Steroid withdrawal

Hi All. I know this has been covered endlessly but as I can't find any posts relating to it (brain fog?) I'm posting again.

Have been on a steady dose of 7.5 mgs prednisolone for 25 years, give or take the odd hike, and been very stable. Have been on Abatacept (my fourth biologic) since April and done really, really well - felt fab and RA free (almost ) for months but then asked to start reducing steroids slowly to try to come off altogether in the future. Done my best and it's taken me two and a half months to drop to 7.mgs and am now dropping another half to 6.5. Been on that for four weeks and it's all going pear-shaped! Joints have flared horribly, pain levels - which were non -existent - risen to very ouch and, possibly the worst thing has been the mood swings. Am normally very even-tempered but now my moods are like a see-saw. This is no co-incidence with the reduction of the Pred and I'm wondering if anyone else has felt the same. I am past the menopause and really enjoying my life so not stressed and hormonal!

Thanks for any replies.

17 Replies

oldestnewest
  • Pred makes me go totally nuts...emotional highs & lows that completely exhaust me (and my OH!). So doesn't surprise me as a symptom, just a little odd that it hits you at a specific dose. But after 25 years on it I imagine your adrenal glands are really struggling to cope, and maybe this is why, so maybe talk to your GP or rheumy about checking adrenal function.

    But if you're also flaring then sounds like abacept alone is not enough for you, so do also tell your rheumy that this is happening. Must be so disappointing to feel this rough after thinking you've found the so,Union for you - but hopefully a small tweak to mess and it'll all be fine again.

  • agree that you really do need to get adrenal function checked after being on pred for this long. I'd also really wonder if your other treatment is adequate too, though a lot of the symptoms you are describing could be related to inability of your body to deal with physical stresses of any kind (i.e. adrenal fatigue). If it is adrenal problems, then see if you can be referred to an Endocrinologist to monitor any further pred withdrawal. I did know of someone who had to be switched to another form of steroid, under the close monitoring of an endocrinologist, in order to safely withdraw, but even then two years later she still wasn't completely off them.

  • Wow 25 years. No wonder you are having trouble. are you being monitored as after being on it that long you would most likely have adrenal fatigue and your adrenal glands would find it very hard to kick back in as they would be non functioning. I came down 1mg at a time and I was only on it for 3 years. I think you need to seek immediate medical advice as it can be extremely dangerous to come off it that fast after 25 years.

  • I can emphathise! About 18 months ago, I was tapering from 20 mg after a major flare. One minute I could joyously fly out of the window ( I thought); the next, I was read to jump outin despair. Sleepless for nights on end, hyper-active but unable to focus; then deeply depressed. I haven't been totally steroid-free since this beast first struck (2.5 years ago), but I've been at 10mg for the last 4 months. Now that I've started Rituximab, I have to get down to 2.5 mg Pred, or better still completely off it. I'm down to 7.5 . So far, so good ( which is a pleasant surprise), but I'm aware that the drop is more acute, percentage wise, when one is under 5mg. I believe that one's own adrenals glands go to sleep and have to be gradually nudged awake as one tapers off steroids. In some cases, they never stir, so one has to stay on a small maintenance dose.

    In your case, I think the 25 years of steroids is very significant. I'm 71. I don't know whether age makes a difference. I wouldn't be surprised. It might take longer to adapt. I think that reducing Prednisilone can certainly reveal active RA, but I believe that the withdrawal itself can cause pain until one is used to the new level. This must apply all the more after 25 years.

    I really want to be steroid-free. I've already got full-blown osteoporosis and am concerned about other side effects. As well as Rituximab, I'm on 20mg Methotrexate. You don't mention any other drug, but it does sound as if your RA isn't under control. I wonder when you last had ESR and CRP tests. Are you able to ring a specialist nurse, or better still, get an early appointment with your consultant?

    In empathy,

    Jo

  • Yes, this is something I can relate to as well. When coming off the steroids, I'm fine until i get to the lower doses, then it is creeping down by 0.5mg every four weeks and the first week of that is awful -feeling terrible and depressed, irritable, not easy to live with.

    BUT if you are flaring, then without a doubt you need the next dose up!

  • Hello there.....I'm just so surprised that anyone has been on steroids for so long. I was always under the impression that anyone could only be on them for a short while. I only started on Pred in June and am waiting to be told I can't stay on them!! Dis I get it wrong? BTW....I am doing fantastically well on 5mg. Just unfortunate that other conditions have taken the shine off my new body improvements......always the way isn't it? Hope things are sorted out for you soon. X

  • Didn't get it wrong at all. The smallest does for the shortest time is the rule of thumb for steroids. But sadly some people haven't got any options, as nothing else works for them, so it's steroids or pain & deformity. And I know which I'd vote for....

  • Thats sounds like me then. I'm sero negative and have been on every conceivable drug available to me but nothing has worked so well as the steroids. This is with the exception to my 'locked jaw' problem that is ongoing and gradually getting much worse. Strange that steroids can work so very well in the rest of my body but not in my jaw isn't it? Awh well, I'm seeing my Dental Surgeon on Friday so I'll see if he comes up with something other than in injection into the effected area. I will gave to get a replacement I've been told but its just not bad enough.....!! Easy for him to say :(

  • Thanks so much to everyone who has replied. Yep, been on Pred for so long as each time a drug - and I've had them all -has failed, the steroids are the only drug that keep my incredibly active and refractory disease in check. It was only when the biologics came along that I had any real relief but I still had to have Prednisolone concurrently as I flare at the drop of a hat. I am Methotrexate intolerant and unable to take anti-inflammatories due to gastric ulcers. Options are limited! I have appt to see my very good GP tomorrow and he may very well re-refer me to my very good consultant so I'll let you all know the outcome.

    Huge thanks again and also to anyone else who gets in touch.

  • How slow can you go, reducing the prednisone? Maybe you can back up and slow it down? All the best and yes, the important thing is quality if life! Cheers Doreen

  • Hi - I've been on prednisolone in varying dosage for over 20 years, as it has been the only medication that kept my RA liveable with - all other meds made me feel so ill, nauseous and exhausted all the time.

    The side effects of course are silent and I now have osteoporosis, very thin fragile skin and adrenal glands which are only weakly responsive, so I don't cope well with stress. However, without the steroids the last 20yrs would have been miserable , so I have no complaints, and my rheumatologist has rightly kept the dosage as low as possible.

    The max I ever took regularly was 10mg for a short time, then 7.5 on alternate days, then 5 on alternate days, then many years on 5mg daily. I have now got down to 3mg daily. Rheumatologists advise - and I believe them! - that it may never be possible to be completely steroid free (I do start flaring whenever I try to drop below 3)

    When I cut down I start with every third day for 1 month, then every second day for 1 month, then stay on the reduced dose for 1-2 months before cutting further.

    eg: where O is the old dose, R is the reduced dose it is

    month 1 OOR OOR OOR etc

    month 2 ORR ORR ORR etc

    month 3 RRR RRR RRR etc

    Yes it takes forever, but my body seems to be fooled!! (the somewhat tedious method was advised by a rheumatologist, but it works for me)

    BUT the principle is the same - steroids can be amazing, but if you can find anything else that works do try to avoid them for the long term, particularly in higher doses, as side effects are likely to be worse with higher doses. (I always used to look very young for my age, looking much younger than my little sister - now at 63 I can easily pass for 10 years older - which of course she finds hilarious!!)

    Good luck - and may the good days ALWAYS outnumber the bad

  • Thanks for the reduction table - looks like a good way to go. If I ever manage to reduce I'll try this.You're so right about the silent side effects though so far, touch wood, my osteopenia has stayed at just that with Zoledronate yearly infusions and I've been free of weight gain and moony face. Just lucky I guess but also crackingly good care from NHS all the way through.

    Good luck to you too and thanks again for the encouragement.

  • Hi to all who have been following. Saw GP today. He thought it's better to have a quality of life than reduce Pred by a couple of milligrams and feel absolutely lousy. After 25 years he says it's very unlikely I'll ever get below 5mgs so go back to the dose I'm stable on - 7.5 - and that and the Abatacept, which really suits me, should make me happy and smiley again! Hooray.!! My GP's great and very informed about RA and he's had to put up with me for 20+ years so I'm very lucky.

  • With this disease I reckon if you find something that works for you, whether elixir of nettles, strong drugs or steroids, then use it! Will he battle it out with your rheumy I wonder? Hope he's also monitoring you for potential side effects, and getting you to carry a card in case of accidents.

  • Hi. I like the elixir of nettles idea as long as it's mixed with gin....

    My GP will write to my consultant, I'll see the consultant in January and tell him what I want to do not what he wants me to do! These docs are great and I get on really well with them but there come a point where I shall have to put my foot down with a firm hand because we live with this disease day in, day out and they don't. I've gone along with almost everything so far but I'm not going backwards now when I've been so stable and so well. That's it. Foot stamping over. I'll report back. Going to find some nettles.

  • I have been on Prednisolone for 4 years, firstly at 30 mg prescribed for sarcoidosis of both lungs, this has been reduced over the years and I got down to 5mg, but after the adrenal tests had to go back up to 7.5mg, also told that should I get stressed or have any medical procedures I will have to double the dose, not happy about this as I have put on so much weight and as I'm diabetic my GP is not too happy about this, but as my adrenal glands are not producing hardly any cortisol I have to stay at this level. I still haven't got a firm diagnosis of RA, but will see my consultant on Thursday for hand MRI result. I also take MTX injection at 12.5mg, hydroxychloroquine 2x200mg and loads of other drugs.

    Glad to hear you have a good GP. Hope all will be good for you soon.

    Jan

  • Hi I have been on Abatscept for two years now after trying all the others, I am still in pain all the time. Consultant has asked me to try prednisolne 7.5 my. I have bipolar so am a bit worried as I have been hospitalised twice in Psychiatric ward by having steroid injections when having flare ups, I have told my husband and daughter to keep an eye out for any symptoms lol. Consultant has told me there is no other Infusion left for me to try.x

You may also like...