Does anyone have a link to research about Polymyalgia in under 50's
Posted , 9 users are following.
I have been to see my Rheumy this morning and left feeling very frustrated. He admits that he does not know what my diagnosis is. He even asked if I had any suggestions! He wont have it that I have Polymyalgia saying I am too young and can I send him the research that says otherwise. So here I am asking if there is any research I can send him?
He is thinking of doing a PET scan and is doing a test for Limes, I think he is clutching at straws.
I have been told to stop the Simponi injection I was on which is great as I am sure it was having no effect and can't have been good for me. I am on 14mg of steroids and am reasonably stable at the moment, I do have pain in my shoulders but it it just there rather than incapacitating and a strange pain in my back bone near the top. If I touch my shoulders or my back it actually hurts under pressure. They have tested for bursitis and it is not that.
My plan is to reduce steroids really slowly over the next 3 months before I see him again but would like to be able to back with more information next time.
Thank you as always for your help and support.
0 likes, 16 replies
EileenH elizabeth40672
Edited
He is quite correct to be doing a PET scan although it would be much better if you were on a lower dose of pred as even 10mg can suppress the results. And if there is a chance of Lyme's it should be ruled out as the symptoms can be similar. So no, not clutching at straws - PMR is what is called a diagnosis of exclusion, PMR isn't the disease as such, it is the name given to a set of symptoms caused by an underlying problem and there are quite a few to be ruled out before you can say it is most likely the PMR we talk about here.
How old are you? What country are you in? Who diagnosed PMR and how did it present? Why were you put on Simponi? It is an anti-TNF agent and they don't work in PMR - as well as being warned against in the 2015 Recommendations.
elizabeth40672 EileenH
Posted
Hi Eileen thanks for replying.
I am now 52 but this all started when I was 49 and I am in the UK. The doctor diagnosed PMR back in 2016 from raised inflammatory markers in a blood test. My symptoms started with sore should blades and the pain started to spread to shoulders, neck and legs. I found rolling over in bed excruciating and I could not squat down because my legs were really sore.
However once I saw my first Rheumy I was told that PMR was impossible due to my age and a second Rheumy has agreed. They thought I had AS but this too has now been disregarded.
I had got down to 5mg of steroids whilst being on Humura (for AS) and a flare and was transferred to Simponi but the symptoms got worse and I went back up to 20mg of steroids and symptoms got 80% better. I have now been told that there is not enough evidence for AS and as it still can't be PMR due to age. Thankfully they are now considering testing for other things too. It has been a long road to get to this stage. I also have Oestopersosis which means being on steroids is not a good idea either.
Is there any research that shows that younger people can be diagnosed with PMR?
EileenH elizabeth40672
Posted
Tell them to consult the NICE Guidelines which now say "over 40" - and as for any illness being impossible due to age, someone needs to go for some retraining.
What hospital are you under? These are the sort of people who end up having patients who go blind with GCA because "it can't be"...
elizabeth40672 EileenH
Posted
I'm in Guernsey... Channel Islands! I will make sure he knows when I see him next.
janet06653 elizabeth40672
Posted
It is not unheard of for younger people to have GCA, pain in the back of the neck and shoulders is a symptom that may show up. You would need to have a PET/ CT SCAN for an accurate diagnoses.
good luck!
geri02076 elizabeth40672
Edited
maybe have him test you for Lupus ask to try Etodolac and get off the presd i found it works much better and has less side affects
Anhaga geri02076
Posted
The side effects of any nsaid can be insidious.
geri02076 Anhaga
Posted
i have not had any problems much better the prednisone my daughter recommend i ask the dr about trying it she is a nurse in chicsgo it might not be right for some
EileenH geri02076
Posted
It probably won't if the illness is PMR. Horses for courses - and for PMR, the horse is pred,
geri02076 EileenH
Posted
well they dont know what she has yet and taking pred i would not take it is the worst thing on the world to give a patient and you dont even know whats wrong at leadt the Etodolac would help with pain and inflamation till they can find out i would head to mayo or cleveland clinic
EileenH geri02076
Edited
It is NOT the worst thing in the world to give a patient who needs it - NSAIDs have an equally dire selection of potential adverse effects including cardiovascular damage and gastrointestinal bleeding. But I that that to tell a patient that the only medication that is available to manage a particular condition, which they may well have, is dangerous or the worst thing in the world is hardly helpful on a polymyagia rheumatica forum. Of course - you may well disagree!!!
ptolemy geri02076
Posted
If Etodolac works for you, I should question whether you have PMR, although it may be helping something else. NSAIDs normally have little or no effect, while pred is a wonder drug for PMR. Personally I would prefer to take pred long term than something like Etodolac .
geri02076 ptolemy
Posted
if you look up Etodolac you will find it is being used for many things and PMR is one i not saying to stop pred altogether i dont take it myself i has GCA test thank goodness it came back ok but Etodolac can help some with pain that may not be getting relief just from the pred i prefer an antiflamitory diet i will not take pred because for me
EileenH geri02076
Posted
I know that there are claims that NSAIDs can be used in PMR and they are mentioned in literature to be found on the internet. However, if you had met as many people with PMR as ptolemy and I have in the last several years, you would know that NSAIDs rarely work for the pain and stiffness of PMR - in fact, if NSAIDs work to relieve pain it is less likely to be due to PMR. The 2015 Recommendations for management of PMR also strongly discourage the use of NSAIDs:
https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf
Recommendation 1 on p6.
Michdonn geri02076
Edited
Gerio, I took every over the counter pain med before I was diagnosed with PMR and none of then helped my condition kept getting worse. You need something to control the inflammation and Prednisone does just that! 🙂
ptolemy geri02076
Posted
I appreciate that Etodolac is used as a pain killer for many things, I meant that it has little or no effect on PMR/GCA. It is also not recommended with steroids as the two drugs are contra indicative.