Hi everyone, well off to the rheumy tomorrow and have a plan in my mind for the way forward ... I think!!
I believe he will want to start me off on dmards, probably mtx, but as we will be going away mid August I don't wont to ruin my holiday feeling ill, I did post about this a week or so ago. So thought I would ask if I could have an intra muscular steroid injection to get me over the holiday period and start the mtx at the beginning of September when the children have returned to school and I can feel ill in peace!! Hopefully I will be fine on the mtx but like to plan ahead.
So, I've never had one of these injections before and don't know how long it might last. We are away on the 11 Aug and may go away for a few days at he end of Aug. If he agrees and gives this to me tomorrow, will it last that long?? Would it be worth hanging on a week or 2 and then could my GP give me the injection?
I'm sure the rheumy will advise on this tomorrow, but there's nothing better than feedback from you guys. Thanks everyone and I'm glad it's a bit cooler. Rx
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I have had 3 with the first 2 lasting 6 weeks and the 3rd lasted about 4 weeks. I would recommend them to cover you through your holiday. Good luck for tomorrow x
Hi there good luck for tomorrow. I've had my steroid injection dose split into two doses. My holidays are not until September so I've had a small dose now to get me through these six weeks holidays then I have the 2nd dose a week before I'm due to go on holiday middle of September. I asked my rheumatology nurse how long these steroid injections last ? Her reply was everyone's different a couple of weeks to a couple of months it depends on the patient..I'm starting new dmards too when I get back off holiday probably at the end of September...like you I don't want to be poorly when I'm away...hope everything works out for you...enjoy your hols and good luck
Hi Rosie,
I have had several over the past 8 months, the first being at my initial appointment with the consultant, it had little or no effect, a second was given about two weeks later and that certainly gave me two weeks. For me the best was an infusion, much stronger dose can be given, and that almost always lasted about eight weeks for me. Smiling to myself , I like you always had a plan in my head as to how things should go or the way forward....almost always changed my mind when I got there. Now bearing in mind that your RA is severe, and treatment should start as you can, I would like to point out that not everyone reacts to MTX the way you see here. There are so many people who do not have any side effects or that they are minimal...you do not know until you start. So I guess I am trying gently to say, even although you have a plan, and I always do too, you really need to listen to what your rheum.consultant says and recommends otherwise is there any point in going tomorrow?
Whatever happens tomorrow I do so hope you have a great holiday
Oh that's all really good to hear thank you. Sounds like I should be good to go tomorrow if the rheumy agrees. One quick question ... I've had oral steroids before and found them a bit of a roller coaster as when I stopped taking them my symptoms would flare up. The only way to stop this was to slowly wean myself off them over several months. Do you get a crash after the injection in the same way or does it just slowly wear off?? Thanks do much everyone Rx
I just got my steroid injection from my GP. I'd had short courses of tablets before that, and found that the injection wasn't as dramatic effect as the tablets. I also thought it was starting to wear off after a couple of weeks, but in hindsight it actually kept on working for probably at least 6 weeks. I think I'd probably rather have two weeks of tablets to knock a bad flare, but have the injection if I wanted it to just lift me a bit and for it to last a lot longer. I have quite bad spondyloarthritis with widespread enthesitis though rather than RA, and I think I have a lot more areas of my body flaring at one time than most folk with RA do, so I am sure the steroid injections work better on other folk than they do on me.
Katie C you replied as I was responding so didn't read your post. Yes I definitely will listen tomorrow, I do trust him and his judgement but also know that it's important to get all the facts ready before I see him. It can be a really busy clinic and its important he understands how his decisions will affect my life. If he thinks I need to start the mtx asap I will, but would be nice to enjoy the summer first if I can. My RA isn't severe at the moment, I've had symptoms for 2 years but only recently diagnosed. I'm prepared for the dmards but a bit scared too. I do like a bit of control in what's happening to me though!! Thanks for your very wise thoughts Rx
Hi. When they started my MTX they started me on 10 mg and have slowly worked up over 6 weeks to 20mg. I honestly have had no side effects at all so try not to worry too much. I hope your appointment goes ok. Look forward to hearing what is decided. Sally x
I do hope you get it sorted ...and truly it may not be as bad as you think and the best it could be is to put your RA into remission albeit that will not happen immediately. As for a crash low after my steroid injections/infusions...did not ever have that, the pain and swelling just slowly came back, well maybe not slowly, but was a gradual progression.
I'm with katieC on this one, as the drugs take so long to work that the sooner you start the better. But it's not either/or as quite often people get a steroid jab and the prescription for the other drugs and then it's up to you which week you start - tho' they'll often ask that you have a blood test after 2 weeks so you'll have to time that in with your holiday.
I hate oral steroids as they make me loopy, and weaning off them is hard as you say. The jabs are totally different as designed to be slow release so don't have the same roller coaster effect. And they last about 6 weeks for me if I get the full 120ml dose. Polly
Thanks Sally and Polly, I'm about to get on the train, head spinning a bit with it all, but Polly like you say having both now might be a good option. Sally I'm so glad you've for on so well with it. I'll update you all tonight when I get back. Thank you. Rx
Update from seeing rheumy .. As expected he's started me on mtx. I told him I was off on holiday and he suggested starting it when I get back. He offered a steroid injection to get me through which I gratefully accepted, and he gave me another one to take to my GP if I need it.
Having got my plan in my head of what I wanted I was very pleased that it was what he suggested. However I completely forgot to ask what I do about the naproxen and the Omeprasole when I start mtx. Do I stop taking them, continue with them ... not really too sure? He's given folic acid I x a week too. He wouldn't give me the mtx injections to start with. It's all a bit blurry and not too sure of anything except that I start mtx when I get back from hols!
Hope the steroid kicks in soon, I'm totally exhausted. Left home at 9.30 and won't get back til 5ish. Rosie x
Hi Rosie, I do not normally give out advice re medication however your Omeprazole and Naproxen should be continued in conjunction with your MTX although you may find in a few days when you start to get the full benefit of the steroid that you do not need to take so much naproxen however I would assume that if you need to take it all that you will need to continue to take the Omeprazole...as always check with either your pharmacist, GP, or rheum.team
As for MTX injections....think the normal is to start on tablets...the cost difference is probably a major fact
Hi Katie, thanks so much for that you are full of wisdom and great advice. I did take heed of your words yesterday and let the rheumatologist guide the consult and was glad he suggested what I was hoping for.
I gathered the injections came down to cost as he implied as much.
I'll keep on with the naproxen then as long as I need it and I'm glad to hear I can take it with the mtx. I've booked an appt with my GP to discuss the lot with him before I start the mtx.
Yes hoping to get a good night tonight as when the steroid kicks in it may be a tad disruptive!! I'm not sure what dose he gave me.
Thanks again for all your sensible advice and support and have a good weekend xx
You have had great advice from everyone but I did just want to reinforce that you should ask your GP about remaining on the Naproxen with steroid in your system and also once you start the MTX. I was told to only take Naproxen as and when needed re flare ups because it can impact on your liver and MTX does this too for some people so may be overload for you. So do please check.
Re Omaprazole - lots of people keep taking it with MTX but it does say on the side effects sheet that it can react badly with the MTX for some people and it did for me unfortunately so I was switched to Ranitidine which seems to suit me really well. I agree with what people have said about MTX being generally well tolerated. I haven't tolerated it too well unfortunately but have put up with various side effects for 19 months now (was switched to injections) and hope to remain on it - albeit at a lower dose than my RA seems to require. I don't think I'm typical though but nor am I completely alone. Please remember that some people use this site to share negative experiences of drugs, but that doesn't mean we are in the majority. We are probably just in a small minority of unfortunates I think and it is a really good drug as far as ammunition against RA is concerned. X
Hi Tilda you're absolutely right I've had great advice from everyone on here which I've been very grateful for. Thank you.
I decided the best thing to do was email my rheumy about the naproxen. He's understandably not good at responding, but within an hour he came back with some answers for me. He said that I can take the naproxen as long as I need it. If the steroids kick in and I feel great then to stop them but if I start feeling achey to restart them. He didn't mention taking with the mtx although I did ask. So I think he means I can take them as I need them but I will for sure have a long discussion with my GP about all of it before starting the mtx.
I am aware that forums are often the places people go when things aren't going well so appreciate that its not necessarily a proper representation of how things really are. However, this forum does seem to be the exception. Everyone is so positive and there has been some really positive experiences shared.
How are you feeling now as a few nights ago you were proper poorly by the sounds of it. Hope you soon pick up and thanks again for your support xx
At present I am doing very well on the biological Abatacept, thank goodness. But a few weeks ago before I was doing so well I asked my rheumatoid nurse about getting an injection to see me through my two brothers coming over to Ireland for two weeks in August. She told me that I wouldn't get one as they block what is really going on in your body! Maybe it's because I have been on biologicals and they are very, very strong and complicated drugs, don't know for sure. When I was on demards I did get steroids when I had bad flare ups.....the first worked really well and lasted for weeks however after that they did work but for shorter lengths of time. Not a very positive post but that's how it panned our for me.....hope you got good news when you saw your rheumatoid. X
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