Palindromic Rheumatoid Arthritis

Mat48

Yep PA is a rotten thing, fools you into a smile and then arther bites! I seem to suffer less time between bouts on top of all the permanent aches and pains. This has been an ongoing theme for 35 years now. Keep smiling.

Did you mean to write PA I wonder? I think that is Psoryatic Arthritis rather than Palindromic Rheumatism - which this thread is concerned with.

I'm really troubled by the ambivalence of doctors to conditions such as PR and Fibro - I don't understand why all these specialists don't just get together and make proper well informed decisions? The Americans (ACR) seem much more with it and they have their own body which assesses each arthritic condition so they seem to sing more from the same songsheet even though it's all private.

All these so-called experts need to get together and find overlaps it seems to me. For e.g I saw a gynae yesterday who had never heard of joint pains attending menopause and yet it's listed on all the sites for meno as a classic symptom of this period of huge hormonal flux? I'm sure this polarisation of specialist medicines is mostly a UK problem. A very open-minded GP friend of mine had never heard of PR and looked it up using the link I gave her. I think she was sceptical because she didn't mention it again - which isn't like her but I suppose cynicism pervades the whole profession sometimes - look at M.E? But PR seems fairly well-established now and is on the American Rheumy site too. Good luck to you all with PR - I so hope yours is the disappearing sort eventually. Mat

ironic

Hi Yoyo,
First of all welcome to the forum. I was first diagnosed as palindromic and it is a strange one. You never know what is going to hurt from day to day. I called it my dancing pain, and yes you cannot believe that there is no evidence of damage after an attack.
I also was put on Hydroxy as to be honest I was too scared to take anything else. Mine was and still is 400mg a day.

I am on mtx and I have had my ups and downs with it. I am sorry that it wasn’t the one for you though.
Yes the tiredness does get you down but that comes with all types of ‘Arthur’. I was able to cut my hours down but I know that is not always possible for many people.

Sadly mine has progressed to RA and I have got some damage but I have a very high RF in my bloods (sero-postive). It is very confusing with all the different names so it can be very frustrating and frightening.

Lv, I x

BikerAngel

Hi, when I first started getting the swelling and pain it was only in my hands so got referred to the rheumy who then diagnosed me with PA as no factor in my bloods and I was like what!! I went home and researched it and my symptoms did look very like all the ones shown so I thought oh well just deal with that. However at my next app I was then diagnosed with sero neg RA as it had progressed to more joints and I was in mid flare so he said no longer PA. After 5 years they have now just decided to diagnose me with plain old RA so I have no idea how all this was decided as I still have no factor in my bloods but it is in so many joints now and I have been getting a big flare more often. Good luck in your research on PA and sorry I can't be of more help with it.

Mat48

Poor you - but I think PA stands for Psoryiatic Arthritis as opposed to PR which is the Palindromic one that I think you mean you were diagnosed with?

I like this forum a lot because the boundaries overlap and merge and distinctions fade a bit in the face of solidarity of understanding that pain is pain is pain!

I wonder what my rheumy will come up with when I finally get to see him two weeks tomorrow? I do hope it isn't PR from what others have said on here - but I'd rather have certainty than the "inconclusive" i received from him last time. Mat x

Shooter

Thanks all for posting this I thought I was going gaga

YOYO

ruthross wrote:

Hi everyone, and especially Yoyo.

I too have Palindromic Rheumatism. Was diagnosed 7 years ago. Happily, it has yet to develop into RA, but it has not cleared up either. And yes, sometimes the fatigue is as hard to cope with as the chronic pain. I can get attacks in single or multiple joints. It can last for hours, days or weeks. Flare ups can move from joint to joint in a matter of days. One day I can be enthusiastically dancing in a zumba class, the next day I need a stick to walk, or need my partner to feed me because the pain and paralysis in my hands is too much.

It is nice to find others who experience the same thing because sometimes you really think that you are going mad. Friends don't understand and they also don't seem to get that it is a chronic condition that, as yet, I have been unable to treat successfully. I am on hydroxychloraquine but it seems that it's only preventing me from deteroriating rather than stopping flare ups.

Nothing shows in my blood - even when I have obviously got inflammation. I am treated as a 'lower priority' at the rheumatology department because the likelihood of joint damage is lower than it is with RA. Yet I can still have weeks of pain, cannot work full time and am currently struggling not to get depressed. At the moment, I'm finding the unpredictable nature of it really hard to cope with psychologically. So, even though my flare ups are quite mild right now, my ability to cope seems to have disappeared.

For me, the diagnosis of PR was a relief, but yes, I do think that it's still a bit like being in limbo because the registrars that I often see know nothing about it and treat it as less serious. If I had a diagnosis of RA, I think maybe I might have been treated better on the NHS. Currently writing an official complaint over a consultant who told me that "My appointment had already taken 15 minutes and I'd already taken up half an hour of his time" when I wanted to discuss something with him. Even though he'd wasted at least half of that time asking me questions that could have been answered had he bothered to read my file.

Anyway.... I wanted to say hi and to reassure Yoyo that it's definitely a weird one, but you're not the only one! - though, as you say, you have now been diagnosed with RA. I hope you find a treatment that works for you.

Ruth

Oh Ruth I am so sorry you ahve had such a rough time, I do know it very much depends on the Nature of the Rheumy Nurse or Doctor who treats you and how much they undertstand the condition as to how much support you will get. My Rheumatoligy Clinic is a mix of wonderful, caring and knowledgeable professionals and absolute idiots who wouldn't know a flare if they fell over it! :x I had both diagnosis of PR followed by RA within a week or so of each other. The 1st diagnosis of PR came through the post from the consultant, I was shocked to receive it this way and feverishly researched what PR was. Wheni received the appointment to see a Specialist Nurse in the Clinic she took one look at me and ordered immediate blood tests (results within 1 hour) and tried to admit me to hospital to try and stabilise me as I had progressed to RA and had incredibly high indicators! this specialist nurse and one other are superb and sort me out no trouble if I am lucky enough to see them. However there is another nurse and a junior doctor that I have had a few run ins with, they are incredibly unfeeling, unknowledgeable and shouldnt be in the business of caring for people! :roll: PLEASE try not to get too low or upset about it, I know by my own experience that stress and anxiety definitely bring flares on. Do you think there is any mileage in asking your GP for a different hospital? my hospital is not in my home town, I travel to a nearby city and much prefer the treatment there than if Ihad to attend my local hospital. Keep your chin up, try ot keep smiling and most of all, remeber there are lots of us out there suffering the same thing and we will all have felt very low. Keep in touch and thank you so much ofr responding to my post. YO xxx

YOYO

Mat48 wrote:

I'm intrigued that they checked you out again so quickly Yo Yo. Its good that they did of course and it's very interesting that they've kept the palindromic part of your presentation despite diagnosing RA?

I did check out PR but found it very confusing because it all seems to be down to which rheumatologists believe in Palindromic Rheumatism and which ones believe it is actually simply the early stages of RA - which can sometimes burn itself out. For most RA sufferers the disease is fairly palindromic I believe? I think because that's the nature of the disease - so not sure what the merits of having them catagorised separately are, as it just seems to make the whole thing more isolating for those diagnosed with PR - who may or may not go on to develop full blown RA?

PR sounds like a continuation of the limbo-land I've been hating to date to be honest. But I suppose there is a percentage who completely recover and that should make me feel more hopeful that i might be in that category if I do turn out to have PR? But the hellishness isn't just down to the pain and stiffness and upredicatable arrival and departure of this pain but it's about all these definitions and distinctions - they bother me terribly!

Reading the experiences of people with PR reminded me tales from my brother-in-law who is partially deaf and grew up as an only child in a hearing family in a hearing world. My sisters are both profoundly deaf but somehow that seems to have been an easier experience than his was - caught between the two worlds?

Sorry I do hope this doesn't offend you good people with PR? I guess I'm just very unnerved at the moment by not having a diagnosis to get my head round yet. And then even when they take more specific blood tests such as the anti-CCP it takes ages to find out you are negative from one rheumy apt to the next. And if things can change and you can go from being sero-negative one week to sero-positive the next as you did YoYo - then surely they need to be clearer about these distinctions and stick to them UK wide?

Don't mind me tonight though please - I get mood swings just now with these steroids and the roller coaster is heading down the way tonight!

PS and yes the name YOYO is great - you've played a blinder there!

Thanks again Mat, I know my close together diagnosis may sound bewildering, I received my initial PR diagnosis through the post from the Conultant who informed me a Specialist Nurse appointment would be sent to me for an 'Education' visit to explain all about it! when I arrived at the Nurse 'Education' visit I was so poorly she ordered immediate blood tests with results within the hour and tried to admit me to stabilise me as my indicators were so high! she siad it was def full blown RA and needed stabilising. However, they didnt have a bed but she was wonderful and I was seen 3 times a week for a couple of weeks and they stabilised me with steroid injections and tried me on a long list meds, none of which agreed with me. I have stated to another member I believe the nature of the person treating you depends on whether you get the treatment you need. 2 of my Specialist Nurses at the Hospital are wonderful and I feel blessed to have them on my side. The rest of the team leave alot to be desired and are very uncaring and unknowledgable, I try to avoid them like the plague!
I have to say I bury my head in the sand when it comes to understanding the blood test results, you understand the counts etc, I only know when I was very poorly alot of my indicators were very high, they haven't been quite that high since but I have def felt as poorly so become confused about the condition? BUT I have never been given oral steroids, do they explain why they prescribe steroids? I do hope you feel a little better soon, I know how disheartening it can all be. Chin up and chat soon YO xxx PS the YO represents my name initials but i think I like the interpretation of the Health YOYO!!!

YOYO

ironic wrote:

Hi Yoyo,
First of all welcome to the forum. I was first diagnosed as palindromic and it is a strange one. You never know what is going to hurt from day to day. I called it my dancing pain, and yes you cannot believe that there is no evidence of damage after an attack.
I also was put on Hydroxy as to be honest I was too scared to take anything else. Mine was and still is 400mg a day.

I am on mtx and I have had my ups and downs with it. I am sorry that it wasn’t the one for you though.
Yes the tiredness does get you down but that comes with all types of ‘Arthur’. I was able to cut my hours down but I know that is not always possible for many people.

Sadly mine has progressed to RA and I have got some damage but I have a very high RF in my bloods (sero-postive). It is very confusing with all the different names so it can be very frustrating and frightening.

Lv, I x

Thanks I, appreciate your kind response, I have also developed into RA and i can fully relate to your symptoms, lets try and keep our chins up! at least while we can! Cheers YO xxxx

YOYO

traluvie wrote:

Hi yoyo,

Glad you posted on here as advised, can see you have had a lot more responses and some kind words,

I have been busy with the kids the weekend so didn't post..Hope you are settling in ok luvie and i look forward to seeing you around..xx

Thank You, I have been overwhelmed by the kind and thoughtful responses YO xxx