Steroid injections. Oh my gosh. : So, today I had... - LUPUS UK

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Steroid injections. Oh my gosh.

AmyKG profile image
14 Replies

So, today I had my appointment at the rheumatologist. I've been on hydroxychloroquine for 6 weeks and symptoms are not getting much better. I still struggle every morning with swollen joints in my fingers and muscle pains in my biceps and calves. I also still have a rash on my chest from 6 weeks ago.

The doctor told me the best thing to do at this point would be a steroid injection and stay on the hydroxy and come back in 6 weeks to check symptoms again.

However, NOBODY TOLD ME HOW PAINFUL STEROID INJECTIONS ARE. Oh my word. Naturally, I bruise very easy (inherited thrombocytopenia) and am quite thin and not very muscly. 3 hours post-steroid injection I am laid on my bed in so much pain, feeling like my bum has literally fallen off. "Sharp scratch" he said, "stings a bit" he said... nearly broke the arm of the chair I was holding onto it hurt that much 😂

Just hope this works and I feel a bit better soon! 🤞

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AmyKG
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14 Replies
AmyKG profile image
AmyKG

Hi IAmAnElf,

I'm sorry about your rheumatology team, mine have been difficult at best since my diagnosis.

I have heard that prolonged steroid use has some quite nasty side effects but one-off injections should not be cause for concern. Have you had injections before? If so, how did you manage the pain?

He did say it may take up to 12 weeks for the hydroxy to kick in however the steroid injection should speed this up and help to get rid of my chest rash.

Amy x

AmyKG profile image
AmyKG

Aww, I'm sorry. I'm here if you need a grumble x

Ronswife profile image
Ronswife

Sounds like he hit the wrong spot. Did you call him? This doesn't sound right.

AmyKG profile image
AmyKG in reply to Ronswife

Hi Ronswife,

I've never had them before and didn't know what to expect but I thought they would have at least warned me of the pain if it was meant to be painful. I'm going to see how the next few days go as it takes up to 48hrs to kick in. Hoping I never have to have another one again! 🤞

nanagill profile image
nanagill

Oh my goodness AmyKG that sounds painful. I've had a couple of steroid injections in the past and had little or no pain with them. However, I did have a very red face for a couple of days starting the day after the injection. Made me look like I'd fallen asleep on a sunbed :) I do hope your pain eases soon

AmyKG profile image
AmyKG in reply to nanagill

Thank you nanagill, I hope so too. I'm glad your injections went well and will watch out for the red face in the coming days! x

I think it's oral steroids that cause the long term issues because the body becomes dependent on them and then each taper causes us to flare. IM steroids are generally preferred by rheumatolgists because they can limit the amount we get and they give a short term boost until the longer term medications start to kick in. That's the idea anyway. I have only had two - one many years ago when I had anaphylaxis and another over six years ago now - which effectively masked my symptoms for about 8 or 9 weeks. I don't recall them being particularly painful compared to other things but then we all have different pain thresholds and I've got plenty of padding. However I do bruise very spectacularly and currently have a spectacular bruise on my arm from routine blood tests. When having vents put in during time in hospital they were unable to find anymore veins that were good enough and I had phlebitis all over my arms and hands by the time I left. Sometimes i think they can misjudge where to put a needle quite badly.

I do hope this jab proves itself worth the pain in the end for you though 🤞🏽

AmyKG profile image
AmyKG in reply to

Hi Twitchytoes, thanks for the info about IM and oral steroids! I'm new to all this stuff so pretty clueless on medication and injections.

I'm sorry to hear about your phlebitis and bruising, that must have been awful for you :( I hope the bruising goes down quickly, I bruise like a peach too! Fingers crossed the injection (and pain!) will be worth it, hope you are well x

Lupiknits profile image
Lupiknits

Could they have hit the wrong place? I had two injections at once last year - each hip, and was told it could feel a bit sore afterwards, but it really wasn't. I'm a skinny one, too, but the doc said that made it easier to get the right place!

I was also told to get right back to them if I had any problems. Sound like you need to?

AmyKG profile image
AmyKG in reply to Lupiknits

Hi Lupiknits, I think they must have hit something because the pain was terrible. I came over very nauseous and shaking when I came out of the clinic but that only lasted around 10 minutes. I feel a lot better now, a little sore though. I'll see how I feel tomorrow and may give them a call if I have any more worrying symptoms x

Lupiknits profile image
Lupiknits

Best thing to do. Sounds like they may not have got it quite right. It barely hurt me at all. Take care x

Neonkittie17 profile image
Neonkittie17

Of course there are side effects. Even if mild. What an odd thing for them to say!

Neonkittie17 profile image
Neonkittie17

Hope you soon feel the benefits of your med Amy. Wondering if the nurse/doc hit a nerve which made you feel so sore. Normally I don't feel a thing but then I've had quite a few over many years but we all feel pain differently. You have a lot of that going on anyhow. Take care. x

4373 profile image
4373

I wrote at length about my miraculous journey, ongoing I might add. Do I referance my number or start all over?

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