Am I looking for too much or settling too soon...?

[mirren]

I have been doing relatively well since rheum added Hydroxychloroquine to my mtx, but moved house mid December and although I coped better than I thought I would I definitely have gone back a bit. I drove to my dads on Saturday, 2.5 hours and back today. I feel pretty sick, shoulders mainly, like flu, "restless arms' as I call it, and swollen hands ....is this what they expect us to see as remission? Or is it grounds to ask to increase my mtx? I don't know if I am supposed to be satisfied with pain all day every day, as long as I can walk and work? Or should I be holding out for better than this?

I have already lost a promotion I had been offered so I don't want to accept this is it if it doesn't need to be.

[Hidden]

hi Mirren long time since we last spoke, there is a bug going round that have hit people very badly, so you will have to get yourself check out, i see you suffer from psoriasis so do i my face, head, ears, and chest look like i've got ring worm, its horrible, well i hope this helps you take care Alan x

[mirren in reply to Hidden]

I do t have psoriasis Alan I have psoriatic arthritis, which is whats making me unwell. I have had that cold though, but this is something different. Hope you are well.

[Hidden in reply to mirren]

hi Mirren i am now just had problems with my lower and upper abdomen and bladder trouble spent two days in hospital ove the holidays and now recovering from a very sore stomach. i didn't know that you could have psoriatic arthritis, i've got osteoarthritis, i bet your in some major pain with that, my face, head, and chest at the moment it looks like i've got ring warm. anyway i hope what ever it is you soon recover its been nice talking to you take care your friend Alan xx

[Hidden]

I totally understand how you feel. " Is this the best I can achieve? "I kept asking myself after my rheumatologis, in November, said I was starting to reach "remission" I was soooo excited. I thought "Whoop Whoop, I'm going to beat this RA!!" My swollen hands seemed to be less swollen. I was in remission...still some pain...but I was going into remission...I was so proud of myself....I'm very smart...so I thought.....So I dropped my hydroxychloroquine down to 300mgs daily from 400mgs daily. I was feeling great...I don't need this hight dose of hydroxy anyways.....3 weeks later I had severe pain between my thumbs and pointer fingers.

The point I'm trying to make is that maybe a little pain is what "remission" means....I hope not...any advice out there to tell us what

"Remission" actually means?

[mirren in reply to Hidden]

My rheum nurse decided I was in remission cos my swollen painful joint count was lower and my inflammatory markers were normal (they always were)

Unfortunately they use the DAS score for RhA and that ignores all the other joints affected by PsA, I am limping as my feet and ankles are so bad, and my hips, I am pretty able and usually would fight my corner, but its a delicate relationship that you need to be careful with

[Hidden in reply to mirren]

I think you probably know what I'm going to say mirren ....... except I'm almost too gobsmacked to say it.

Here goes ... the short version and I hope you continue this discussion with us:

1. Your rheum nurse decided you were in remission. What the .....?? Since when did rheumatology nurses make such key judgements? That's one powerful nurse.

2. PsA being assessed using DAS score .... that's just not how it's done anywhere else that I've heard of. NICE lays down how the severity of PsA should be assessed and I'm sure that does not involve DAS.

3. The old inflammatory markers chestnut .... well, even though PsA patients often do not have raised ESR & CRP, I realise that those of us who do might reasonably be judged to have improved if the levels go down. But you are not in that category.

4. Perhaps you do have a bug of some kind, perhaps feeling so grotty is a bit of a flare up that won't last, but you say you're in pain every day, quite a few joints would seem to be affected and you're limping ... how can that be remission?

I think this word 'remission' is a complete red herring. It's early days for you, far too early surely to start bandying such terms about. Seems to me that your doctors have yet to get a satisfactory angle on your condition or to find a treatment regime that allows you to get on with your life. I'm not usually this mystified .... it's just that so many things sound odd, wrong or downright weird. I seriously think you could do with a second opinion.

[mirren]

I know, I feel beaten down and like I am not winning this battle with rheumatologist - I'm bravely plodding on and working through the pain, and I realise if the pain was really bad I couldn't do that. I am worried though, that low level or mod level pain means some disease process continuing and my bones are slowly being eaten while I grin and bear it.

I tried to post a PIC of my hands but it didn't go on!

Hope you are well postle, iv been up to my eyes in house move, work and the holidays, so not been around so much x

[mirren]

Ha! It's on now!

[Hidden in reply to mirren]

Oh yeah, seen the pic. Nice duvet cover. Well I'm not a medical professional but I know a swollen hand when I see one.

Pain in itself might not be indicative of joint damage. That's what I understand to be the case anyway & personally I find that quite comforting sometimes. But to me pain and obvious joint issues including swelling ARE indicative of not having any basis whatsoever to listen to a load of premature & probably cost-cutting-related old baloney about remission.

I can see you've got loads going on & sometimes even health has to take a back seat. But please don't let this drag on. I wish you could accompany me to a rheumy appt. (you'd be very welcome, what are you doing in April?!) or go along with someone else who has a great rheumatologist. I am so sure you'd come out of there absolutely determined to make a few 'little' changes.

I found this about using DAS to assess PsA. It's from 'The British Society for Rheumatology 2012 Guidelines for the treatment of Psoriatic Arthritis with biologics'

(Most of the guidelines are issued in connection to biologics, but I think the comment about the limitations of DAS are very relevant to you)

rheumatology.org.uk/include...

'Outcome measures

As stated above, the PsARC is the current recommendation for response assessment in peripheral arthritis. The ACR response criteria have also been shown to be discriminative in polyarticular PsA , but are generally too cumbersome and time consuming for routine clinical practice. Other composite arthritis measures have been validated in PsA. The EULAR responses, based on the DAS and DAS28 scores have been shown to be responsive in polyarticular disease but there are numerous concerns about their use in the general PsA population (i.e. lack of validity in oligoarticular disease or those with predominant lower limb involvement, remission cut off validated in RA but not in PsA , global disease activity may be influenced by other aspects of psoriatic disease [such as enthesitis, psoriasis, axial disease], PsA patients show a less linear relationship between disease activity and acute phase response).'

And I'm well thanks!

[mirren]

really useful!

I will print this to take to my next appt. I feel like they think I need to get used to being in pain and less mobile,

(sort of well what do you expect? l you have PsA/mctd/seroneg arthritis....)

but I know some people get really well, and I want that too

[Hidden in reply to mirren]

My rheumy said from the start that the aim was remission. And that we'd probably never get there but we'd try. To me, that is primarily what that word is about - it's the aim of treatment, not an excuse to stop trying ('them' I mean, not you, I'm sure you're trying and then some!).

I have been really quite disabled by PsA but I'm not anymore, despite some damage. It took over a year to get fully mobile again and since then the all-round improvement has continued. That may not be possible for all, but it is a realistic expectation, especially in the early days.

[lotsoissues]

I GET RESTLESS ARMS TOO AND HATE IT.