Hi all, I really hope you are all not having too many problems with this cold weather.
I have been on a 6 week course of steroids and finished them last Tuesday and am seeing consultant on Wednesday to decide future treatment for ILD caused by RA.
I have been really bad this last few days and have been told that I shouldn’t have just stopped the steroids but reduced the dose and that what I’m experiencing is ‘cold turkey’. Has anyone else experienced this?
I was like that when pain clinic stopped my tramadol and co.codamol. it was awful know how u feel .rheaumtoglist put me straight back on them xamy
What dose were you on? Less than 3 months on 10-15mg is not supposed to cause a problem. It's when you have been on a high dose of 30mg+ for a long time that it can be very hard.
Even so, you normally have a couple of weeks on a reducing dose even with just a short course.
However, what you are experiencing could equally be the disease as the steroids will have calmed things down..... hope it calms down quickly.
Hiya Brenda. Much depends on the dose you were on, & the length of the course, although it was only 6 weeks you may still have needed to taper them. I'd contact your Rheumy nurse just to be on the safe side, ask if you've done the right thing stopping them last Tuesday or if you should be following a safe taper plan. Whoever it was that prescribed them should really have told you what to do when the course was finished. It indicates that you did right if you weren't given a taper plan but with you feeling bad it's questionable.
The general advice is (& it is general because it's different for everyone) if your course was less than 3 weeks they can be stopped abruptly, if your course was 1 week or more at 40mg or higher then a taper plan should be formed. Not sure if you know but steroids take over the body's natural way of producing glucocorticoid cortisol, a steroid hormone that's produced by the adrenal gland. If we come off steroids too quickly it causes adrenal insufficiency or even shock, this is when the body hasn't had enough time to re-start natural cortisol.
You don't give your symptoms, could it be RD creeping back having been kept in check by the steroids? I'd think you recognise them though. Symptoms for adrenal shock are dehydration, low BP, feeling dizzy, severe nausea/sickness, diarrhoea, muscle aches/weakness amongst others. If you feel you relate to these then please see your GP tomorrow, you may need to re-start your steroids & start a taper. Or, if you're having any of the above symptoms or they worsen call 111.
I hope you start to improve & it was your RD symptoms being held in check by the steroids. x
I’m experiencing weakness, nausea, dizziness and increased breathlessness. I was 40mg for 6 weeks so looks like they could be the cause. I shall ask for drs home visit today.
Thank you all for the advice, much appreciated
How are you feeling today Brenda? I hope you're successful having a house call.
I’m in hospital with pneumonia just in a and e waiting for a bed. Thank you for asking x
Oh your poor thing....and on top of ILD! I've had pneumonia twice now (once hospitalised) and it's really horrid. Hope you get a bed soon!
Thank you x
Oh heck, I didn't expect that. It explains the breathlessness & dizziness. No wonder you were feeling rubbish. You have lung problems too don't you? I hope they've found you a bed by now & making you more comfortable. I had 11 hours overnight in A&E the other week, it wears you down when you're not well. Hoping it's a short stay & you're feeling better really soon. x
Are you taking Methotrexate as well as Prednisone? I have read that Methotrexate can cause lung problems. My Rheumatologist told me to monitor my cough to avoid a serious lung infection.
I took methotrexate back when first diagnosed, didn’t suit so went into rituximab which has been good for me up to now.
I'm not sure if you did mean to ask me CJ936, but I take both MTX & prednisolone. Recently had a lower lung infection unrelated to either med, no cough.
Hello, I am Brenda’s daughter. I regret to inform you that Mum passed away on Thursday. The pneumonia just consumed her and the ILD and she wasn’t able to fight the breathlessness. She passed peacefully with all those she held dear around her. Her last few hours were traumatic before she became unconscious, so I’m sure for her, death was the release she’d been hoping for. For us, it’s left a whole in our lives that can never be filled. I am eternally grateful that Mum had found this support group, she discussed it often. Thank you for touching my beautiful Mums life and I wish you all the very best in overcoming your challenges x
I'm so very sorry, my sincere condolences. Thank you for letting us know, your Mum will be missed here, she was always supportive & empathic &, despite her own problems, very cheery. It's the worst time when you lose your Mum, I was 23 so it's 34 years ago & I remember the phone call still, the shock even though she was in hospital. Hold your memories dear, you only have one Mum.x
So sorry for your loss, and glad to hear your Mum found this forum helpful. It is such a surreal time when you lose a parent, take care of yourself. Best wishes
how are you these days Brenda
Philvaughan please read the above posts. Sadly Brenda1952 passed away. 😢
so sorry too hear
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