Steroids worked but now what...

lizzy100

Hi, back again.
So iv been waiting over 6 months for a diagnosis. Initially my consultant said he thought it was enteropathic/IBD related arthritis. he gave me a steroid injection, but this didnt help. So then he started saying that should have helped so he wasnt sure it was arthritis and thinks its hypermobility! But i didnt agree and so he said he would give me a couple of weeks of oral steroids and if they worked it would confirm it was inflammatory arthritis and he'd put me on an arthritis drug, if it didnt help he'd say it was hypermobility. Anyway a few days after starting the steroids the pain swelling redness has all gone and i can walk without limping and i can go swimming and i can go shopping and i can do the washing up. So im fine for 2 weeks. Then have to start decreasing the dose and the pains coming back and the swelling. and im struggling again :(Iv got to wait a week to go back to rheummatology but my consultants left and iv got to see someone new. So what if they dont agree with the 'plan'. what if he fobs me off and does nothing? i cant cope with being in agony and not being able to walk or move again and having noone believe me

dreamdaisy

Ah, oral steroids. They work for quite a few of us, and work well but in the long-run they are not good because they work by thinning all our tissues, not just the inflamed ones, and that brings its own risks. I know that I feel a darn sight better when I'm on them but I know they are far from good for me. On the plus side you now know that it would seem to be an inflammatory arthritis so it will probably be time to start one of the DMARDs: they work by suppressing the immune system and that means the body should stop atttackiing itself - that's the theory. I hope the new chappie agrees with what you have been doing and that he will carry on with the suggested programme. Please let us know how you get on, yes? DD

tillytop

Hi Lizzy

So glad the steroids helped you - but I know from experience how very hard it is to deal with the results of cutting back.

I completely understand your concern - I think continuity is so important (and often so lacking) when seeing a consultant when you have a chronic condition and I can empathise with your worries about having to see someone new. Just a thought - hopefully the previous consultant wrote to your GP after your last appt, stating his intentions with regard to the steroids and about "what next". If so, you should be able to ask your GP for a copy so that you can a) see what was said and b) take it with you when you see the new consultant so that you can "wave it under his nose" if he says something different.

As for your fear of not being believed - oh I can completely understand that one too and it is a fear which is mentioned regularly on the forum. The only thing I would say though is that I can't see how the steroids would have helped you so much if there wasn't inflammation going on and hopefully that will be obvious to the new consultant as well.

Do you have someone you can take with you to your next appt? If it someone who has observed the improvement whilst you have been taking the steroids, so much the better because they can speak up in support of what you are saying if there appears to be any doubt on the part of the consultant.

The only other thing to say is that, if you were to tell the consultant, exactly what you told us in the last paragraph of your post, about not being able to cope with the way things were pre-steroids, I don't think for a moment he could possibly disbelieve you.

Thinking of you and please do let us know how you get on.

Tillyxxx

stickywicket

I think it's very unlikely the new consultant will disagree with the old one. However, steroids are not a permanent solution so they'll probably offer you something else and the 'something else' may take a while to work.

Do take someone with you if you can, partly for moral support but also to help remember things which we easily forget when we're nervous or when so much that is new to us is being said. I hope it goes well.

Soretoe2

Everyone has said it all really. The only other bit of my experience I can offer is that because I had a great many in both oral, injection/epidurals etc; over the years I now have a damaged liver from them.
I must point out though that I have had a lot over a very long period, including for asthma as well as RA.
If I knew this was likely to happen when I was younger I would never have agreed to so many.
They are very helpful but in short courses only.
There are lots of alternatives and you must be guided by the docs here.
If you are unsure or worried about anything to do with your treatment make sure you tell the docs when you see them and don't worry about 'being believed'. It's an old chestnut that has haunted us all at sometime I assure you.
The tests and examinations you will have will speak for themselves. The docs are used to various types of people and problems and I'm sure will help you to get the best treatment for you.
Be kind to yourself and take care, Joy

lizzy100

Thanks for the replies. I know i dont want to stay on steroids they make my face fat and my vision blurry :roll: . I'll be happy if he puts me on methotrexate but im just worried he wont think the same as the other doc and will do nothing. Well the test results don't show anything, my bloods were normal, which they can be with enteropathic arthritis, which was why i had the trial of steroids.
I dont have anyone to take with me, and i dont think he wrote my gp a letter because he never gave me the steroids when i saw him in clinic, he did it over the phone. I do worry about not being believed because thats what they all imply. my gp said to me 'everyone gets aches and pains and joint pain'. then rhemm were trying to fob me off with hypermobility. If they dont do something im wondering if theres a way i can find a top specialist in enteropathic arthritis somewhere in the UK.

tillytop

Hello again Lizzy

I am so sorry you are not getting the help and support you need from either the GP or the rheumatologist - unfortunately it seems to be an all too common problem - as does the feeling as if the medics don't believe what you are telling them.

Over the years I have found it helpful (particularly if going to an appt on my own) to take time over a week or so before the appointment to compile a detailed "bullet point" list of what I want to say and important symptoms. I take two copies with me and give one to the doctor and use the other as a reference so I don't get flustered and upset - or, if I do get flustered and upset, I don't forget anything important. You may find that the new consultant is a breath of fresh air but I don't think there is any harm in explaining to him or her exactly how you feel about not being believed and your worries about coping when the steroids wear off.

I really do hope that your appointment goes well for you Lizzy and you can get the help you need to manage your condition - whatever it turns out to be.

Thinking of you.

Tillyxxx

stickywicket

I think the consultants have to keep GPs informed so, even though yours didn't give you the steroids at the time, he should have let your GP know later. I hope so.

It is always possible that you have both hypermobility and some inflammatory form of arthritis. They are not mutually exclusive. I write that as an encouragement :roll: in that hypermobility doesn't have to be a 'fob off'.

Take Tilly's advice and use a list. They can be very helpful. Also list any symptoms between now and then. I hope it goes well.

lizzy100

thanks, I will write a list. Well they did ask the GP to prescribe the steroids, but i dont know they wrote saying if they worked then it would confirm the diagnosis and they would give me a DMARD. probably not.
Im not saying my elbows don't hyperextend, but I know thats not whats causing the problems. its nothing to do with that, they'v always been like that,