I’m a first time poster and honestly not sure if this is the right forum.
After two years of being tested for PMR my GP has now referred me to Rheumatology as they think that I may have RA (and not PMR).
I am off all medication other than pain killers, I’m am in my late 40s.
I am really struggling with soreness and stiffness mainly from my hips down and have occasional heat and pain in the joints in my hands. My legs feel like lead weights when I walk.
I’m not sleeping very well and feel permanently tired.
It is likely to be another few months before I see the Rheumatologist so I was just wondering if anyone had any tips on how to locally deal with the discomfort.
Obviously the diagnosis may be for something different.
thanks in advance
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SunshineJSM
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If you can afford it, the fastest way to get help & good advice is to have an initial consultation with a Private Rheumatologist…first making sure he/she has an NHS list you can be transferred to .
You can either choose a rheumy by word of mouth recommendation,or your GP can refer you. ….your GP will be able to have useful notes & test results to forward to the rheumy.
It might be worth having your hormones checked out as well as low oestrogen can do crazy things to the body, joint pain, fatigue..... if you're able to it might be worth discussing HRT. Good luck and hope you get an appointment soon.
It may be worth contacting the rheumatology department at the hospital. Say that you’re just checking they received your referral and that you’d be willing to take a cancellation at short notice if any become available. It might not do any good but it’s worth a try. I’ve done that in the past with other departments.
Some good advice already on here in my case I went private and then jumped onto NHS list of same consultant. I have no problem with that I paid my NI and the Council paid BUPA. It really helped being treated fast and aggressively as even now a long time gone, I am in remission and apart from a couple of pills and a jab once a week RA is not a huge problem. I've had relatively few meds because and this is just my personal opinion I tested positive for RA and therefore it might be a purer form of RA that responds better to medications. I have pANCA so antibodies.
As for what else to do, the best thing could be to stay active as it helps to keep mobile. I found it took a long time to get going in the morning and really used to have to force myself on but then once up it wasn't too bad. Flares rarely happen now in fact I can't remember the last one it was so long ago. Ice helps swollen joints and inflammation and although heat can sooth it isn't as good as ice. Try Deep Freeze on the affected bits and my RA is left shoulder, right hand, left hip and right knee but worst was my left foot which was straightened in surgery.
My hospital has a very, very, good RA team and the consultant has just rung me and is lovely. That is what is really important a good relationship with your RA team. Nothing for me to worry about and so good to know. Whatever you do don't Dr Google, it can be terrifying and very unhelpful. Best of luck and welcome to the club. lol
I’ve just been diagnosed with PMR induced seronegative RA so have had just your experience. Go to you GPto get onto prednisolone to help with the inflammation as soon as you can or you have months of pain ahead of you. I’ve been in Pred and methotrexate and now on leflunomide since the RA diagnosis. Had PMR for 2 years and the steroid weaning did not work thus the RA diagnosis. All the best.
Hi, I had a similar story, in that I developed PMR symptoms in my late 40s, which coincided with the menopause. I was referred to rheumatology as I was classed as atypical being under 50. It was nearly a year before I eventually was given steroids, and unfortunately developed GCA, which my rheumatologist dismissed. I ended up with a GCA expert 250 mile away asking me to get a referral to her, as she was horrified at my rheumys attitude. He basically said I couldn’t be unfortunate enough to get both PMR and GCA under 50. She confirmed GCA but also felt it all overlapped with a spondylarthropathy. After X-rays and MRIs she confirmed I also had aggressive ankylosing spondylitis. My sacroiliac joints and ribs had fused over the years of being dismissed re my back pains as being due to having a career as a nurse.
I’ve been on steroids since 2012, initially for the PMR and GCA. However struggled to taper below 7mg. The danger with steroids is they shut down your bodies own production of cortisol. In my case I now make none. It’s the only other hormone besides insulin needed to survive. I had a severe stroke, due to an adrenal crisis, and was diagnosed with severe adrenal insufficiency. If it’s not certain it’s PMR I would personally try and hold off steroids, obviously if it is PMR then steroids are the only treatment. I was also put on Azathioprine, then methotrexate to help with the taper. Today I’m still on steroids, MTX and a biologic for my AS. I hope you get answers soon 🤗
Thank you - sounds like you have had a rough time.
I was on Pred for 2 years following the PMR diagnosis but every time I got to about 5mg I would have a flare.
My GP wanted to check my inflammation levels so I came completely off of Pred. The inflammatory markers were low in the blood tests so they thought that maybe PMR had been the wrong diagnosis and referred me to Rheumatology.
The GP has said if I can deal with it it’s better to not go back on Pred before I have the hospital appointment.
I am going to investigate if I can organise a private appointment (and check if it’s affordable) and take iit from there.
Have found for the pain pre diagnosis naproxen was the anti-inflammatory that helped most. It can make you sick and can effect your kidneys so two tips, eat before you take it and lots of fluids after. Other opioid painkiller not as good as personally made me sick. Ice I use when flaring found the ones you put in freezer best always wrap them in something and not directly onto the skin. Also love self massage using anything anti-inflammatory or even essential oils. Exercise such as squats if you can do them can build muscle memory and increase support. Sometimes you just need to find what works for you personally and most people on here have been through their own journey and are very helpful. Ps there are also videos on you tube about how to deal with hip pain from arthritis but remember pain is not a good thing don't try to push past it as it's our bodies way of telling us something is wrong be aware in all ways of what it's saying.
Hi there, I had polymyalgic-onset RA as well, though PMR wasn't ever diagnosed because the symptoms progressed in just a few months. Before diagnosis I was prescribed the anti-inflammatory naproxen like Bethany02 has said above. It helped for a while and might hold off some inflammatory symptoms without you needing to start on steroids. But I really hope the rheumatology appointment comes through very soon to clarify what's going on for you.
Write a list of all your issues and discuss your GP they can help whilst you wait for a diagnosis. We have all been here… don’t be put off. I hope for your sake it is not chronic but if it is you will get great support and help on this group site. Take care 💐
Hi, what you are dealing with at the moment is like trying to catch fog. With luck you will get to the bottom of what is going on and then you can deal with it. As for me I am on sulfasalazine and it has generally made my life so much better. So please take a breath, be kind to yourself and know you always have help and a friendly voice on this site.
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