Comments on: RA – it’s not ‘fair wear and tear’!

By: pollyannapenguin

pollyannapenguin — Mon, 09 Jul 2012 12:11:59 +0000

Hi Leslie,
I’m definitely low disease activity and maybe even in remission although I don’t think so – I think the thing is that the methotrexate and hydroxychloroquine are doing a good job of controlling the disease, with only occasional flares, and therefore the NHS wouldn’t even consider me as a possible biologics person. They do use biologics, but they wait until you’re in dire straits before considering them. Dumb, but that’s the way it is!

I hope you manage to make the right decision for you – I’d jump at the chance myself, if I needed them and was offered, but I know that there is a LOT to consider!

By: Leslie

Leslie — Mon, 09 Jul 2012 12:07:35 +0000

Polly, Are you considered in remission or low disease activity? I guess my question is if you are still having problems why no biologics? Does NHS not go there or is this your choice? I’m thinking this way myself and looking for feedback.

By: pollyannapenguin

pollyannapenguin — Wed, 09 May 2012 19:57:49 +0000

Lee-Ann? Well that’s a new one. Think I’ll stick with Polly though!

I’m on methotrexate & hydroxychloroquine & arcoxia (a cox-2 inhibitor) for the RA, and folic acid and lansoprazol (sp?) to counteract the first three!

By: Anonymous

Anonymous — Wed, 09 May 2012 17:43:20 +0000

lee-ann what medication are you taking?Sal gerardi

By: darla jo cheatwood

darla jo cheatwood — Wed, 09 May 2012 00:34:13 +0000

Appreciate your blog

By: pollyannapenguin

pollyannapenguin — Fri, 04 May 2012 19:51:15 +0000

You are very kind … as always!

By: Wren

Wren — Fri, 04 May 2012 14:17:20 +0000

Fabulously written post, Penguin! It draws you in and then gives you so much good information, and all of it with smiling confidence. Well done! You’ll open up a lot of eyes with this one. Consider sending it to your local newspaper, eh?

By: pollyannapenguin

pollyannapenguin — Fri, 04 May 2012 10:30:58 +0000

Hi Alison, thanks for finding time to comment between manic wool festival preps and de-preps (or whatever the word is!) How the heck you find the energy to cope with all that and CF too is beyond me, but well done you!

I think ‘bloody unfair’ sums it up most of the time as far as fairness goes!

I suppose calling it arthritis is ‘fair’ in a way because that is, as you say, the main symptom and the one that sends most people to the doctor in the first place. Also finding another name now, when RA is so well established, could be tricky. Maybe if one called it ‘autoimmune arthritis’ that would give people more of a clue that there’s something else going on, but then again that’s a bit generic – there are lots of autoimmune arthritis types.

By: Alison

Alison — Fri, 04 May 2012 10:20:26 +0000

It’s tricky, isn’t it? You could almost say that calling the disease ‘arthritis’ at all is, if not a misnomer, then at least misleading. On the other hand, I’m guessing it’s the arthritis aspect that sends most people to the doctor in the first place.

I greatly appreciate your distinction between ‘fair wear and tear’ and ‘not fair’, too. As someone with chronic fatigue, it’s a very important distinction! Lots of people feel tired, lots of the time. It’s probably fair to say that in our society most adults are sleep deprived, trying to do too much, and spend lots of time fatigued – which is ‘fair’. True CFS/ME, though, is characterised by disproportionate fatigue which does not improve with extra rest – something that is very hard to understand, even as a sufferer sometimes!