When I went to the consultant four weeks ago, it was decided to put me on MTX starting in June, after I come back from a short break. In the meantime I was given a course of steroids. I’ve had injections before but not tablets. I have to say they don’t like me all that much - I can’t sleep well and they made me feel groggy, but all OK now. BUT this has all led to the exciting news…I went out today without my walking stick! First time in three years I have been able to do that - and I felt totally at a loss as to what to do with this hand I suddenly had free! It’s not that good every day, for sure, but it is a reminder of what normality feels like, if only for a few weeks. And that reminder gives me the kick up the rump to give the MTX a fair whack - if it means I can be like this permanently! Not everything is better, they’ve made no difference to the arthritis in my neck - although I have a feeling that could be osteo rather that psoriatic, as neck arthritis runs in the family - but I can at least move with far less pain, and get up off chairs without pain. The other thing is how much more alive I feel (despite the lack of sleep). Normally I would be sleeping about 12 in every 24 hours - but now I’m not, and I don’t feel I need to. The GP seems to think this is because the inflammation is much lower, and therefore not making me feel as lethargic etc. That makes sense, I guess. I think we get so used to feeling crap that we forget what we’re meant to feel like.
Sadly not everything is great, though. The reassessment for ESA drags on still further. I rang up three weeks ago and was told everything would remain in the support group - but now they say the person on the phone made a mistake (despite me checking with him that he had not) and no decision has yet been made. They tried to make out I’d made the whole thing up - so I said if they thought I was hallucinating that much then it would make their decision easier as I clearly wouldn’t be fit for work if I was seeing and hearing things. They didn’t find that amusing. In the meantime I didn’t find it amusing that, just by coincidence, they have got back to me and said that the phone call in question wasn’t recorded, probably due to a “glitch.” Very convenient, eh?! But this has all been going on since October - and may be no decision for another couple of months, apparently. As I said to them yesterday, they want people with mental health conditions (which I have as well as the PSA) to get well enough to go to work, and yet give them over six months of uncertainty as to whether their income will change. Still, there’s an election in six weeks, we can hope for a miracle…
I think your refreshing ‘steroid holiday’ illustrates one of the best aspects of these drugs. I had just one taper back in the beginning & it gave me a psychological break as well a physical one. I began to think that a much brighter future might be possible, to realise that my body had not completely had it and was still capable of functioning much better with a little help.
Steroids can also provide an opportunity to strengthen muscles and tendons which in turn sets you up for more improvement on Mtx. The soft tissues around the knee can start to waste frighteningly quickly so walking more now is all to the good. Yay to feeling more alive! So pleased to hear all this!
ESA … eurghh. Sounds about par for the course. Good luck, hope it all turns out well.
Yes, I have to say it is only now, after over three weeks of improvement that my legs no longer feel like jelly when I walk more than 100 metres! They are slowly getting some strength back now.
So, the big question is…how is my time with the steroids likely to compare with the MTX if it all works out OK? Is it possible that my joints could be this good with MTX or is that just not possible?
I call it the steroid capacity bubble. Very useful as a pick me up. And to give hope. And to get things done (perhaps a little too much) and though to re-set a positive outlook which then helps so much when you’re not on them anymore as you simply can’t be on them all the time. But certainly useful if you’re one of those that they work for. They don’t for everyone.
And they should help you make even better arguments for the ESA. And just be bloody persistent too. Best of luck on that one.
darinfan, I don’t want to give you false hope, so take this with a grain of salt - yes, it’s possible, with a mix of steroids and methotrexate, to end up feeling like a million bucks (kind of where I am right now, after 3-4 months of cane use). I’m under no illusion, and you shouldn’t be either, that it’s a permanent fix. Hopeful, yes, but tempered with realism (or pessimism, if you want to call it what my wife does).
Like Poo_therapy says, if they work for you, when the right dosage is found, they will work. They may not. It may just be a step to finding the meds that will work for you.
For me the improvement on Mtx was, eventually, even better than the temporary reprieve I first found with steroids. It delivered incrementally over a year or so, better and better over time, stiffness eased up, range of movement improved, pain lessened. But I’d started out pretty bad with one hell of a flare, the like of which I’ve never experienced since so perhaps things would have improved to some extent anyway, regardless of meds. Even so I’d say Mtx was better than nothing and better than steroids in that it kept on delivering and was a more sustainable treatment. But that was just me, it may not be the same for you. But there again it may be the same or better.
Mtx never managed to get my swelling down. After a couple of years I was still limited by relatively poor range of motion in my legs due to swollen knees - walking was still difficult, rising from a sitting position or even lying on my side in bed remained difficult too. Humira however, has tackled the swelling and helped me to function almost normally. Mtx seems to me to be an okay interim med for moderate to severe PsA, it’s irritating that it (or other DMARDs) are so often required before biologics can be considered, but potentially quite useful nonetheless. The big question of course is does it prevent joint damage, I think the jury is out but leaning towards a ‘no’. That’s the main reason why I always had my eye on biologics and fought to find a rheumy who would prescribe them.
I wish I wouldn’t be so afraid of prednisone…I just feel like it’s a temporary fix and, although it made me feel like I was “walking on air”, the crash after it wore off wasn’t worth it for me. Enbrel doesn’t give me the high that prednisone did, but it’s more a feeling of being well and about as close to normal as I could expect.
Glad for you, darinfan, you could toss the cane aside! I hope your good health continues!
I taper down ever so slowly so the crash effect is lessened. I taper down slower than the doctors usually recommend as well, solely for that reason. My tapering down scenario will happen in two weeks and I must say I’m not looking forward to it but it has to be done.
I’m encouraged by your description of mxt Sybil. I’ve tasked ‘our doctor’ with detailing to me whether it will halt the erosions. You’re saying it mostly doesn’t though? Makes me think what on earth am I doing having to take it, if it doesn’t halt erosions, other than to demonstrate I’m plodding the DMARD ‘walk of enlightenment/hell/or whatever’ ! I shall keep you appraised.
Re. whether or not Mtx is disease modifying, I’m going by the bible:
Psoriatic Arthritis (Facts) 1st (first) Edition by Gladman, Dafna D., Chandran, Vinod
Dr Gladman is from the world(?) renowned Toronto clinic and they still prescribe it. It’s a bit of a conundrum but I suspect a time will come when Mtx will get a positive reappraisal. Not that I know anything whatsoever, just that such things seem to happen.
Thanks so much Sybil. That’s why I get so frustrated with the meds issue. Simple me thinks that if I have to take x or y med then they know if that med is going to do a or b or have a or b positive effect on whatever is wrong with me. But of course they don’t really in our world. I find it somewhat horrible consequently that I have to put up with the ‘potential’ side efffects of x or y med and despite that it’s not really known if those potential side effects are worth it as in the med is actually doing what it’s supposed to do. So then I sit there and go ‘oh my gosh’ is it really this hard for them? And of course it is. So I go out and ‘kick some stones’ metaphorically and say lots of Irish swear words usually beginning with the letter f, do a bit a wailing and gnashing of teeth and then get over myself. I must say I am getting more nervous just waiting for my prescription which seems to be taking an inordinate length of time too. Will chase that yet again when I get back after next week.
You can hijack all you like - I have a habit of it. I’m down to two steroids a day now, going down to one in around ten days time. I actually finish them altogether on the day I go away - but hopefully they were continue to work for a few weeks after. The injections normally wear off really quickly for me, although it takes a few months for things to get back down to where they were to start with. But the tablets, for me at least, have made me feel better than the injections did. Not only am I getting strength back in my legs (although I still have “twinges”), I also feel much healthier on them - although I confess the steroids made me feel very strange when I first had them. Not ill as such, just odd. Weirdly, Dad used to have the same steroids for his COPD on a very regular basis and they never made him feel odd at all. Mum has them too from time to time without problems. And yet a friend of mine can’t hack them at all. It’s weird how we can all take the same meds and each have a different effect. I tend to find the same with antibiotics on the rare occasions when I need them. Ones that Mum takes without any problem at all end up with me in the loo half the day! How can our bodies be so different? And sometimes I look in the mirror and think my body is very different!!!
My mother used them for COPD too and got ‘roid rage’. Really not pleasant. For her or anyone else. I just get ‘busy’ and do a lot! And feel better and a lot more positive as a result. Which with this disease is a welcome interlude.
You all know I love my Prednisone taper holidays. The last one did two things. It got me through a very rough couple if weeks caring for my 85 year old dad, in and out of the hospital 3 times, like a boss. The other thing it did was get me a calcaneal fracture! I’m in a boot for 8 weeks with possible surgery. I didn’t mean to rain on your parade because I totally get it. It’s wonderful not to be in constant pain! But there are risks. I’ve rolled the dice a few times and this time I have to pay.
I hope you will enjoy your Prednisone party and come home safely
