What would you do?

bailey27

Hi
Following my rheumatology appointment this week he has suggested before I have next scan to not takeany tablets so the inflammation will shouw up / more / better.

I hav reduced my prednisalone from 15 mg to 10 mg yesterday and today and already I am starting to feel it. I have a huge mouth ulcer and can feel another one come up enxt to it so it will be one big massive one soon.

Could this be a side effect of the reduction in steroids or could it be that I am about to go into antoerh flare? I seem to be in and out of flare ups quite a lot lately and dont know what to do. I want the inflammation to be there for the scan but I am starting to feel it already and not got a date for the scan yet, although he said he would mark it as urgent.

what would you do?
What would you

elnafinn

Hi Bailey

If I did not have a date for the scan and on starting to reduce meds, was already getting nasty symptoms, I would not start until I had a date. I don't know how long it takes for the meds to get out of your body or how slowly you have to reduce the predsnisalone, but I friggin well would not start now. Who can tell when you may get your scan date? Could be ages, although I hope it is not.

That is my humble view,

luv
Elna x

barbara12

Hi Bailey
Good luck with the scan, and I hope you get the answers you want, like Elna says I wouldn't risk reducing your meds too early.
You take care and let us know how you get on.
Love
Barbara xx

englishrose

bailey27 wrote:

Hi
Following my rheumatology appointment this week he has suggested before I have next scan to not takeany tablets so the inflammation will shouw up / more / better.

I hav reduced my prednisalone from 15 mg to 10 mg yesterday and today and already I am starting to feel it. I have a huge mouth ulcer and can feel another one come up enxt to it so it will be one big massive one soon.

Could this be a side effect of the reduction in steroids or could it be that I am about to go into antoerh flare? I seem to be in and out of flare ups quite a lot lately and dont know what to do. I want the inflammation to be there for the scan but I am starting to feel it
already and not got a date for the scan yet, although he said he would mark it as urgent.

what would you do?


What would you

I think you should ask your GP,Rheumy nurse or Rheumy dept. for advice. It all depends on how long you have to wait. Do hope you get it sorted very, very soon.

valval

yes ask for advice on how long till scan and how long takes meds to leave system good luck hope it shows on scan

bailey27

Hi, thanks for that. He did say to reduce / stop them a few days beforehand. But I figured to reduce / stop them now would show more?! I don't know how I was suppose to cope without anything but thought I'd just take loads of painkillers as they wouldn't effect inflammation?b. Please correct me if I'm wrong. I am just desperate to get on top of this and get it sorted out asap. Any advice would be fab, thanks

dorcas

Hi bailey,
I agree with the other peeps that you should have at least some idea of a scan date before you reduce your meds....and as you've said your rheummy did say to stop/ reduce them 'a few days beforehand' so he must believe that would be enough to show any inflammation in the joints.

I would speak to rheummy or doc about what exactly they want you to do with your meds.......and I don't think you should be doing anything that might cause you more pain.

I know you just want to get to the bottom of all this but be careful bailey that you don't end up with a bad flare of your symptoms. :roll:

Iris x

salamander

hi Bailey, That is quite a big drop from 15 to 10mg. I was initially told to drop 2.5 mg each time and stay on that dose for 7 days. More recently, I've been dropping l mg every two weeks and still having problems. One should never drop steroids without a proper plan from doctors, or so I've been told. If I were you I would ring emergency surgery this weekend and discuss it with a doctor. You may have to go back up for a week and then drop down again but by a smaller dose. To be honest, I'm quite surprised he suggested you go down without giving you proper guidance about how and exactly when to do it.

Good luck.

elnafinn

Totally agree with Iris and my previous reply said similar. You know how bad you get when having a flare. You have already said that on reducing, you are not feeling too good and think you may go into flare again. Of course you wish to get a diagnosis but making yourself ill, again, before you have a scan date would be most unwise in my opinion.

Either seek advice from your rheumy or doc or whoever said you should stop the meds a few days before the scan date, if you need more advice/reassurance.

I have stopped my meds two days ago because I was not feeling too good on either of them (I have OA) and already feel better from not taking either but know that the inflams are out of my system already, for sure, as all the joints they were helping, are playing up. So meds can get out of one's system very quickly, as I have found out. But I am sure that with Preds, you do not suddenly stop taking but wean off them gradually.

I sincerely hope you are not going into another flare so soon.

Luv
Elna x

bailey27

Hi
thanks for your advice eberyone.
I have put it back to 15 mg and am not going to drop it until i have a date. he didnt actually tell me how much to drop it by either so unsure of waht to do exactly. I'll see how I go but to be honestI have been trying to come off pred for months but keep getting symptoms. I could drop more but cant take loads of painkillers because I get terrible stomach problems.
hhmm what to do?
I dontlike to keep going to myGP brbeause I feel I am going there almost evry week and dont want to be one of those annoying patients who go up all the time. I feel in a catch 22 position.

elnafinn

Hi Bailey

Please do not feel that you will become "annoying" if you keep making gp appointments. Remember they are in a job because you pay towards their salary. The medics are there for us to use as and when necessary. If you are unwell, not getting the care you feel you need or answers, then you have to keep going back. They will most definitely not come to see you.

I wish you well,

Elna x

dorcas

Elna's right bailey....you are not being a nuisance!!! and it's really important to get the right kind of advice and to know exactly what meds to take.

p.l..ease get advice :roll:

Iris x

bailey27

Hi
I came down to 10mg for a couple of days nad have found it too difficult. I have put dose up to 12mg instead of up to 15mg, I am getting some pain but I can tolerate it att he moment although the stiffnesson the top of my hip bone hasnt gone all day.

Still not sure what to do before scan yet.

elnafinn

My answer is simple, contact the medics asap to get a plan of action so you can get on with your life the best you can, at the moment. You have enough to worry about, without that hanging over you, like a cloud.

You are not wasting anyone's time, by asking. It is a very sensible, intelligent question to ask. It is something that should be been explained to you at your last visit. The fault lies entirely with those who suggested you reduce/come off your meds for the scan. You are not a mind reader and no one should expect you to be so.

I wish you well,
Luv
Elna x

salamander

hi, I know it is tempting to adjust the dose yourself. I know cos I've done it myself!! But I got into trouble with my joints just like you are. Please, please ring a doctor and get proper advice, or a rheumy nurse.
Honestly, it's not worth messing around with the steroids. It can actually be quite dangerous as your body gets used to the tablets and stops producing it itself. So when you drop down too suddenly and by too much the body thinks it doesn't have enough steroids, which is why you will flare up very badly. It takes time for the body's natural steroids to get up to normal levels. By dropping down very gradually, it gives it the chance to do that. Hope I've explained it well enough, it's a little convoluted but hope you get the gist.

I know how frustrating it all can be. I hate being on them too but have managed to get down to 2mg a day from 15mg. It has taken a couple of months but worth it.

penny44

Bailey I don't post often just pick up tips from all you wise ones but just had to post please be very careful with your steriods they must not be stopped suddenly or too quickly as this will make you very ill. Please take advice from your GP or rheumy nurse. Hope you dont mind me adding this penny x

bailey27

Hi
thanks for your advice.

I am really puzzled. the words of the rheumtologist was.

Before your scans stop taking your meds so the scan will ick up the inflammtions, I questioned himand asked for how long before and he just said about 4 days and then said about a week.

I have read the leaflets you get with your tabs and even that states not to stop taking it suddenly and I have a blue card that I keep in my purse which also states that I am on steroids and must not be stopped suddenly.

I have basically managed to get to 12mg from 15mg. I have got terrible pain in my hip butmanaging to keep on top of it although I am needing to take mroe than the advised dose of tramadol.
I dont know whether I am coming or going to be honest with you.


I have an appointment with my GP on monday and will ask him what I should be doing.

I keep you posted on what he says.

thanks again.
x