NOT PMR but Rheumatoid Arthritis.....how diagnosis was missed. Lessons learned
Posted , 15 users are following.
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)
2 likes, 8 replies
EileenH Guest
Posted
Anyone who needs 40mg to get PMR symptoms under control needs a rethink and further investigation - even if the docs get out is "large vessel GCA". I probably have that and it responded to 15mg. GCA only needs high doses if sight is at risk - and it isn't because it always needs more, it is because it MUST work quickly.
You cannot and need not get it wrong at the outset - a PET scan will establish that, And an MRI should find other things especially if the joint erosion has started. I had hands and feet problems - but they responded to 15mg too, if they hadn't I'd have been pushing for more. And a good doctor should have that flagging up without the patient having to protest. The trouble is it takes too long to get an MRI - that needs to change.
Guest EileenH
Posted
I do agree that MRI should be on the NICE guidelines. I had a CT scan on diagnosis. Was told not GCA !
hope you are doing a bit better Eileen?
margaret22251 EileenH
Posted
Hi Eileen i waited three weeks for mine, it was at Desbury hospital, and it was one of the new MRI scans,
mike23430 Guest
Posted
Hi Clare,
Thank you for all the information on your Historic problems Re: PMR or RA my wife has been suffering now for 3 and a half years with no improvement with same Mobility problems as yourself...she has an appointment to see Rheumatologists in August, i will come with her armed with your info.
Thank you so Much...Mike...........(we shall never surrender)
Guest mike23430
Posted
goodluck. Do hope you get answers
patricia43291 Guest
Posted
Clare,
What is the new medication that they put you on for the RA?
Thanks
BettyE Guest
Posted
Much to ponder in your account, Clare.
I don't think I could be quite so forgiving about the length of time it took to get the RA diagnosis and I'd certainly resent having to pay for two private consultations.
You say that you gave a "well explained" account of your symptoms and, from reading the account you have given here, I certainly believe you yet you were fobbed off.
There is a saying I've quoted before ..." if you want to teach Johnny Latin, you need to know Johnnie as well as Latin" and those responsible for training doctors might do well to ponder this.
I have a friend and neighbour who is a long term RA sufferer and she says the same as you, that there is good support. Just being listened to is a great relief. She'd certainly endorse your advice to KBO.
I have knobbly but not puffy hands and feet but I'm pretty sure mine is bog standard OA which was greatly relieved while on steroids. It's a different pain from PMR and, as I reduced, my doctor took great care to ascertain that my flares really were PMR and not OA.
Best wishes and thank you for such an interesting account.
Michdonn Guest
Posted
Good for you Clare, may the rest of your journey be smooth continue being positive. 🙂