Just had a steroid injection : Hi all, I had a steroid... - NRAS

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Just had a steroid injection

Lina282 profile image
16 Replies

Hi all, I had a steroid injection Tuesday afternoon and I just would like to ask if is it normal if all my symptoms get worse? I thought that it will be better in two days but I am still struggling to use my fingers,hands,shoulders, ankles and both foot.

Also what does DAS28 score 3.81 mean please if anyone understands it?

Best wishes and gentle hugs x

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Lina282 profile image
Lina282
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16 Replies
oKerrio profile image
oKerrio

I felt horrendous for about 4 days after my last steroid injection which was 4 weeks ago today. It’s already wearing off and the fatigue is driving me insane! DAS stands for disease activity score if that helps, I’m pretty sure it goes up to 10. Mines currently 5.5. Hope you get some relief soon.

Lina282 profile image
Lina282 in reply tooKerrio

So is it not unusual feeling even more pain for a few days after an injection....

Thank you for replying as I thought I might have the wrong diagnosis or something is wrong with me.

nomoreheels profile image
nomoreheels

It sounds like you had a steroid or cortisone flare, not what you're expecting when you've had a steroid injection. They can happen up to 2 days later, rarely longer so hopefully you'll start to feel the benefit soon. You should really have been warned about this when they told you what you were being given & the dose, also to rest to allow the steroid to work better. Do you have high BP at all? If so it can raise it temporarily just so you're aware. If you don't already have them regularly usually paracetamol helps.

Unfortunately some people don't respond to steroid injections, I'm one. I had my second general a couple of weeks ago, Depomedrone 120mg & nothing again. Actually that's a lie, from the first one I had one good day about a week after the general. I do respond well to localised ones into joints oddly.

Less than 2.6: Disease remission

• 2.6 – 3.2: Low disease activity

• >3.2 – 5.1: Moderate disease activity, may merit a change in treatment for some people

• More than 5.1: Severe disease activity, will merit a change in treatment for most people. nras.org.uk/patients

So you'd be in the moderate disease activity category. Hope this helps.

Lina282 profile image
Lina282 in reply tonomoreheels

Thank you for your reply nomoreheels :)

I like your username 😊

I don't have high BP , I actually have low BP and very high heart rate. I had localised steroid injections before but never had such a bad pain like now. As you mentioned cortison flare I read about it and it really sounds that's what I have. It's a shame that you don't respond to steroid shots well. 😔

Thank you for the info and website of DAS score I didn't know about it so it's useful.

I will have Methotrexate injection from next Monday so it's a bit scary but hope it will help.

Have a peaceful night. Lina

nomoreheels profile image
nomoreheels in reply toLina282

You're welcome. I hope things are settling down a bit Lina?

If you get on as well with MTX injections as I do you'll be fine. It is a bit of facer to begin with but it does become second nature the longer you do it. A little tip you may want to think about, I always inject straight after my shower when I'm squeaky clean, that way I don't need the antiseptic wipe as I found it stung a bit. Otherwise you really don't feel it. Just pinch a bit of skin on your tum, inject & you're done. Some inject into their thigh but I tried it & bruised badly plus I felt it more so I went back to alternative sides of my tum. When I get my months supply to remind me which side to do that week I write L or R on the box, saves me wracking my brain which side I injected into the previous week.

PS I was a little confused, easily done. I kept seeing the same picture, the one next to your username, then realised another member has the same one! Don't think I've ever come across that before.

Lina282 profile image
Lina282 in reply tonomoreheels

I started to feel better today,thank you.

The fatigue and stiffness are definitely better.

I am a bit nervous about the injection but I am really greatful for your advice and that you are telling me your way to do it.

I didn't choose the profile picture it just came on. 😋

nomoreheels profile image
nomoreheels in reply toLina282

Ah, I didn't know they were automatically added. We used to have a silhouette on a coloured background or a drawn smiling face with a coloured halo so seems HU have changed it. When I think about it the other member is newly joined thou she had been a member previously so rejoined really but still only recently.

I'm pleased the fatigue & stiffness are better, fingers crossed it improves even more.

It's understandable to be nervous if you've never done it before but you should have or should have had it demonstrated to you & then the nurse will watch when you do your first one. You'll find a way that's best for you I'm sure.

Lina282 profile image
Lina282 in reply tonomoreheels

I will have this demonstration/give it to myself next Monday, I will let you know how it goes :)

Have a lovely weekend xx

nomoreheels profile image
nomoreheels in reply toLina282

Yes, do. I'm sure you'll be fine.

You have a lovely weekend too. x

jojo_71 profile image
jojo_71 in reply tonomoreheels

Hello NMH

I think I posted about the different types of injection ages ago.. But they ie hosp once gave me a depomedrone and I had nil response, but I have fantastic response to kenilog.. Have you been given one of those before? I think they must work slightly differently, or just be stronger? Xx

nomoreheels profile image
nomoreheels in reply tojojo_71

No I've not & I'm not sure of the difference but will have a rootle about & see, I'm pleased they work for you. Actually I replied to a post about steroids recently & said because Depomedrone didn't work again I'll not bother with generals my more & AC asked if I'd been offered different ones, that Kenalog works for RD sometimes, small world. I'll definitely mention it at my next appointment, see what my Rheumy thinks because the one day I had was a wonderful one & if Kenalog gives me that but extended then I'd be more than happy to trial it! Thanks Jojo.

jojo_71 profile image
jojo_71 in reply tonomoreheels

Definitely ask!

Sometimes I've been well, for 6 weeks up to 3 months!

Although am not sure if they've changed something recently.. As last one was up to 120, but did not work as well as some of my 40s and 80s... Why do they have to fiddle with things!! 🤔

But kenalogs are still miracle workers!

Take care and keep well. Xxx

nomoreheels profile image
nomoreheels in reply tojojo_71

Wow! I'd be happy with 6 weeks, over the moon, maybe literally!

I've had a look & obviously they're both corticosteroids. Depomedrone is methylprednisolone acetate & Kenalog is triamcinolone acetonide. There are more potential side effects listed for Kenalog & it's sometimes given if there's a allergic reaction to DM. Similar cost to NHS, Kenalog slightly more expensive but still not the cost of a prescription!

I do hope next time you have one it gives you better & longer results. Maybe you were given a slightly different one, generic maybe rather than actual Kenalog & you respond better to the branded one?

Anyway, thanks for your help, something I'll definitely bring up at my next appointment. You take care & keep well too. X

nomoreheels profile image
nomoreheels in reply tojojo_71

I just read your steroid post Jojo. I put my twopennorth in then didn't I!? Completely forgot about it, but it was 4 years ago in my defence. 😐

jojo_71 profile image
jojo_71 in reply tonomoreheels

Haha NMH! Yeh many Yrs ago.. 😊

Since then I've always asked for a kenalog,. Take care hun. Xx

nomoreheels profile image
nomoreheels in reply tojojo_71

Indeed. Thanks, you too. x

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