First appointment with consultant tomorrow...

happypancake

Hello! *waves*

I went to my GP about 6 weeks ago because I've had pain and swelling on and off in my index fingers for *ahem* six years. It started with just my left index finger and then the right started up too.

The pain and swelling has always come and gone. Not completely gone - the knuckle and lower joints in the fingers are bigger than they used to be, but I go through months without it hurting.

Anyway, I had a really bad flare-up which started Feb ish. For the first time, the pain interfered with life. I do a desk job and typing was really painful. The pain woke me up in the night. Took ages to get the fingers moving in the mornings. So I figured it was about time I went to the doctor.

GP did blood tests which were normal. I have psoriasis and GP saw me when the finger swelling was at it's worst, and she suspected some form of arthritis straight away. Following blood tests, she's referred me to have the possibility of psoriatic arthritis checked out.

I have private medical insurance with hubby's work so I'm hugely lucky and grateful that I can be seen privately (GP said the waiting time for rheumatology in our area is months!). It's been 6 weeks because I had to wait for blood results, and then I was away on holiday.

Anyway... Bit worried now.... In the last few weeks this flare-up has gone completely!!

Worried the consultant will think I'm making a fuss about nothing. I have some photos on my phone of the swelling at its worst, but he won't be able to see exactly where the pain is and what sort of movement hurts the most. If it follows the same pattern as before it could be a few months before it comes back.

I have realised it's always bad in the spring for some reason, and occasionally at other times of the year too.

Not quite sure what to expect now, as I can't show the consultant exactly what's happening. :oops:

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dreamdaisy

Hello, I have PsA but mine did not begin in the traditional way (and I don't have much trouble with my skin). Rheumatologists are used to the vagaries of our condition so the one you see wont be phased by its lack of presence. It's good that you have photographic evidence and it might be worth starting a short daily diary noting what eases and aggravates matters, pain levels if applicable, where the pain is located, this will help the rheumatologist gain a better overall picture of how you are currently affected.

I find my PsA is worse in the summer when the heat and humidity hit but mine is very well controlled by the meds I take. I do recall that the first rheumatologist I saw told me that I didn't have an auto-immune form of arthritis but the second one I saw after nothing 'corrected' itself disagreed. I was started on a med called sulphasalazine and although it wasn't effecteive for me a friend has his PsA under splendid control with just six tablets per day: I am a firm believer in the quicker you are seen, diagnosed and begin the meds the better the long-term outcome will be. I hope this proves to be the case for you, please let us know how you get on.

I wish you well. DD

happypancake

Thanks! I was hoping that's the case re early diagnosis/'control' and long-term prognosis. I'm pretty clueless at the moment - I don't know what a traditional start/path to PsA would be. If that's what this is - posting on this forum slightly cautiously as I'm not diagnosed yet.

Tonight I'm going to make a note of roughly how it's changed/progressed in the last six years, as best as I can remember. That's a good idea about keeping a diary for future reference - thank you.

barbara12

Hello happypancake and a warm welcome from me...
We have heard this story so many times on this forum,people thinking they wouldn't be believed because the swelling has gone down..and so on..but you stick to your guns and see what the test bring ..a good rheumy will take everything into account good luck

dreamdaisy

I was told the 'classic' starting points for PsA are the smaller joints such as the fingers and toes; mine chose my left knee. It is also a sero-negative form of auto-immune arthritis, which is why one needs a rheumatologist, they understand that these things exist whereas many think there's OA and RA, end of. It's not that straightforward . My friend's began in his hands, he noticed because he is a kitchen and bathroom fitter. His has stayed in in his hands, maybe thanks to the sulph or maybe because his version is not so aggressive, which is a good thing. (I'm now trying to remember how long he's been on this dose . . . . . . I think it's approaching 15 years). Mine took a different path but, unlike him, I was born with auto-immune troubles (eczema) and developed asthma aged 7, long before the invention of inhalers. I wasn't expecting arthritis when it arrived but I've learned that life continues to have other plans for me than what I would prefer (I suspected this was the case aged 8, now it's been confirmed for some time! )

The diary is something we recommend, if one is coming at this from a generally healthy background it's not an obvious thing to do but it can help both us and those who are there to help. DD

happypancake

Thanks for the reassurance, barbara12.

dreamdaisy - mine started in just my left index finger six years ago, and my right index finger joined in last year (after a five year gap). If that rate of progression were to continue, I feel like I'll get off very lightly! I'm 35.

My GP is wonderful (my hubby has long-term health conditions and they've been really supportive and helpful at getting him in with the right specialists as an NHS patient) and she recommended one particular specialist so I'm seeing him. I will let you know how I get on...

dreamdaisy

Everybody's rate of progression varies. Mine began in my left knee when I was 37 (back in 1997) and then at some point in 2003 my right knee joined the fun. In October 2006 I had a bout of pustular psoriasis on my soles and palms and the medical penny dropped. The meds I was taking didn't change, just the label, and other joints continued to join the party. In April 2011 OA was diagnosed in my knees and ankles, caused by the joint damage from the PsA - I won the arthritis lottery! Deep joy.

I hope today's appointment goes well, I will not be around later due to a wedding but will look in when I can. DD

dreamdaisy

Hello again, how did you get on? I've been thinking of you and I hope all is as well as possible. DD

happypancake

Hi dreamdaisy (and everyone)! Thanks for thinking of me and I'm sorry for the slow reply. Work's been crazy this week, and I'm trying to work out how I feel about how the appointment went...!

Had a chat with the consultant and he examined my joints, tested range of motion, listened to my chest... No further tests ordered (he'd received the results of blood tests from my GP).

Diagnosis: a mild case of currently inactive psoriatic arthritis.

He said the periods I referred to as flare-ups are when it's active, and in between it's inactive.

In terms of disease modifying drugs, he said that the drug of choice would be sulfasalazine because hubby and I are trying for a baby, and it's safe for during that time. However, he said that he was leaning towards NOT treating because my arthritis is very mild.

This is the bit where my understanding is hazy and I need to ask more questions next time. He said you have to balance over- vs under-treatment. If you over-treat, you could take a drug for several years that has potential side effects and isn't doing what it should.

Overall, I came away a little disappointed as I felt he was slightly dismissive? I do know that 99% of his patients will have far worse symptoms than mine. I'm not sure I explained how much it was hurting when it was active earlier this year, though I did tell him it was waking me up at night and it took me about an hour to unstiffen my fingers in the morning.

Anyway, next steps... He's going to see me again in 6 weeks. If it's still inactive at that point, his recommendation is to not have any treatment, and for him to discharge me back to my GP's care but on an open appointment - ie if/when it becomes active again I can go back.

*shrug*

Not sure whether to question anything, or whether to think "Phew! He's an expert and says I'm fine so don't worry."

I got a copy of the letter he sent my GP following the appointment where I was referred to as "unremarkable" several times. Hubby said it's good when doctors think you're unremarkable. He has a very rare condition and every time he sees a new specialist they're VERY interested, call in colleagues to have a look, etc. We've realised that if a doctor finds you uninteresting, it's probably a good thing.

Any tips for next time?

stickywicket

That's a bit different but not, I think, totally discouraging.

I'm with your husband. I've been 'remarkable' since I was 15 and I don't particularly recommend it Docs have a language of their own. I learnt that many years ago when a letter to a specialist referred to me as 'this very pleasant lady'. I stopped preening myself when someone in the know told me it simply meant 'She's OK. Won't give trouble' So I think 'unremarkable' probably means 'not causing much concern' ie to him, not you.

Rheumatologists tend not to judge by pain but by the results of their blood tests. Those are what tell them how active the disease is or isn't. The amount of pain we feel doesn't necessarily correlate with that.

I don't honestly think I've heard of a rheumatologist saying PsA is probably best left untreated as it's so intermittent though I can see the point that yours is making. What I'd take comfort from is that he wants to see you again so quickly ie if the markers rise in that short time, he'll probably revise his opinion. And the 'open appointment' thing, this being a private consultant, means you can see him again very quickly as / when needed. Personally, I'd settle for that.

pinkteapot

You've just made me laugh - the first thing my letter said was that I was "pleasant". Laughing now you've told me what it's code for!!

Thanks for the reassurance. I'm more than happy not to treat as I'm always keen to not take medication unless absolutely necessary. I think - but will clarify next time - that it's the slowness with which mine has progressed that has him leaning towards not treating.

It started in 2010 with one finger, and approx last year a second finger joined in, but that's it. In six years, I have two fingers affected which, as I said, I know is incredibly minor compared to most (if not everyone!) on here.

My only concern is whether medication would make a positive difference to any future progression, given that I'm in my 30s. I'll ask that question more explicitly when I go back, and make sure I understand the reasoning for not treating.

Good point re an open appointment with a private hospital being good as I can go back if it flares up badly again. So long as hubby doesn't leave his job - I'm only going there because I'm covered by his insurance.

stickywicket

Be nice to him

I really don't think anything too serious will happen in 6 weeks - especially given your slow progress. But, if you have any questions in the meantime make a note of them and ask when you see the consultant. I do think it's reasonable to query the 'non-treatment' but, in your case, it does seem reasonable.

Meanwhile, we're all here to help if we can.

happypancake

Thanks!

I'm not worried about the next six weeks. Based on past experience, I go much longer than that between flare-ups - often a good few months. Not expecting anything to happen, nor that it will be active again when I see him again.

My only mild worry about the non-treatment was whether it would make a difference to the progression over the long term (years/decades) but I'll ask more questions about that over/under treatment balance that he mentioned to put my mind at rest. As I said, he seemed very experienced/knowledgeable so I do trust his judgement - I just didn't ask enough questions to fully understand the reasoning myself which is why I'm slightly questioning it.

stickywicket

Hindsight is always 20/20 vision The good questions and thoughts often come too late. The one question I'd want to ask is if it could be doing damage although I wasn't actually feeling anything (much).