Hope everyone is having the best day they can.I am newly diagnosed with inflammatory arthritis, already having osteoarthritis and recently diagnosed with fibromyalgia, so have a lot going on right now.
After an initial consultation with the rheumatologist, I was given a steroid injection to tied me over until I begin methotrexate due to start at end of this week.
The last few days all my symptoms have ramped up significantly. Everything seems to be setting everything else off. I haven't done anything differently as far as I know.
Is it likely the steroid is wearing off?
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hazelcats
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I’m sorry to hear your discomfort and situation. It does seem like the general steroid injection is wearing off. 😑 They used to work like a dream for me for 2 days where I felt great, then within a week it was wearing off. Lasted for about 2 weeks in for me. The steroid injections into the joints used to last much longer (6-8 months) and also do the same magic for the body in general, but as my rheumy always used to say .. they are to tide you over and dampen down the fire.
If you are feeling your pain level is too much to bear until Mtx starts to work can you ask if your pain relief could be reviewed? Also ask advice if you can use some topical pain relief on your most affected joints. If your rheumy/nurse isn’t available you could ask your GP. You’ve probably done all this already. Heat and cool packs (try Therapearls .. not as uncomfortable or icy as some packs) could also help. It’s a (frustrating) wait now for your Mtx to work and each week you’re taking it is nearer to getting your RA under good control. Good luck and sending my best wishes for Mtx working well for you. 🩷🙏
Thanks so much. I know when I had the steroid, intramuscular, it felt worse for a few days, then better for a couple of weeks and since then getting worse. I guessed that must be what was going on, but it's good to hear from someone else's experiences too.I am still not certain windmill help me when I have extra problems? My gp seems to think it will only be really with by hospital, and as yet, I haven't seen a nurse or have any contact details for who to call on? This is something th I need to iron out with the nurse on my first a appt Fri.
So I am taking OTC cocodamol in the meantime. Voltarol doesn't have much impact. I have been moving carefully to stave off the stiffness too. I find a combination of heat pads and therapearls are both strangely effective!
I think predictive text text has changed a word to .. windmill… so not sure exactly what you mean there. I’m glad you find some relief from the combined heat and cold and hope you can find a way through the next couple of months till Mtx starts to work for you. 🙏 It is a very frustrating and painful time but soon this will improve. 🩷 Be sure to tell your nurse on Friday the level of pain you have, even with the OTC Co-codamol, Voltarol gel and that the general steroid injection worse off quickly.
Oh, to be honest that's made me have my only laugh of the day! Windmill? May be predictive text, may be brain fog, who knows?! Think I meant to say not sure who will help me... I am a person who goes into appts with short notes to keep me on track. Pain relief difficulties will now be on top of that list. I had a lovely informative chat with an NRAS volunteer who says I should be offered rheumatologist nurse contact details - that would give me a feeling of support.
🤣 Glad that’s made you smile! I’ve done some howlers with predictive text! Glad you’re organised too. I also go with some notes. My rheumy keeps them to base her letter to the GP on. Sometimes I email her in advance with them. I hope you have a really good appointment with your nurse on Friday.
It’s possible though you don’t say when you actually had the cortisone injection. Was it more than a month ago? If so, you may be unlucky and it is wearing off and if it was more recent did you notice any relief? It may not have been at all effective which does happen but as you say you’ve got a lot going on with fibro and osteoarthritis ramping up the ante.
Your MTX won’t kick in for a few weeks so if you’re in pain and flaring now it’s worth getting in touch with your GP or rheumatologist to see if they can offer any relief until that happens. Do hope you don’t have too much of a rough time till your various symptoms are tamed. All the best.
Hi, thanks for your reply. I had the intramuscular methyiprednisolone steroid almost six weeks ago. It was my first rheumatologist appt, I've had no contact since, but due the nurse appt this Friday to start on methotrexate. Kind of feel a bit left to my own devices with no clear pointers as to who to call on. GP gave indications it's up to the hospital to deal with it. I was hoping for more pain relief than the steroid gave. It did seem to lower some of the infla- I can get my wedding ring back on most days now.
I think I will try to speak to someone tomorrow at the hospital in advance of my Fri appt. As you say, they may want to add something on with the MTX until it ( hopefully ) kicks in. I am aware of can take weeks\months in some cases to take full effect.
It's just a bad mix having all 3 conditions kicking off at once.
I had intramuscular before I got my mtx and had about 3 or 4 pain free days where I thought a miracle had happened before it started wearing off.,however, I have never gone back to the horrific pain i was in before being diagnosed. I have since had one into my knee joint which seems to be lasting much longer, about 12 weeks now and still reasonably pain free in that joint. Does anyone know why they leave you so long between seeing the consultant and getting diagnosed and being started on mtx or whatever drugs, why don't they just start you straight away? Fingers crossed the drugs kick in quickly and do what they are supposed to do once you get them 🤞
I agree, there just be a reason overdrawn over burdened NHS? Six weeks between initial consultation and follow up to begin meds certainly feels a lot longer. Not good physically or mentally / emotionally is it?
Absolutely not, I have never understood someone wanting to die but for a while I was at a point where I felt if this is how it's going to be from now on then I'm not sure I want to live 😞 I was a physical and emotional wreck. Thank goodness for sites like this and NRAS etc. which gave me hope of some relief at some point
Get in touch with the rheumatologist specialist nurse who will help ( granted they are either fab or useless depending on who you see )
My advice is keep in mind not to get overwhelmed with all this .. trust me it can bring you down being in pain. Don’t attempt to do stuff that is painful without taking pain relief first & listen to your body .. a little dust or something doesn’t kill you .. take things in your stride. Try remembering you count don’t live up to others expectations. It’s ok to down tools & do nothing.. it’s called being good to your needs & that’s important.. all the best 🥰
Thank you, with fibromyalgia I have already learned to try to pace and rest, and to stop before I face the consequences of doing too much. I don't always get it right of course. Adding in the arthritis, well, makes a bit impact. Luckily husband helps ,and I am slowly learning to ask for or accept help.
Hi, sorry to hear that. I am in a similar situation. I had a steroid injection and the effects only lasted a few days. I was then prescribed oral steroids which made a massive difference. Due to start Mtx soon but I understand it can take a few months for this to work. Meanwhile my steroids are being tapered off, so hoping there's no return of my symptoms in between! Tell your GP or rheumatologist and see if oral steroids may work better for you
Also, in addition to my previous comment, I tried Ibuprofen and Naproxen and they made me feel awful! Groggy, sad, frustrated. Really surprised how my mental health and wellbeing was immediately affected. I then was given Celecoxib, which didn't have these effects. I had to stop that when I started steroids. You shouldn't be left alone to suffer, your GP should be fighting your corner, give them a call (if you don't mind queuing on the phone for days!)
Sorry, comment 3! I saw your profile said perimenopause, well that was a heap of hell for me and I came out triumphant a few years ago, so hopefully you will too and enjoy your menopause years. It's such a relief!
Hiya Fluff, thanks so much for your posts, so helpful. I had seen older posts where oral steroids seemed more helpful another note for Fridays appt!My I am on naproxen from my GP and have hoped the cocodamol on a temporary basis. As ( most of us say) a GP all this hard to get, so I am hanging on until I see the rheumy nurse Friday. I am determined I won't be fobbed off.
I never received the letter discussing my consultant appt until I begged for it last Friday, and my GP hasn't seen it either. He couldn't say much when I spoke with him a couple of weeks ago because of this delay. At the moment I feel a bit in no man's land, - gp can't help, yet to find out who At hospital will help?
I am pinning a lot on my nurse appt ... Thank goodness for this forum!
And peri, on yeah that's a whole different story! 😂
it’s common for a steroid to flare up your rheumatoid arthritis & make you feel worse but it is a side effect of the reaction to something injected & your bodies response then afterwards say a day or two you feel brill after having the depo steroid injection.. I’m like a Duracell bunny on speed for the day or so with my brain going crazy then I’ve rest of me feeling crap 🤢🤮with a body that is feeling like I’ve done a round with a boxer but the positive results of feeling improved last a few months . My steroid history is very similar to that I have described having had RA plus fibromyalgia & disc protrusion.. hang in there it’s worth getting in contact with your pain management specialist to see what other pain options are available TENS machine or something like cold hot compress or PENS or anti inflammatory gels , don’t go taking diclofenec as it ruins your stomach ! Take care with mtx as the side effects are not nice 🤢🤮
When I had an intramuscular steroid injection it did nothing at all. Instead the rheumatologist prescribed a course of oral prednisolone. It was a month tapering course of 20, 15, 10, 5 mg. The improvement while I was on them was massive and while I got worse again when I'd completed the course, by that time the MTX was starting to work and it was at least more bearable. I had a second course a few months later and after that I felt a lot better. I think that for me, the MTX needed the steroid boost. It took a year (and transfer to the injection) for the MTX to reach the maximum benefit.
Seems like many meds, it's so variable as to their effectiveness on an individual. I am definitely asking about the oral steroids as a possibility, at least until the MTX ( hopefully ) settles in and does it's expected job.
Hi no idea about the steroid injection, but wondered if you've started MTX yet? Any way I was similar till I started my treatment, which takes a about 3 months to kick in, if it suits you. It's all early days treatment wise, and feel for you trying to deal with your symptoms which I know are awful, relied on strong pain relief & rest at this stage.
Do you have access to an advice line, or able to talk with a specialist nurse they're the ones with the info about your care & support.
Hi,thanks for the reply. It's good to hear a positive response to the methotrexate, it seems a real Marmite of a medication. I am due to start one MTX on Friday, which will be a first appt with the rheumatologist nurses. I am have quite a few questions building up for them, one of which will be to ask about who to phone with extra queries about the medications.
I agree it really is early days, which is when we can feel most anxious anyway,everything so new and unknown. I know NRAS always has open lines for anyone to get in touch for general queries and support - for me that's like ( along with this forum ) having a kind of safety net.
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