Side effects after prednisolone

[Chynnamoss]

Hi, I've been off pred for almost four weeks now and am experiencing some awful symptoms. Stomach pains, headaches, painful wrists and fingers, nausea, rashes, and tiredness. Has anyone experienced any nasty side effects? I really don't know what to do.😞

[PMRpro Ambassador]

I would be very reluctant to put that lot down to being off pred. I think you need to see your doctor.

[Chynnamoss in reply to PMRpro]

I saw her today, she's ordered blood tests to check some things. I had esr and crp done a week ago and it's come down to 22 the lowest ever.

She's not sure what's wrong.

[HeronNS]

mentalhealthdaily.com/2014/...

You've got some typical withdrawal symptoms. Would your doctor recommend a small dose to help you feel better? I've read that a lot of people need to take even 1/2 mg for quite a long time while their body adjusts. I think eventually they can start taking the tiny dose every couple of days and finally be rid of pred altogether. No doubt there will soon be more experienced people here to give better advice.

[Chynnamoss in reply to HeronNS]

Yes I've asked around and looked up information on some reputable sites and they've said they're typical symptoms.

Thanks for the suggestion it's probably a good idea to have a small dose for a while, I'll ask her. Any suggestions are welcome, thanks.

[PMRpro Ambassador in reply to Chynnamoss]

Just occurred to me - how slowly did you come down on the pred dose? Did you ever have a synacthen test to see if your adrenal glands are working well enough to stop the pred altogether?

Thanks Heron - I wasn't thinking about that!

[Chynnamoss in reply to PMRpro]

I started on pred over2years ago on 40mg as my rheumatologist was not sure if I had GCA. All tests were negative but still reduced as he instructed. Untill I got down to 10mg then started reducing by 1mg following a recommended plan.

I soon had severe acid reflux in spite of taking rabeprazole as I previously had surgery for hernia repair and acid reflux. I ended up back with the surgeon who confirmed the steroids had reversed the surgery and the acid was now causing damage to my asophagus and throat. I went on a diet and upped my medication and he is unable to redo the surgery until I've been off pred for a year.

This meant I can't take the 1 mg as they aren't coated which has made things difficult. I've reduced with the help of my GP and have now been off them for a month.

No ive never had any tests to see if my adrenal glands are working maybe I should ask. All I know is that I feel so ill some days it's worse than the PMR was.

I had so many awful side effects on pred I don't want to take them if possible.

[PMRpro Ambassador in reply to Chynnamoss]

There are other options - including putting the uncoated tablets in an acid-resistant capsule but that's by the by. And there is one form of coated that comes in 1mg, they aren't cheap but if there is no other option...

If your adrenal function is poor and isn't recovering you could end up more ill than you are already and it can even be life-threatening so in your place I would insist on a check - it isn't major surgery but better safe than sorry. A lady on another had just had an adrenal crisis while still on 5mg - and another said she's had a couple while on 5mg for life. It really does pay to be careful. I know it sounds scary - but forewarned is forearmed.

[Chynnamoss in reply to PMRpro]

Thank you so much for this information, I had asked if there was an alternative I could have and was told no. I've also been getting temperatures and I also told my GP my urine output is much less.she said she doesn't know what is wrong hence the blood tests.

I'm taking your advice tomorrow and insisting on being checked. I'd rather be wrong than end up really ill, I can barely cope now.

It is scary and I just want to do the right thing and feel right.

Do you have any idea where I can get information on this so that I can actually show the GP as I know it will be pushed aside .

[PMRpro Ambassador in reply to Chynnamoss]

This might help her

derbyhospitals.nhs.uk/easys...

Maybe the "Risk factors" part of this will remind her:

nlm.nih.gov/medlineplus/enc...

though she needs to realise that everyone is different and while you may have reduced slowly, it may not have been slowly enough - and, however slowly you reduce, if your adrenals aren't able to start working again, they aren't going to work! Dehydration is a result and dehydration will result in reduced urine production.

[Chynnamoss in reply to PMRpro]

Thank you I appreciate your input and will make an appointment tomorrow to see her armed with info to back me up.

I'll let you know how things go. Not many of the medical profession seem to have much idea about this condition so it's not surprising that some of us don't.

Many thanks

[Chynnamoss in reply to PMRpro]

Well after another two weeks and another GP visit things are no better in fact I feel much worse.

The pain is becoming unbearable and nothing helps apart from not moving.

The only good thing is I found the rash was coming from the oil being used in a massage I was having to help me but it didn't really help.

The down side being if I do to much I get palpitations. I think I have to insist on the test as I am feeling so ill I now can't get out.

[Car00b]

Was wondering how qickylyyou have come of pred and how long and what strength you were started at . I started at 15 mg in November 14 and am now at 8 mg which I have been at for the last 4 months because my ESR and CRP have not come down below 35. As A general rule most of us reduce very slowly . My doctor insists on blood tests every time I am to drops dose which normally is every six weeks . And it is expected to take 18 months to two years or longer to reduce . Also a lot of us take lanzoparole or something similar to protect the stomach against the acid that the prednisalone causes . Which helps stop aulcers

etc . Eat plenty of yogurt to help as well . Good luck .

[worriedaboutPMR]

I came off a low dose Pred in Sept last year feeling great (after being on a tapering dose for 2.5 years) ...that lasted until Nov then oh boy a lot of my symptoms came back. I thought oh no I'm going to have to go back on them but I batted on and got through the fatigue, aches etc. Apparently the Pred takes a couple of months to fully leave your body (even really low doses) so unless you keep on feeling too bad I would say stick with it.

As someone has said it will depend on how low your dose was when you came off them as to how your body will react / withdraw from the medication. Good luck

[raymck]

Agree with the others who say they have quite noticeable after-effects! I thought it was worth staying off prednisolone altogether and don't really regret it in spite of stiff joints/etc. Now other problems, possibly unrelated to steroids have taken over and are getting preferential treatment. As they say, it's best to taper off very slowly and the loss is a bit more bearable. Keep on persevering it will ease off in the end, is my opinion as a single-sighted ex-GCA driver.

[HeronNS in reply to raymck]

Raymck, do I understand correctly that you had the usual pred journey and when you were finally weaned off you had some withdrawal symptoms which you weathered rather than taking any more pred? That is interesting. How long did it take before you felt that any physical symptoms were no longer related to pred withdrawal?

[raymck in reply to HeronNS]

Hi, HeronNS, it was at least a year but some of the skin problems and stiffness continues to this day. Even the meds given by GP just about keep it managed, so hope you get on better in Scotia. Maybe the colder cllimate will help? I lived in Ontario for 12 yrs so know what it's like. Cheers, raymck

[Chihuahua1]

I'm still on Prednisolone and I'm experiencing all of the above symptoms with the exception of the rashes and the nausea. Some symptoms are intermittent while others seem constant. One particular problem at the moment is the swelling of painful wrists, hands and fingers accompanied by considerable stiffness in the finger joints

[Hidden]

" Corticosteroid drugs are actually harmones produced in human body. These harmones are essential for the normal functioning of the body's systems." This is from "The Polymyalgia Rheumatica Patients Sourcebook" by Stephen Trutter, MA & Sue Feher MD (Ed.). Further on they say, "Since pred. aids the body in the production of harmones, your body may become dependent on it. This means your adrenal glands won't be producing the right amount of harmones they ought to produce." (I read somewhere this is especially true the older we are.)

"Withdrawal symptoms usually only happen when you stop taking steroids suddenly. Symptoms are; weakness, tiredness, feeling nauseas, vomitimg, dizziness, fainting, and collapsing.

[PMRpro Ambassador in reply to Hidden]

"Withdrawal symptoms usually only happen when you stop taking steroids suddenly. Symptoms are; weakness, tiredness, feeling nauseas, vomitimg, dizziness, fainting, and collapsing."

This isn't quite true unfortunately - you can experience an adrenal crisis while still taking pred. A lady on another forum has just had one - while taking 5mg pred having reduced, successfully she thought, very slowly.

If your adrenal glands are not producing their own cortisol then once you are below about 7mg you are deficient - and for some people 5mg is sufficiently deficient to cause problems. She woke up feeling unwell, couldn't lift her head off the pillow. Towards lunchtime she got up to go to the bathroom - and the next she knew there was a paramedic next to her. She was admitted and put back to 10mg, reducing 1mg at a time. After a week she still feels poorly.

Don't assume that because you are taking SOME pred that it is ENOUGH pred.

[seoirse]

Hi

I too experienced side effects. So much so that I began to think that the cure was worse than the illness! However i persisted and, once the dosage was below 20mg, began to find that they wore off bit by bit.

Now I am down to 1mg and, hopefully, off them next month.

So my best advice is 'Yes. There are debilitating side-effects but they are better (just!) than the alternative and will lessen with lowering of the dose.'

I have temporal arteritis and have been on the pred since June 2014.

Hope this is useful.

[DorsetLady PMRGCAuk volunteer in reply to seoirse]

Hi seoirse,

I was diagnosed in April 2012 with GCA (late diagnosis, so well advanced) and apart from a couple of glitches fifteen months in (not flares, but caused by stress of bereavement), have reduced slowly, but so far, successfully. Am now at 2mg. I shall continue at 0.5mg a drop using a slow reduction plan until hopefully down to zero in the next few months.

As you can see, you have reduced much quicker than me, but I think I may have been ultra cautious due to the very traumatic start I had.

Nevertheless, I shall be very interested to hear how your attempt to get off Pred goes - please let us know!

[BonnyQuine in reply to seoirse]

Thanks. That's reassuring and is what I need to know.

[jessjon]

Hello,

I am writing on behalf of my mum, she is Swedish and doesn't speak much English. I am reading (and translating for her) your posts above about the side effects after stop taking pred, and wondering about the situation my mum is in. She was diagnosed with PMR in 2008 and came of pred 6 months ago. For a while afterwards she felt fine but after a few months started feeling worse and worse. She has very stiff joints (she can hardly get out of bed in the morning) but usually feel better in the afternoon once she has been up and moved around. Although after sitting down for a long time it is difficult for her to move/get out of the chair. Her muscles are weak, she is very tired, has pain on the outside of her arms and legs, her hair is falling out etc. She says that sometimes it feels like it is PMR but because most of the pain is reduced once she have moved around, she doesn't think it is. She takes some pain killers which help. Do any of you recognise these symptoms, especially after finishing with the pred? She went to her doctor today and they told her to maybe start with pred again, and that would be 20mg, my mum is very reluctant. Anyway, just wanted to say that I read and translate a lot of the posts on this site for my mum and it has been a life saver for her sometimes. Thanks

[HeronNS in reply to jessjon]

There will be others along with expert advice, but I just want to ask why the doctor would recommend 20 mg when 15 mg is generally the standard effective dose for PMR? Her symptoms do sound like it could be a return of PMR but the only way to confirm that would be to take pred for a few days and see if her symptoms resolve quickly. At least then she would know. I can understand her reluctance to take pred again even if PMR is confirmed. One week on pred doesn't commit her to continuing for a long time, it just clarifies the diagnosis. I hope that a good solution can be found. We can all relate to the misery of chronic pain. And if a short course of pred doesn't help her then at least the doctor can start to investigate other possibilities.