Hello…

… yes, it’s me. I’m back. Again. Sorry for the silence. Again.

It’s been another wee while since I popped my head around the door of the blogging world a couple of months back to promise I hadn’t gone anywhere. Iย  had hoped to be back here sooner than this, but it’s been a crazy few months as Wayne and I have been busy settling in to our new Manchester life and exploring the city with loads of lovely visits from our nearest and dearest friends and family.

I’m currently sat at home on a stereotypical Sunday afternoon – cosied up in the living room with 50 billion candles on, my FAVOURITE Disney film in the background (pure accident as it was on the telly already but SO glad I stumbled upon it) – Beauty and the Beast if you need to ask and don’t know me well enough ๐Ÿ˜‰ – curled up in a throw on the sofa with my laptop and a cuppa. It’s cold outside – the weather has REALLY turned recently – the winter evenings are well and truly here… but I’m feeling a little bit smug in the fact that usually, at this time of year, I’m in pure agony with joint pain as the cold weather takes it’s toll. For some reason… I’m not feeling it just yet. And I’m really hoping that it doesn’t come looking for me for a little while longer.

Okay, so it’s been a while since I’ve updated you all where I’m at health wise.ย  And loads of you have been asking me (thank you) so – for my benefit and much as anyone else wondering – here goes.

“WHAT IS SHE ON ABOUT?”
Hi! I have Psoriatic Arthritis. Psoriatic Arthritis is an immune system disease. Basically, my silly immune system thinks that my body is full of bad foreign bodies, so it is constantly attacking itself. In my case, resulting in joint inflammation, pain and bone deterioration. I have it in my feet, hands, lower back and pelvis.ย 
I take Methotrexate. Methotrexate is is a chemotherapy agent and immune system suppressant. It tries to stop my cells from attacking themselves.ย 
I also take Humira. Humira is a Biologic drug – which injects man made antibodies (“good ones”) to block the inflammation and kill off the bad ones who can’t think straight and are attacking me.ย 

I’m used to injecting my methotrexate weekly and Humira fortnightly with relatively few side affects (I used to take the methotrexate orally at first, and was fighting constant nausea, dizziness and headaches, so I switched from that after a few weeks and the injections have been heaven compared to those nasty tablets).

But…

I’VE BEEN MEDICATION FREE FOR THREE MONTHS!

Not through choice, initially. I was unable to continue my prescriptions when i first moved up here as I’ve (obviously) had to transfer hospitals from Guy’s Hospital in London to somewhere up here. Luckily it was a relatively short process to get the referral as my new GP put me through as urgent. However, it did take a while to see my new Rheumy at Withington Hospital a couple of weeks ago, so when my meds ran out, I spent the first few weeks in agony. It really brought back all the memories of the constant pain I was in before I was diagnosed).

But recently it’s started to get better and I’d say on the pain scale of 1(what pain) to 10 (I can’t go on) I’m about a 3. So I’m feeling SMUG. CHUFFED. CHUFF TITTIES.

What’s one of the best things about being off the meds? I feel HEALTHY.ย  One of the most annoying problems with taking immune suppressing meds is that – surprise surprise – you get ill ALL.THE.TIME and catch anything and everything going. You can catch a common cold and have it for WEEKS.

Now, I am very aware that I do need to get back on them sooner or later because with my immune system disease comes a process of joint degeneration – and I really don’t want that to get any worse, because it’s irreversible. But I do want to have a conversation with my consultant to try and come off the methotrexate. Chemo isn’t good for anyone and shouldn’t be taken out of choice. So if I can come off of that I’ll happily continue with my biologics.

For now, I have been given a new prescription for methotrexate – but it’s for tablets – which I’m not prepared to take (because of said side effects). So I’m holding off to talk to my consultant next week to talk about that.

I’m really keen to help shape the future of these meds and how they’re used. And for a little while I’ve been wanting to get involved in trials and studies for people like me with Psoriatic Arthritis – which is still relatively under-researched. I have some exciting news on that front which I’ll be able to tell you all about in a couple of weeks.

I will definitely keep you posted (promise).

Joey

xXx

P.S Here’s me at Withington hospital two weeks ago having ALL the tests in the sexy backless gown. Hand x-rays, foot x-rays, chest x-rays, a billion pints of blood and talking through my history to a group of medical students. I’m happier than I look ;-).

jo hospital

 

Author: crystalclearjo

Thirty something northerner living with Psoriatic Arthritis and a host of spine niggles. Busy proving life isn't all about pain...

4 thoughts on “Hello…”

  1. Hi Jo…..it’s been really good to read your blog, when I say ‘good’ I mean enlightening but very sad that someone of your age has to go through this terrible disease. I do feel for you. I don’t know whether you know but I had breast cancer in the summer, but the thing about that (hopefully) is that once it’s out and treatment over it’s done (apart from the tablets I’m on), whereas yours is just an ongoing illness that sounds like it drains you and makes you feel terrible. However………..it sounds like you’re on an upper at the moment which is great news. Sending you tons of love and hugs and good vibes lovely girl, and very best wishes for your ‘upper’ to continue! Love Janice & Steve X

    Like

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