prediselone withdrawal

[Burghy]

can anybody help with a way of getting off of prediselone as I have been taking it for at least two years. I have tried several times and the body aches are unbearable.

[Lol1944]

All I can say is

incredibly slowly

hopefully others may have some examples. Unfortunately have lost the actual numbers over time once given to me by hospital but it was so so slowwwwwwwww

[knitter]

I am trying again too , after taking 5 mg for I think 20 years …lost track of the time . Also increased dose when really breathless .

4 mg for two months not too bad , now 3 mg and feel poorly .

Had an exacerbation , so gp upped dose for 5 days , now back on three .

As you say aches and pains , I get light headed as well , panic attacks , sudden fatigue ….horrid . I checked out the NHS website about steroid withdrawal.

I have tried before and gave up …..will see how it goes this time .

Best of luck to you , are you being monitored by your health professional , a gp rings me with advice and I had a face to face appointment as well .

[Alberta56 in reply to knitter]

I hope you can find a way through this really rough time, It sound horrible. Fingers crossed for you and for Burghy.

[Burghy in reply to knitter]

Back at you all the best

[Suzie42 in reply to knitter]

My gp told me to go cold turkey to get through it, but that's ridiculous, so painful. The only thing I di was reduce really really slowly. Eg Mon 4mg, Tues 3mg Wed 4mg and so for a week, then try say 4mg,3mg,3mg,4mg, for another week then so on. Its very hard going. Good luck

[peege]

Not that I know much about Pred however, once I needed to cease an antidepressant so tried to lower taking 4-6 weeks. That didn't work so I bought a pill cutter to reduce over 3 months which worked. I got down to a 1/4 of a tablet daily then 1/4 every other day.What do your medics say or suggest? I'm sure it's advisable to get professional advice

[grumpygirl]

My consultant wrote me a schedule which reduced the dosages very very gradually over a long period of time which worked. Could you perhaps ask yours or your GP to do something similar?

[Egpa]

Hi Burghy, I was on 15mg of prednisone for over 2 years. it took a long time to get of it, I had had an appointment with my consultant just before lockdown and asked to start to come down off prednisone, starting with 1mg a month, some months I had to only come down by 1/2mg for the month as I was getting side effects bad. Some months I could drop 1mg, it took the whole of lockdown to finally get if it, but the side effects took longer, weight took over year to shift. I had put on 2 1/2 stone, but got there eventually. Good luck, take care and stay safe.

[Burghy in reply to Egpa]

Thank you I think that’s the way to go I did get a plan from specialists but I was in so much pain Thank you so much I just think that if I need them in an emergency I am down to 12.5mg and I am determined to do it

[Egpa in reply to Burghy]

Good luck, it's hard but worth it in the long run, I only use in emergancy for short time now.

[Alberta56]

Fingers crossed for you.

[PaulineHM]

Ah feel for you, it’s long term thing isn’t it ?

What is your long term withdrawal plan? Can you share it here ?

I did mine by reducing getting down to 20mg a day then by 1 mg a week. Using something like Paracetamol for the first 3 days of the reduction to help get through the aches, withdrawal effects etc. It took 6 months but I did it, so it is achievable.

Even now with short course of a week’s use I am very mindful and sometimes need to do a taper down the week afterwards.

Wishing you success in ditching the pesky pills.

Go well.

Pauline

[Lol1944 in reply to PaulineHM]

iI do the same now and it works for me. 7days on 30mg daily and then reduction over 7 days. Gp says not necesary but a sudden stop makes me feel like you know what

[Burghy in reply to PaulineHM]

Thank you everyone stay well

[DeeSending]

Hello Burghy

I am sorry to hear that you are stuck on Prednisone at the moment. I have been on and off for 4 years. The first time lasted 15 months from a severe bout of Organising Pneumonia. This returned some months later after contracting a cold and took another year to come off the drug. I now have it when other infections set off the inflammation. Try very slowly to get of the drug. I have found that the withdrawal pain is less if I reduce every 2 or 3 months rather than 1 month prescribed by the medicos.

Best wishes

Dee from Canberra

[Mooka]

It really depends on the starting dose. At about 7-8 mgs your adrenals need to kick in and they can be a bit slow. As others have said take it very slowly but also look at the percentage of the drop. At 12mgs you are dropping one twelfth of your dose but at 5mg it’s one fifth. I used to take my normal dose one day and the new dose on alternate days for two weeks. Then stay at the new dose for two weeks. Then repeat. If you’re struggling with it I would aim to drop one mg a month. The pred covers up the aches and pains so they reappear when we stop taking it. Good luck.

[Burghy in reply to Mooka]

Yes I am trying that I managed two days at 7mg and went back up today and will try lower tomorrow I wish that I never needed them in the first place. Thanks you for your help

[Mooka in reply to Burghy]

That’s why they call them the devils tic tacs! If you can’t get lower than 7 mg ask your doc for a synathen test to see if your adrenals are kicking in as they need to. It’s not easy I’ve come off then twice and found doing it slowing and tricking my body worked for me.

[Biker88]

Ideally you need to see an Endocrinologist to help you with a plan for steroid withdrawal, they will check to see that your adrenals kick back in again once the steroid dose drops down

[Burghy]

Thank you this is my last try that will be next i think

[knitter in reply to Burghy]

I am having problems again with my 3 mg dose , I have tried before and failed. Really tough .

It affects my mood as well as my body .

My friend was given an adrenal function test but it’s not been offered to me .

Best wishes to you .

[grahame151]

I came off Prednisolone from 12.5 mg over 70+ weeks reducing 1mg at a time every 5-6 weeks. Within a couple of weeks my symptoms started again and am now on low maintainable dose of 5mg, presumably for life, I am 76.

[knitter in reply to grahame151]

I am 76 too, my symptoms have all returned on 3 mg …..plus withdrawal aches , dizziness, fatigue …. Maybe I will have to take it for life .

Steroids have been life savers but for side effects….having another bone scan this week , if I can manage it . Have to lie flat and still, and wheeze my way there.

[dalawless]

Not knowing your dose. But you reduce over a few weeks. Untill you are on lowest possible. Then half for a few weeks then stop. Do this with medical supervision. As it can be a stressful.

[Cookiemonsterr]

Hi Burghy,

Been there, done that, felt awful. Take your time! And every time you have managed a lower dose, stay at that dose for 10 days or so.

When reducing ,alternate days with the new dose with days with the old dose

And about the pains, part of them are real, the meds were covering them up. with prednison I feel like superman, and I can run again and none of my rusty joints are painful. And then without the prednison , wham, back to planet earth, end of fairytale, knees, back, hands and feet hurt again. And the extra steroid kilos are not going to help the joints either

Good luck

[Numptybrain]

I’m panicking as I’m just starting pref on 40mg daily, good luck though

Wendy

[LungNRestless in reply to Numptybrain]

Don't panic Wendy <3 I was on 50mg x

[LungNRestless]

Hey lovely It can be incredibly slow to wean down from Pred. I was originally on 50mg. The body aches are a shitty hand to be dealt. I would keep speaking with your health practitioners, ask for a bone scan and also ask for an adrenal function test. I just had mine which gave me the green light after weaning right down, to come off Pred completely. Good luck <3 Stick with it x

[grahame151]

I am on my 2nd attempt to come off these but compared to some I started at a low level of 15mg, I am reducing by 1mg at a time taking that dose for 4-6 weeks before dropping another 1mg. A few weeks after stopping the first time the shoulder pain from poly myalgia rheumatica returned and forced a return to a higher dose but still less than I was on before, that low dose 5mg has held it in check for over a year so am very slowly reducing it, now down to 3mg and keeping the doses for maybe two months to give myself every chance. Tis a bastard and we need to be as slippery and devious as the bloody drug.