Pallindronic arthritis : Saw rheumatologist today for... - NRAS

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Pallindronic arthritis

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Saw rheumatologist today for first time she thinks I may have pallindronic arthritis but unsure as gp originally said pmr and have been on steroids for a year - hadn't read anything about this type so hopeful can come off steroids and manage on painkillers - any one have similar story or info thanks

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Chocnbags

Hello I have Palindronic RA I was diagnosed last year after 6 months of random pain , started with a frozen shoulder , The pain was unbearable I couldn't move it at all , then it moved to my foot that was all swollen . And my hip which was the worse pain ever ! I kept going back and forth to the doctors who told me I had fibromyalgia ,but I knew it was more than that ,so I pushed for more tests ,that's when I tested positive for Ra ,was refered to the hospital . Where I aslo tested positive for anti CCP factor . Since taking hydroxquine flares have subsided ,I also take methotreaxte .hope that helps x

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Libluce8

My husband was diagnosed with palindromic rheumatism in 2001. Random pain and swelling that came and went. He managed on naproxen until his GP referred him to another specialist in 2010 and was told he had zero negative RA. He is now on methotrexate but this has made little difference to the pain and has caused more lasting side effects and issues than he ever had with the RA whilst on naproxen. According to his specialist the RA is not that active, never has been in the usual places you would expect, but he still has random pain and swelling mainly in his shoulders, hip and wrists. He has to keep on the methotrexate as it appears to have done something to his immune system and when he comes off it he gets an intense itchy rash, which only goes when back on methotrexate, vicious circle. He's tried other DMARDS but all have had bad side effects. He is now also being tested for early on set dementia, which the neurologist thinks methotrexate has contributed to. Be guided by your specialist but if you can avoid the DMARDS with palindromic RA do so. Hope you get sorted. X

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Hidden
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in reply to Libluce8

Oh dear that is so sad I hope things improve for you ( both ) it must be so difficult

I agree that if I can cope withoutDMARDS I will I think that was why go was reluctant to refer me however I didn't want to stay on steroids and really wanted to know what I had if possible - take good care of yourselves- are you having investigations re ? Dementia - (if confirmed take all help you need / can get -Alzheimer's society is excellent for information and advice - do monthly newsletter and herald nurses support carers )

I will follow if that ok if I can find it !

Sometimes I write lengthy reply and lose it too so here goes to make sure I post !!!

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brightangel

Hi Libluce8,

Interested in your comments.

You mention The neurologist connecting mtxate to early onset dementia.

I was having stroke-like symptoms and my gp put it down to stress.

Based on your comments I am thinking the m. is responsible for that and

i have come to expect for the permanent bloating and ongoing decline due to me thinking it is screwing with my digestion and immunity.

Is there any literature you are aware of that confirms that as my gp has

never made any connection despite months of illness and decline?

Thanks.

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Libluce8

There's a fair hit on the internet re side effects of Methotrexate and brain fog - try that search. His RA specialist told him Methotrexate doesn't cause this problem. The neurologist he is seeing said methotrexate can cause dementia to progress. Research has also found this: Methotrexate may cause the following symptoms that are related to brain fog (forgetfulness; confusion; slowed thinking; distractability; depersonalization; inability to remember words when speaking or writing):

Confusion/disorientation.

Dementia

Encephalopathy

Progressive multifocal leukoencephalopathy. This symptom may occur with long-term high dose use

Pseudobulbar palsy

Reduced thinking ability

Reduced thinking ability/mental clarity

Stroke caused by blockage of the arteries that supply blood to the brain

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brightangel

Hi Libluce8,

Thank you for that. Wow, nobody tells you this stuff.

I wish my once helpful GP had considered my symptoms

(some of which are as you mention above), to be related

to the Mtrx8 in which case I certainly wouldn't have stayed

on it as long as I have. The last 8 mths or so It's like I have

zero life yet and whilst i have complained of my life getting

smaller and smaller due to pain etc. not once did she acknowledge drug related side-effects but rather put stuff

down to my crap family situation etc.

Thanks for your help. This site is arming me with personalised

information which not only helps me realise that i'm not alone

but that I'm not crazy either and there is more of a reason

to my diminishing brain capacity than straight out depression

etc. where they seemingly try to blame everything but medication. Cheers.

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trojan14

My GP thinks my RA may be pallindronic. I started Methotrexate a year ago, and its worked really well for me, with no side effects. So my dose of MTX is gradually reducing- now 5 tablets per week, compared to 8 a week when I started. I see the consultant in two weeks time ( this is my follow up appointment from last May!!) so will see what he says.

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in reply to trojan14

Good to hear positive news - would be good if you could know for certain and know no damage following flares - good luck hope you continue to improve

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Rosieapple

Hello there, my Rheumy thought I had Palindromic RA or Migrating polyarthritis which they treat as RA. Mine started in the left groin then to shoulder then to chest area then to right shoulder then to right hip then to knee then to foot etc staying in one area for about 3 days before moving. Eventually I woke up one morning and I could not move for the pain all over. The local Hospital put me on high dose steroids which fixed it but steroids no good for you. Once I got my lovely Rheumy here, he put me on 20mg methotrexate and 10mg Arava and weaned me right down to 2mg steroids. However the bloods came back still with inflammation. I could not go on DMARD injectables as had had bladder cancer. He got me onto Mabthera infusions in February and I am off steroids and Methotrexate completely now and feel just like my old self. Very grateful to have my life back, so I hope your specialist can get you off the steroids and find a good medication that is right for you too.

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pocohontas1

Hi Sue730. I was told I have palindromic rheumatism a month ago and that for some people the condition burns out on its own. For others they get repeated flares and some go on to develop rheumatoid arthritis. Difference between PR and RA is that there is no damage to joints after acute flares in PR which is good news. However if the flares are happening so often or so severely that you can't function then that's clearly not good. I am apparently as likely to get RA as any other "normal" woman as my rheumatoid factor and anti ccp levels were negative. I am seeing rheum again tomorrow to discuss treatments. This would be hydroxychloroquine as first line I think. Good luck, I hope you get help soon.

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hawker955

Is that artritisthat feels the same from front to back or am I getting confused? :)

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Hidden
Hidden

Think it says after palindrome which is same word backwards and forwards ! Maybe because the little I've read up to now seems to say it ends where it starts sometimes !

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Fennella02
Fennella02
in reply to Hidden

Hi Sue. Hope you don't mind me tagging onto your post but I'm interested to know what your symptoms are and why your Rheumy is suggesting PR rather than UCTD?

I have had Sero neg Lupus for 25 years with many features consistent with milder lupus but I experience dramatically swollen, red joints that can swell within an hour of pain onset and disappear just as quickly. The flares can last hours, days or weeks. The swelling that I experience seems to be much greater than that of other lupus sufferers yet I have no residual joint damage which is why Sero neg RA would not apply to me. My diagnosis now states SLE/UCTD yet no one has ever suggested PR and I wonder if there are particular diagnostic criteria that I don't satisfy? I test negative for all the usual antibodies (but have low C3C4) and assume the anti CCP factor has been done as a matter of course. I'm sure treatment would be the same regardless but still curious nevertheless.

Many thanks. Clare x

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Hidden
Hidden

Hi Claire

Of course I don't mind !

You sound very knowledgable and seem to have had lots of tests which as yet I haven't.

To be honest I think it's just from history I gave - and cannot be sure as have been on the steroids for over a year now - I asked for referral as just wanted to know what diagnosis specialist would reach and what treatment -

I started with really bad pain in shoulder but did seen to be more muscular moved to leg and seemed to be in different places - then seed to change to wrist fingers knuckles thumbs very specific very painful for 1-4 days then going - when I'm ok I can sort of feel where it's been ( similar to after having a really bad cramp and feeling where without pain ! ) and able to function fine - she has said to stop steroids over next few months and will review then ( think I'll keep a diary as when well feel like a fraud ) this site is very helpful but loads different tests treatments and symptoms ! I was pleased that I had seen nothing at all about this palindromic - and think if any this is the one to have ! If don't go onto ra and in hopes that it will remain manageable fingers crossed think I am back again at beginning of a journey - sorry I don't have knowledge of tests etc tending just to follow advice at present ( and maybe bury head in sand - also think if you ask gps about tests etc they get a bit shirty lol so relying on rheumy who Dox seem very good

Take care 😊

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Fennella02
Fennella02
in reply to Hidden

Thank you for that. It's very interesting and I suspect that diagnosis of these sero neg connective tissue diseases is affected by which Rheumatologist you see and which profile is the best match. I hope your steroid reduction goes smoothly - I do better on higher doses but am currently down to 6mgs. Someone I know has started getting stress fractures very easily in her feet from prolonged steroid use and it has encouraged me to reduce.

Thanks again. Clare 😊

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Hidden
Hidden
in reply to Fennella02

Are you doing one of the very slow reductions ? I had started that from 5 and now on 4 but 1mg a month from now and if needed take anti inflammatory - hoping I will manage that !

It seems to be such a wide ranging illness with so many variants - I am pleased I asked for referral though as had been left to "manage" with steroids as I thought and felt like I had no idea lol 😊

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Fennella02
Fennella02
in reply to Hidden

I'm now doing 0.5mg per 3 - 6 months but I'm really feeling unwell so I shall sit tight at 6mgs until I know exactly what is causing the pain and malaise.

I too have 'managed' my pred since 2012. My Rheumy was nervous of making me unwell by reducing the dose so we ended each appt by agreeing to continue at 15mgs. I've been lucky with no side effects but I was probably on borrowed time. . . 😊

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Hidden
Hidden

Hope things settle for you - I think I am lucky in that at minute I'm either pretty ok or really in pain in one place and longest it has lasted is around 4 days which isn't the worst but always wondering is it going to go away this time ! Take care😊

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Twitchytoes

As Clare says I think it depends which rheumy you see as each has their own take on UCTD or Palindromic R or seronegative RA. Mine diagnosed me with the latter in 2011 after 9 months of poly arthritis which finally settled for a year or so in my knuckles and fingers.

It appears to gave upped and left now -.unfortnately leaving me not in remission, but with other autoimmune issues which actually bother me more as they make me feel very unwell and fatigued. He has never suggested mine was palindromic although I am seronegative and presently most of my pain is in my nerves and blood vessels rather than in my joints. There can be overlap with PMR too but the steroid approach is much the same for all these autoimmune diseases.

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Hidden
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in reply to Twitchytoes

It does seem confusing and difficult to make diagnosis by what everyone is saying ! :(

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Fennella02

I'm with you on that one Twitchy. Pain we don't understand is hard to manage and scary too. The swollen joints for me are little more than an inconvenience these days, I've grown old with them and it will seem almost strange if I can ever stop wondering when the next one will be along. Last week was uber tough with a sizeable (literally) flare of my knee which has now completely resolved but this week I feel really ill with lots of non-joint pain - not sure what's causing it yet.

I think I recall that you are having your much anticipated hospital appointments tomorrow - everything is crossed for a carefully planned and highly productive approach. Best of luck and thinking of you x

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Twitchytoes

Thanks Clare - as always it's been like doing a job application or revising for big exams for these two appointments. As usual my expectations will most likely be dashed so I'm trying not to have too many!

On the plus side I've rediscovered my lavender wheat bag tonight - jaw and neck in brief respite - bliss! The pain has been record today - a good 8/10 and not a swollen joint in sight. I'm trying to stave off tummy issues so have not touched dihydrocodeine today so feeling my warrior halo glow. X

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Hidden
Hidden
in reply to Twitchytoes

Best of luck hope it does meet expectations

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