Feeling worse after steroid injection: I had my first... - NRAS

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Feeling worse after steroid injection

Pinkypie2018
Pinkypie2018

I had my first rheumatologist appointment in the first week of January and was given a steroid injection in the backside. After a day or two I started to feel good, aches and pains in joints were gone, along with the morning stiffness it was bliss! Roll on 3 weeks later I felt bad in the mornings again but I could cope as it didn't last long like before. I was told the injection should last roughly 6 weeks until my blood an xray results came back. Now it's 4 weeks and I just feel dreadful and had to take a week off work. I literally feel as if I've been run over by a double decker bus, I can't sleep with the pain in my feet and hands at night and I just feel so horrible with zero appetite. I think I actually feel worse than before the injection. Has anyone else had this that the injection has left them worse off? As I'm quite new to this I'm not really sure what to expect.

22 Replies
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Unfortunately pinkie yes. Do however call the hospital for advice .sometimes they will give you steroids by mouth on a lower dose to get yo to your treatment.

The good news is that you defo respond well to steroids and that proves it is definatlybinflammation going on. Don't forget you can get lots of info on the NRAS website and also their helpline number is there and they are great xx

Pinkypie2018
Pinkypie2018 in reply to allanah

Thanks for the great advice, it does seem like a really good website! It's reassuring to know that this is 'normal' after the injection wears off. I just wasn't sure at all and yes it is good to know it definitely is inflammatory, just a pity it didn't last lol. However my joints aren't swelling as much this time round, there just very painful.

allanah
allanah in reply to Pinkypie2018

Do let the staff know it was short term tho. It helps them to gauge your treatment . Also I suggest seeing your GP....they are the best I found at working out good pain relief for you which in combination with the steroids will help.

One you see the team you can also ask to see occupational therapist who can prescribe things like wrist splints ...so comforting. And don't to get things like hot or cold packs onto sore joints can ease it for you. Keep talking on here!!! Good luck

Pinkypie2018
Pinkypie2018 in reply to allanah

I will do thanks, ibuprofen and paracetamol doesn't seem to be doing their job anymore. Oh I would certainly need something like the wrist splints and I have been using ice packs, I find the heat irritates them more, and I use the hot water bottle on my feet as their constantly cold.

allanah
allanah in reply to Pinkypie2018

You sound just like me. Ice on wrists and hot water bottle on feet lol. Yeah do see go I got lots of other pain killers. Bit trial and error as some knocked me out but others really helped! Do call the rheumy team too and see when you're next appointment will be to step.ul.your treatment. You find unless you call them they just presume your sorted on your steroid. Do tell them it's work off ! Xx

Liggle
Liggle in reply to Pinkypie2018

Morning I was the same after a Steroid injection, just like you wonderful for a couple of weeks, then ache’s in places I didn’t know I had, feet and hands the worse , could not sleep, lost two stone still losing weight (which I could afford to lose ) I don’t want to lose anymore, sorry this is not much help too you , thinking of you , if I get any help I will share it with you, don’t think the weather helps love Elizabeth

Pinkypie2018
Pinkypie2018 in reply to Liggle

All replies are a great help and I was thinking was it the cold weather that brought it on? You never know with these things and especially with it all being so new to me it's great you have other people to ask. Sorry to hear your not feeling so good either, it's my hands and feet troubling me the most too since the injection, we certainly don't get it easy!

Hi Pinky, Sorry to hear you re feeling not too good at the mo. For me, injections in the bott are short lasting and although work immediately I experienced being back to the same old pain and stiffness after they had worn off. I don't have them tbh anymore since my RA med is working very well for the past four years so there's no need, but before that when I was between new meds or newly diagnosed, temporary relief was great and I think you often forget during those few weeks of pain free, unseized-up bliss what it was like to be in that level of RA pain etc till it comes back again and seems to feel worse. The Kenalog/Depo Medrone injections in the backside only lasted 2-3 weelks for me. Helped tide me over until a new RA med was commenced etc. As for the injections into the joints ... they work for a long, long time for me (6-8 months) but you can't have one unless you've got a specific inflamed/swollen joint. I presume there is some imminent plan to look at your blood results with a view to starting on an RA med very soon. Your GP could help you with pain medication and check if there's anything you are allergic to if you're not used to taking painkillers/anti-inflammatories. Have you a helpline for rheumatology you can phone and say how you feel and need advice for your pain control? I would phone there first if you can. Hope you hear back from the blood tests very soon and can get started on controlling the condition rather than it controlling you. Good luck. x

Yes I was told I would be seen again within 6 weeks to review the bloods and xrays and if the bloods supported her suspicions her first choice of treatment is methotrexate. My dad had psoriasis arthritis and was on this so I do know a little about it. I know fingers crossed I don't have long to wait until my app now and I can start my treatment. They never left me any contact numbers so maybe I could ring the gp for that? I have to collect my sick note tomorrow so I will mention it, thanks.

I am sure you will hear soon but always best to have the contact number.

Hidden
Hidden in reply to NeonkittyUK

I had a really swollen kne, that split the skin. Oddly it diddn't hurt - except when I tried to kneel down. My rheumy was really against giving me a steroid injection for fear of introducing an infection. As my knee didn't hurt, I didn't bother having one. Swelling eventually went down. It might have been different had it been a painful swelling.

NeonkittyUK
NeonkittyUK in reply to Hidden

Gosh poor you. Sounds awful, splitting the skin. My swellings are beind the knee (Baker cyst). x

I had similar when first diagnosed...felt dreadful, got a steroid injection and felt good, then a few weeks later felt worse than before. With the cycle repeating every 4 weeks or so until the drugs took hold.

But as Allanah says this can be a useful thing to decide your long term treatment.

I do feel so much better knowing its just not me then! It's a horrible cycle but glad to hear you can get over it once proper medication is found.

I was so depressed, I really thought that my normal life was totally finished as I was so helpless. Roll forward a year or so and I was back to normal'ish and have largely stayed that way ever since. Fi gers crossed for you!

Ah I'm so glad your feeling better now though. Feeling a bit sorry for myself too this week, it's very easy to get into a depressed state when your in pain an not being able to get out much.

Yes once you are established on an RA med you will soon be on the path to feeling so much better. It just seems impossible to think that way when you are at the start of that path and feel so yuk. You WILL get there and feel better. x

I know I suppose everyone has to go through this all the time at the start, you read so many stories of people never seeming to get better an it just seems so daunting. But at least here you can hear the positive stories too. Guess everyone is different an its just finding the right medication. I'm just anxious in case my blood work doesn't show anything an my rheumatologist won't start treatment. But after the week I've had it just couldn't be right. I've just over a week now to wait until I find out my results. Tried my gp this morning but she insisted she hasn't got my results an to just wait until my reheumy app. So I'm patiently counting down the days ....

I understand Pinky as I went nine months with nothing showing in my blood and a very low ESR but many red, swollen joints which I couldn't move and I was seized up/immobile. Trying to work with it was getting impossible. I was ready to give up work when I was diagnosed and did for a while. My husband insisted I rested as I'd been going crazy with long working hours. Each time I had a rheumy appointment the swelling and visible indicators had subsided. Infuriating! Then my husband said we had to take some pics with us next time (as it was 1995 before smart phones etc.) I was actually relieved to see swelling and redness and feel heat on my knees, feet and hands on the day of my rheumy appointment. She took one look at me and said "it's rheumatoid" and confirmed my ESR had gone from 5 to 98. I was actually relieved. Wanted to treat it. Control it. Finally with proof in the blood and visibly, she could diagnose it and start treatment.

I hope your bloods can confirm it is RA (but of course I don't want you to have it and for it to go away.) My rheumy wasn't sure at first I hadn't got some kind of chronic virus and she sent me to an orthopaedic surgeon to try ascertain if he could detect RA but he couldn't find anything wrong, then six months after it presented itself as I described. Also an isotope bone scan revealed "hot spots" where I felt most pain. I went from being an fit athlete and fell walker to shuffling round on sticks and it took a good three months to come back round and I did and I do have joint damage over the years but my RA is under good control and has been mostly.

I was told that you grieve for the person you were and found it hard to adjust but I'm still very active and I decided to go back and get my BA Fine Art and MA Printmaking, so I never let it hold me back. Neither must you. You often become very clever with RA/RD and related conditions and learn to do things diffetently and think outside the box ... as you have to! We are all here to help/support you with our experiences and we will all tell you it does get better and it might take a little time to stabilise but you will get stable. Oh gosh, the rheumys won't leave you to not get better. There is a protocol as such re the meds you start with then move on to if you fail on something early on, but most people respond so well to the first line meds. Also, there are so many more meds these days compared to when I was diagnosed in 1995 that I am confident you will find one successful early on. It is vital to get pain under control and do some gentle exercise and the help of hydrocortisone shots to troublesome joints to dampen down the inflammation if needed and these options could tide you over well till the RA med starts to work. I had knee and shoulder injections which tided me over until Sulphasalazine was effective. A little patience often needed with them. So hard for us to have that patience I know. They are not always fast workers.

Too many success stories on the RA meds to think anything but positively I say! The one thing that saved me (apart from my wonderful partner and fabulous Mum) was hydrotherapy. I can't stress enough how much that kept me mobile and my morale good. I still go weekly to a hydro/aqua club for rheumy and joint problem patients. You could ask your rheumy if they can refer you to hospital physiotherapy hydro sessions. Your wait is nearly over Pinky for your results. Wishing you well. x

Ah thank you for your lovely reply! You've certainly had it tough but well done for not giving into it an achieving your ba fine art an ma printmaking! It wouldn't of been easy while not feeling so good so congrats. All I know about my bloods is the rheumatoid factor was negative but inflammation markers elevated an also a positive ana. After the rheumy examined my joints she said she thought it was rheumatoid arthritis as hands an feet were tender, I also had photos of my swollen joints cause like you said once your app comes through they magically disappear! Apart from my hands there constantly swollen. Your advice is greatly appreciated an at my next app I will bring up your ideas.

Wishing you luck and let us know how you get on.

Cheers I will

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