Hi everyone
3 days ago I received my first Sero-negative diagnosis and was given a Depomedrone 120Mg steroid shot.
72 hours on and I am still very much in pain, does this mean that the steroid injection has not worked and if that is the case is there any other "more reliable" pain killers that will work as I cannot put up with this pain for much longer !!!
Any help or insight would be greatfully received.
King regards
Shy&retiring
Hi Shyandretiring
I think when I had a steroid injection it only took a few hours to start to kick in(this is going back a while). I would give the rheumatology department helpline a ring and ask what they think. It's absolutely fine to do that btw, it's what it's there for.
Best Wishes
Jennifer
Thank you Jennifer The Hospital have given me my 1st appointment at an RA clinic In 2 weeks to educate me about the disease I think but that's to long to put up with this pain so thank you I will do as you suggest and ring to see if there is alternative pain management between then and now.
May I ask was that the first thing they offered you and it worked or did it take a long time between diagnosis and finding what pain relief worked for you.
Kind regards
shy&retiring
I take naproxen, which I find effective for reducing flare ups back down to my underlying level of pain, but it is hard on the stomach. I was given omeprazole to protect my stomach and only take it on a full stomach.
I now take hydroxy, methotrexate and Orencia (one of the biologics). Whilst waiting for my condition to be classified as severe enough to justify being prescribed a biologic I took a lot of naproxen, but was still in a great deal of pain. Now I have the Orencia that controls everything well enough that my flare ups are mild and a small amount of naproxen can manage the pain and stiffness.
I have just remembered I occasionally take over the counter ibuprofen, it is nowhere near as good as naproxen for reducing inflammation, but the pain relief is faster. I think of Naproxen as giving you pain relief by tackling the underlying cause, whereas as Ibuprofen does a bit of pain relief as well as reducing inflammation.I have also taken paracetamol in combination with the naproxen whilst waiting for the Naproxen to work. This is when I have strained or knocked something.
Just to clarify naproxen and ibuprofen must not be taken in combination, only singly and both need to be on a full stomach.
Hi JenniferI am writing down all of the meds I receive from you and all the wonderful kind people on here for the first clinic I have in 2 weeks with my Rheumatology doctor in to see if we can talk through them.
Yesterday I took some Omprezol and then my 1st Ibruprofen since the steroid injection last Tuesday and I must say its the first pain relief I have had for days, this hs to be what I take once before bed and once at lunchtime until I see the doctor in 2 weeks I think.
What is a Biologic, is that another level up ?
Heartfelt thanks.
Shy
I am glad to hear the pain killers are helping. Aside from anything else pain is very draining.
A biologic is the top level of treatment, it is relatively new and still very expensive (several thousand pounds a year). Treatment needs to be approved for special funding from your county care funding body. Hopefully you won't need that as it is for severe cases. It involves injections or infusions.
Treatment often starts with hydroxychloroquine sulphate (a pill) as that is a mild autoimmune suppressant that rarely has severe effects (although it does upset your stomach initially until your body gets used to it).
Methotrexate (also a pill) is often prescribed next, which is a stronger general immune suppressant. It has side effects and some people cannot tolerate it. A lot of people respond very well to this.
It helps me a lot, I just need something on top of it!
The rheumatology doctors and nurses are very good at going through all this with you, they will give you lots of leaflets to take away with you so you can absorb the information slowly. Also you will have lots of extra blood tests there, so although you are sero negative they will still be running a lot of tests to help with your diagnosis, it isn't just the one test that says yes/no. There are other things you might be advised to take or do like vitamin D or exercises.
Hi Jennifer
You are so kind to respond with so much detail about possible order of pain management procedure and what to possibly expect to be offered or happen.
This is so helpful to me to start to understand as a "newbie" and defiantly helps me with all of this myriad of new information I must learn if I am to understand and play a part in my own pain management.
With what you say about about waiting to be classified as "severe" I am genuinely saddened to hear that, goodness knows what pain levels you have experienced over time.
I really hope that you can get on a course of the Biologics you need as soon as you possibly can.
Shy x
Hi Shy
I am happy to be of help, it's so overwhelming at first.
I am already on the biologics so I no longer suffer pain, biologics are great. Thank you for your good wishes, they are much appreciated.
It seems to be all in the luck of the draw ....Depomedrone injections can work brilliantly for up to 3 months but the next time they don’t work at all.If yours doesn’t kick in within a week ....have a word with your rheumatology nurse ....there are other choices of steroid injections you can have. ....but probably not too soon after the Depo.
Unfortunately when first diagnosed it is very much “try it & see” & we have all had sleepless painful nights until we find the right meds.
But don’t despair...your rheumatologist will find something for you...but we have to learn to be patient.
Thank you Agedcrone( Not really comfortable calling you that .. )
I am realising very quickly that patience and hope have a place with RA when first diagnosed and thank you for the hope of the10 days !
I know that all contributors on here have their own stories to tell and it's such a relief to reach out to you all.
Many thanks
shyandretiring
Well when I was diagnosed 20+ years ago I was a middle-aged crone now I’m quite happy to be known as an Aged Crone.I find it quite amusing when people are dubious about addressing me as such.
Just try to go with the flow .....listen to your doctor when he tells you another couple of weeks of Drug A might make all the difference.
By all means read on here that ABC took it and it was horrible ....But they are not you.....we all react differently to drugs ....so definitely “try it & see”!
That might save you a lot of angst...read everything here..but listen to your rheumy team where your drugs are concerned.
Hope you get sorted soon!
Thanks Aged Crone ( felling better with it now after your amusing middle aged to old Crone great attitude towards getting older, who isn't ! )I will definitely listen to my rheumy team but feel so much better just chatting with you guys on here, top people !
Thank you so much.
Shyandretiring
There is a good life with R.A. as long as you don’t let yourself think about it 24/7.It’s not something anyone would choose to have....but on the whole I think there are more ups than downs & if we just plod on regardless we will be fine...even if with the odd OUCH!!
Thank you Aged Crone
That's is so great and comforting to read, the pain and sleepless nights are driving me to despair and depression at the moment, but your words and re-assurance have made me reframe and pull myself together( I really am no drama queen usually :-).Kind regards
Shy
No harm in being a Drama Queen Shy...just don’t let that become the norm.....a good old poor me rant & rave is very therapeutic.....but not all the time!
Duly noted.May go and have a tantrum later on my own and then return as graciously and serenely as a hobbling, wincing. old git ( there I have said it ) can. 😣
Thanks Agedcrone !
I’m so sorry you have had to join us ..
I too am s- negative. I have a love hate relationship with these injections. A few hit the mark and gave me good relief a couple have done zilch. My last one was in September it took 10 days to work and when it did I got a good 3 months of relief. I would give it a few days yet. Are you on any other pain relief.? Your Gp could prescribe naproxen and cocodamol to help. Hot/ cold packs can also help. An Epsom salts bath can help ( if you can get into the bath) .
You really have come to the right place . Your nurse will give you the bare bones on educating you but the people on here live with it on a daily basis and they know and understand the disease .
Any questions please ask the collective knowledge on here is outstanding. It’s not all misery we do share the laughs too.
Good tip I received was keep a diary on your symptoms with photos it helps you and your team understand YOUR DISEASE. We have all have the same title but often display symptoms differently and that’s why Finding the right treatment takes time . Patience is the one thing I’m learning with RA.
Hi J1707Just realised I have thanked Agedcrone for the 10 days hope when I should be thanking you ! 😖
I am keeping a diary daily but do not have any photo's of swelling etc yet ( Should I expect some ? )
Kind regards
Shyandretiring
Welcome - although sorry that you've had to join our (lovely) club!As you will soon realise, everyone is different in the world of RA so you can't "expect" anything 🙄😂 Some have pain, some stiffness, some swelling and some lucky ones all three - plus other pleasures. Try not to anticipate anything whether symptoms, medication efficacy or side effects - AC is absolutely right there 👌
My GP gave me some great advice at the beginning - only read information from respected sources - which I've interpreted as my rheumy team, websites like NHS and NRAS and of course, the great folk on here. I resisted Dr Google which really helped 😉
She emphasised that anything older than 5 years is out of date as so many great strides have been made in recent years regarding knowledge of the disease and medications to combat it.
I've come to realise that stress is our enemy in the wonderful world of RA so anything which might add to it should be avoided if possible and that includes being tempted down the rabbit hole of "what if"...
Thank you BoxerladyI am taking on board what you are telling me, do not let anxiety and panic ( Dr Google ) take over which since I was diagnosed on Tuesday I certainly have !
If my car broke down I would not go to a golf centre for advice or viva versa you are so right. 👍
Many thanks
Kind regards
Shyandretiring
When I had my first appointment with the rheumy nurse after diagnosis she gave me various pamphlets and they included names of various websites which helped me find the right resources. She was very encouraging and supportive and emphasised that I could ring the nurse helpline at any time which is was so reassuring. The first few weeks are the hardest so keep posting on here for advice and support 💐
Thank you so much BoxerladyI am actively trying to gather all the official facts about RA as I am still not sure how bad I have it, and I still need some MRI and other scans apparently on my hands / fingers/wrists to determine what is happening in my body.
I realise at the same time you can have to much information sometimes !
😶
I didn't do too much research until after my first rheumy nurse appointment which worked for me but obviously we all need to find our own way to deal with everything. Some of the tests I had were to get baseline readings so comparisons could be made later.
In the current situation you might not be able to have someone with you at appointments so a notebook with a list of questions - with room to record what you're told!) might be useful as it's easy to forget things once you're in the room.. 🙄😉
That's a great point about getting a note book with questions written down for my next visit to the Rhuemy doc thank you and duly noted ( excuse the pun 🙃 ).kind regards
Shy
😂no worries. Swelling can be a symptom of RA. The list of symptoms is on the NRAS website. You can get some of them or all of them at any time. Hopefully you have been diagnosed quickly and have yet to develop these symptoms. It’s good to know what to look out for. Please stay in touch and let us know how your getting on .x
read this and my brain is what is a collective noun for RA people?
Sorry Deeb2908 what am I reading ?
Sorry meant in reply to J1707 dont worry x
😂😂😂bad day Dee? Just like mine 🥺😉
A hobble?!
Hello, Every time I go to rheumy doc I get the depo medrol but I think only 80mg. It has never made the pain go away. It allows me each time to be able to move arms over head and when I can do that I can exercise shoulders, stretch and that makes them better. Pain meds are what stops the agony part. It used to be extra arthritis strength tylenol(800mg, one pill, acetaminophen) and one Ibuprofen or Naproxen. I switched those two for celebrex here in the States. It is so much kinder to my stomach. Now, I only take one celebrex every two days and it's under control. I took the depo medrol shot since I am bad and refuse to take methotrexate. It's amazing how after last December this December is almost paradise. I can open the coffe pot lid without pain. I say, "miracle" in my head, every time I do it. Good luck.
Hi SkymollieMy naivity with RA shows, I obviously thought Depomedrol was a pain med not an aid to movement with RA.
I am reluctant to take Co-codermol or anything that is associated with constipation as I suffered very badly with constipation as a child.
Will have to see what my Rheumy team about pain meds and avoiding for me the dreaded constipation.
Kind regards
shyand retiring.
Hi Shy, that's why I switched to Celebrex. I was constipated for as long as I took the others. No constipation with Celebrex. Plus, Depo Medrol can be a pain reliever, it is a steroid and does reduce inflammation, that stops pain. Your goal is try always to reduce anything that causes inflammation. Sugar was one for me. Pain is excruciating in all joints if I sugar binge.
Hi Skymollie I will write down the meds that you are now taking ( especially celebrex to avoid constipation ) as I am making a list of meds for my Rhumy doc when I see him in 2 weeks to talk through with him.
I am in the UK but the drugs you mention should be available here in the UK right ? ( but perhaps under another product name ).
Kind regards
Shy
Hi Shy, I am only taking the Celebrex now since I find it to be a miracle drug for me, no constipation and most aches are gone. Celebrex is generic name, it is called Celecoxib 100 mg cap. Good luck with your appointment. England looks like it has been selling it for awhile. Online perhaps if not found elsewhere.
Thank you SkymollieCelebrex does sound very promising and I will certainly bring it up with the Rheumy doctor when I see him.
And thank you so much for the Celecoxib name, it could make speaking with the doc much easier !
I hope this finds you in "pain free" spirits for as long as possible.
Shy x
.
Hiya Shyandretiring, welcome. Unfortunately it can be the case that a general steroid injection doesn’t always help, doesn’t with me, Depomedrone anyway. Actually it did once, around a week after receiving it, for one day. I take it you're not in the UK? If so I'm not sure who will have administered it but that's who you should report your lack of reaction to. I'd give it a couple of weeks at most & if it hasn't kicked in by then definitely make contact.
It may be that if you don't respond to it a short course of oral steroids will be suggested. I take it that you haven't started your treatment yet & this is an effort to bring down your inflammation, & in turn pain, down quickly. You see the DMARD you start won't work straight away, they take time to build up, & they'll be using the injection to make you comfortable pro term. Hoepefukjy once you start you med regime you'll notice subtle changes (within a few weeks) but 12 weeks on things will seem much brighter, that's the hope. ☺️
Thank you nomoreheelsI am in the UK, what made you think that I was not ? ( just out of interest and going forward ).
Oral steroids were mentioned by the Rheumy doc but he then suggested a steroid injection as the Oral steroids could make me more susceptible to Covid.
Thank you so much for clarifying that I may not be on a Med regime and the Depomedrone injection is just a short term fix as I thought the injection was the med regime albeit early days.
Many many thanks for this.
Kind regards
Shy
I'm not sure, maybe because you said shot. Maybe a look through the NRAS site would be helpful, this page relates to treatments but you may find further reading interesting too nras.org.uk/information-sup... Whoever administered your steroid jab should really have explained that it wasn’t long term treatment but still, now you know. ☺️
Did I really say shot instead of jab ? that just shows where my head is at the moment .. scrambled ! 🤪I will definately have a look at the NRAS site as suggested, forearmed is forewarned as they say.
You are a diamond nomoreheels.
Kind regards
Shy
First para. It's full of helpful info. Another you could check out is the Versus Arthritis site, though that's not as good since they joined forces with Arthritis Care. Individual info of DMARDs may be helpful though versusarthritis.org/about-a... versusarthritis.org/about-a... versusarthritis.org/about-a... versusarthritis.org/about-a...
Thank you for the Links nomoreheels. I have had a look at them and that is the info I really need to learn for the future to understand if a Rheumy doctor/nurse recommends any of them.
Thank you so much.
Shy
Hiya, glad that you have found this forum, everyone is so helpful and it gives access to lots of experience. Unfortunately last Depomedrone injection I had took a whole week to kick in and then only lasted a few days. Much to my disappointment. Hope you get on to a proper drug regime quickly as that should help eventually. Hang on in there
Thank you for getting in touch WobbiesAnd for your warm best wishes re the drug regime that I am about to start on it seems !
Kind regards
Shy
Hi Shyandretiring!, I found that the depo jab did nothing at all for me, I was given it on two separate occasions, and the pain remained.. The only thing that took away the pain was when the doc allowed me a course of Prednisolone (steroid) tablets, that worked very quickly to provide relief! Also, Naproxen is effective as well, I take it with Omeprazole to protect the tum. Yep, do try your gp for the steroid tablets course instead - I found it the only thing to get rid of the pain, while you wait for your Dmard to take effect! Xx
Hi JimmxThank you for getting in touch.
I am compiling a list of drugs mentioned on this wonderful sites by you very kind people.
The doctor did not want to put me on steroid tablets as it lowered my immune system, but with what you say I will happily self isolate ( we all should be anyway where possible ) to get some relief from this pain.
I am very grateful for your knowledge and experience in this as to my immediate journey of discovery as I am with all the contributions that I have received so far.
Kind regards
Shy
Pleased if I can help - I've only had RA a couple of years, but the pain before getting your treatment started is unbearable! Yep, self isolate is best if you can, cos we all have lowered immune systems anyway from the drugs we have to take 
Don't worry, your RA will be got under control and you will feel much better x😀😀
JimmyThat is such a positive message,thank you so much, it has made me feel better instantly.
Kind regards
Shy 👍
You are very welcome! I'm glad i could help Xx
I’ve had 3 such injections..
1) marvellous for about 4 months
2) didn’t touch the sides....
3) thought it hadn’t worked until about a week later when it kicked in and lasted about 4/5 months.
Stick with it; you’ll find something that will help.... then things will get better.
How’s that for happiness....??!! Although I’ve been told off on here for positivity in the past 🕺🏻
Keep on keeping on JamarrukYou have my vote.
And thanks for sharing.
Kind regards
Shy
😀👍
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