Confused & in of your help

[Caza]

Hi, I haven't posted for awhile but read others daily.

I've been seeing the same consultant for 3yrs now,he's a strange but nice man who doesn't say a lot & quite often contradicts himself. My bloods are borderline (whatever that means) so he treats the symptoms not the results, although the scans of my hands show inflammatory arthritis. I've been taking Hydroxychloroquine now for 3yrs with a couple of steroid injections which have worked really well. I've tried stupidly to come of the meds twice, once just before Xmas (don't ask me why) & both times I've ended up with full blown flare & not been able to walk. I cannot take painkillers. Anyway I last saw my consultant in November, he said that he thought I had OA in most of my joints ( how he reaches that conclusion I've no idea,as he never ever examines me). Well on Saturday a letter from him arrived to say he thinks I have inflammatory osteoarthritis with Palindromic symptoms, I've no idea what this means. Dr Google doesn't seem recognise inflammatory OA & if it is that why taking hydroxy? I did look up Palindromic rheumatism & the symptoms do mimic mine. I'm very confused can you guys shed any light please

[bassiefromholland]

Caza, if I read your story I should go for a second opinion, it is your body!

Wish you all the best

XxxBas

[Caza in reply to bassiefromholland]

Thanks Bas

[net2012]

Sameanswer as Bassie go for a second opinion. My consultant from beginning of last year said osteo when I asked him to look at my ankle, and it has got worse all through out last and this year. I have had to pester my gp who sent me to musculoskeletal services who diagnosed me with posterior tibial tendonsitis. Have had an x ray no osteo but my physio said it is not acting like a PT tendonitis so discharged me back to rheumy asking for a scan so back to gp and seeing orthopedics tomorrow. I would at least maybe see your gp and see if he can make any sense of the letter and diagnosis.

[Caza in reply to net2012]

Yes I should go to my GP, we've just moved so haven't met her yet.

Good lunch with the orthopaedics.

[helixhelix]

My sister has inflammatory hand arthritis which has badly affected her first finger joints so the tips of her fingers are all floppy. That is apparently the classic difference between RA and inflammatory OA, as RA affects the joints lower down first where's the inflammatory OA starts at the tips of the fingers. She takes hydroxy for it, which seems to help as she hasn't lost any more of her finger tips since she started taking it.

Alternatively you can get secondary OA as a result of inflammation from RA.

Did you tell your Doc about trying to reduce meds & flaring? As that to me would indicate that what you have is not palindromic, as that seems to ebb & flow in it's own way.

But key to me is not what he calls it, but whether the treatment is effective!

[Caza]

I have swelling & pain in most of my joints, hands feet knees elbows hips & thankfully only occasionally in my jaw ( which I find unbearable). In my hands it started in my knuckles wrist & now the base of my thumbs & the joints nearer my nails. I was flaring on average about once a month, getting flu like symptoms tiredness etc... But I haven't had one since Xmas. Just continual pain & swelling. I told the Rhuemy the first time I stopped the meds but last saw him in Nov so haven't told him about my 2nd attempt in Dec.

I agree it doesn't matter what name my illness has, I guess I'm just terrified that he'll stop the hydroxy & takes me off his books.

[Hidden]

I think helixhelix is on the money. There is a form of inflammatory OA as she says. Palindromic Rheumatism is also an inflammatory condition. The Arthritis Research site explains it well.

I think the key word here is 'inflammatory'. That one word distinguishes several forms of arthritis from most kinds of osteoarthritis. If a condition that affects joints is inflammatory then the DMARDs are likely to be the prescribed treatment so I doubt you have to worry about being taken off hydroxy or removed from your consultant's books. It can be hard to diagnose exactly what sort of inflammatory arthritis we have and that's hard for us to put up with too! It sounds as if your consultant is trying to get to the bottom of it though.

[Caza in reply to Hidden]

Thank you Postie, yes what you've all said makes sense. Yes the consultant is trying to get to the bottom of it,as I said he's a nice man just doesn't say a lot. Thank goodness for this site. 😀

[Hidden]

Hi Caza. I researched hand OA and RA a lot five years ago before I was diagnosed. As Helix says the pain and swelling you are getting on top finger joints nearest nails and base of thumbs is unlikely to be RA because these aren't synovial joints.

However there are many kinds of inflammatory arthritis and it sounds as if, just as Postle says, your rheumy is thinking hard and knows how to distinguish between these other types and RA. I very much doubt he is going to push you off his list and take you off Hydroxy if he's saying you have a type of inflammatory arthritis.

Palindromic rheumatism usually flares up and goes leaving no sign or damage. It is quite rare I believe and can turn into RA but for some people it burns itself out or just stays palindromic. The two types can go together I'm sure. I think your rheumy sounds like a thinker and knows what he's doing.

Ps my new rheumy has listed mine as polyarthritis (unspecified) now and says it probably was RA but he needs to see synovial swelling for himself in order to be sure as my previous rheumy didn't specify which joints were inflammed when he diagnosed me in 2011. As I only get the pain in my finger tips and base of thumbs now I'm not bothered what he calls it but I wish he'd help me with the pins and needles everywhere and explain my frequently high inflammation markers. Xx

[Caza]

Hi Twitchy, thanks for replying.

Yes he is a thinker just wish he'd think out loud whilst I'm there then I could ask questions!

He is a nice man & shows a lot of concern because I can't take painkillers. I did look up palindromic & my symptoms do seem to match. I will ask my GP what the letter means & trust the consultant. Panic over,thank goodness for this site.

I have been following your posts & can't believe what an awful time your having of it, what with your health & the condition of your new property. Having just moved myself & have had minor irritations,broken boiler cooker phoneline dampness & a very poorly car, I know how stressful it can be & its nothing compared to your problems. My heart goes out to you. I hope it all gets sorted soon. Take care x