Palindromic arthritis.

carolashley

I am a 55 year old female, and have suffered from attacks of severe joint pain and swelling for years, but don't have RA ? My new doctor has told me I may have palindromic arthritis. Looked it up on the net and found it to be very scary. I am booked to see an expert in 3 months time. Any help or advise would be very welcome.

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. There are many kinds of auto-immune arthritis (close on 200) and they can be a beggar to diagnose. I take it you are seeing a rheumatologist? They may well be able to shed some light on matters so my advice is this: start keeping a record of pain levels, inflammation levels (I used to measure my fat knees, my left at its biggest was 27" in circumference), tiredness levels, what helps and what hinders, what level of pain relief you need (are you taking any anti-inflammatory medication?) so that when you see this person they get a good all-round picture of how you are being affected on a daily basis. There's no need to write screeds but it may also give you some interesting feedback.


The net is not necessarily the place to find out about things but please stick to reputable sites. Arthritis does affect our lives and demands some changes from us but it's not the end of everything. Humans are very adaptable, I am shortly beginning my eighteenth year of this malarkey and OK, life is not what I would like, but it's the one I have and I have to make the best of it. I have psoriatic arthritis which has also led to osteo and fibromyalgia so I've changed much in what I do and how I do it. I can do a little less year-on-year but at least I can still get out and about, cope with the house (although I do have some help), spend money and socialise (when I feel up to it). I started aged 37 and am now 55. Please let us know how you get on - keep in touch because you are 'talking' to the initiated. I wish you well. DD

dibdab

Hello Carol,

Sorry you've had to find us, but hopefully we can give you a measure of reassurance. I'd echo DD in saying don't panic, or believe everything you read on the web :? .

I am 56, and like you had several years of undiagnosed joint pain and swelling-the doctor did several blood tests for RA all of which came back negative, and eventually referred me to a rheumatologist who diagnosed Palindromic Arthritis. It's an inflammatory arthritis which basically migrates from joint to joint. Mine eventually developed into Rheumatoid Arthritis, though I still don't have the blood markers for the disease-but the main difference is I now mostly have pain in symmetrical pairs of joints eg both wrists/ankles etc.

The treatment for both diseases is DMARDs (disease modifying drugs) that slow down(or for a lucky few halt) the progress.
In a nutshell, it's not great, but it's very much live withable , in the 7 years since first diagnosis I have seen some deterioration, had some painful joints and very weary days, taken lots of meds and had lots of blood tests. on the plus side- I live a full and active life, enjoy going out bird watching, staying home to knit and sew, read books and bake-in other words, doing all the same stuff but perhaps a bit slower and a bit less.

Your rheumatologist will give you lots of information, it may take time to find the right meds for you, but there's lots of options and lots of research discovering better treatments going on all the time. So try not to be too desperate-there's still lots of living to be done and lots of support to be had-just keep asking. There are some fantastic folks on here and between us we have lots of experiences to share- and many folk live full and fulfilling lives and never feel the desire to share their experiences with others on a forum like this.

Take care

Deb xx