Hello, Help and what next?

mixednuts

Hi all, I've just joined the forum although I have had PsA for about 10 yrs now. I was also diagnosed with OA around the same time in my neck which tbh doesn't really give me that much of a problem now other than reduced mobility. On the other hand, the PsA has totally gone nuts!
I've been on sulfasalazine for about 5 yrs and mtx for 2 yrs now (plus the mandatory anti-depressants LOL) but this past 6 mths seems to have been an almost permanent flare. When I saw my rhem week before last he said he wanted to start me on biologics which I assume to mean humira as I will be injecting once a week. He also gave me a steroid injection in my backside which usually does do some good but this time doesn't seem to have touched it - is it normal for this to happen? I'm wondering if the PsA activity has advanced to the point where the steroid isn't going to touch it because usually it would have done by now? I should have gone back to the rhem months ago but unfortunately didn't as I had trouble with one of my sons.... I have four children, two of which have autism and adhd - one of them (the youngest of the two) is severe and had to be statemented. That was a major feat in itself!
Anyhow, the combination of stress, not looking after myself and not seeking help are now really taking their toll. Sorry to waffle on but what I really want to know is...... is it normal for a steroid not to have an effect, how long will I be on the biologics before they take effect, other than nsaids which I can't take (due to stomach bleed) is there any other pain relief that could be effective and finally, PLEASE can someone suggest something, anything that helps relieve fatigue. Most of the other stuff is bearable but the fatigue really gets me.
Thanks for listening.

dreamdaisy

I can say hello, I can't help much and I've no idea what will be happening next either to you or me.

I too have PsA, I am on the humira/meth/sulph combo and the humira is my third and final anti-TNF / biologic med. There are quite a few out there on the biologics front so you might be recommended something else - I've done infliximab (infusion) followed by enbrel (bi-weekly injections done by me) and now the humira (fortnightly injections - also self-administered). My meth is in liquid form and I inject that weekly. The sulph controls my psoriasis and the meds contol the PsA but my joint damage is way past repair and I now have OA in both knees, both ankles and now my right hip and am reliant on walking aids. No matter.

I can understand why you've put the others first but now it's time for you to give yourself that equal concern. It sounds as though your arthritis is out of control and does need quelling else things could go really pear-shaped so I hope you are able to begin a new med soon. They can take effect anywhere between 2 - 12 weeks but don't expect a miracle (they can happen but they're pretty rare). It is perfectly normal for injected steroids to do sweet nothing and as for the fatigue - it's part and parcel of the disease (especially a rampant one). Rest and pacing oneself is the only answer to that.

As for pain relief well, the stronger the relief the further you are taken away from the pain, not vice-versa. As a mum you are going to need your wits about you so I suggest a chat to your GP is in order. I get by on about 4 cocodamols per day, sometimes 6 but I try to keep it to a minimum as I need to function as best I can. I resorted to slow-release tramadol recently (my husband has been pretty poorly) and that did help matters but I couldn't have done my work whilst taking it. (I'm a self-employed tutor for dyslexics).

I wish you well and please keep in touch - this is a good place for information and support. DD

mixednuts

Thanks DD for the reply
My PsA was OK for quite a while, just plodding along with flares but manageable but it's just gone, as you quite rightly put it, out of control! Everything that used to work no longer seems to. I get very frustrated with myself too as I feel so useless. Even having conversations can be hard as I've got very little concentration and NO focus at all thanks to the fatigue. I'm defo on one of those 'I wish I'd listened to my body ages ago' trips :roll:
My fingers and wrists have joint damage and I'm due a hip xray next time I see my rhem - hopefully that will be OK. My knees are really suffering at the mo - my weight isn't helping that one at all I know but it's amazing how much comfort you can find in a bar of chocolate even if it is very shortlived.
I've tried tramadol but as with you, it just knocked me out and caused other issues.... Any of the opiate drugs are out as I can't tolerate them (major bilious attacks ensue shortly after taking them once leading to hospital treatment!). I tried slow release diclofenac but that triggered stomach issues so that one was ruled out. The only ones I can have now are paracetamol and pregabalin. The pregabalin is usually prescribed to people with fibromyalgia because it treats nerve pain. Tbh I'm not sure if it helps or not anymore but I take it anyway!
It's interesting what you say about the steroid injection - it has worked in the past albeit for a short period of time but this time round it's not even touching it. I've woken up the past couple of days thinking today is the day I get up and hot foot it down the stairs and then the realisation kicks in that actually, I feel the same as I did the day before :?

dreamdaisy

What's done is done and can't be changed so don't waste your time regretting things. It's time to focus on what can be done now to slow the progress of the disease. Any arthritis is degenerative and progressive but the rate at which that happens is unique to each person. Meds don't carry on working for ever, they can and do lose their effectiveness and then a change is needed. People also vary widely in their response to the meds - what works for one may not be so good for another so be prepared for some trial and error. Also be conscientious about the blood tests - they are very important and must be done regularly.

We are each on our individual meds tightropes - you say you had slow-release diclo, we're you also given a stomach protector? I take one diclo every day to help with my Achilles tendonitis and I also have Omeprazole to guard my tummy. I reckon that should also help the other things my poor tum has to tolerate. I know exactly what you mean about the concentration thing, I've had to shorten my lessons because mine is so patchy. As for energy, what the hell is that? On an average day I'm wading through porridge, on a better one life's more like gravy and on a rough one (like today) I'm set on concrete. I had a to-do list today of four essential things, I've managed one and that's it. No matter, the rest will still be there tomorrow for further non-achievement. :roll: DD

frogmorton

Hello mixed nuts and welcome to our forums


Sounds like you have a lot on your plate wth the kids, your health andthe 'statementing' battle. You are doing well to be as chirpy as you are.
I am very pleased you found us.

First of all those there steroid jabs don't often work for me either, but l live in hope

Secondly have you considered the newer Cox2 inhibitor type anti inflams??
They are far more gentle on the stomach.

I hope to see you posting in future and hope that your biologic really helps you, whichever it is.

Love

Toni xx

mixednuts

Thanks for the info re cox2 drugs. I went to my GP with it yesterday but she said I was too high risk for them too which is a bugger. Never mind was worth a try