Question re steroids

[Georgie-girl]

I know everyone reacts/responds differently to steroids but can I ask roughly how long they take to work for you?

I usually find they work pretty darn quick for me but this time they are just not getting there.

Aches and pains in muscles and joints are gone, all the ENT related stuff is almost gone and the chest pain also, but they don't seem to be touching the internal stuff.

11 days in and I'm still having breathing problems and digestive issues and the swallowing has gotten worse. Actually, so has the SFN in my feet.

I am due to start back on MTX in the next couple of weeks so maybe that is what this needs?

Or do these things just take more time, or is it just that the disease process is advancing?

Any input appreciated. Thank you.

[Barnclown]

Good question...I've often wondered this 😆

I feel pos effects almost immediately I increase, say from my usual 5mg per day up to 10mg, as I did a week ago

Today I dropped to 7.5 and am noticing no diff...which is the aim of this taper. Next week I'll be back to 5mg, hopefully noticing no diff

When I first started pred a few years ago, the initial dose was 10mg & I felt so manic + such relief from symptoms that I was shocked. My suspicion is that higher doses would badly upset my mental stability...I think I'm a prime cadidate for steroid induced psychosis 😏

Will be following this discussion with great interest

I do hope you talk to your doctors...sounds like you need more help

🍀🍀🍀🍀 coco

NB pred's pos effect for me is as part of combined therapy which includes daily hydroxy + myco + semitropical

[Georgie-girl in reply to Barnclown]

Thanks BC x

[whisperit]

I definitely notice some effects within about 20 minutes of taking my prednisolone tabs - I get a flushed face and a shaky feeling. But for chronic inflammation, at the doses I have been taking (20mg a day or less) it seems to be more in terms of weeks than hours *for me*.

So with my lung inflammation, I think it was a good month at 20mg before I could definitely say I noticed my breathing easing. But I am aware that high dose pred is a treatment in crisis situations, so presumably a higher dose would act more quickly.

But I don't know what the science says.

[Lupiknits in reply to whisperit]

No idea about pred, but I'm interested in replies. My rheumy ruled it out because I can get the teensy weeniest manic. Never been over the top manic, but at the moment I feel so bad physically it might be worth the risk. I was away with the fairies on initial doses of gaba and stopped it fast because I knew that the strange hallucinations (never had them before) were extremely unreal.

[Georgie-girl in reply to Lupiknits]

Crickey, glad you stopped the gaba. Hope you found something else that works well for you.

[Georgie-girl in reply to whisperit]

Now I feel better, thank you whisper. Glad it's not just me taking time to have an effect on the breathing. I started on a week of alternating 40mg-30mg now dropped to 25mg and to be honest I feel worse than I do when I start on 20mg. Guess I need to give it another week or two before I panic. Thank you.

[whisperit in reply to Georgie-girl]

Don't take my experience as anything more than my experience, mind, Georgie-girl. It's a worrying business, isn't it? I do hope it improves for you very soon x

[Jan101]

Hi Georgie-girl

I have had untold steroid injections and my body has always responded very quickly to them in a couple of days. However I have just had some put into ether side of my spine and they have not been successful. I see my spine specialist next Tuesday so I will ask him why as every other time they have worked fantastically. If I think about it I think it has worked on my right side but definitely not on the left side. However I know steroids don't work for everyone. If you don't mind me asking what you have wrong with you and how long did you have your injections? I hope that you are as well as you can be. Sending you warm hugs 🤗 🤗 xx Jan101

[Georgie-girl]

Mine are not injections Jan, I take them orally. Hope you've had some relief for the left side now.

[Wendy39]

Hello. You've had great replies. I just wanted to say my experience of steroids is limited. I've been given them twice. Last July 2016 when I was very poorly and still considering which immune suppressant to start for the first time. I had a 5 week course. 20mg for two weeks, 15 mg for a week, 10mg for a week and 5mg for a week. They worked very well for me and I have to say that the effect was definitely within 24 hours. They had such a positive effect on me, my symptoms and my energy levels and it was the first time I had felt normal for years. I was given a second course, exactly the same instructions in August 2016, for when I was increasing the MMF from 1g a day to 3g a day and was worried about how I'd cope on a family holiday to Italy for 2 weeks. (A holiday booked when I was in a good place and then found the thought very frightening closer to the time and not at all well as it approached). I am sure that I have picked up from somewhere that the longer you use steroids and the bigger the dosses, the longer they take to work in future, that the first "buzz" for no better word coming to me at the moment, is never the same again. I may be wrong. It might be my memory, which wouldn't be unusual. Also, when I asked a different Dermy whether the MMF would have the same positive effect on my lupus as the steroids, his answer was, "well they wont make you euphoric like the steroids have." I wasn't on them at that time. Course was finished. I thought he was quite cheeky. I didn't realise that was a known side effect. I wouldn't have said i was euphoric though. Just my normal, positive, happy self. Good luck. I hope you feel better soon. Fingers crossed. Wendy x

[Georgie-girl]

Thanks Wendy,

That makes sense actually as they have always worked really quickly for me in the past.

Even this time they worked on the joints, muscles, nerves etc pretty quick, it was just the breathing that seemed to worsen before it started to improve.

Having said that though, I never had these lung issues when I took steroids previously so maybe these things do take longer.

I wouldn't say I was euphoric on them either. They just help us with pain and horrible symptoms and enable us to live life a little better.

If that's euphoria, bring it on!