Can it still be PMR even if blood tests come back as normal?
Posted , 11 users are following.
Have been suffering severe muscle pain for a number of months but just put it down to getting older am almost 51 and spending too many nights sleeping on daughters sofa following the arrival of my
grand daughter 14 wks early. Felt really tired sleep pattern appalling as shoulders and hips very
painful thought I would feel better once I broke up for summer hols but within days all symptoms
were a thousand times worse. Saw GP who was very understanding and immediately thought it was
Likely to be PMR. Sent for blood tests but all came back negative and pain getting worse. Sent for
more bloods as GP still sure it's PMR results also negative. GP has discussed with college who is
reluctant to start me on any meds so now referring me to a specialist having read up on PMR I think the GP maybe right but why would blood be normal don't want to take steroids unless needed but so want my life back and to be without this pain. Any advice would be so much appreciated. Thank you
0 likes, 33 replies
Nefret
Posted
If you go to the sticky threads at the top of the page here you will find directions to several very good PMR/GCA dedicated websites, (plus a dedicated forum) and from there you can print all kinds of information for your doctor - and you - to read.
Any questions, just ask!
Nefret aka Catie
Bobski61
Posted
MrsO-UK_Surrey
Posted
Very wise of you to ask for a trial dose of steroids - many GPs do just this when a patient presents with what they think might be PMR but in the absence of raised blood test markers. If there is a good response to the steroids, sometimes within just a day or two, then they take that as confirmation. Best of luck and do come back and let us know how you get on.
MrsO
carolk
Posted
Bobski61
Posted
meet PMR criteria because I am too young oh if only I felt it. She has made an urgent referral to a
rheumatologist and put me on cocodamal naproxen and amytriptaline in the hope that it will give some relief
so here is hoping. Part of me is very relieved to not start the steroids but the other part of me was hoping to
in the hope that i could be pain free Thank you all for your responses Bobs x
MrsO-UK_Surrey
Posted
Well unfortunately you are not "too young". You should download a copy of The British Society of Rheumatologists Guidelines for the Management of PMR and take a copy to your GP to educate her! The Guidelines state that the core inclusion criteria are "Age >50 years". Some people have been diagnosed in their 40's. At least she has agreed to refer you to a rheumatologist and hopefully he/she will be more clued up. Do hope the appointment comes through sooner rather than later and that, meanwhile, the concoction of drugs she has suggested help to relieve your pain. Do keep in touch.
MrsO
Nefret
Posted
Generally PMR doesn't respond to anti-inflammatories, I was tried on any number before diagnosis and they did nothing for me. As said though, that cocktail of drugs may help a little and I hope it keeps you going until the Rheumatologist appointment.
It still might be worth taking her a copy of the guidelines - she definitely is not up to date with PMR!
Catie
dunster
Posted
MrsO-UK_Surrey
Posted
So sorry to hear how long you have been struggling and suffering with such pain in spite of rheumatology referral. Like you, I also had every test under the sun following my first referral to a rheumatologist by which time I was in a wheelchair. I remained undiagnosed until even worse symptoms arrived and was eventually diagnosed with both PMR and GCA.......by a different rheumatologist!
Going to bed alright and waking up the following morning with the stiffness you describe is how many of us would describe our onset of our PMR, and your response to the recent steroid injection would be taken as confirmation by most GPs/rheumies.
Like you, I was also diagnosed with anaemia when being investigated - this righted itself in due course without medication.
What does raise questions is your mention of Vit D deficiency as a lack of Vit D can lead to all sorts of health problems including muscle/joint pain - do you know what your reading is? Have you been prescribed a supplement?
I do hope you continue to feel better and that your rheumatoligst has given you a follow-up appointment following to monitor your response to the steroid injection?
dunster
Posted
carolk
Posted
dunster
Posted
MrsO-UK_Surrey
Posted
16 is an very low Vit D reading. As for what is a normal reading, different Primary Care Trusts have varying ranges for what is normal. Some consider that 50 is ok but I believe 70 is the optimum. My reading was 54 last year and during the Spring of this year had gone down to 44. I was prescribed pure Vit.D meds (Cholecalciferol) but was then advised against taking them due to my reduced kidney function, so I have been advised to get out in the sun whenever possible and have the test repeated towards Autumn.
Although your symptoms are so indicative of PMR, I'm wondering whether they would have resolved anyway once your Vit D levels were normalised by the supplement. If the steroid injection continues to relieve your pain - and I so hope it does - then it might be reassuring to know that the injections can help to avoid the side effects possible with oral steroids as they go directly into the bloodstream, therefore placing less stress on the organs.
MrsO-UK_Surrey
Posted
Nefret
Posted
I heartily second MrsO regarding the overdoing the housework (and anything else) - it's something I have yet to learn.