I was diagnosed with RA 20yrs ago & was quite bad in ... - NRAS

NRAS

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I was diagnosed with RA 20yrs ago & was quite bad in early yrs. Now i have short lived really bad flare ups. After being in hospital 2wks

anneileen profile image
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with neutropenic sepsis due to neutrophils being 0.4 they say it may not be RA but Palindrome Arthritis. Has anyone had low while blood cells or been told they have been misdiagnosed after many years and has anyone else heard of this palindrome arthritis. Im confused. Thanks.

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anneileen
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helixhelix profile image
helixhelix

Hi there, I've heard of it but only through reading rather than having this form of arthritis. What I understand about it all is that there's a huge family of similar types of disease that are all considered to be types of inflammatory arthritis. RA is one of them, palindromic arthritis is another. There are loads more with slightly different names. They can be quite difficult to tell one from another as they do similar things to you (inflammation, swollen joints, pain etc etc) and many of the drugs used are the same. I think you can also start with one type, and then over many years it develops into another. And sometimes it's only by seeing how you react to the different treatments that doctors can be sure which one you have. So I wouldn't get too worried that your diagnosis has changed, as sadly you still have an inflammatory arthritis. Perhaps the more important thing is how your symptoms are treated and whether that makes a difference to you! As ending up in hospital sounds truly awful. However, it does seem that although the attacks for this type of arthritis are dreadful, I think it causes less actual permanent damage to your joints than RA - so some small compensation perhaps? But I'm no doctor, so perhaps you should also ask your GP to explain it to you? Hope you're feeling a bit better now. Polly

bub124 profile image
bub124

Hi I've never heard of it but I agree with Polly. There are so many different forms of the disease... It was mooted a couple of years ago that I may have Ankylosing Spondilitis and not RA but the treatment is the same so whatever name they tag it with is irrelevant to a point.

The most important thing is that you keep in touch with your GP and Rheumy and ask them to explain it to you in more detail as, like Polly said, we're not doctors.

Hope you feel better soon B xx

oldtimer profile image
oldtimer

My rheumy says that he just calls mine auto-immune arthritis as I have damage to other tissues as well as the joints.

Palindromic just describes the pattern of joint swelling - that they come up and go down quickly. It's a good idea to take a photo of any swollen joints when they happen, so that the rheumy team can see what happens in between when they see you or they may regard your joint swelling as insignificant.

anneileen profile image
anneileen

thank you everyone, i appreciate any information and your comments are most helpful. xx

There is a site for Palindromic Rheumatism sufferers

palindromicrheumatism.org/.

I read it described as being like RA with a faulty starter motor - so that it can burn out and sometimes never even turns into RA or sometimes turns into it instead or just continues as Palindromic. I often think mine is palindromic because I have quick horrible flare ups that come and go and leave no trace - but then it has settled in my hands and wrists for longer periods so obviously not. As others have said you should ask your GP for more info.

Tilda x

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