Depomedrome.... how often is advisable?: Following on... - NRAS

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Depomedrome.... how often is advisable?

girli1111 profile image
22 Replies

Following on from my post this morning... I’m now thinking I might need a steroid jab to get me out of my current state.... I think it’s been over two years since my last one... I know they are not meant to be given too often, but wondered are there official guidelines? Think I’ll try for a telephone gp appointment tomorrow. Oddly enough, my routine blood test less than two weeks ago showed everything within the normal range, so this extreme disabling pain is a bit of a bolt out of the blue when I’ve been largely well controlled in recent months. Thanks. (My other meds are hydroxychloroquine and methotrexate

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girli1111
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22 Replies
Pippy25 profile image
Pippy25

Hope you get some good guidance from your GP and that things begin to settle down for you. I've had RA for 18 years now and it can be like 'swings and round a bouts' or 'snakes and ladders' Things can change within the click of a finger and one minute you feel ok(ish) the next you hit the floor. I think it is the uncertainty of this disease that makes it hard for us. Hope today will be a better one for you.Best Wishes.

girli1111 profile image
girli1111 in reply toPippy25

Thank you, I too have been diagnosed a long time ago now, I think about 14/15 years ago, but it’s all kicked off a bit in the last few years since surgical menopause I think!

helixhelix profile image
helixhelix

My first rheumy would never allow more than three full dose shots a year. But not needed them for years now! Hopefully things will pick up for you so you don’t need them either.

girli1111 profile image
girli1111 in reply tohelixhelix

Thank you. In the early years I was so well under control after initial diagnosis, but in the last few years problems seem to have really escalated!

Blackwitch profile image
Blackwitch

Hi girli1969

I feel like I’ve had this forever. At the moment I’m on injectable Methotrexate, Paracetamol (don’t underestimate the power of Para), Morphine, Amitriptyline, etc. I have taken so many different drugs & so many I’ve had bad reactions to. I have Depo-Medrone injections every three months but I know that’s more than most people take. They are my ‘life saviours’ but I have other things going on with my back plus fibro. I would ring your Rheumatology Helpline & tell them how much pain you’re in. I hope you find things calm down soon. Nic 🙂 x

Blackwitch profile image
Blackwitch in reply toBlackwitch

PS! I don’t think quarterly is advisable!!

Dep - are not great if taken too often I was only allowed 3 a year . Unfortunately they don’t work for me now 🥺

Jillyanne profile image
Jillyanne

I think you are allowed 2 steroid jabs a year , so get yourself off to the nurse

Lolabridge profile image
Lolabridge

I’ve had to have more than three in the past year due to excruciating pain and lack of mobility.

I feel sure that if it’s seen that you need a shot you’ll get one so contact your Rheumatology helpline and ask for one.

NeonkittyUK profile image
NeonkittyUK in reply toLolabridge

I have two Depomedrone in my knee each year but have had several joint injections each year when times were very bad, years ago. Not more than twice a year to the same joint.

My last few steroid injections haven't worked for me and yet they used to be so good. My rheumatologist gave me one early this year and said it was the last one she was going to give me because I was having too many. I don't agree with that as I have never had more than three a year.

I saw an orthopeadic surgeon about my knee about two months ago and he is happy to give me another steroid injection in my knee and said it wasn't strictly true that I couldn't have any more injections so it makes you wonder who to believe. I was due to go for the injection on Tuesday and have it by ultrasound, but typically I got a cold and they wouldn't do it so I am now waiting for another appointment.

NeonkittyUK profile image
NeonkittyUK in reply to

Think many rheumys are less wanting to give them regularly and understand why, if someone has had lots within a year or example, but one said to me I could never have any more, after I had had a few. Then another senior rheumy said it was fine to have them as long as not too many. This ... you can never have them again .. statement can be worrying for patients who need a steroid injection to tide them over/let them move, when nothing is working, etc. That was my problem and in all fairness wasn't my fault as they had not got me in on time for my RA treatment so inevitaby I went downhill. I then ended up immobile and on oral steroids for ten months, so it was kind of counter-productive I feel!

in reply toNeonkittyUK

Thank you for answering Neonkitty, I have lost a lot of faith in specialists especially rheumatologists and sometimes wonder if they know much at all. I am in such dreadful pain and am able to do less and less as each week goes by. I first went to them in 2011 and although I was in bad pain then, I was still able to walk about and go out and continue with my hobbies and lead a reasonably normal life. Over the years since then, I have gone downhill so much that it is unbelievable. I have pain just about everywhere and can't even dress or undress myself, get in and out of the bath, walk more than a few yards etc. Yet everytime I have an appointment even though I tell her that things are getting so much worse, she just keeps me on the same medication which is methotrexate, hydroxychloroquine and prednisolone. I have asked about biologic treatment but keep getting told that it wouldn't be the right thing for me. I worry about how bad it is now and how much worse it is going to get.

girli1111 profile image
girli1111 in reply to

You really have my sympathy. I am so very frightened at the moment of the future

NeonkittyUK profile image
NeonkittyUK in reply to

Hi H-W, I am so sorry to hear this and it sounds a lot like me in 2014/15 when I came to a standstill and had to stop most of what I loved doing, Good news is I came back from it but with a change of RA med. Did the rheumy say why bioogics arent for you? It seems odd to not try a biologic when you have tried Mtx and another DMARD which have proved to be unsuccesful in terms of holding back damage/inflamamtion. That's the usual criteria I have heard of and have experienced. Can you ask to see another rheumy or ask your GP to talk to the rheumy? I would want to know why not. Forgive me if I have missed something as to why you can't have a biologic. I hope you can soon be on something that helps you more and gets you back on track. Never lose faith. Gentle hugs.

in reply toNeonkittyUK

Hi Neonkitty, the rheumatologist always says that a biologic wouldn't be any use to me because I have OA. But surely the fact that I also have inflammatory arthritis (sometimes they say it is RA and at other times PsA), would at least mean that one thing I have would be much better on a biologic. I am also sero-negative and she always says that as well, but I have read many times that people who have PsA are more often than not sero-negative. When I query anything about all this, I can tell she doesn't like it and she seems to clam up and look annoyed. I once did go to a different hospital but the rheumy I saw there was even worse and wouldn't even take the time to listen to any questions I had to ask her and she also said no to having biologics. I went back to the hospital I was originally at but was put with a different doctor as the one I originally saw had been killed in a road accident. I once said to the one I see now that as I have failed on two Dmards that surely I could be tried on a biologic but she said that I hadn't failed on methatrexate, even though I have got progressively worse over the time I have been on it. The first one I had bought me out in huge red itchy lumps all over me. My fingers and toes are now swollen and deformed and I just wonder how many other parts of me are going to be damaged. To be honest, I just don't know what to do. Some people seem to get put onto other medication so easily but it just seems a big uphill battle for me.

Downtime profile image
Downtime

Hi, sorry you’re in a sudden flare. I understand you can have the steroid injections every three months if you have to, including the depo general one. They’ll advise you when you ask for one. In the past I have had three in my hips over 9 or 10 months. Maybe a short course of oral steroids might help. Hope you’re over it quickly.

NeonkittyUK profile image
NeonkittyUK

Hoping you can soon feel better Girli, it sounds like a sudden flare. Take care and speak to tew rheumy nurse as soon as you can. Hopefully you have done. x

girli1111 profile image
girli1111 in reply toNeonkittyUK

Thank you, I was unable to reach rheumatology team as ansaphone message said they had a staffing problem and queries had to refer to gp. Fortunately I’ve not had a steroid jab via my GP, just hope it kicks in quickly. Thank you for replying

NeonkittyUK profile image
NeonkittyUK in reply togirli1111

You had a general steroid injection from the GP? Hope that helps you. x

girli1111 profile image
girli1111 in reply toNeonkittyUK

Yes, fortunately my rheumatologist had put that down as an advisory in a letter a long time ago, was a bit of a palaver getting it sorted through pharmacy, but we got there in the end!

girli1111 profile image
girli1111 in reply toNeonkittyUK

Sorry, I mistyped now as not!

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