Steroids

[tyncwmmarchhywel]

Hi guys, are there any of you out there on only 5mg Pred., and feeling O.K. Thank you.

[Deeb1764]

Do you mean with no RA drugs?

[tyncwmmarchhywel in reply to Deeb1764]

Yes I do Deeb, other than for other conditions, statins ramaprill etc., thanks.

[Stukatz]

i’ll let you know 😃 I’m currently weaning off bit prob won’t be at 5mg for at least a month - month and a half. Currently on 25mg.

Are you feeling ok on 5mg ?

Cheers.

[tyncwmmarchhywel in reply to Stukatz]

Thanks for reply no I DONT, they dont really want to increase my doze, the fatigue is terrible.

[Haired in reply to tyncwmmarchhywel]

Hi , I am on maintenance Steroid 2.5 morning 2.5 evening and next day just 2.5 am. I have Lupus & Sjogrens . If I go below 5mg my skin Lupus starts to appear again. I am also on Rituximab Infusions 6 monthly. Unfortunately the Fatigue comes and goes even with medications it can be difficult as you never know how the day will go. I do hope things ease for you soon.x

[Runrig01]

I take 5mg prednisolone daily, but that’s only because having been prescribed it for so long, I have severe adrenal insufficiency and niw need steroids for life. So I always urge anyone to try alternatives. I had a severe stroke due to not producing my own cortisol, and now need to carry an intramuscular steroid injection at all times. The 5mg does nothing for my rheumatology issues, I’m on biologics and methotrexate for that. I’m currently in a flare, and feel like I’ve been kicked all over by a bull, despite my cocktail. Sorry your struggling 🤗

[Createsomething in reply to Runrig01]

I've just read your post, hearing you say you feel like you've been kicked all over by a bull sums up a flare really well. It sounds just like how I felt in a recent flare. I really hope you're over it now and not in pain xx

[Runrig01 in reply to Createsomething]

unfortunately it’s ongoing. My back, pelvis, ribs and especially feet are excruciating. Unfortunately my rheumy refuses to look at my hands or feet unless the gp has seen them first. Have an appointment next Thursday with gp then I can ring the rheumy. My mum is due to visit, and I have to drive 90 mile to collect her at Gatwick, driving is excruciating when I change gear. Could do without it. Sorry feeling deflated today, and it’s not like me. Thanks for your thoughts, and hope you’re keeping ok at the moment. 🤗

[Createsomething in reply to Runrig01]

Sorry , I've just read your post. I can't understand why you have to be seen by your GP before the Rheumy, it seems quite unfair for you when you're in so much pain. I hope your appointment goes well, and you can get some much needed relief. The driving sounds painful, have you thought about getting an automatic? I really wish I'd kept up with my driving. Unfortunately I haven't driven for 20 years or more so it's so out of my system , I wouldn't be able to take it up again now. My brain and reaction speeds are too slow i think. I hope you're having a lovely time with your mum x

[Runrig01 in reply to Createsomething]

it’s utterly ridiculous that he refuses to even look. It infuriates my gp, as she says his job is to assess joints, and results in more months of suffering. He’s as useful as a chocolate teapot 😂.

My mum arrives on 9th June, so hoping I’m offered some relief by then. You take care, my daughter arrives Thursday for 5 nights so looking forward to some girly time 🤪👍

[Createsomething in reply to Runrig01]

Oh my goodness, he doesn't sound like a good Rheumy at all. Have you thought about asking to see a different Rheumatologist? It's his job to assess joints so what on earth is he playing at? It's hard enough to have RA and your other conditions without having to put up with a chocolate teapot😒. Hope you feel better so you can enjoy your girly time with your daughter and your Mum. Xx

[Runrig01 in reply to Createsomething]

I wii on eked as a nurse for over 30yrs, many of them as a ward sister. I have never met a consultant so lazy and lack of empathy as him. Unfortunately I have to stay local I’ve been told due to the funding for biologics. The other rheumatologist I was under for 3yrs, and he refused to accept something inflammatory was going on. I had polymyalgia, when I started getting GCA symptoms he dismissed them as I was 48, and you don’t get it under 50 😂. A consultant in Leeds happened to have seen a post of vascular lesions on my tongue, and was mortified they were dismissing GCA. She’s one of the countries experts in GCA. After special ultrasounds she diagnosed the GCA, but felt there was an overlap of another illness, which turned out to be ankylosing spondylitis. She was astounded that I’d seen my local rheumatologist for 3yrs, and he hadn’t scanned my pelvis despite it being my main issue. By the time I was diagnosed both my sacroiliac joints and ribs had fused. Kent does not have good rheumatologists, probably because we are close to London, where they can work in large teaching hospitals. So I’m stuck with my useless teapot. Thankfully I have no fear of challenging him, and I do tell him my gp is not impressed 😂🤗. I also have a respiratory specialist and an endocrinologist both in different Trusts who are brilliant, so it could be worse. You take care, and thanks for your support 🤗

[Barbs52]

hi, I’ve got primary Sjögren’s and have been on 5mg pred since 2016 along with 2grams of Mycophenolate daily ☘️

[oldtimer2]

I don't think taking steroids without anything else is a good idea. I was left using occasional courses of steroids (not a maintenance dose but several courses a year, often most months) after the consultant said that I was 'burnt out' and didn't need the DMARDs any more - this was thirty years ago when opinions on treatment were different. I then moved area, had a major flare and started on better management.

I wish now that I had continued on the DMARDs as I would not have ended up with so many of my current joint problems. I'm now on adalumimab and I think it's wonderful after so many years of pain and difficulty with function. But because I've had so many courses of prednisolone I have to also be on a mainentance dose of 5mg.

[tyncwmmarchhywel]

Thank you all for your replies, it helps to see how others manage . Will let you know what I an thinking of doing next, when I get a bit mor energy. Diolch.

[Angels54]

Hi , I want to get down from 10 mg still not feeling great.

[Al1954]

I am on 4 mg of pred since 2013 with RA sometimes i get a mild flair but cant take anything else as i have tried bioligical and had cancer so not much left.But so far doing quite well its very low dose.In my case after trying all meds possible the only medxthat works for me are steriods.Hope something new comes out for people that have had cancer.