After all pred is so well known all the side effects are known and can for the most part be handled well, especially at low PMR doses. It's not like you're asking for the moon!

If I had a really bad pain of some sort and that pain could be managed by a proven medication while further investigations proceeded then I'd expect that care. In your case it was probably important to have the scan without pred, but now???

Sl0th2 months ago

I was diagnosed by GP last year (48 yrs). Symptoms changed this year with stiffness moving into my wrists and toes so referred to Rheum. After 2 cancelled appointments I finally was seen, and yes, consultant said immediately that it isn't PMR - too young and PMR isn't in hands and feet. He didn't come up with an alternative diagnosis, ran a few tests which I have not had any results of. Back to GP today.

Crackers1964 in reply to Sl0th2 months ago

I suggest you immediately get on the steroids and find another specialist.

I was only 54 when I was diagnosed

PMRproAmbassador in reply to Sl0th2 months ago

I must have further words with Prof Mackie in Leeds - they did a study, found PMR DOES affects hands and feet but haven't published it! She also has patients in their 40s.

Sl0th in reply to PMRpro2 months ago

That would be useful. It seems that so many people face the same hurdles. Rheumatologist hasn't come up with any alternative diagnosis yet stated point blank that it isn't PMR. Rheum, GP and me all agree that it was sudden onset symptoms which must limit the choices a bit.

PMRproAmbassador in reply to Sl0th2 months ago

To some extent - except PMR can creep up slowly too - and they deny it is PMR then as well! What makes me angry is that they say it isn't, remove the drug that works and leave the patient in pain and immobile. That isn't good enough - there is no cure for any a/i disorder, to leave the patient unmanaged is gaslighting. And I suspect it happens less often with men.

HeronNS in reply to Sl0th2 months ago

Did you have the more typical PMR symptoms when you were diagnosed last year? How has your taper been going? Did the stiff hands and feet appear when your dose got a bit too low, perhaps?

Sl0th in reply to HeronNS2 months ago

Textbook symptoms when diagnosed. Immediate improvement with 20mg then 15mg pred. From then on the tapering was rushed by GP, before I joined the forum. Hands and feet symptoms sometime later.

HeronNS in reply to Sl0th2 months ago

So possibly the new symptoms were a result of a too rapid initial taper?

Heron822 months ago

I am so frustrated and sorry to learn this, but very sadly you are not alone. A friend of mine had her treatment stopped after being told by a young consultant that at 57 she was too young to have PMR. She too is suffering. I have advised her to go back to her GP who was far better informed. Good luck I really hope you get some treatment and informed advice soon.

PMRproAmbassador in reply to Heron822 months ago

What is it that they don't understand about AVERAGE? Many patients over 80 have PMR - to balance that out there must be lots under 70 to get the "average age at diagnosis 72". And that of course ignores the many like me who waited 5 years for a diagnosis. I was in my 50s but the figure entered into the statistics would be 57 not 51 which is when the symptoms started but were not recognised as my blood markers remained "within normal range".

Broseley2 months ago

This is dreadful. It is not a position anyone should have to be in, especially when you know that pred can free you of your symptoms. I would go straight back to your GP. Do let us know how you get on.

lawli562 months ago

Go to your Doctor and ask him to refer you to someone else. Under the NHS charter you can ask for a second opinion if you are not happy with the treatment you are receiving.

"The General Medical Council, which regulates doctors, state that all doctors must ‘respect the patient’s right to seek a second opinion’.

The Department of Health accepts that if a doctor thinks that it is in the best interest of the patient to refer for a second opinion, they should do so. Although you do not have a legal right to a second opinion, a healthcare professional will consider your circumstances and whether a second opinion is needed."

Bramble2000 in reply to lawli562 months ago

thanks

PMRproAmbassador in reply to Bramble20002 months ago

But whatever you do, do your homework first asking for advice here, and DON'T under any circumstances go to a rheumy in the same Trust.

Bramble2000 in reply to PMRpro2 months ago

hmmmn, I was thinking of going to a Rheumy I used to be under for many years, privately . He’s really lovely. He’s about to retire from the NHS but he is indeed under the same trust as the guy I’m under at the moment. You think I should go elsewhere?

PMRproAmbassador in reply to Bramble20002 months ago

If you were already a patient it might be OK - he will know you. But they do tend to cover each other's backs, especially if it is under the NHS. If he's retiring and you see him privately - possibly OK. He will at least see the state you are in!

Groovykindoflove19922 months ago

I had symptoms for 6 years before being diagnosed at 51. Rheumy just put it down as 'A typical' PMR 💁

Anon-mouse2 months ago

I am 53 and was diagnosed by my Rheumatologist to have PMR. I unfortunately cannot handle steroids, tried Pred then Medrol and had horrific side effects! So, he gave me Gabapentin which is totally worthless in helping my pain.

PMRproAmbassador in reply to Anon-mouse2 months ago

Why hand out gabapentin? If it is PMR it isn't nerve pain.

Anon-mouse in reply to PMRpro2 months ago

I have no idea why he would give that to me. I even told him I had been prescribed that stuff before and it did absolutely nothing for the osteoarthritis pain in my lower back or any other pain I was experiencing, it just knocked me out. I am becoming more convinced Doc’s don’t give a damn about their patients, they don’t listen and don’t dare try to tell them ANYTHING, they know better. 🙄 It was as though that was his only solution to PMR and if I couldn’t handle the “go to” medication, he lost interest in me and tossed this worthless drug at me to shut me up. It is all very disheartening and makes me feel very depressed. I realize I am very sensitive to many medications but he just met me! His life isn’t severely curtailed and he isn’t living with a non-stop flare so I am out of his mind the second he leaves the room. I have better luck with my FNP listening to me.

Bramble2000 in reply to Anon-mouse2 months ago

ask for a biologic

DorsetLadyPMRGCAuk volunteer in reply to Bramble20002 months ago

Depends where Anon-mouse lives... not available for PMR everywhere.

PMRproAmbassador in reply to Anon-mouse2 months ago

By the way - could you add a bit to your profile - at least what country you are in as it does make a massive difference the things we can realistically suggest.

Anon-mouse in reply to PMRpro2 months ago

Sorry about that, I am in TN.

DorsetLadyPMRGCAuk volunteer in reply to Anon-mouse2 months ago

TN? guessing that's Tennessee , but this is a world wide forum (PMRGCA charity is based in UK) which is why we ask for country - see this -

healthunlocked.com/pmrgcauk...

Anon-mouse in reply to DorsetLady2 months ago

Sorry all, I am new here and when I joined, my head was not in the details, my Mother was dying and she just passed away before the TG holiday. 😢 I have been dealing with the PMR pain since early Feb this year. I woke up one morning and both shoulders and elbows felt as though I had been tossed around in a dryer! I could not figure out what on earth I did to cause such pain and waited for it to subside…….it never did. I then went to massage therapy every week

( which barely helped ) and I knew something was very wrong after months of no progress. I then met a FNP who said she would help me, she ran a bunch of tests for RA, Lupus, etc. all came back normal but my blood showed inflammation. She had me try prednisone bubble packs, which seemed to be a miracle by day 3, I felt better than I had in decades and was so excited, even my back felt great! The pain would roar back when I tapered so it was 2 days of feeling great. So we tried it on a daily basis and by week 3, horrible side effects started. I asked her for the referral to the Rheumatologist, thinking this was more in the specialist wheelhouse to figure out. He ran a bunch more tests and came up with PMR as his diagnosis. I told him my experience with prednisone and he decided to try me on Medrol. Same thing……by week 3, the same awful side effects but now my hair was falling out on top of the muscles in my hands and mid back seizing up & the roid rage. I just cannot handle steroids unfortunately.

DorsetLadyPMRGCAuk volunteer in reply to Anon-mouse2 months ago

Sorry to hear about your mother, very stressful time, and obviously didn’t help your PMR….so no need to apologise. But if we know more about you, which is why we ask for info on your bio, then obviously we can help you more by giving relevant answers.

Massage therapy unfortunately is not always a good idea with PMR, certainly if you don’t know you’ve got it…but at the beginning you are willing to try most things just to relieve the pain …we know.

Have to say, most side effects can be mitigated and once they have got your built up inflammation under control and you can reduce them enough to deal with daily production they will get better. So perhaps you should try and preserve, and get through that stage, but of course it’s your choice….have you been offered any other medication.

Maybe have a look through this link to give bit more info on PMR itself ….and then discuss further with your doctors - you do need to manage it -

healthunlocked.com/pmrgcauk...

Anon-mouse in reply to DorsetLady2 months ago

After the bubble packs, which I did twice, I was started on a very low dose of 5mg of Prednisone twice daily. That did not help so I increased it to 7.5 mg. That was better but still had pain so I increased to 10mg. By week 3, all these awful side effects, hands seizing up when I was just trying to make meals or comb my hair, mid back muscles if I reached over my head seizing, lumps in my back muscles visible by masseuse who was familiar with my body, getting angered very easily, acne everywhere, hair falling out, it was just awful. So, I stopped taking it. Then Rheumy put me on a 5mg of Medrol, same things happened but hair really started coming out. I have lost half the hair on my scalp, no exaggeration. So, not really keen on trying to go down that path again. My FNP is afraid to try methotrexate on me because of my reaction to steroids.

DorsetLadyPMRGCAuk volunteer in reply to Anon-mouse2 months ago

I can understand that ….but you do need something to get and keep your PMR under control -as that can cause issues of its own.

The problem is most drugs have side effects, it’s just finding the least worst -if you know what I mean.

You may find MTX is okay, or as already suggest by Bramble2000 maybe a biologic such as Actemra/Tocilizumab -depends on your medical insurance -but perhaps worth investigating.

Anon-mouse in reply to DorsetLady2 months ago

Thank you, I will investigate those and bring it up to FNP. I don’t feel the Rheumy will bother listening to me.

PMRproAmbassador in reply to Anon-mouse2 months ago

If it is any consolation, MTX alone rarely works on PMR. I suspect part of your problem was due to being rightly royally messed about with at the start. You yo-yo'd the dose at the start, that never works with PMR, creeping up the dose and splitting at the start also is a bad approach. I did very badly with Medrol - I had steroid effects I've never had with pred - and it can take a few weeks of careful use to get used to any drug.

Actemra is the most likely to work for you alone but there is also one person on the forum who does very well with just hydroxychloroquine having been unable to tolerate steroids.

Anon-mouse in reply to PMRpro2 months ago

Thank you for that info. I had never taken steroids before so I relied upon the FNP and then Rheumy. I have heard Hydroxycloroquine works for some but ever since Trump spoke highly of it for helping Covid, the TDS folks pretty much forbid Doc’s to prescribe it. Ridiculous! I will talk to FNP about Actemra as well. I appreciate your help and suggestions, I am still new with this condition, trying to navigate how to manage the pain without adding even more miserable problems/side effects to the mix.

PMRproAmbassador in reply to Anon-mouse2 months ago

To me TN means Trentino in northern Italy and I'm pretty sure you aren't there!

Anon-mouse in reply to PMRpro2 months ago

I am in the USA.

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