Sadly this appears to have happened. And I did so well on it too, little or no side effects and just felt so capable Big poo. When I went up to 6 per day last October, it was like a switch just flicked on and off I went. Over the last week or two it seemed that switch has just turned itself off. I’m gutted frankly. I was so pleased such an easy no side effects drug worked so well for me which didn’t require any alterations in lifestyle either. However it does seem I’m more asthmatic on it - does anyone know anything about that? Dr Google seems vague on the issue.
Anyhow I chatted to the rheumy nurse hotline this morning and she suggested the steroid shot in the bum. Been on oral steroids but never offered this before. So my question is how long does it work for usually? We need it to have stopped working for my next appointment on 1 June and I need it to be working beautifully for my week’s holiday starting on 12 May. So when should I get it? Now or say at the end of next week?
I love steroid shots in the backside very much! They can work brilliantly. Mine have usually lasted some months so I’d say get it ASAP.
I’m sorry to hear Sulfasalazine doesn’t seem to be working anymore. Might this just be a bad week / fortnight? It happens even when drugs are working okay.
Oh NO @Poo_therapy, that just sucks!! BIG TIME!!! I was so pleased to hear that the sulfasalazine had done good for you… you’ll be hugely disappointed that it seems to failing
Trying to remain a little positive though, perhaps the fact that sulfasalazine did so good is an indication that there is hope, and you may find you do just as well, if not better, on what ever is next in the offering for you… I’ll certainly be keeping my fingers crossed for you which ever way it goes… if this current burst is like a break through flare, here’s hoping it resolves quickly for you!! If it is because the sulfasalazine has stopped working for you here’s hoping the next med on the list kicks in quickly and gives you relief for years to come!! HUGS!!!
I’ve no idea really if it’s a bad week or fortnight. All I know is that I’m back to pain and severe fatigue. With the worst place being my right foot where it all started. Felt like it started slowly and I’ve been sliding faster and faster into it until I felt like I just walloped into a wall this week. And then just cried like a baby as just about everything was too much. And I’m back to fantasising about getting the metal plate out of my foot.
What’s interesting in an odd way is that finally my leg wound is healing up. Yes that’s been going on since last September. Yes really. However it’s truly healing now. It seemed the better that got the worse the PsA got. It’s almost like my immune system has been awfully busy with that so left everything else alone. Now it’s bored and needing something something else to do instead.
The only reason I mentioned the possibility of a (time-limited) bad time is because I’ve had those and panicked, only to get back on track without a med change. I suppose though that as Sulfasalazine tends to be seen as quite a light touch option, it may have run out on you. Or at least that’s how I’d see it while waiting for the experts to work it out.
I’m serious when I say I love steroid injections in the backside. One time I thought ‘don’t actually need this one’ but then a day or two later when simply hanging out the washing I realised it just felt so easy going up the steps to the line, reaching up, bending down … I hope you get one soon and that it gives you time to catch your breath and have a good holiday in May.
Poo, similar happened to me at times - while having a cold, the PsA is quiet, and it seems My immune system is focusing elsewhere.
I’ve also had breakthrough flares, like Sybil mentioned, only to get back on track with the same med. Often it takes steroids just to damp things down, then the med will sustain that response in the long term, though you gotta start questioning things if you are bouncing on and off steroids regularly…
And I guess if the worst case is that the sulfa has run out, at least you’ve got a lot left up try, and a pro-active Rheumy
Enjoy the steroid shot, from what I hear they are great
Negotiating getting an appointment with my GP in order to have the steroid shot was worthy of the diplomacy skills of someone dealing with Brexit or the present Russian issue. I phoned up yesterday morning and asked had they got the fax from Bath. Yes they said we have. Goody thought I. So then I said any chance of someone giving it to me today then. No they said. This has to go through a workflow process, we’ll be in touch. Gosh I said when will you get in touch - later today? Oh no they said, we’ll write to you. I said when. Oh in the next week or so.
So I took a deep breath. And then another. And finally said I’m so sorry but this is an urgent request from my rheumatologist sent by fax (god knows why they can’t use email like everyone else) to you guys yesterday. It’s a prescription of a drug to get me going. It’s not something that can wait two weeks for a letter to me about it as I know all about it and presently can’t work without it. So then I get told we’ll see what we can do.
That was in the morning. By the afternoon, I felt just about able to get in my car and drive to the surgery as I thought maybe if they saw the state of me, even just in reception, it mght help. Thank God the nice new young receptionist was on. So I explained. She had to go out back to get a more experienced receptionist. And the upshot was that a doctor would phone me when I got home. Amazingly he did and wanted to know what joint needed the injection. I said no it’s not an injection for a joint as too many of them are playing up right now, it’s an injection in my backside. So then he said oh gosh you must be pretty bad then. I said yes that’s why Bath faxed you the letter. So God being the GP deemed it OK. Then he said you’ll have to phone back and do battle with the nurses to get one of them give it to you. So I did and spent a merry half hour holding telling me how I was doing in the queue. Lesson never phone a GP surgery at the end of the working day on a Friday. Anyway I’ve an appointment for midday on Monday. Phew!
However I am doing a little better since Thursday, basically as I’ve been doing nothing other than this yesterday and otherwise lying on my sofa. And yes I was thinking was I just panicking also. But my next Bath appointment isn’t till 1 June and I’ve a boating holiday to get on with before then and actually work too so I’m glad to be having something literally kicking me up backside into coherent capability. Roll on Monday.
Pfffff communication between doctor’s is so bad sometimes!! If you need your patient to explain your letter to the doctor you sent it too your incompetent! Seriously…
Sulfasalazine worked wonders for me for 6 years or so, but I had to slowly increase from 1000mg/day to 3000mg/day currently and that is no longer controlling my PsA either. Based on my Dr’s recommendation, input from this group, and the tough task of getting past my denial that my disease is progressing, I am starting Humira in a few weeks. Like you, Sulfasalazine did not require any lifestyle change and I had no side effects … but it just can’t keep up any longer. You are not alone.
Thank you for that. Once I hit the 6 tablets a day it worked wonders. Now 24 hours after the steroid injection in the behind, I’m doing great again. This morning it was especially lovely not to wake up in pain or stiffness. Presently both hands and feet feel perfectly fine as does my hip and elbows. That seriously does feel good.
Next rheumy appointment is at the very beginning of June. We’ll see what she says then.
I’m glad to hear the shot works so well! Let’s hope you will fly through your holiday! And that it stopped working before your appointment… but that you won’t notice since it was just a flare that’s gone again then! Crosses fingers
