Test results
Posted , 6 users are following.
Hi all,
Hope you're all having pain free days. I had a doctors appointment today to review my latest blood tests. My ESR is still raised and the rheumatic screening (done for the first time) has also flagged up. My doc was already planning to refer me to a rheumy anyway, so these results just confirmed it. I have my referral and I get to go via BUPA through work.
My question though is that for the first time, my GP mentioned RA. This scared me rather as my grandmother had severe RA and I remember clearly how she suffered. Has anyone thought they had PMR and gone on to develop RA or been told they actually have RA and not PMR? I'm not trying to self diagnose, just interested in the experience of others.
Thank you
0 likes, 11 replies
Daniel1143 Cakegal
Posted
My sense is that my Rheumatologist was off base, and I continue to believe what I have is PMR. My general doc agrees. Truthfully, I think many of the specialists are throwing darts in the dark. In the end, they seem to know very little about these auto-immune diseases and often speculate on the diagnosis. My experience, anyway.
gillian_25383 Cakegal
Posted
EileenH Cakegal
Posted
You say the rheumatic screening has "flagged up" - but flagged up what? Is it one of the specialist things that is showing positive or is it "just" rheumatoid factor? If it is the RF, then it is fairly meaningless without the much more fancy stuff. People can be rheumatoid factor positive and be perfectly healthy and there are people with RA who are what is called seronegative and show no rheumatoid factor. It is all just part of a jigsaw and it is the whole picture that is important.
Your grandmother will have had RA many years ago - I've no doubt she had twisted joints and was very disabled and in a lot of pain. There are many drugs available now which, when started early enough, as soon as the diagnosis is confirmed, prevent the joint damage advancing - they are called DMARDs, Disease Modifying Anti-Rheumatic Drugs. They do what it says on the tin: they modify the progression of the disease and prevent the long term damage your grandmother suffered. It is very rare to see people with such badly damaged joints these days.
In some ways, RA is preferable to PMR since there are a lot of drugs which have superb results these days and which will be funded where needed - whereas for PMR there is pred, the cheapest version only in the UK, and sometimes life seems to be a constant fight to be allowed to take it - at all sometimes and even when, enough.
Don't panic - wait for the expert's opinion on RA, or other form of arthritis.
Cakegal EileenH
Posted
Forgive me for not replying sooner. My munchkins (aged 1 and nearly 3) keep me so busy!
Yes you're absolutely right. My grandmother had terribly swollen and unusable joints and was wheelchair bound towards the end of her life (she died of cancer at 67). I've always held a quiet fear that I may end up with RA, but I have tried to educate myself to know that it's not hereditary and has many other factors. As you do rightly say, wait for the rheumy and their expertise.
The test the GP ran showed "moderate". He said it was the general test for a rheumatic marker. My ESR levels have been 29, 39 and 53 depending on the various blood tests over the past three months. I'm also consistently anaemic.
Ps happy Easter ☺️
EileenH Cakegal
Posted
Yes - that sounds like "rheumatoid factor" which on its own is about as much use as the proverbial chocolate teapot.
Being consistently anaemic is a sign of "something autoimmune" - what it is remains to be seen.
beatrice74480 Cakegal
Posted
EileenH beatrice74480
Posted
"Normal range" is the span of reading you can get if you take blood from thousands of healthy people and measure the ESR. Some will have very low figures, some with have much higher figures, most people will have something inbetween and the normal range is the lowest to highest that you find in 95% of the people. It doesn't matter that 20 is still "within normal range" - it isn't YOUR normal, your normal is down in single figures. Your neighbour might have a normal level that is 15, in that case 21 wouldn't be very high relatively speaking but for you a reading of 21 is three times higher than it should be.
I would say your PMR is still active and you still need a very low dose of pred to be comfortable and prevent the inflammation building up. If 2.5mg pred keeps you out of pain it isn't going to do much harm - it is a very low dose. If you leave it very long the inflammation may build up to the stage where you are as bad as you were before. I hope that doesn't happen - but it could.
EileenH beatrice74480
Posted
"Normal range" is the span of reading you can get if you take blood from thousands of healthy people and measure the ESR. Some will have very low figures, some with have much higher figures, most people will have something inbetween and the normal range is the lowest to highest that you find in 95% of the people. It doesn't matter that 20 is still "within normal range" - it isn't YOUR normal, your normal is down in single figures. Your neighbour might have a normal level that is 15, in that case 21 wouldn't be very high relatively speaking but for you a reading of 21 is three times higher than it should be.
I would say your PMR is still active and you still need a very low dose of pred to be comfortable and prevent the inflammation building up. If 2.5mg pred keeps you out of pain it isn't going to do much harm - it is a very low dose. If you leave it very long the inflammation may build up to the stage where you are as bad as you were before. I hope that doesn't happen - but it could.
beatrice74480 EileenH
Posted
EileenH beatrice74480
Posted
I had/have a couple of friends who live/d with the same problem. One's husband developed it after a head injury at work in his 50s and the other lives with a cousin who, now in her 80s, has early dementia. They have both managed well for some considerable time with good "memory clinics" - not sure about medication though. Little notes all over the place - and the married friend had 2 almost identical kitchens, one in the UK and one in Spain, which her husband could actually manage to produce food out of if he had written instructions. Which is more than my husband could do now!
beatrice74480 EileenH
Posted