PMR BACK AFTER 4 YEARS: All the symptoms of PMR... - PMRGCAuk

PMRGCAuk

20,124 members37,706 posts

PMR BACK AFTER 4 YEARS

Patricia10 profile image
40 Replies

All the symptoms of PMR have been slowly returning so I know this is a flare up. The doctor arranged blood tests and my inflammation markers were not hugely elevated ESR34 yet I am in dreadful pain especially in the mornings when I can hardly function and get very emotional. The rest of the day I am exhausted and not pain free. Feeling very down as we are nearing Christmas. Tried to get doctors appointment to discuss start pred again and couldn’t get appointment till mid January, I don’t know what to do.

Written by
Patricia10 profile image
Patricia10
To view profiles and participate in discussions please or .
40 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sorry to hear about reoccurrence of PMR..

That’s not good enough from GP… does your surgery have the eConsult facility - check here if you don’t know.

econsult.net/nhs-patients

If so, then contact via that, Clinician has to reply within 48 hours.

Patricia10 profile image
Patricia10 in reply to DorsetLady

Thank you so much I didn’t know about the eConsult facility.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Patricia10

Hope they do, and it works for you. Please let us know how things go.

Patricia10 profile image
Patricia10 in reply to DorsetLady

Do you think The doctor will restart the steroids with my esr at 34. I am upset having tapered right down the last time and it took 3 years. I have been taking a plethora of natural anti inflammatories but they do not seem to be helping.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Patricia10

He may do knowing your history, but may want a couple of weeks trial whilst others things are considered…but it does sound pretty obvious what it is.

A couple of years ago, I asked to be tested along with other routine bloods - out of interest (mine) - 3 years off Pred.

My ESR came back high , caused a bit of a panic because of GCA history, but it wasn’t that……decided it was result of 2 joint replacements within 6 months and a 48 hr virus. So I had a short sharp course of Pred….

So it’s not always what you think……

PMRpro profile image
PMRproAmbassador

Tell the practice it is an emergency - it will be if you get left unseen. There must be some rules about them seeing emergency patients - A&E are carrying much of the can but they are also getting Big Sick patients who were only Little Sick when they first needed care.

It is generally agreed by HCPs here that Covid is being used as a convenient get-out for some things. The Pain Clinic here disappeared - and presumably because we are nice quiet patients its been decided it isn't needed. My cardiologist said the other day that all the new building work and new units are at the expense of others - not just the UK doing it, moving the deckchairs on the Titanic ...

123-go profile image
123-go

Totally agree with others. Inflammation will build up if not managed and a month is far too long to wait for medical intervention. The urgency should be stressed when you get to speak to someone. Good luck, Patricia.

Patricia10 profile image
Patricia10 in reply to 123-go

Thank you it has been building up for the last 10 weeks

Maisie1958 profile image
Maisie1958

Hello Patricia10 the GP needs to see you before next month. You have my sympathy my ESR was only 34 when first diagnosed with PMR but I felt dreadful and when in this Spring this it reached the dizzy heights of 27 I could hardly move. I hope you get sorted soon. Might be worth mentioning how you fear PMR progressing to GCA and who would be held responsible for that? Veiled or not so subtle threats of complaints seem to be the only things that work at times sadly.

All good wishes.

Patricia10 profile image
Patricia10 in reply to Maisie1958

Thank you Maisie. I know the last time I had PMR I was so bad that the pred took 2 weeks before it kicked in

PMRpro profile image
PMRproAmbassador in reply to Patricia10

Which suggests you need a higher starting dose. But others who have had PMR twice say that the two episodes were totally different.

herdysheep profile image
herdysheep

I agree with all that has been said. Appt in January far too late. If your surgery does not have econsult, then try a letter with copy to practice manager.

Nextoneplease profile image
Nextoneplease

I agree - January is far too late! I do use eConsult and always get a reply within 48 hours. Never actually seen the GP as a result, but do get text advice or a prescription.

If no joy by the weekend, you might try 111? That’s how I was finally diagnosed last March, because the paramedics could actually see the level of pain in front of them, and they made an urgent referral to my GP which was dealt with (again remotely) the following Monday.

Good luck xx

123mossie profile image
123mossie

Sorry to hear you are in pain & being messed about. Gps are contractually obliged to see patients, so stick to your guns. Your are deserving of a surgery appointment or at least a phone consultation. I’ve asked the receptionist before now if she’d advise me to go to a&e, that usually gets results. Of course they’ll be busy contemplating doing all those Covid vaccines....

Sho-Sho profile image
Sho-Sho

That is so bad as you obviously should be seen at once. The other avenue is emailing the Practice Manager with your concerns (that is if they have one). Keep pushing.

Urtica profile image
Urtica

Sorry to read your story. Surely your GP could be ‘persuaded ‘ to prescribe a few weeks of pred? We all know that it will work almost instantly or not. My bloods were normal but after 6 months of pain I was told to take 15mg of pred for 3 days and if no improvement stop. Within 12 hours I was pain free. Good Luck

Patricia10 profile image
Patricia10 in reply to Urtica

Thank you all for your advice I got a prescription yesterday for 15mg pred. Had the most horrendous night woke up at three with sever pain in right arm so took the first dose at 4 am. Here we go again.

autumnlass profile image
autumnlass in reply to Patricia10

All the very best wishes to you & hope the Pred kicks in quickly for you before Christmas. Look after yourself. 🙏 🍀

PMRpro profile image
PMRproAmbassador in reply to Patricia10

I stood in the street outside the pharmacy and took my first 15mg as soon as I got them I was so desperate to see if it worked!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Patricia10

Let’s hope it’s quick acting…..

Loyd profile image
Loyd

Hi Patricia - Our surgery here in Perthshire are as bad! 6 weeks for a telephone appointment! However they have emergency ones available everyday (don’t tell you unless you ask!) but you have to phone first thing in the morning - first come first served. Suggest you ask reception if they do this at your practice. Good luck - I hope you get some pred before Xmas. 🤞🤞 PS tell them it’s an emergency! The doctors don’t care if it is or isn’t.

lottieloulou profile image
lottieloulou

Sorry to hear this. Exactly the same as happened to me. Off steroids for 6months only, after a 3 year slow taper. PMR originally started sept 2017, when I was 55, but took 5 months to diagnose and was almost bedbound and in excruciating pain. This times, same symptoms, but milder, so I knew what it was and wished to act swiftly to prevent it getting so bad again. Spoke to receptionist who put me on triage list and GP rang back same morning. Arranged blood test for same day and represcibed steroids, to start even before blood results came back, but at a lower dose, 5 mg seems to be my “sweet spot”. Guess I’ve been fortunate at my GP surgery, but all it took was a 5 minute call back. You must insist to either be seen or have a telephone consult to prevent a major relapse. Good luck and I do hope you get sorted quickly.

PMRpro profile image
PMRproAmbassador in reply to lottieloulou

SInce it was 6 months before it got bad, next time you may find that you can get as low as 1 or 2mg without symptoms returning. Prof Dasgupta told us 18 months ago that he often keeps patients on 2 to 3 mg indefinitely to prevent relapses. Almost always in this sort of case it is that the underlying a/i disorder is at such low activity it takes a long time for the dripping tap of inflammation to fill the bucket and overflow. It really pays at the last couple of mg to take months at each new dose rather than just weeks.

lottieloulou profile image
lottieloulou in reply to PMRpro

Thanks for advice. Yes I will be reluctant to ever stop the Pred now. I stayed on 2mg for nearly 12 months and only stopped it for health concerns. I felt so well and back to normal activities and fitness I thought it had run its ugly course. Obviously not, I will see if 5g helps then very slow taper to 1-2mg. GP now says it can last up to 5 years and also advised very slow taper. very different advice from 4 years ago, maybe he’s been educated since 🤞🙂

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to lottieloulou

GP - you never know, hopefully he will pass on to others!

PMRpro profile image
PMRproAmbassador in reply to lottieloulou

Might have "met" us!! As for up to 5 years - wonder what he'd say to a few of us, well north of 10 years and no sign of it being "not PMR but something else" ...

amilou profile image
amilou

then your doctors everyday to check for cancilations or get an emergancy appointment u cant wait till mis january thats ridiculous .

AncientMariner profile image
AncientMariner

My heart goes out to you. needs must so contact BUPA and you will get a face to face with a Gp within days. I had to do this for my Mother, it cost £125 for an half hour appointment.

Nextoneplease profile image
Nextoneplease in reply to AncientMariner

Hi AM I’m a bit confused about private GP appointments. Does the NHS system accept private diagnoses/advice? If meds are necessary, do you also pay for those privately or is it expected that the NHS GP will pick up??

Sorry…… confused.com here!! 🤔

AncientMariner profile image
AncientMariner in reply to Nextoneplease

In my Mothers case it expedited a referral for further investigation to a general hospital, the NHS is accessed by a private Gp the same way as any other. In terms of medication they are qualified to prescribe and would communicate any decisions/interventions made to your regular Gp. They access pharmacies just as any other Gp would bearing in mind many of them also have roles in the NHS too.

Nextoneplease profile image
Nextoneplease in reply to AncientMariner

Thanks PMRpro and Ancient Mariner 😊

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

The NHS will accept dx's from almost all private doctors - due to the fact most private practitioners also work for the NHS! A good specialist will add a patient who needs it to their NHS list if appropriate, i.e. the patient is willing to travel if it is outside their area. To be honest, if I had a problem that was likely to be PMR-related I'd not waste money on a private GP, I'd go straight to a good rheumy. Having got feedback from people here for a good one ...

Blossom20 profile image
Blossom20

Well done for persevering and getting a prescription! I think it was outrageous that they expected you to wait until mid January to be seen when you were in such pain! What is this country coming to?! All the best to you and hope you feel better soon.

Patricia10 profile image
Patricia10 in reply to Blossom20

Thank you

PMRinUSA profile image
PMRinUSA

I'm so sorry. I'm glad they were able to get you a prescription and I hope you feel better very soon. I am at 3/4mg Medrol per day and on a super slow taper after holding here for several months. I dream of getting off. Sending you strength and hope you are able to enjoy the holidays.

Patricia10 profile image
Patricia10 in reply to PMRinUSA

Thank you so much

Leymay24 profile image
Leymay24

Try telephoning 111, the NHS Helpline and explain exactly how you feel.

Hosers2 profile image
Hosers2

I switched from Pred to HCQ last February, and so far, it has worked. However, because it took two months to see a doctor the first time around, my rheumatologist filled a prescription for Pred for me to keep around in case I have a reoccurrence. She trusts that I will know if PMR hits me hard again. I definitely do not plan on waiting for an appointment and permission to start up Pred, should I wake to that awful pain.

All the best. I think one of our biggest fears is that reoccurrence happening.

Robinre profile image
Robinre

My Rheumy seems to think that my 33 SED rate is not high enough to warrant a diagnoses of PMR, which I have been free from for 2.5 years. I do have hip pains but I am told they are from a mild spinal stenosis. I am not really tired as I was with the PMR but I always have that in the back of my mind. I wish there was some other way to tell the difference between back/hip pain from stenosis and PMR (since both increase SED rate). For PMR there is a medication, although not that desirable. For stenosis there is exercise, PT, and occasional pain medication. Most of the time we, with this diagnosis, just live with the pain.

PMRpro profile image
PMRproAmbassador in reply to Robinre

I keep telling the research group I am part of that they shouldn't worry about a new treatment as much as finding a definitive diagnostic marker! Then they can look for the best drug - because other than pred I doubt there is a single answer.

You may also like...

PMR pain after 10 years

much pain. Gradually cut to 3 but bad muscular pains so had to go up again. Anyone else had PMR...

Solo international travel after 2 years shielding/4 yrs pmr/tapering preds now 17/recent covid

my airline. Last time I went I found the journey very challenging . However the most challenging...

PMR for 4 years

with PMR exactly 4 years ago at age 55. I am a nurse, now retired, and had never heard of PMR....

PMR unstable after four and a half years.

Advice please re a flare or worsening of PMR. Down to 6mg Pred after 4.5 years but feeling I was...

35mg Pred after a year of GCA,PMR

Hello, I've had GCA and PMR for a year. I'm on Actemra and prednisone. I was reducing and got down...