Prednisolone withdrawal symptoms: I'm trying to... - LUPUS UK

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Prednisolone withdrawal symptoms

Purpletop profile image

I'm trying to come off Prednisolone, I'm at 7.5mg at the moment, down from 10mg. For the past two days I've been having serious headaches, mainly around my eyes, temple and top of my head, v much like sinusitis. Has anyone experienced similar pain on withdrawal, please?

17 Replies

Are you doing this with medical advice? This is very important. I am also going to start coming down as advised by the hospital but reducing by 1mg a month per mg dose. I have been on steroids for almost 4 years so am being weaned down very slowly. I wonder if you are coming down too quickly which is not advisable. Suggest you check with your GP. I hope you feel better soon. Good Luck.

Purpletop profile image
Purpletop in reply to loopy-lou

I tried to reply before but I can't see my answer so if two appear, that's why.

Yes, i am tapering down on my rheumatologist instruction. It might be shorter taper because I've only been on them for 11 weeks at what is considered to be a low dose (I.e. between 10mg and 7.5mg). I've gone down to 5mg but after 3 days my breathing got so bad that I had to increase. Now I'm keen to get off them, so I am bracing myself. I don't know why I get the withdrawal symptoms, apparently not everyone gets them. I just hope that I don't trigger a flare instead, so I'm taking it easy with my days, rest a lot and started antiinflammatory diet as well.

Good luck with yours. What meds will you remain on? I will still continue with Plaquenil.

Herb profile image
Herb in reply to Purpletop

How do you know it is withdrawal symptoms and not a flare up?

Does your rheumatologist know about your breathing problems? I would talk to them about it asap.

Purpletop profile image
Purpletop in reply to Herb

I did mention it, but with lung tests ok and heart ok, he can't say why there is a problem with breathing. In any event, that has improved now but I'm going down to 5mg from tomorrow so I'm expecting that to reoccur. Ill just have to see.

hello. goood morming. i am also weaning myself from prednisone. from 40mg to 30mg till i get the 7.5mg. as per advise og my Rhemuie. after which i will have a series of lab test. yep. kind of difficult though. its like a truckload of cement is down on your back. evrything is heavy. i could just imagine jesus christ carrying that load of wood on his back. :)

nontheless.. hope and strength for us all..

take care,everyone! Yahuuue!

I really feel for you! I've been taking Prednisolone for 5 years. I have been told by my consultant to wean myself off them slowly. I managed to get down to 3mg but like you the headaches were awful. As a result I have had to go back up to 6mg a day. Very disappointing but I just remember when my dose was 60mg a day and think its better than it was!! Good luck Purpletop, keep well xx

Hello :) I agree with what has been said above. Obviously check with you rheumie or GP but maybe you need to come off them more slowly. i know that I start to feel like i'm having a flare if I drop down too much at once say 2.5mg so I have to drop down 1mg per month. Its really frustrating but I feel a lot better for it. Fingers crossed you start to feel better and you can get off them altogether :)

Hello Purpletop - I've been off the site for a while because I've been in "zombie state" and up to 8/10 level of pain, especially in head, neck, and around eye sockets. (It's not sinusitis - I've had that checked and ruled out!) Insomnia is daily now - mainly (I surmise) because I wake up in such agony after a period of "deep" sleep, longer than a couple of hours. I try to have cat-naps during the daytime (when possible..) so that there is some level of functioning as a humanoid...... my husband is so patient and helpful, but it must be hard for him too.

I've been reading with interest your comments about Prednisolone....I went to see a locum GP about a month ago, when symptoms were just getting too much to bear. He gave me a really thorough examination and came to the conclusion that the head pains were "peripheral neuropathy" (acute neuralgia) possibly due to nerve compression in the upper spine. (I have spondylosis as well as the rheumatic symptoms). He prescribed quite a hefty dose of Pred. (30mg - 6 x 5mg a day, which I presumed to be taken all at once after a meal, as the instructions didn't say : 2 tabs 3 times daily). This did improve things somewhat, but then my own GP was reluctant to prescribe more. The headaches and "brain fog" have been horrendous in the interim, and my husband and I have had to cancel a holiday we booked abroad, because I just could not face the hassle of travel in such a grotty state...... In the end, I've persuaded our GP to let me have some more, but now I'm wondering if the dose is too high?

Unfortunately - I do not have a great deal of confidence in the Rheum Consultant I have been "assigned" to, and the weird "choose-and-book" doesn't function in practice ! Not in this area, anyway.... I've tried to be referred to another one who specialises in Auto Immune illnesses, but always end up being sent appointments with the original one.

As friends on here will know....I mostly try to see the positive side to our predicament. Just lately, though, I feel (literally) as if my head has been banging again a brick wall !

Purpletop profile image
Purpletop in reply to Looby

8 out of 10 pain is terrible, I'm not surprised you've been in zombie state!

Interesting what you say about peripheral neuropathy. Before being diagnosed few months back I used to suffer from numbness in my left arm and fingers, burning/pain in feet arches and severe headaches with weird feeling around my left eye (can't discribe it, really). Once diagnosed I was put on 15mg Prednisolone and the numbness, feet pain and headaches (including the weird feeling around my left eye) disappeared.

My Rheumatologist has said from the outset that I have a mild lupus, only skin/joints and hair, despite the pericarditis and the peripheral nervous system symptoms above. I remained unconvinced that the brain is not involved, given the headaches, the eye issue, the numbness but I thought I'd focus on getting myself out of this flare first.

When I started to taper down from 10 mg to 7.5mg, some of the lupus symptoms returned, including the headache that I posted about above. The headache disappeared after a day or so and haven't had it since. I am now tapering down to 5mg so I am expecting it to come back again. I attribute it to a lupus symptom that comes up on tapering rather than a withdrawal symptom, to be honest.

I would like to identify the cause of those symptoms so that I benefit from the most appropriate treatment. For example, if the peripheral nervous system symptoms are caused by peripheral neuropathy, then there is a drug called Pregabalin targeted to deal with the pain caused by that. If the symptoms are caused by vasculitis (i.e. inflammation of the arteries in the brain) or CNS lupus, then the usual lupus treatment with steroids and antimalarials will hopefully help in the first instance.

Up to now I've noticed that the steroid/anti-malarial combination has worked to some extent, i.e. the number of times these symptoms have appeared has decreased. I don't know for how long that is going to go on but for now I'm keeping my fingers crossed. I am intending to go to a neurologist in any event to check whether my brain has been in any way affected, I hope not, of course. I saw an ophtalmologist who checked my eyes and those are fine.

Meanwhile I'm seeing a personal trainer who, at my request, is helping me do exercises that stretch and strengthen the muscles around my neck. I've also started an antiinflammatory diet in the hope that all these will accummulate to have a positive effect.

Good luck with your treatment and I hope you'll see an improvement in your pain soon!

Hi there PT - I've only just got around to reading your long and FASCINATING reply!

I also have my theories about the role of vasculitis as a causative factor for the crippling headaches....it is always worse after a prolongued period of lying down. (Have tried sleeping in a sitting position, but cannot maintain this....). Saw my GP today (third attempt to see him in person, as I've been so knocked out for the past 2 weeks) and he's fairly new to me, and the Practice. He admitted that he wasn't very experienced in prescribing for Lupus/FM, so I had to suggest to HIM what might be a positive way forward (!) I've asked for a Neurology referral too, because I see my Rheumy for about 5/10 minutes every 6 months. It may be just as long to see a Neuro......our wonderful NHS!

I think I will follow your example and be more disciplined with diet.....I've been doing too much "comfort munching" lately......!!!!

I have had T cell pll. A very aggressive form of leukaemia. I have had a donor transplant and am 19 months in with complete success,but have had a flare up of graft v host disease and am taking prednisolone,micophenalate,tacrolimus and a 16 week course of ecp to combat this.

The treatment has been successful and am now being weaned off prednisolone,which I have been on for 63 days, starting at 50 mg for 9 days, then reducing as follows.

40mg for20 days

35 mg 7 days

25mg. 7 days

20 mg. 7 days

15 mg. 7 days

12 mg. 5 days

I am currently suffering an elevated mental state and severe withdrawal symptoms.

Any suggestions

Since 2 years ago when I posted this question I've been on several courses of Prednisolone, on/off, to cover flares. I've learned that withdrawal, however carefully managed, is still extremely unpleasant not only for the duration of the tapering down but also for weeks afterwards.

I now just grin and bear it because there is nothing else I can do.

Many will tell you that the tapering rate you're employing is too abrupt and that you could go down every 2 weeks, rather than each week and then by a lot smaller decreases than the 5 mg you're using. That could be right in your case, we are all different and respond differently to medication, so you might want to discuss this with your doctors if you think you could benefit. My point is that regardless of how much you slow that down, withdrawing from steroids is not pleasant, so be prepared for it.

I suffer terrible reducing prednisilone. It's awful, headaches, dizzy, breathless and a lot of tummy cramps and sickness. I can only reduce 0.5 mg a month. Got single mg tablets from the doctor. Down to 5mg now and got to come off completely. I alternate the dose for a month also, say I'm on 5mg next time I will alternate 5mg and then 4mg the next day then 5 the next and so on for a month then a month on 4 then 4 and 3 if that makes sence. I can't do 1mg a month as I really suffer. I don't usually have withdrawal symptoms until day 4 or 5 after coming down then it lasts for a week or longer, feels like a flare up but it's not as it passes, get hot sweats and shivers too.

Jo x

It really does seem that the slower and more gradual the taper the better. I started in December 2016 on 40 mg daily and am reducing at 5 mg every fortnight and have had some really impressive headaches and energy crashes , that said I did try a day or two at 17.5 mg from 25 mg just to see whether I could manage an accelerated weaning off .....I know it is silly to try and taper quickly now .. But having been on it for 7 weeks , my insomnia developed into Steroid induced psychosis (basically the tablets made crazy at doses higher than 25 mg a day .. Thankfully ,,I am on 25 mg a day now for the next two weeks before going down to 20 mg and as I get to 10 mg on 27th March this year ..My dose is to remain at 10 mg for 28 days when I suspect I will be really slowed down in my weaning ..And given posts like yours and others in this thread I hope that my Doctors really slow down my reduction and maintain their support for me as the withdrawal symptoms intensify ...

Yes I am down from 50 mg to 12 . Also getting muscle cramps and mental issues. Seeing my specialist tomorrow. Keep you posted

Hi everyone, my first time on here, sent a random email on health issues so thought I would read more! Very interesting what everyone is saying about there experiences using prednisolone, I have been on them for 5 years now, they are for my severe asthma, I was on a high dose when first on them, 40mg a day but managed to reduce them over a period of time, I found when on the higher dose my appetite increased 10 fold, starving all the time! I tried to get off the prednisolone about 2 years ago, suffered dreadfully from muscle and joint pain, totally exhausted, dizzy, I basically felt like death warmed up! Went back onto the prednisolone and symptoms cleared up and felt much better, just by taking 5mg, couldn't believe I felt fine again. Since Christmas I have been gradually reducing from 5mg to where I am today, I'm off the prednisolone again! I'm suffering! Painful joints, exhausted, finding it difficult to climb the stairs without being out of breath, using my ventolin, which I haven't needed for months.

I'm back in school next week, I work as a teaching assistant in the local secondary school, it will be a challenge!

Hope everyone is feeling a lot better soon

Jan

I am suffering from exactly the same symptom as you are! I just searched it to see if there were other ways to get out of this misery, instead of going back to 10mg! Please send me information if you tackle it to help me too, and I will do vice versa too. Get well soon.

Khadija

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