NOT PMR but Rheumatoid Arthritis.....how diagnosis was missed. Lessons learned

Hello all...it is a while since I visited the forum but I would very much like to share my experience especially with those who struggle to improve.

In march 2016, aged 62, I was Diagnosed with PMR , needed 40mgs of pred' before any benefit was felt. Complained of hand pains from the beginning and already had 'osteoarthritis of foot and knees. Did not have GCA but was told I had a large vessel variant which I found very alarming!

A year went by and I attempted to reduce the steroids, never really understanding whether or not I was having a 'flare' as the muscle aches never really went. I was becoming more and more immobile and anxious. I had reduced the steroids to 8mgs.

Eventually in march 2018 I was told I was in remission, that my blood tests were all normal. I was puzzled as I certainly didn't feel better but accepted the verdict. I decided the steroids were having little effect anyway and on advice on being discharged I reduced from 3mgs to nil over 4 months. The muscle pains and weakness continued, I felt like an old lady before my time. 2 months later and feeling more and more depressed I paid to see a private Rheumatologist, mentioning again that my hands were a bit sore. I was told the same as before. My inflammatory markers were within normal range, though had risen to the top end.

Eventually , another 4 months later I paid yet again to see someone else. One look at my very slightly puffy hands, he ordered an MRI and repeat blood tests.

The relief was immense....At last someone was listening to me!

I was diagnosed with Polymyalgic Onset RA from the MRI !!!

The important bit to tell you is that all my blood tests and Xrays had been negative and that this is not uncommon with RA. As a result the diagnosis is easily missed

I think it important to appreciate that RA and many of these auto immune diseases are difficult to diagnose and I do not hold with blaming Doctors to readily. My symptoms were similar to PMR . I do however feel that an MRI should have been ordered a lot sooner. that my well explained symptoms were ignored as my blood tests were apparently normal, (I kept a monthly record of my symptoms and a list of questions to ask! )

The end result is that I am now on different medication which takes a while to be adjusted and take full effect. I feel a lot better and the muscle pains have finally gone. I have been left with damage to my writing hand which may not get better. This could have been avoided if I had been diagnosed earlier. Annoyingly the foot and knee operations which I was about to have were delayed due to being on steroids. My foot is recovering and I am on waiting list for my knee! My mobility and overall fitness have really suffered with all the delays but at least the depression has lifted and I can look forward.

*lessons learned 😗*

Whilst on steroids I had many side effects, loss of hair, but beautiful nails which I am happy to say I still have! Many episodes of arrhythmia's, very swollen feet and ankles. I now have to wear heavy support stockings. I continued to have a trace of blood in my urine throughout which has now gone...this is not often checked and is perhaps worth asking for occasionally.

I got off the steroids faster than the 'dead slow' method. From the posts I have read, I do wonder that perhaps people stay on far, far longer than they need to and leap to put the dose back up too quickly?

Remember, the Doctors are trying to help you, so keep a monthly summary of your symptoms to help them

Don't give up but get a 2nd...or 3rd opinion!

The awful depression is really tough for you and family, for me it was the slow non progress and lack of answers. I was close to asking for anti depressants but not needed in the end.

My feet were never examined by the Rheumatologists. RA often affects hands and feet! The slight swelling below my thumbs were there throughout. * Early diagnosis is important to prevent permanent damage.

RA damages the tissues surrounding the joints first before the bone itself which is why Xrays often look ok.

There is a very good national RA organisation based in Maidenhead that has helpful advice on many aspects.

Thanks to Eileen and all you lovely people who contribute to the forum. I found it very helpful and hope this in turn helps someone else.

KBO....'Keep Buggering On' ! (Churchill)

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