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Living with Psoriatic Arthritis (PsA)

Having a vent!


#1

It’s been a while since I posted. I feel a bit bad as I feel I only pop up on here when I want something rather than giving help and advice to others but as it’s still all so new I’m not sure any advice I give would be of any help.

Following being signed off work for 2 months I am back, on a phased return every other day with short hours. Have been managing this since mid-August. I have had an occupational health assessment which recommended working from home 1-2 days per week and also said I am “covered by the disability provisions of the Equality Act”. Which although was hard to read it means I’m protected by the provisions of the Act and therefore work have to accommodate me. They just haven’t sorted out the work from home bit yet.

I’ve also now been told my iron stores are very low. Has anyone else had this? Is this because of Sulfasalazine? So on top of a cocktail of medication I’ve now got iron supplements.

Yesterday was a particularly bad day at work for me. I was in pain when I got to work as the traffic in Bristol was solid so I walked in to work. I took my Naproxen and then Cocodamol not long afterward and ended up being sick on myself in the toilet :see_no_evil: Like an idiot I tidied myself up and went back to my desk to carry on. The pain got too bad so I went home. My unsympathetic boss made me feel such a let down. I’m now wondering if it was a bug, a symptom of a flare, god knows. The days I’m not working are usually spent horizontal on the sofa. The rheumatologist is repeating my MRI on 8th October and then will decide if “it is an inflammatory arthritis” and increase my DMARDs. I’ve been diagnosed with it by a rheumy privately but my NHS consultant still remains unconvinced. I’ve been struggling for almost 18 months and it’s felt like a battle every step.

Have been feeling very sorry for myself. I’m 44 years old, a mum to a beautiful 13 year old who is my world. I’m worried about my future and feel I’m letting everyone down at the minute.

So today on my “rest day” I’m going to give myself a gentle kick up the bum. I’m going to go out for a coffee in the sunshine, email work and ask them to expedite my working from home plan and buy myself a diary to keep a track of the pain etc. Just thought might be a good idea to track it all as I find once the pain takes over I’m a blubbing wreck and have lost it completely. Am also going to join Slimming World tonight so going to plan my last supper today before I watch and think about everything I eat!!

Thanks for listening xx


#2

Lol! You don’t need us really, you know exactly what needs doing!

But, yeah. What a struggle. And while it does look like you’ll find ways to cope, the one main thing that hits me is the uncertainty around the diagnosis. If you have inflammatory arthritis you need a concerted treatment plan . And knowing what’s what for certain also takes a little weight off the shoulders.

If you don’t get clear answers and a way forward in October, I’d urge you to transfer to the RNHRD in Bath. I go there from Kent. Initially I had a private appointment and then transferred on the NHS. Not saying they’re perfect, nowhere is IMO, but when it comes to PsA they’re the experts and shouldn’t mess you around.

As for low iron, I’d imagine that must be making you feel pretty knackered in itself. There is something called ‘anaemia of chronic disease’ which runs alongside inflammatory diseases - I had that for some years. However I thought it was characterised by mild anaemia. Worth asking about though.

I hope you have just the day you need today. Looks like you got the sunshine.


#3

Thanks Sybil. Ha, that’s me all over! Think talking (typing) about it helps you have perspective on everything.

Yes it’s gorgeous here today.

I will definitely ask to be referred to Bath if I get nowhere with the NHS consultant. My GP is brilliant and supportive so I think she’d be on board. I do have BUPA in the background too but private consultant suggested I went back to the NHS as the initial authorisation from BUPA was only initial investigations and a follow up.

The iron thing was apparently detected last year but no one told me so hence my stores have gone down. I’m actually laughing at it’s like a catalogue of errors! :rofl:

Hope the sun is shining in Kent today too xx


#4

Yep, the sun is shining here too. Helps a bit, doesn’t it?

Just thinking re. the iron thing, it may be worth looking up ‘anaemia of chronic disease’. It sounds awful but apparently it’s nothing to get too worried about. I don’t think iron tablets help, it’s all to do with some complex mechanism. Might be important therefore for you and your doc to figure out whether your low haemoglobin is due to that or not before starting iron supplementation.

Glad talking / typing helps, same for me.


#5

I’ll just add in my tuppence worth too. I’m also in Kent and also go to RNHRD in Bath. My only other experience of rheumatology for myself was in Kent and it wasn’t as good as Bath. At least there their careers are actually all about PsA, and that so helps. Being so near as you are @Lulu I’d say it’s definitely worth a shot.