Pmr or Ra, consultant not sure

JMC

I am female, 55 and was diagnosed with PMR Nov 2018, having presented with typical symptoms and blood test confirmation. Started with steroid and initially a dream start, on day 2 near total freedom of movement and no pain. As the dose became lower, pain returned and movement restricted. Consultant decided it could be PMR but it could lead to RA as it is in my family history and I am very young to have PMR. Went back to the original dose and started reducing again. Same happened, back up again and even more gradual reduction. Now at 6 mg but have pains. Pains are different now. Very soar shoulder (Can hear it grate when shoulders rotate) , pains around knees. Stiffness in knees having set for a while. It feels swollen around the back of the knee,. Making bending very difficult as it is painful. This is in both knees but more pronounced on one side. Knee keeps locking so when squatting it is very hard and painful to straighten. Swelling in my ring fingers and shooting pains with certain movements. Often pains in and around hips. X-rays of feet, knee and shoulders have been taken. There was not a clear discussion with the consultant but he said it isn't RA, some thinning of shoulder. Last blood test , November 2019, indicated no increase in inflammation levels. Finger swelling started after most recent visit to see consultant. No option to see consultant now. There's no good communication between GP and consultant and I feel lost between them. I am so worried I may develop RA and it is spotted not timely enough. I am desperate to get off the steroids. Feel in limbo at the moment, not knowing for sure what the matter is and how to cure.

helpline_team

Hi JMC

I'm sorry to learn of your worsening symptoms and the current lack of clarity around diagnosis. This would be a challenging situation at the best of times and must be particularly concerning during lock-down when you can’t see your consultant again.

Thanks to ChrisK for responding to your post. My apologies for not replying sooner: we have been very busy on the helpline. I wonder if you have already called us yourself by now. If not, please consider doing so.  You clearly understand a lot about arthritis already and it’s good you are aware of the potential for a missed diagnosis, which is important. If you call us, we can tailor the discussion and help you to decide what to do next to help move your diagnosis forward.

In the meantime, you may find the following links helpful:

https://www.versusarthritis.org/about-arthritis/conditions/arthritis/

https://www.versusarthritis.org/about-arthritis/treatments/the-inflammatory-arthritis-pathway/

https://www.versusarthritis.org/about-arthritis/common-aches-and-pains/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/

Best wishes

Mags, Helpline advisor

Bluebell7

Hi JMC,

I hope you get the right diagnosis very soon, it must be very frustrating for you.

Are you on just the steroids at the moment? Sorry to say, I still don't have a definite diagnosis, Drs not sure if I have RA or fibromyalgia.

Sending hugs

JMC

Bluebell7
I am only on steroids at the moment. It is frustrating not to be able to get a clear diagnosis.