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Should there be a separate community for Palindromic Rheumatism?

Just a thought, it does have very poor resources on the net, and maybe a separate community would help others with the condition. I know it can develop into RA but only in 30 to 50% of people who have it - so it is not inevitable.

Oh I was diagnosed with Polymyalgia Rheumatism in June but it has become apparant that I do not have PMR - though I am on steroids for PMR which is an unfortunate side effect of the misdiagnosis. I see my Rheumy for the third time in January and will have to convince him to re-diagnose me.

So hello everybody 8-)

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Hello, what exactly is it? This is a new one for me?

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I don't know, do you think there should be?

I don't have RA I have PsA. There are sites for psoriatic arthritis, but to be honest I prefer this one. RA, PsA, and indeed palindromic are all inflammatory disorders so it doesn't make a difference to me if I interact with a site specific to my illness. I just go where I feel must comfortable.

Other folks may feel quite differently though. 😁

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But they all have different effects etc. For example I was (mis) diagnosed with Polymyalgia rheumatica and now think I have palindromic rheumatism - both have different symptoms and different treatments, one size does not fit all just because it is a inflammatory disease.

Or maybe it could be a sub-community of the RA community?

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Well to be honest, even those people with RA don't experience the same symptoms. Some folks with RA are fine on methotrexate. Many more are not. Some people seem to struggle a good deal with pain and stiffness, whilst some others do rather better.

I guess it's up to you really. It doesn't bother me personally that most folks on this site have RA. We all experience pain, swelling, and take drugs such as steroids, nsaids and hydroxy etc.

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So throw everyone in together and say "but, all our conditions are different, do, what works for one doesn't work for all'.

Thanks for replying.

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You did ask the question. I was simply giving you my personal view. You don't actually know if you have palindromic rheumatism yet. You are being treated for polymialgia aren't you? Isn't it useful to be on this site regardless of what you have?

There is probably a site somewhere I would have thought.

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No, I have researched it, no forum, very rare condition, but I appreciate your input.

Trouble is, if I use this site, I will have to use a filter for PR.

And I know my symptoms aren't PMR more akin to PR, the Rheumy diagnosed me with PMR in a 2 min consultation - and stuck me on Pred, tough to get off with a misdiagnosis

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Oh. That is a shame. Sorry. Could you maybe start one on Facebook? I wouldn't have a clue how to do it, but there are loads of groups started up by folk. I joined a camping one! 🤗

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I am not a big fan of Facebook Hidden and my hand flare up which abated yesterday came back overnight so all I can really think about now is the pain :-( and the weird bruise which appeared on my other wrist

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Oh dear, I'm so sorry. Pain is a terrible thing. Wish I could help.

As for Facebook...I agree it can be cack. My account is very private. You can have it so that it's not public. I haven't got thousands of people I actually don't know on mine. Mine are all people I am actually real life friends with.

I hope things improve for you soon.

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Pred is a standard treatment for PMR and any other form of Vasculitis. vasculitis.org.uk/about-vas...

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I know poemsgalore1 , but I was thinking that if I had have diagnosed with PR and not PMR at the start by the Rheumy would I have been put on Pred? Though in truth I didn't see the Rheumy until 3 moths after the onset of the condition and the GP had me on Pred having tried me on Naproxen which didn't seem to work - although he ( and 3 other GPs weren't able to diagnose me. my blood tests showed raised inflammation markers hence the Naproxen and the Pred.

It just means tapering off, which I haven't been able to do, every time I flare I go back to the start (or the last dose that was effective in managing it). But this is day five of the current flare - I've only had one last as long before :-(

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You'd think there would be a site. I researched the heck out of it, and couldn't find anything for PA. Even with RA, the best site I've found is this one. In the UK. I'm in the US. All my searches show this site every time, amongst others of course. This is the only one I use.

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I'm not sure what I have, being reassessed at the moment but NRAS works for me. Lots of useful general advice.

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Works for me too. I tried a PsA site but I found it really hard to understand the layout.

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'General' advice! Bit loose considering the range of conditions, symptoms and treatments, just throw everything into the mix, with people with one condition advising people with another condition. Too vague.

I was told I had PMR and went to the excellent PMR site, believed all I read., did what they said when I asked questions, then slowly woke up and said, they have different symptoms to me, am I just atypical? No I have a different condition that needs a different treatment than I have been having for 9 months!

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Maybe there could be a topic in this community called "Other Inflammatory Diseases".

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That's sort of what I meant - a sub community or sub-topic. 8-)

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These diseases are all so complicated. I like your idea. I know that with RA symptoms manifest differently in different people. Same is true for PA. Finally, PR. Palindromic is the one that has the least information. I'm trying to understand what I have. At first diagnosed with possible PR. Blood tests all normal. My symptoms completely disappeared. I've had several flares and this one is the longest with more joints, but still bounces around. Well, to your point, I'd like to hear from others who have PR, especially because it seems so little is known about it. I'm anxiously trying to arm myself with as much info as I can. I can't get an appointment until March. If you know you have PR that might change what treatments you want to try. PR does no lasting damage to joints. Your medications could just be for symptoms alone. With RA meds need to focus on prevention of joint damage as well as symptoms. At least that's what I've gathered so far. Can I ask you if you ever have symmetrical joint pain? I didn't until recently. Now I'm having some. Same joint pain both sides at the same time. I'm not sure if that rules out PR or not.

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I had PR for some years. The pain would be usually in one joint, then flit within a few hours,to another one. Never bilateral. I was only given pain killers for this. Eventually I developed R A and the consultant told me I should have been treated for the PR and might not have developed it !.

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I'm not knocking NRAS, I'm just saying that a specific site for PR would be an added resource. Not that I would run it, I don't know enough about it and still have to be officially rediagnosed - my next appointment is on Jan 8th.

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I never said that you were knocking it! 😍

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Apologies Hidden What I meant was that you said that you were content with NRAS as a community for PR, I was just asking whether people thought a specific PR orientated community would be warranted or even supported.

Also my reply was to a much earlier post of yours but it appeared at the bottom of the replies list, losing context. Don't know why that happened.

Merry Christmas 🎄🎅⛄

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No problem at all. 😁 you have a good Christmas too.

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I have no idea what is needed to set up a separate Health Unlock site but if it is possible for an individual to set up and monitor or persuade one of the organisations to set up specific site then folks could be on both. I remember the days of the RA warriors site which had lost of information about alternative treatments with enthusiastic participants, I was a member of both. I don't think it exists in its original form anymore. If you think it could help you and others with the same diagnosis then look into setting something up. It may be a tremendous success. What's the worse that can happen; if there aren't enough folk willing to get involved due to it being very rare you will still have us. 😀

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Good point about its rarity may mean a lack of people getting involved Mall .

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They know so little about it I'm not sure it's as rare as they say. I'd wager many people get misdiagnosed with RA or another inflammatory disease when they actually have PR.

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Hi I'm not sure either .this forum is not just for RA it is for supporting other inflammatory arthritis as well it says that on the summary about this forum. I do know where you are coming from .RUMATOLOGISTS also give the same leaflets out on diagnosis as ra and they call it an umbrella ?.the setting up of a forum I'm not sure I think if yiur an organisation or charity you could maybe do it

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Vasculitis is also a rare disease. I have Rheumatoid Vasculitis, like all the other forms of Vasculitis, it's rarely - if ever - mentioned on here, but there is not only a wbsite for Vasculitis (www.vasculitis.org.uk) There is also a community on here for it, which includes PMR which you have been diagnosed with. Why do you blieve you have PR?

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There is a separate community on here for PMR and GCA healthunlocked.com/pmrgcauk. I believe I have PR because when I described my symptoms on the PMR community they say it is not PMR (and they have some good knowledge there) much more like PR. Then on reading more about PR. which I hadn't heard of before. my symptoms are pretty much identical to those described for PR.

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Hello

I have a diagnosis of acute seropositive palindromic rheumatoid - made 7 Years ago. My lovely rheumatologist says it is just a different manifestation of the same group of diseases, and that treatment is the same. She thinks that given time most 'cases' begin to show a more classic rheumatoid pattern - seems so with me. Some docs don't even consider it as a separate classification at all for that reason.

It seems that we don't fit into neat diagnostic boxes for this or that, and that it's more like a spectrum, or a group of overlapping circles. At least until more research lends more clarity.

there is a website for palindromic rheumatoid with some useful information, but not as good as this site, so welcome here - you won't be the only Palindrome!

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From what I've researched I've discovered:

*There is debate about whether PR is a form of RA or a separate syndrome.

*Somewhere in the ballpark of 50% of PR cases develop into RA

*There is no joint damage done with PR, but symptoms can be just as bad and debilitating

*Not much is known about PR, relatively speaking

*Both can be treated with the same meds

Don't know much beyond that.

When I first found this site I thought it wasn't going to be helpful as it was only for RA, which I may well have. I ended up staying around because I found it is a great place for information. It's a lovely community as well. So. PR, RA or whatever I have.....this is a great forum.

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Hi lovely you are right it is a lovely community. This site is mostly RA but not only ra it is for support for juvinile as well and support for any form of inflammatory arthritis as well it does say that on the summary about This forum .glad you like this helpfull forum have a good 2019 and hopefully less pain

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Thanks. You too. Happy New year!

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I know of the website, but there is no forum and a lot of pages are dead. Also not all people with PR go on to RA positivity janmary

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Whilst that is true if we can help one another with symptoms and treatments for symptoms-which we all do I don’t think the title of the disorder or the title of the group of which we are a member really matters.... what matters is there are lots of people here, all with a friendly ear, lots of advice and all types of arthritis and related conditions are accepted and welcomed!

So I for one welcome you and hope you get the support and advice you need from people here and also from your Doctors.

Have a wonderful Christmas and hopefully see you posting again soon xxx

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But if what you say is true, then we should just have one community called 'Unwell' and anyone who falls under that category would have to search the community until they found similarly challenged member's out of the myriad of similarly challenged but different members.

But like being at the GP

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Okay.

Still wish you a merry Christmas

And hope you find what you’re looking for forum wise.

All the best! X

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I've not had chance to read through your post but have you visited the Official International Palindromic Rheumatism Society site (IPRS)? They have a forum it might be worth visiting if you haven't already palindromicrheumatism.org

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Oh, I have downloaded the entire site nomoreheels, sad that there are so many dead links on the site :-( - the forum is alas no more but thanks for the reply

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Hello Theziggy

I have palindromic RA and use this site. I'm very happy on it and there is a wealth of expertise here.

You're right, there isn't a huge amount of info on palindromic RA out there, but in my experience my treatment has been the same as most other people's on this site with RA.

There are people here with OA, and some with OA and RA, but with time you instictively filter the posts that apply to you.

When I was first diagnosed I started with MTZ, and worked my way through HCQ, LEF and SSZ. (There is a pinned index of abbrevs. at the bottom of the site). I am still taking MT, have twice yearly infusions of RTX and take Naproxen daily.

This is a common treatment joureny, and many people here with RA receive the same treatment. My rheumy says I have RA as well, and when I was first diagnosed I was concerned that I had PsA, not RA, as I have psoriasis.

I can see why you're concerned, having been mis-diagnosed, but I think you have to leave it up to your new rheumy to make an assessment herself.

I sympathise if you have palindromic RA. It's hard to diagnose as in my experience it took years for the rheumy to actually see me with a severe attack. It was only when I turned up in very bad pain, off my head on Tramadol and wielding a sick bucket that she seemed to get how bad the pain was.

But I also know now that there are many people on here with RA that seem to experience exactly the same symptoms as me and indeed receive the same treatment, although their disease label is different.

Personally I'd stick around on here and give it a go for a while.

Hope you have some good pain relief for when things are very bad.

Best wishes

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Thank you very much StormySeas

What do you advise as pain relief as all my incidents/flares are extremely painful to the max

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Hi there

I use a combination of paracetamol, Oramorph and Tramadol.

I've been reading your other posts and your flares do sound exactly like mine.

There are loads of people here though who have severe pain and there are many ways of dealing with it. My drugs might not be suitable for you. Once your disease is under control bad episodes like you describe should becomes much less frequent.

With me, smallest, most inconsequential thing would precipitate a massive reaction and the pain was unbearable. Sometimes I just wanted to die.

Tramadol was prescribed but tbh it barely took the edge off the pain, plus it makes me sick. I don't think GPs understand the severity of the pain involved, and I was clueless too about what was available. It was only after a series of attacks that were so bad I couldn't bear it any more that I was given Oramorph.

The combination of the 3 drugs does slightly lessen the pain. You need to take them as soon as you know the attack is going to be bad, and I stagger them, so if they're 4 hourly I start with paracetomol and 2 hours later i start the Oramorph... and so on.

TBH I haven't taken Oramorph for ages as treatment has made the attacks much less severe. But I always travel with the drugs so I know I'm safe if I have a bad flare. I really feel for you - all I can say is that there is no need to suffer - there is pain relief available, you just have to access it.

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Thanks so much StormySeasStormySeas, sadly I am still on Steroids for the diagnosis of PMR, but this week's 5 day, three joint (same one twice) really took it out of me. My Oh, for whom I am the primary carer, eats tramadol and diazapam like smarties, yet neither are prescribed usually as pain killers

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Sorry to hear all this. Take it easy eh. BTW I don't think you should self-medicate with Tramadol without it being prescribed - there might be all manner of reasons it's not suitable for you and I am not recommending you take it.

What steroid dose are you currently on?

I took pics of my palindromic painful joints and showed them to the rheumy. It was very useful indeed....

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Dear Theziggy,

Please DON'T think that I'm being awkward, uncaring or anything of that nature but....Auto-immune Disease(s) come in a Considerable Number, of forms- which are Categorised into 'Named Conditions'. Within these 'Blanket Terms', there are various Categories, within these are Types and Strains- all, of which are slightly different. Some, of these Conditions/ Diseases overlap, some 'lead to' others, some do not, some exist in there 'own right' but many don't...and so on. Sorry, to ask this, but do we REALLY need another category? I personally have 'about five' Overlapping Strains, of Vasculitis. There might be names, for some of them, some might well just be classed as 'Variants'. Do you Take, my point, Ziggy? I have, more than enough 'trouble', Keeping Up with All the existing names, without adding a 'Whole Host' more- make no mistake it will lead to this.

I do take, your point, about 'Different Types' needing to be differentiated somehow. A, good Point, well raised Ziggy. It will be interesting, to find out, what Others think about this.

In the mean time, Have a Happy Christmas.

AndrewT

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Well, that's me put well and truly in my vascular box, so all auto immune conditions are more or less the same, even though they are treated differently for some weird reason, and most rheumatologist don't even agree with each other about them.

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Dear Theziggy,

Yes 'All Auto-immune Conditions are, the same'- except that there NOT. It's rather like saying All Christians are the same- well, yes they ARE in so much as we all Believe in Christ. However our 'Interpretations' vary, from- if you like- Branch, to Branch. A Presbyterian, whilst still believing in Jesus, could dis- agree Fundamentally with, another Churches, Communion Wine- for example.

Please don't think that I was, trying to, Be-little you Ziggy....Reading, my own post, back it Does 'Sound like it' SORRY! I wasn't 'Ruling' out, your idea, entirely either- I, really HAVE made a 'Hash' of this.....I'll 'Come in again', I think! All I was, trying to, say was Given The Complexity, Of Vasculitis, indeed 'Auto- Immune Conditions' generally perhaps we should be careful How many 'Labels', we generate....That's ALL really. I have clearly offended you, which truly wasn't my intention, for which I can only apologise. Unusually, for me, I'm embarrassed and 'Lost For words'- other than sorry, which I've already said. Please forgive my 'Rash', and Hasty, reply Ziggy. I meant no harm.

AndrewT

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You are forgiven, that was a rant and a half and nearly made me leave NRAS

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Arrhh. Don't leave!

We are all here to help, be helped, get advice and to advise where we can. One more good soul on here with different experiences can never harm.

Actually I must admit, in my many Yrs of auto immune /RA/ JIA etc I haven't come across palindromic RA /R..

Can I just ask, does it present a bit like fibro myalgia? Sorry if I'm completely wrong.. I'm just asking on behalf of a dear friend, who has recently become very ill, and they think it is fibro myalgia, but don't know for sure, and she's also been getting huge bruises out of nowhere.

Take care.

Jx

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I have no idea how it presents (very apt word given the time of year), I

Mine started out of nowhere I just got pain that increased in my groin which spread to my leg making it nearly impossible to walk, then subsequent attacks in my shoulders, hands, knees, feet, sometimes more than on site at a time which is nasty.

4 GPs couldn't diagnose me, though one did mention PR and said he had only seem one case in his days of being a doctor.

Then Rheumy said PMR after 10 minutes - I was delighted just to have a name for the pain - had not a clue what PMR was but was happy to have it ( isn't that weird), then many Google days later got to thinking that my PMR seemed much different to everyone else. A very wise person on the PMRGCA community suggested that it may be PR, and much more Googling lead me to believe that it was more like PR than PMR (though I have been told you can have both)

PMR is Polymyalgia which is similar to Fibromyalgia - but I have no idea how to differentiate between them - except to say the only treatment for Polymyalgia is steroids while Fibromyalgia can be treated by exercise and a host of other treatments. Does your friend get pains?

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Yes she's got really bad joint pains but no inflammatory markers, or heat, swelling in joints, so they are thinking more fibro myalgia.. She's waiting to see rheumatoid team.. But it's taking ages. Bless her. 😞

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Thank you Ziggy, you are a kind person, Merry Christmas to you, and your Kin.

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Hi, I’m pretty new on here, haven’t yet made a post, but do read others! I have PR and RA, I have done since the age of 24 after my first child! Took a long time to diagnose! It’s a very painful condition, but fortunately doesn’t leave damage unlike RA.. I’m on MTX now and both seem to be under control, but have a frozen shoulder and recently had 2 nerve root injections for my back and neck! I don’t know many people who have PR! I think being on this group is fine as they seem to go hand in hand!

Rach

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You have PR and RA?

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