Newbie - scared

[smose]

Sorry you had a negative experience - I must admit I always thought you couldn't have too many steriod injections and have never been offered steriods by the gp.

Maybe you could ask for something like amyltrip to help you sleep. Made a big difference for me when I started taking them. Also what sort of pain killer do you take on a night? I have a long acting tramadol which lasts for 12 hours so perfect for a night

[flower fairy]

I'v had courses of oral steroids starting at 20mg for a week and reducing by 5mg each week for a month and they were prescribed by my GP. Found them very effective but pain would begin to return as soon as I reached the 5mg dose. I think she said if the lower dose of 5mg was effective I could stay on it for a long time but as it was'nt I could'nt use that option. One thing I did notice every time I was on steroids I seemed to pick up some sort of chest infection each time and ended up on antibiotics for a week. The infection then seemed to turn on the immune system and the arthritis would flare, it's like a vicious circle but Humira has stopped that circle, at least for now.

[newshaz]

I take amitriptylene at night - 30 mg - to help me sleep. This may work for you, is it worth asking about it as Smose has mentioned?

[Gav74]

Also what sort of pain killer do you take on a night? I have a long acting tramadol which lasts for 12 hours so perfect for a night

Still just on over-the-counter ibuprofen. When the steroids were working, I didn't need anything else.

I'v had courses of oral steroids starting at 20mg for a week and reducing by 5mg each week for a month and they were prescribed by my GP. Found them very effective but pain would begin to return as soon as I reached the 5mg dose. I think she said if the lower dose of 5mg was effective I could stay on it for a long time but as it was'nt I could'nt use that option. One thing I did notice every time I was on steroids I seemed to pick up some sort of chest infection each time and ended up on antibiotics for a week.

That's what I have now, just waiting for them to kick in...
I had a really sh1tty cold after the injection (still got the last of it now actually), but it didn't get bad enough for a chest infection.

I take amitriptylene at night - 30 mg - to help me sleep. This may work for you, is it worth asking about it as Smose has mentioned?

I'm still looking at that as a last resort option. I absolutely hate the idea of taking that stuff. When my son was diagnosed with mild Asperger's Syndrome, they put him on Amitriptyline and it did help; by turning him into a zombie most of the time. I took him off it myself in the end, having decided that I'd rather face the hard work and have my real son back (FYI he's 16 now, learnt how to deal with his difficulties and getting on really well at college - preparing to join the Army as a Vehicle Engineer). So you can probably understand why I'm more than a little hesitant to ask for anything like that.

[newshaz]

Yes, I can go with what you have said.  It helps me sleep most nights. Have the fog anyways due to the pain levels, so not loosing anything there, everyone is different but.

[smose]

I don't really feel any bad effects from taking amiltryp - I only take 25mg just before I go to bed and actually think I feel better during the day because of it. Purely because I sleep more soundly

You really should ask for some decent pain releif - if only for night times. Its so important to get a good nights sleep as I really beleive tiredness makes my PA worse and also makes it harder to deal with the pain

[annalou2006]

I agree with Smose, when the kids have had me up and I'm sleep deprived I cope with the pain and everything else much worse, snappy and irritable too! Hope you manage to kill the pain at night and get some sleep!

[Gav74]

Thanks everyone, I know I should ask about more pain relief, especially at night, but I'm scared about how many other types of chemical c**p I'll end up filling my body with and the side effects. I will ask though, maybe if I can get more sleep I'll be a nicer person to be around in the mornings!

Also, while I'm here. I had the worst pain so far began on Saturday. I was just walking around Great Yarmouth with my kids and my left ankle started hurting. It was one of those sharp shooting pains, totally unwarranted too. I hobbled along, but then and for the first time so far, the pain was so bad that I had to stop. I literally couldn't put any weight on it at all. After a couple of minutes, I managed to limp on and it eased a bit, but it has stayed with me and was burning last night.

I think that the thing I'm finding hardest to cope with, apart from the general unfairness of having this poxy condition, is the unfairness with which it selects it's joints. I didn't do anything to that ankle, I wasn't using it any more  than the other or more than usual. I had to dig out one of my old mountain walking poles to help me get around FFS. I'm only 39 and otherwise fit and healthy! (I'm screaming that at some non-existant responsible person, btw).
Oh, and while I'm ranting, these oral steroids aren't nearly as effective as the injections either. The random pains only went away for a day or so before coming back.
On top of all that, I'm no longer the happy-go-lucky, fun person I used to be and my new family don't deserve that. I hadn't even considered how this fekkin thing could affect everyone close to me too. Now I'm failing to hold back the tears in the middle of an office full of people. I think I need some fresh air...

[newshaz]

Unfortunately, we do affect the ones that are closest to us.  (well I tick that box anyway) Yes, it does get on top of us, where you want to hide in a corner and just bawl your eyes because of the unfairness of it all. (I was 43 when diagnosed).
It took me and is still taking me time to come to terms with this horrible disease. I think the psychological impact is quite awful and quite underestimated by peoples..

[smose]

BIG HUGS 

I know exactly what you mean - just start to feel ok then some new joint comes and bites you in the bum! My jaw started flaring over christmas and it was a nightmare!

My ankle and right foot have always been one of my prime sites - last year had to revert to crutches and nearly always use a stick now just in case. I do have orthotic innersoles which have made an extreme difference. Maybe you could ask to see a podiatrist