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Advice on steroid infusion please

Hello everyone

I am looking for advice on infusion of steroids please. I am 5 weeks into methotrexate for RA and being changed to injection form from tomorrow as bad side effects with pills. Hospital have offered me a steroid infusion as they say I have not responded as they would hope to previous treatment (steroid tables, injection in bum and one into arm). They want to try infusion drip into vein to aim for more direct and speedy improvement. I still have a lot of swelling in fingers, toes and both knees and they want to reduce this to limit chance of joint damage while waiting for MTX to work.

When I had previous steroids they made me very emotional and tearful which was hard to control even in public and made my children very anxious to see me like that. I felt pretty miserable and not my usual self. They did improve my stiffness a lot, but not the swelling and pain.

Now I don't know what to do as am worried about having even more teary meltdowns as infusion is stronger, and still getting limited benefit. However my knees are flaring tonight with a lot of pain and so I am really considering the drip option.

Can anyone advise from their experience please?

3 Replies

Explain your concerns to medical team, but I have had infusions many years ago and I don't think you should experience any worse effects from this method. I hope your pain is brought under control quickly, by whatever method.

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It depends on the actual steroid ......I would ask what you were given that made you so emotional ...even if you can't remember & you see a different rheumy it will be in your notes.......I had a very bad experience with Prednisolone , but have had injections of a different steroid with no nasty side effects.I'm on RTX now & have a steroid infusion (not Pred) before that infusion & I have no side effects from that.

I don't know how old your children are...but if whatever treatment you have does make your bit teary, why not have a chat beforehand explaining if It does happen, it's nothing to worry about,& it might take away the pain you now have. Children can cope amazingly well as long as they don't feel they are being kept out of the loop as that scares them, & they imagine all sorts of things. They obviously don't like seeing you in pain & (if they are old enough) they will understand it's just part of Mum getting rid of that pain.

Good Luck.....I know it seems a long trek to get the right treatment, but it sounds as if you have a good Rheumy who is it not just chopping & changing your meds Willy Nilly & is keeping you in the picture.

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Why not explain to children and others that your treatment is making you emotional and tearful? Does it actually matter if you cry in front of other people apart from embarrassing them (and that's their problem not yours)? Why do we feel that we have to protect other people from the effects that our illness have? I know I get very irritable when in pain and I keep apologizing - why don't I just say why?

The message NRAS is putting out this June in RA Awareness week is about the hidden illness behind the smile - perhaps we should all learn to be more up front.

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