? Prednisolone withdrawal : I tapered off... - PMRGCAuk

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? Prednisolone withdrawal

Breconblue
Breconblue

I tapered off Prednisolone about 10 days ago, finally ending on 1mg alternate days. However I have felt most unwell since, starting a week or so ago. I defo don’t have symptoms of CV. I lost my appetite first, then had a “hot” feeling in my oesophagus. Then extreme nausea, two bouts of vomiting ( on totally empty stomach) . I have been in bed three days and no better. If I get up and try and do any thing I get sweats. I feel dreadful and don’t know what to do. My GPS are not seeing anybody . My sister suggested it could be Steroid withdraw but I thought tapering would prevent any symptoms. Have any of you experienced anything like this?

29 Replies
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Your sister could be right if you have tapered very quickly.

You could also have an infection , although vomiting may suggest flu or another virus rather than CV which is persistent cough , fever .

Your doctor may not be seeing patients because reducing the risks of people catching the virus but if you are having symptoms you can ring and explain them and request a phone appointment.

They will decide if they can diagnose over the phone or they will need to see you you send someone to you.

Do not forget to tell them all your symptoms and that you are just coming to the end of a steroid taper and how quick it was.

I hope it isn't anything too serious and you feel better soon

Thank you. It wasn’t a fast taper at all but I’ve looked on Google and seemingly you can get withdrawal symptoms even so. Had a very bad night, just don’t

Know w hat to do with myself

You will still be in recovery phase after steroids and withdrawal symptoms and adrenal insufficiency could be making the symptoms of a flu or infection feel worse.

Are you still being sick or has that stopped, and have you checked your temperature?

How many days have you had this virus?

In the current climate you should ring the GP for advice , as they will have health precautions for you to follow at the moment because of Covid.

I don’t have a temperature.not vomiting at the moment but not eaten for 3 days just the awful nausea and sweating, plus, as I have written before intercostal muscle pain which I’m sure is connected to PMR but was undiagnosed. I was given Valium for this . I don’t take it unless I’m in a huge amount of pain. I be been ill a week but getting worse

Oh and non stop burping . Honestly I feel as if I’m dying

It could be a stomach infection or an upset stomach after medication changes. Your intercostal pain will be worse if you have been vomiting. Burping can also be part of this you will have alot of stomach acid and gas especially if you have not eaten.

You do need to speak to a GP.

You may feel better if you can get down some food ( yoghurt and honey , rice or toast) and some medication , your Valium or Paracetamol at the least for a few days , and definitely need to drink .

Thank you Bleary.. felt like only you and I were awake all night ( unless you are in a time difference!) I’ll try and get a GP phone app today but not holding out much hope as last time the message was just to go to A and E... not only about to die though I feel it I don’t want to end up with CV!

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Breconblue

Does your surgery have an eConsult facility - you contact them online, and GP replies same day with advice. Or a facility to ring for advice when surgery opens - they still have to treat emergencies and situations like yours.

It does sound more than steroid withdrawal - from 1mg to zero shouldn’t affect you that much.

I staggered in to husband this am ( he’s working from home and needs his sleep) He said he would contact GP surgery. I normally do everything apart from his job but too sick to care. Next thing I heard him telling receptionist i “ had felt a bit sick for 4 days” Grrrrr but I got a phone app later thankfully ..

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Breconblue

Men!! Don’t you just love ‘em....but glad you’ll get to speak to GP.

Some just don't 'get it' do they. Must be tough living with someone who doesn't understand how debilitating this pesky illness can be.

Hope health-wise things are getting easier for you.

Take care!💐

Well he is walking the dog and feeding the cats ( one of which he loathes with a passion!) so for that I’m grateful. He doesn’t quite get that cats don’t come instantly when called , have to be taught not to steal food off the worktop ... if you’re present anyway! Other cat behaves more like a dog and goes on walks with him, doesn’t jump up on kitchen tops and generally sucks up to him...

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Constance13

Sorted out the summerhouse yesterday - not sure that’s what the surgeon meant when he said - quote from letter - “I’ve advised her to start building up her strength and movement in her shoulder”.

Heigh ho - daughter pulled a face when I said what I’d done - but as she’s in NZ - can’t do much to stop me! No doubt, son will have a nag as well!

Keep well 🌷

Like it!😂

Call 111 to ask for their advice...feel better soon, men just don't seem to understand do they X

No problem , I was up trying to control my own symptoms as my Dysautonomia Breathing and Heart symptoms have been up the wall through the last 24 hours.

Helping you was probably helping me as well. Get well soon.

Hi all, thank you for your support, this group is fantastic. Esp Blearyeyed , responding to me in the early hours! It’s a very long night when you feel vile .. GP called me back, says unlikely to be Pred related but prob since I also stopped the Omeprazole at the same time it’s caused bad Acid reflux. I am to restart and she is prescribing anti nausea tablets, so fingers crossed. I can deal with the joint pain but not the constant nausea !

Glad to hear you have some help now.

If you can drink well , sipping water , green tea ( any flavour) or especially ginger tea through the day . It does help reduce the acid reflux and the nausea.

Also eat probiotic yoghurt with a little honey with medication , at breakfast and a few spoons before a meal while having an acid reflux flare it cools the stomach and helps prepare it to cope with the food.

Make sure your head is comfortably propped on pillows , this reduces the acid moving up your oesophagus during the night as can sleeping on your left hand side.

If it continues beyond the weekend , especially vomiting or a fever , do get another phone appt , in case you are suffering from another infection .

Self isolate properly at this time your system will be weaker after being ill causing increased reduction in immunity even if you have stopped steroids. This will put you at more risk of a severe case of CV if you unfortunately catch it from others.

Use your own towels and if you share a bathroom make sure other members of your household clean handles, sink etc after using it.

Maintain social distancing from anybody inside who goes outside.

Use your own cups , cutlery etc which you wash yourself.

Other family members must wash their own clothing .

Hope you feel better soon .

PMRpro
PMRproModerator

How quickly did you do the taper and how long were you on the alternate day regimen? Fast is a relative concept!

What you describe could well be adrenal insufficiency. You sometimes have to taper very very slowly to avoid the adrenal glands not being able to keep up - and I'm talking 2 or 3 months at each dose below 5mg. Even 2mg can be enough to keep everything working well - if you have some adrenal function then 1mg is enough. But only 1 month at 1/2mg is possibly not enough.

Your GPs will not be seeing anyone face to face without triage - they are NOT withholding all care. My daughter had an appointment last night: she phoned and was told what time to come and to wait in the car outside until she was phoned to come in.

Breconblue
Breconblue
in reply to PMRpro

I tapered 1mg a month but by the time I got to 2mg CV had set in so I had two weeks then 2 of 1 mg then alternate 1 mg for a week. If that is the problem, should it sort itself out without going back on Pred?

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Breconblue

When I was at such low levels - only did 0.5mg a time - and a slow taper - my mid length one taking 7 weeks front old dose to new one.

On the 0.5ng to zero I did feel a bit odd for a couple - so restarted. Everything fine then.

Agree with GP, Omeprazole is probably culprit - some advise taper off that as well - it didn’t, but didn't have any issues - but it takes something very serious to upset my stomach (fortunately).

PMRpro
PMRproModerator
in reply to Breconblue

At that stage that was far too fast a reduction to allow your adrenal function to return reliably, it can take over a year for adrenal function in response to stress events such as infections or trauma to return to normal. It won't have occurred to the GP that reducing pred like that will have been a problem - they so rarely need to work with patients tapering off after long term pred. Most people who need it long term do so for medical conditions that aren't going to change or go away. Otherwise it is used in bursts to manage other conditions until other medications kick in - antibiotics or DMARDs for example.

I realise that you thought stopping pred was a good thing - but at a dose of 2mg your immune response is unlikely to have been compromised but that 2mg was plenty to allow your body to function normally day to day. Your adrenal response, were you to develop Covid19 or any other infection, is still unreliable and they would need to be told that you had been on long term pred so they could take it into consideration.

All together that reinforces my concern that this is an adrenal insufficiency problem - and if it were me I would go back to 2mg pred and redo the taper taking much much longer about it. You may find that 1mg is enough if you are lucky but such low doses are safe. It is above 10mg/day that adds to the risk of PMR.

tangocharlie
tangocharlie
in reply to PMRpro

I thought about adrenal problems too as vomiting can be a symptom of it. If you Google 'Addison's' it gives a list of symptoms. I know it's not Addison's but as an endocrinologist once told me it's 'a medically induced form of Addison's'.

PMRpro
PMRproModerator
in reply to tangocharlie

Ditto!

Breconblue
Breconblue
in reply to PMRpro

Thanks PMR pro. Just read this. Over a week later, I feel just as awful, double dose Omeprazole , Maxalon but this latter has done nothing for the nausea. I managed to get out of bed long enough to watch “ Countryfile” last night, by the time I climbed the stairs again I was sweating and feeling faint. I only feel reasonable lying down. I’m desperate to get better because I’m afraid for my GC with my daughter who has MH issues I can’t remember if I said .. would you start on 2 mg ? If so, how long do you think before I notice improvement if Adrenal Insufficiency the cause?

PMRpro
PMRproModerator
in reply to Breconblue

I would go straight to 5mg which is a typical replacement dose in secondary Addisons - if that works then confront your GP if you can get hold of them at present, which I doubt!

Then after a few days, once you feel better try a bit less and see if you still feel OK and do that until you find a dose that isn't enough. It SHOULD be 2mg or even 1mg but it may not be now. Or not yet at least.

But having got so low, 3mg or less, you should try to get them to do a synacthen test - but again, I doubt it at present somehow.

Breconblue
Breconblue
in reply to PMRpro

Thanks PMR pro, I shall go with your suggestion , and let you know how it goes 🙏🏼

tangocharlie
tangocharlie
in reply to PMRpro

I agree with PMRPro, when I felt really rough and adrenal poblems were suspected I was told by my rheumatologist to immediately go back up to 5 Pred. Once the healthcare system gets back to normal, if you can't get below 5 without feeling very unwell you may need to be referred to an endocrinologist for synacthen tests etc, but as far as I know GPs can't do that it has to be your rheumatologist. You should be safe at 5mg Pred so if that doesn't stop your problems then it could be somethng else and I'd try and contact your GP for advice. If you mention that you might have adrenal problems following reducing steroids they take that very seriously, mine sent me directly to A&E.

I would absolutely go to 2mg. and hopefully feel better in a couple days but I am NOT an authority by any means.Listen to PMR PRO and Dorset! But I agree It was all too fast and now with the stress of everything I would go to 2mg (or more) and stay put for a month at least! And then I would go down incrementally .5 like dorset lady said. I was at 2 for maybe 3 months and now am at 1-5 having lowered SLOWLY. using DSNS method. and I am sticking to 1.5 until the end of this business with virus .. and then going down to 1 after a couple months on 1. maybe getting to .5 by fall. and then try .25 (getting down to Dumbos feather levels) for a good month before tapering to 0. Of course this also depends on being able to get the prednisone. And definitely taper the omeprazole slowly too. AND feel better!!!! good luck to you.

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