I have had uncontrolled RA for nearly 3 years since switching to a biosimilar of enbrel. I've tried 2 rounds of rituximab and have really only been managing through a series of steroid treatments. I'm currently managing on 5mg daily and have been for 8 weeks. I'm due to start tocilizumab shortly but need to wait for a day case appt. I called the rheumy line on Monday and asked for a repeat script for 5mg steroid for 8 weeks to get me through xmas and until the toc kicks in.
My God, what a response. I've had 3 different nurses on the phone and my consultant. The conversation went like this
Him- Can you manage with a depo?
Me - I would prefer not to have to come to the hospital at this time (covid), also I'm not driving yet so would need some assistance.
Him - well I don't want to give you long term steroids because you are more vulnerable to covid and it's difficult to wean off them.
Me - I'm shielding at the moment and can't go out anyway as recovering from TKR so not particularly worried about covid.
Him - OK, I'll prescribe a short course of steroids 15mg x 1 week, 10mg x 1 week, 5mg x 1 week.
Me Thanks (to myself) so that's 6 weeks x 5mg a day. Result!
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Maggsie
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For me, the depo injections never work. I've just finished a course of prednisolone 30mg for 7 days. I am just about to be reviewed for another biologic injection (currently on Cimzia - was great...but no longer working) so good luck with your new venture!🤞
Ooo hard one. I have had the injection several times different rang of success. When it works brilliant then I get dud. The oral steroids mess with my head. Sorry I’m not much help x
I've had two depo injections, the first was like a magic potion - started virtually straight away and lasted about two months or so but the second one did absolutely nothing whatsoever.
That's what worries me. If I d have given into the depo and it didn't work then I'm stuck for weeks on end with pain and swelling waiting to see if toc works. Been there and done that when trying rituximab and I don't want to feel that rubbish ever again. People keep quoting all the risks at me but unless you have this bloody awful disease you maybe don't get how beneficial pred can be.
I found steroid injections into my joints (shoulders in my case) worked very well and quickly but the I/M ones, whilst ok, were not as effective.
Will 5mg of Prednisolone a day give you enough relief though? I needed the 15mg dose daily when I was on between RA drugs and even when I reduced to 10 mg as I just started Rituximab (and waiting for it to work) it didn’t feel enough.
At least if you start the programme as recommended by your consultant you can ask for an injection as well (or more Prednisolone) when you get to (or are due to reduce to) 5mg.
None of us want to have to take Prednisolone at the moment with the increased COVID risk but we know it helps when we’re really struggling and if we’re prepared to be very careful, as you are, we need to ask for it and be trusted to be sensible.
To be honest, I am managing on 5mg so I'm going to stick with that. I've had this disease for 37 years now , i know my body and i know what works. I just wish we didn't have to fight for everything. As you say, they need to learn to trust us as we trust them
Aww this is a tricky one isn’t it? I have had both in the past. First two depo injections worked well, third not at all.
I have been on Pred Tablets now since May. Started to taper but only managed to get to 8mg even with other DMARDs added.
This week my steroids have been increased again and MTX due to be increased to 20mg sub cut too. Not ideal and especially not in these times but need to balance everything don’t we? Thankfully my consultant said the same. I am day three into the increase of my pred and the swelling is already better. Phew. I prefer to stick with the tabs for the time being and have also been offered targeted injections into joints. If once I start to reduce pred again my joints flare again then I will ask for the targeted injections. So sorry you had a bit of a time of it trying to get some more pred tabs to tied you over whilst waiting to switch over biologics. x
I have had many injections in my 18 years of RA. I have had great success with them. Obviously some last more than others but got to a time when I wasn't allowed any more
Interesting I know we are all different how we cope on drugs etc. like you I am having to use steroids on a daily basis as I’ve not long started Abatacept (4 injections so far) so I’m trying to reduce steroids. But my Rheumys advise is not to rush coming off the steroids as he’s knows I want to get off the full stop!! But his advise is because I’ve been like you on a low dosage for along time but of recent I’ve been on 20mg, I’m trying a 3 - 4 to try & break it down. But my Rheumy & Dr said your fine on 10mg or below re covid so I think your doing great & if you are happy on your 5mg daily then stick with it, your doing extremely well.
Thankyou, I'm going to stick with it until I can evaluate tocilizumab early in the new year , the i will talk about reducing and coming off them altogether.
A great goal for the New Year, that’s how I’m looking at it too!! I’m so determined to get off them, but at present I can’t operate without them... thankfully see Rheumy in 2 weeks so we can assess how I’m doing on Abatacept?? I truthfully don’t know, it’s so up & down, anyway stick to your goal.
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Does anyone on steroids have a Blue card?
Cortisone injection 
Pred or MTX?
Steroid tablets
Not sure whether to have another steroid injection??
