is this what it's like then????

polly123

Hi Guys,

Feeling guilty as I only call in when I'm wanting to pick your brains. I'm really sorry - to be honest I don't feel like I could be much help to anyone here, and am still trying for acceptance/not panicking about the future/frightened to death by it all/majorly sulking.

Quick update is that I've widespread PsA diagnosed about 2 years ago, after a couple of years of uming and ahing. Started methotrexate about 18 months ago - I take 20mg/week, alongside folic acid, amitriptyline in low dose for trapped nerves and lodine for spine crumbling. PsA is widespread in joints. I felt better than ever over the summer - not much pain, fair bit of energy over the middle of the day, only a couple of hours getting going in the morning - much to be grateful for. However, now the wet/cool weather has returned to Scotland my hands and knees particularly are sore - my hands to the point where I cannot knit for more than half an hour.

I was (probably mistakenly) under the impression that meth would fairly halt the progress of the disease - do you think this means it's not working now? or is it common to have fluctuations? I'm particularly concerned about my hands as knitting is one of the ways I make a small living. I'd be interested to hear of others' experience of meth, particularly if you've found your arthritis still fluctuates - has it gotten worse overall, or just up and down?

Thanks, Polly

stickywicket

No need to apologise. Our brains such as they are :roll: ) are available for picking

I think the idea of DMARDS is that they slow down the progress of the disease and help to prevent the wider excesses of joint damage. I don't think anything actually stops it in its tracks (but I'm open to offers ) Fluctuations? Yes but, if the disease is truly under control, they shouldn't be too large. In your situation I'd probably be asking my rheumatologist what my inflammation levels were like. If yours are low then maybe your current problems are not entirely PsA-related. Maybe OA has crept in. I hope not but it is a possibility. X-rays could give some idea. Your GP might be your first port of call. Maybe, he / she also has access to your inflammation levels.

My RA started in my fingers and, apart from a brief period of remission during my first pregnancy, I couldn't have contemplated knitting. I also had to give up playing the piano quite early on. Exercise is good but I found gripping the knitting needles for too long at the same angle was very counterproductive. Maybe you could keep going longer with frequent breaks and doing some finger stretching exercises during the breaks. Or use a machine :?:

Sorry if I sound a bit negative.

polly123

Thanks Sticky,
That's helpful. Because PsA is a sero-negative arthur it doesn't often show up in inflammatory markers, but I've booked a 'phone consultation with my GP to see what she thinks.

I guess I'll have to pace my knitting for as long as I can, and look for a different longer term answer for my financial resilience (such as it is). In my day job i'm an independent advocate so am slightly scepical about relying on benefits until I really have to (says she with a wry smile), or assuming they will be there for me at all. Like a lot on here who manage to keep working i'm only part-time, so not a lot of leeway there.

Thanks again, and no, not negative at all. I've been fortunate to have found a wealth of realism here with a healthy dose of optimism that suits my outlook. I appreciate your honesty, and feel for your having to give up piano. I know for me that knitting is not just about money, but it relaxes me and makes me feel productive even when i'm unable to do much more than sit. I appreciate I'm very lucky to be able to continue with my crafts still, and will make more of an effort to cycle them around, in the hope that i'll continue to enjoy them for longer

Polly

theresak

Hi Polly,

I'm sorry you're suffering more at the moment. Your rheumatologist might consider throwing in another DMARD, to work alongside the MTX - combination therapy. However, it might be OA, as Sticky says. I have RA, and to be honest, the cold and/or damp weather doesn't normally make my joints worse - they can flare anytime, regardless of weather.

I do hope you can continue to knit - I absolutely loved knitting, especially Aran, but had to stop as it hurt not just my fingers, but neck & shoulders too.

Hope you get some answers.

polly123

Hi Theresak,

Thanks for your support. Yes, when I'm knitting full-size stuff i've gone over to circular needles so the weight of it is in my lap. For selling I knit miniature stuff, so no weight, and I have tried to switch about.

I'm not sure if its the cold/damp or just a coincidence. I had a bad chest infection which went to the fluid around my heart a couple of months ago, and that really set me back, so it could just be a blip. I guess I'm not so far along the road to acceptance as I thought!

Also it sounds as if I'm fortunate that the meth is working as well as it does, as I was pretty disabled before it. I'm going to ask my GP for an earlier return to the rheumy I think - my next appointment is not until February as I was doing ok.

Thanks again, Polly

stickywicket

Sorry, Polly. I'd forgotten about PsA being sero-neg :oops:

I've found in the past that anything that raised my temperature would set off my R.A. That sounds like a nasty infection you had so I guess you could still be feeling the after-effects.

If it's OA the rheumatologist can't do much. It'll just be a matter of paindullers from the GP.

You could try ringing your rheumatology helpline and see what they think. If you do, I'd tell them about the infection just in case it's relevant.

dreamdaisy

You asked 'Is this what it's like then?' Yup, it is. Arthritis is a gift that keeps on giving despite the medications. I began with one affected joint, now eighteen years on it's around forty and I have both PsA and OA. My PsA dislikes the summer, the OA the rest of the year. It's a blast.

Keep up with the knitting for as long as you can but not for sessions that are too long - your fingers and wrists need the exercise to help to keep as much flexibility available as possible. I wouldn't be surprised if your rheumatologist adds another medication into the mix (this is the norm). Apart from the first few months taking only sulphasalazine back in 2002, I have been on at least two (and sometimes) three meds but for me it was all too little and far too late. Arthritis of any kind is degenerative and progressive - for us auto-immuners the meds are meant to slow both processes (and they do) but they won't stop them. DD

polly123

Thanks guys for your input - I guess I'm further away from acceptance than I thought eh?

It's such a battle isn't it day after day? just when I think i've got it all under control and have limited my life to fit around it something else pops up. Think I feel a tantrum coming on

Spoke to the rheumy nurse yesterday and will speak with GP soonest.

Thanks again, Polly

Boomer13

Hi Polly;

I think acceptance fluctuates as much as the illness does :roll:

I've only had some symptom improvement from MTX, which I'm grateful for, however I still flare/remit with PsA strongly in charge despite two DMARDS (and previously three). Now awaiting starting a biologic.

Good luck, I hope you find something to give relief.

Anna

theresak

Anna, that is so true - acceptance fluctuates as much as the illness. You really hit the nail on the head!

polly123

Hi Anna,

Lovely to see you again I do know this - working on it as best I can - I just don't want to!!
Going away for the weekend tomorrow so hoping a little peace will bring some more acceptance.

Enjoy the weekend, Polly