Sliding Down the Steroid Slope

slomo

Hi folk
today's the first I've posted in a while - I've just not been up to scratch (as you'll see if you look at what I've posted on SW 's crips post. Go on! Have a look- have a laugh at my expense - it'll be my good deed for the day!!)

Saw the rheumy yesterday and although it was quite a short meeting, it was a good one. The steroids he'd given me have really pulverised the inflammation which is great. In addition to arthritis I also have large vessel vasculitis, which is inflammation in the large arteries, specifically in my ascending and descending aorta and my femoral arteries so obviously anything which brings down the inflammation is good as I really don't want to burst those arteries.
Rheumy has a love/hate thing with steroids - he loves their effectiveness but hates their side effects. During the last 3 weeks I've been on 60mg daily dropping to 40mg and now for the coming 3 weeks he wants me to do one week each on 35mg then 30mg and the 25mg. He's upped my methotrexate from 15mg to 20mg to balance things out.
I've finally admitted defeat and said I need time off work as I'm suffering terribly from fatigue (a symptom of the vasculitis as well as the arthritis) I only work 3 days a week but it was taking me to Friday afternoon to feel human again. I think maybe it's an age/generation thing too - folk my sort of age (62) just get up and go to work and don't take time off unless bits of you are dropping off!!.
I've said I'm going to be off a month which runs it right up to a weeks leave I've got booked already.
OH is happy - I didn't realise how worried he was about me just soldiering on. He knows I've got a serious illness and sees the potential dangers while I was, I think, just trundling round and round my little hamster wheel, head down and keeping on going. Maybe its time I put myself/my health front and centre for a while. After all work will be there long after I've gone.
(that turned into a longer post than I'd intended - sorry to bore you and congratulations on making it to the end)

slomo

theresak

Hi Slomo - not a boring post at all. It certainly sounds as if you had a good appointment. I always think of steroids as a double-edged sword - they do so much to help us, but always bring additional problems in their wake.


Your rheumy seems to have a very sensible plan with regard to steroid use, and the fact that you`re having time off work will surely be a huge help too. There are no medals given out for soldiering on - but I think you are right about the generation thing.

Your OH is bound to worry about you, and it is definitely time for you to look after yourself and give your health priority.

LignumVitae

Hi Slomo,
I don't think we have spoken before but you gave me a huge smile with your Crips response and I am happy to join you in the altered definition!

I know what you mean about steroids, addictive for their ability to make us feel all sparkly (by degrees) and hateful for their side effects. I've had more of the injectables than the tablet form over the years but side effects have included horribly friable skin, on my feet, ouch and I'm currently sporting a huge depression at the top of my (huge) bum from my last injection over 12 months ago. I had a similar depression on my wrist (not so huge) after an injection into the wrist nad that used to go all sorts of colours.

I think given that you are tailing them off, and still not feeling great, a month off work is vital and though it may seem an alien decision it could be the decision which means you can more easily go back to work than trying to power through without a rest would mean.

Your husband sounds like a gem for noticing and caring, sometimes, when others do see that things are great it is time to put ourselves first. I know that it's when my mask of capability slips that it's time to crawl into my shell and recharge.

Your post was far from boring, especially off the back of your response to SW.

LV (((())))

stickywicket

I think most of us have a love / hate relationship with steroids. While making some things feel better they quietly damage others. Your GP is wise.

You, too, if you're re-thinking the work situation. Your health should come first. I'm glad you've managed to make your OH happy. It sounds as if he has, indeed, been fretting.

Oh and thanks for the crisps Wonderful!

barbara12

Hi slomo..like the others have said you do have a good rheumy and that can be scares..aqnd a lovely OH who has been worrying..so glad you have take time off work..just make the most of it and hopefully things will settle..I do sometimes wish a had a magic wand...let us know how you get on

dreamdaisy

I loved steroid tablets, I still have a pack of 5mgs which I look longingly at every now and again: then I come to my senses and refuse to waste the year I spent in 2011 getting off them just to feel that fake 'better' once more.

This is the danger of them - they have a role to play but they are the complete conmen of medication. They lull us into thinking that all is well and we are better! but they are quietly busy thinning all our body tissues which is not a good thing. The thinking with them now seems to be a huge dose then quickly reduce (or just stop) but that can be a nasty experience for the patient. Grit your teeth and plough on, they have done their thing and now it's time to adjust to doing without the extra boost they offer. It's tough, I know that.

I also empathise with the ostrich approach to the health issues - if I ignore what's going on and keep up with what I do I will be better. It doesn't work like that and I am pleased to read that you are rethinking work etc. I carried on working for maybe two years too long, I was fortunate in that I had my own very small business (it was just me) and could tailor things to suit me but the relief when I stopped was wonderful. I think I was 53 when I called it a day and don't regret it for one moment. It's a big step though, a very big change to one's life. DD