Hi everyone, I’m new to this community and could really do with some help. Back in Feb 2019 my Mum developed a sore neck that has since moved to her shoulders, lower back, hips, legs and knees. Basically she is sore and stiff all over. We have been sent from one doctor to another. We live in Spain. She had a blood test in July that shows ESR of 29 (1-20) and CRP of 1.53 (0-0.5). She had thyroid cancer in 2011 and had a totally thyroidectomy. Her TSH is very low (0.014) so they are gradually reducing the dose of Levothyroxine. The last doctor we visited thought that it might be PMR and started her on 15mg of Prednisone for 5 days. The first two days the pain reduced but didn’t completely disappear. On the third day she felt great and spring cleaned the house. The fourth day she felt really ill. Extreme fatigue and shortness of breath. She felt so bad she couldn’t get out of bed. This feeling continued until I called the doctor on the sixth day and he said to stop taking the steroids immediately because it obviously wasn’t PMR. What I would like to know is would the Pred have put the pain away 100%? Can we definitely rule out PMR? We had kind of convinced ourselves that it was PMR. Sorry for the long post. Any help would be greatly appreciated x
Possible PMR diagnosis : Hi everyone, I’m new to... - PMRGCAuk
Hi welcome to the forum. Whilst i am not an expert on pmr i can say that for some people pred will get rid of all their pain and for others it doesnt quite get rid of it all. But and its a big but, the pred is only getting rid of the inflammation and not the cause and as pred can make most of us feel brill after weeks and months of feeling very ill we have a tendency to overdo things and your mums spring clean was way too much to do even though she felt so well. So its possible she does have pmr but she suffered so badly the day after because of her excessive cleaning. The more experienced members will be along shortly to give you more advice on what you should do next. Good luck to your mum.YBB
Thank you so much for your response. I kind of have the feeling she came off the prednisone too quick. No taper after 6 days either so I think that made her feel quite ill. It’s just so stressful being in this limbo. I’ve made an appointment with a private rheumatologist for tomorrow. Thanks for your words xx
She shouldnt really have needed to taper her pred after just 6 days but everyone is different. Hopefully your private rheumy will be able to shed light on it and if he thinks its not pmr at least have some suggestions as to what else it may be. There are lots of auto immune diseases and the symptoms very often overlap. Make sure you let us know how the appt goes and if it does turn out to be pmr we are always here to help advise.x YBB
I agree with Yellowbluebell. I don’t share the doctor’s certainty. Some people need a higher dose than 15mg and besides, she did have a result from Pred albeit a few days later, like some people. If she does have PMR, over doing it in the early stages could make her feel unwell, because as YB said the condition isn’t neutralised by the Pred, but that the inflammatory effects are reduced. I’m glad you’re getting a second opinion.
Thank you for your response. Has anyone had a feeling of fatigue after taking prednisone? I think that’s why the doctor ruled out PMR. He said she should have been full of energy after 6 days on Pred.
Drivel - 15mg of pred gave me massive relief from the pain and stiffness in 6 hours but the fatigue is another component and while some people get the pred euphoria at 15mg I didn't! The underlying a/i disorder is still active - and attacking her body, THAT is what mostly causes the fatigue and for some people so does pred. She was full of energy on day 3 - too full of it!!!
Rubbish. Many still feel tired from the ongoing disease and some (like me) feel a bit poleaxed by Pred too. Some also get the restlessness from Pred but feel dog tired as well, not a marriage made in heaven. This can lead to over doing it on the false energy that quickly runs out, leaving a cleaner house or painted shed but ongoing fatigue is a massive feature for many. As a diagnostic rule, energy levels sounds dodgy to me.
'Polymyalgia rheumatica (PMR) is a rheumatic disorder that causes moderate to severe pain and stiffness in the neck, shoulder and hip muscles of older adults. This pain and stiffness is often accompanied by a feeling of being unwell and tired. The main treatment for PMR is usually a low-dose corticosteroid medicine plus rest, exercise and physiotherapy'.
Hi Sofia - I am also new to PMR (after having GCA), and thought because I had no pain after taking prednisone, I could start the taper off process. Wrong. It came back. I am now on 5mg prednisone and keeping my fingers crossed this is a sustainable level to keep the inflammation down. Oh yes - and I feel tired but still manage to play sport.
It very probably IS PMR - but your mother made the classic mistake of thinking she was back to normal and could do the spring cleaning. All the pred is doing is combatting the inflammation that causes the symptoms but the actual autoimmune disorder that causes it all is still chugging away in the background attacking your muscles and leaving them intolerant of acute exercise. They react to even relatively moderate exericse the way you would expect them to if you ran a long distance race without training. And I don't class spring cleaning the house as moderate exercise! This delayed onset muscle soreness then takes much longer to resolve than usual because your muscles can't repair as quickly as they should.
At the start they look for a 70% global improvement in symptoms within a week or so - but it does help to rest and allow some time to recover from "being ill"! So, what you describe does fit with PMR but since you have had such poor experiences so far I'm not sure what to suggest. Do you go back to the UK much? (Big assumption made that you are British living in Spain like I live in Italy!) You could try a UK doctor if you do - not that they are much better at times but at least they see a lot of PMR - it is quite unusual in Spain although there is a biggish research group there.
It would really help if you completed your profile with some of your mum's details - age, how it started and so on which means it is easy for us to look you up for history. What part of Spain are you in? Is it a big ex-pat region? If so there must be a doctor who deals with lot of older Brits and so should have more experience of PMR.
Are you far from Barcelona or Santander? Maria Cid, MD: University of Barcelona Hospital Clinic, Department of Systemic Autoimmune Diseases, Barcelona, Spain is part of the international group that drew up the Guidelines as is Victor Martinez-Taboada, MD, PhD: Universidad de Cantabria, Hospital Universitario Marques de Valdecilla, Facultad de Medicina, Servicio de Reumatologıa, Santander, Spain. The south probably won't have much experience with PMR - the further south you go, the less common it is. Except amongst the ex-pat communities from the UK, Germany and Scandinavia!
Thanks for responding. We are British living in Ibiza so we have limited access to different doctors.
My Mum is 67 years old. It started back in February with a sore neck and shoulder. Then it extended to the other shoulder and from there to every other part. She’s taking Ibuprofen 200mg twice a day and that seems to help with the pain but doesn’t put away the stiffness. It seems to improve slightly as the day goes on but she feels very fatigued all the time.
Yes, all fits and she is young (not for PMR, that's over 50, but my age) so it will be driving her up the wall no doubt.
Unless you can get back to the UK all I can suggest is keep trying doctors. A rheumy who has contact with either of those two specialists I mentioned or a doctor who has worked in the UK in general practice is your best bet. How will you be affected with the B-word?
Brexit? Don’t even want to think about it really! I don’t think anyone knows what will happen.
Thank you for getting back to me. It really helps to talk to people that know all about the condition.
Do let us know how you get on with the rheumy. Remember to tell him about her excesses on day 3!
Have you lived there for long?
Yes, over 30 years now. It’s home really. Usually find the national health here brilliant but feel like we’re hitting a wall this time. It just doesn’t seem like she’s getting anywhere and it’s been 8 months and clearly getting worse.
If it is any consolation I spent 5 years trying to get a diagnosis in the UK - I was much younger and never had raised blood markers which made it harder. And as I say, on Ibiza, there is probably not a lot about except amongst northern European ex-pats. I've been here in Italy for 10 years - and yes, it's home really too although I'm your mum's age and my daughters are in the UK, both in the NHS. I think we're pretty well off on this side of the channel!
Wow 5 years. That must have been very stressful. I’ve been reading so much on the internet that it’s all becoming very confusing. I’m going to stop doing that now and just stick to this support group. Thanks again for your input.
It took me over two years to get the diagnosis after monthly trips to gp!! I had raised markers unlike pmrpro but because i was considered "too young" nobody considered it. I wasnt too young but thats unfortunately why it goes undiagnosed for so long for a lot of people.
That’s why I was kind of relieved to hear the doctor say it could be PMR at our last visit. At least then we would know what it is. It was just really confusing when he told me for her to stop taking the Pred immediately if she wasn’t having a miraculous recovery. I still think she wasn’t on them long enough or/and on the right dose.
As some of the others have said 15mg is a standard starting point but some people need more to get full pain relief and like i said earlier some dont ever get 100%. Hopefully things will become clearer tomorrow but please remember to explain what exercise your mum decided to do after feeling a lot better on the pred. Most of us have made a similar mistake although your mum does seem to have been a bit more energetic!! YBB
Sorry to hear about your Mum & pleased to hear she has a Rheumatology Appointment tomorrow, also you have some blood test results to take with you & a snap shot of Pred.
Two things 5days wasn’t long enough, a week would have be better as a test but your Mum fell into the trap of doing too much when she felt better!
She is not alone in that but if Rheumatologist tries her again don’t let her do any housework......
If it is PMR then the Steroids only keep the inflammation symptoms at bay but the disease still runs along in the background.
Best of Luck 🍀
Let Us Know
Thank you for your response.
I also think that 5 days wasn’t really enough and I agree 100% that she done too much. Now we are left not really knowing if she responded to steroids or not. The doctor seems to think that the result should have been really black or white and would have left no doubt that it was PMR.
Does anyone else have pain around their collarbone and rib cage with PMR? My Mum says she has pain when she breathes in and out. Could this be part of PMR?
Could be something called myofascial pain syndrome which is common alongside PMR - same inflammatory substances but instead of being all through the body they form knots of inflamed muscle fibres in large muscles. One place is about rib level on either side of the spine - and they can irritate nearby nerves and cause referred pain like sciatica but in the ribs, right round to the front. Or it might be costochondritis. But I also get this vague pain around my collarbone for no apparent reason - and I have heard quite a few others mention it too.
Sorry to hear about your current problems with a diagnosis. When my PMR was first suspected my GP said if it was PMR then the one drug ( Ibuprofen ) you would expect to give some relief wouldn’t help at all.
Hope you receive the correct help today.
Isn't it addictive as well?
Oh your poor Mum..I was initially given 15mg which had a temporary immediate effect but back to even more awful debilitating pain within 24 hours..,The Rheumy gradually increased the dose so within a very short time I was at 30 mg which had the desired (and most wonderful )effect. Painfree! Do hope she finds relief very soon.
I speak as one who’s had thyroid cancer and has also been investigated for PMR with an ESR of 77. Steroids worked for a couple of days then stopped working. I was given a diagnosis 6 months later of fibromyalgia. Recently I had a further diagnosis of Peripheral Neuropathy and Autoimmune Sjorgens. These conditions also cause chronic pain and profound fatigue.
I would doubt your mum has PMR. I’m not medical in background so it would be wrong to take any guesses.
My problems began when I had my thyroid removed and no one will persuade me otherwise. Those of us who live in the world of thyroid cancer know that a suppressed TSH causes no symptoms. Some doctors doctors think, quite wrongly, that a suppressed TSH increases risk of osteoporosis and heart disease. Nonsense.
I suspect that your mum was given T3 (Liothyronine) for a while after surgery. T3 suppresses TSH and it doesn’t return to ‘normal’ range even after this medication is stopped and Levothyroxine is started. Attempts to get TSH back into range by decreasing Levothyroxine just result in more symptoms.
Your mum needs a full thyroid profile of TSH, FT3 and FT4. The TSH will be suppressed and it doesn’t matter. It serves no purpose when there’s no thyroid. However, FT4 and FT3 should be within range with FT3 near top of range. FT4 is just a storage hormone which has to be converted to FT3 to prevent hypothyroidism. Looking at FT4 and TSH tells us nothing although many doctors only do these two tests.
By the way, did your mum have radioactive iodine ablation after removal of her thyroid?
Until all her thyroid bloods have been tested and she is at optimum dose of Levothyroxine, it would be unwise to pursue other avenues.
PMme if you want more info / sources / links. I don’t want to hijsck this thread or indeed this forum.
Too late....there is a tangible physical reason why the posters mum symptoms reappeared so soon after the prednisolone helped. Most of us have done that and some required more time or more pred to get the imflammation under control.
So until PMR is excluded and other issues arise then SofiaAlf's mum can be advised further whether that's by rheumatology or endocrinology referrals. Sometimes if it walks like a duck....if it turns out to be a swan the next differential diagnosis can be addressed.
We all have individual histories health-wise and not all take the same path as each other nor react to treatment the same. In my life I saw my mum have lung cancer and part of the treatment was radiotherapy to her head to stop brain tumours but it changed he and made her more ill. That doesn't mean I will tell people not to have that preventative treatment. I may give them questions to ask but it may work for them. At the same time having witnessed it I wouldn't have it myself if it was a secondary from small cell (oat cell) lung cancer. But I may of it was a primary cancer in the brain. So you can see how discussing individual case and causes of a condition of a different forum can hijack the thread and forum. 🌻
I’m not going to get into a ruck about this. I stand by my original response and that below.
I wouldn't expect any other response from a polemicist.
Hahaaaa . . .
I think at this stage it is not helpful to bring in such other possibilites. There is a very good reason why the pred stopped working - she overdid it on the third day and didn't have time on pred to recover. Let's wait for the rheumatologist's opinion.
Neither is it unhelpful. As long as we don’t go off-topic or suggest snake venom as a possible cure, I don’t think exploring symptomology and responses to medication is wrong. You are right. There probably is a good reason - but there are other possibilities.
Lots of people get on well with rheumatologists. Personally, I’m sceptical. I saw two. The neurologist I eventually saw dismissed Fibro and took a wider view. I wish I’d sought a neurological opinion 5 years ago.
I respect the ethos, purpose and values of this forum but I don’t think that to open up a discussion is inappropriate. Misdiagnosis is one of the scourges of modern medicine.
Not only by doctors.
Correct. Quackery is rife. As a proud polemicist I never hesitate to agree when necessary. 😊
Thats being a pragmatist....a new category...a pragmatist without humility and empathy...just an agenda
Never distracted. 😂😂
Do you have PMR or GCA ?
Waiting for biopsy and ultrasound re GCA to give definitive dx. Difficult as Sjorgens causes similar symptoms. Also have palsy of 3rd Cranial nerve which complicates dx
Well let's hope it's not GCA.
I sincerely hope not Poopadoop. Like everyone else on this forum I’ve got enough on my plate.
Sigh of relief. No chance of snake venom cure. No snakes in New Zealand.
GP mis-diagnosed my problem but I kicked up a stink, another doctor agreed and sent me to hospital where I was diagnosed GCA. Hell on earth journey but was well versed by rheumy what to expect. Told - it is manageable, treatable and (hopefully) curable. Over in 18 months but now PMR has snuck in. A whole new attitude to managing this little naughty and think we are winning.
All the best - having Brexit as well cannot help, I suppose.
Good luck and good health to you sondya now that you finally have a diagnosis.
As I’ve said previously on here, misdiagnosis is the scourge of the medical profession.
Have sent the help you requested and the answers to your questions via PM.
Hi everyone! Thank you for all the responses and information. I really appreciate it.
Just got back from the rheumatologist and he’s convinced that it’s PMR. He said he is sure of his diagnosis so back on steroids. The Dr thinks that maybe she had a bad reaction to the Pred or overdone it like you all said so he has given her Deflazacort to try which is a milder version of Pred. So she has to take 12mg a day for 5 days then taper to 9mg a day for another 5 days then 6mg a day until we go back to see the Dr. He has also asked for a full blood test.
So now we just have to wait and see if the pain eases in the next few days. Thanks again and I’ll keep you posted xx
I really hope it does but it's a fast taper so I will have to keep my fingers crossed. 🌻🌻
Anyone else tried Deflazacort for PMR? What would be the recommended taper do you think?
Hopefully we can find some but pmrpro might have ideas....it definitely looks like it's slowly as is always the case with pred. PMR is a condition that takes a minimum of 2yrs to burn out for most people. You do feel better if you taper slow, eat low carb and rest with periods of activity. No spring-cleaning until spring at the earliest😉
Steroids aren't as bad as people think. We usually have a 10% rule. So if on 15mg (equivalent) the no more than 1.5mg in 4 weeks, then it means 1mg every 4 to 6 weeks IF no symptoms. Symptoms are the most important things. She may need first dosage for 4 to 6 weeks. If symptoms return go back up. Come back with questions....but rest...both of you?!
I agree with what’s already been said - it sounds as if your Mum does have PMR.
Overdoing it when she felt good is classic and many of us have been there. I don’t think you can definitely rule out PMR.
I hope Mum gets a diagnosis and treatment pretty soon