Hey fellow spoonies. Just after some advice on how you'd approach this situation. I feel like I've pretty much been in a flare on and off since Christmas. I was given some pred tablets (v low dose) for some of Jan and Feb, which really helped. But since then it's gotten worse agqain.
Then two weeks ago I had a steroid injection at my rheumatologist appointment because I said I was still struggling with a lot of pain. But that's already worn off. Even over the counter co-codamol isn't helping massively at the moment (I can't take nsaids as I'm allergic). I'm currently waiting to see if methotrexate is going to work for me. But I just feel so unwell all the time and it's becoming unbearable.
Would you get back in touch with your rheumatologist/nurse and let them know? Should I be asking for more steroids? Any advice gratefully appreciated!
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SlothSandpit
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Hi - sorry to hear you are struggling - can relate to your pain. I would definitely speak with your rheumatologist to see if he can tweak your medicine or change things. Wishing you a swift recovery - Hessie 🙂
It's a tricky one because I'm currently waiting to be switched over to the methotrexate injections (4 weeks and counting) and my rheumatologist thinks these will have more of an effect. So a lot of their advice has been wait and see how you get on...
Methotrexate injections are 30-40% more effective than the tablets. Could you temporarily increase your tablets whilst you are waiting for the injections. Whilst I was waiting for my first set of 20mg injections my consultant allowed me to increase my tablets to 25mg. (I had to ask to do this though - it wasn't his suggestion).
sorry miss reply i have olso been on 5mg of predislone for four years but with nothing else on offer what else can I do I am sero negative diagnosed 2008 thank you fatigue takes offer your life doesnt it
I've been lucky I didn't really realize I was fatigued until quite recently. I got a biologic in Jan (5th try on those) felt like a new person and realized how ill I had been.Then got pneumonia, just off antibiotics and definitely fatigued. It's terrible.
I've only gotten down to 5mg pred once...ages ago. I feel like a failure as I just can't manage without it.
Are you currently taking oral methotrexate, till injections arrive. Are you allergic to allNsaids including Cox inhibitors.
I personally would be cautious re prednisolone, I developed severe adrenal insufficiency from using steroids, for a separate condition where steroids were the only treatment. I was only taking 4mg pred at the time. Anyone on steroids more than 3 weeks risks AI, which can cause a crisis when exposed to stress good or bad. That may be an infection, an injury, even a wedding. I had a severe stroke due to an adrenal crisis, which is how I was diagnosed. I have to carry an emergency intramuscular steroid injection to use if sick or injured, and family trained to use it. It impacts my life completely, someone playing a prank has caused me to become very unwell, as my body doesn’t produce the cortisol in response to stress. That results in nausea, lightheaded, headache and BP plummeting to 80/50 needing treatment. Sorry for the lengthy response, but I feel it’s important people are aware of the risks of steroids. They also can cause osteoporosis, diabetes, glaucoma among many other conditions, so I would look for an alternative.
Definitely contact them and see what else they can offer, and get them to chase the injections.
Yeah just the oral tablets for now. I feel the same, I'm reluctant to rely on steroids as a fix but that seems to be the only thing they offer as short term relief! I will give them a call today 👍
Oh gosh. I am aware of the side effects, I can't imagine coping with all that. I do feel myself that I really need to get of them...and I am really trying but I'm in so much. Pain with lower doses. The whole thing is crap.
It sounds to me that your combination of additional pain relief following your steroid injection isn't enough to stop your pain in order to lead a normal life time table. Definitely go back to your RA team and ask for a review of your pain relief.
My rheumy nurses have been the ones to advise on pain relief - they seem to deal with it more/ be more aware of the problem than the consultants and registrars. Hopefully they will be able to help you 🤞
Speak to your RA dept and ask for their advice. It's their job to help and we all react differently to the meds, perhaps also a little affected by what is going on in our lives. Hope things improve soon. 🐕🐕
WELL I started in September and took it until November but my liver enzymes went too high so I had to come off it. Then I restarted in January once my levels had settled and I've been taking it since then. My rheumatologist said that the injections are more effective so it's probably worth seeing if they're any better?
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