Good Morning, I was wondering if anyone has had the same problem I am. I keep trying to get off prednisone but every time I do, I start experiencing the same pain I did in the beginning. I was only on 5 mg a day, and I was weaned off of it correctly. Can 5 mg really make that big of a difference. My rheumatolgist told me that I need to give my endocrine system time to start working but it has been a week and the pain keeps getting worse. Any advice will help, thank you.

33 Replies

  • Hi - sorry to hear you are having trouble getting of the steroids. How long were you on them for?

  • Hi there, I got myself down to 1mg from 10 over a few months but could not go any lower as was in so much pain. My consultant asked to to get off them but could not, I could not even move and I have to work. So doc said to just stick with 2.5mg until further notice and that was nearly 2years ago. I hope you manage to get off them soon.. take care

  • I am still trying, thank you. I appreciate everyone's answers, they help alot.

  • For almost 2 years, so it has been a struggle, I actually got steroid induced diabetes but as I wean off of steroids my A1C gets better. So I am hoping I can stay off of them :) hope we all have a pain free day

  • I don't mind taking a steroid injection but I draw the line for these tablets. I have had to take them periodically but only for a week at a time My Dr knows I will take anything else but them. My Mum was on long term with these tablets. I still say they contributed to my Mum taking Dementia She had fibromialogy they did give her pain relief but was it worth it My opinion No. I really hope you manage to give them up. Try patches for pain relief different kind and different strengths.

  • I've recently been prescribed pred, 2.5mg, as my Rheumy says, & I've no reason not to believe her, that I can't do a safe or successful taper after 4 years on 3mg deflazacort. I did try once about 3 years ago after a Registrar suggested I did but nearing the end I started flaring so my GP recommended I go back up to 3mg. I realise now I'd never have done a safe taper on the deflazacort, though the Registrar damn well should have, or at least have asked my Rheumy, as the lowest dose they're available in is 6mg. This meant once I'd reduced the dose to less than a quarter of a tablet, lower than 1.5mg, the dose isn't accurate enough. It didn't occur to me at the time, nor my now retired GP. The plan this time is 3 months on 2.5mg pred then when I see my nurse at my 3 monthly appointment she'll give me a detailed tapering plan. I expect it will be quite a long affair.

    So, I'm not much help I'm afraid but I do empathise. If I can feel that much of a difference on less than you on another steroid I'm sure you on 5mg will. Sucks doesn't it?

  • Yes, it's hard, because it feels like a miracle drug but it can do so many bad things to your body. Thanks and have a great day and good luck.

  • I don't know if it was because I was (am) on a low dose for a lengthy time but my bone health has remained the same, osteopenia/borderline osteoporosis from 2 DEXA scans over the 4 years. I've also recently had the HbA1c, which came back normal. So no long term damage thankfully. I hope the same for you.

  • I'm so glad you are doing ok. Keep an eye on your HbA1c, because steroids have a possibility of causing diabetes, it doesn't happen to everyone, thank God..

  • It'd be Murphy's law if I did whist tapering after being on another without issues for so long when I was tested normal only 5 weeks ago woułdn't I?! I am aware though so will test myself & see my GP if need be. Thanks. 😊

  • Ok I just didn't know if you knew that it can happen, I was never told this and wished I would have known. I didn't mean for you to go get re-tested being that you had just been tested.

  • No, it's good to mention, not everyone is aware.

  • You were lucky. I ended up with T2 Diabetes. My rheumy went on at length about the eye problems associated with taking hydroxychloroquine and not a word about T2. I started steroids in September and was T2 by early November - that fast.

    Mind you I was already taking part in a pre Diabetes study so it was all there waiting to happen. I was told to 'watch my diet' and fill up with carbs! I discovered when I bought a blood glucose meter that that was the worst advice ever for me, I was lucky enough to discover and buy A marvellous book by Dr David Cavan about How to Reverse your T2 Diabetes and totally changed my diet which got rid of the T2. I can't recommend that book highly enough.

    My prednisone dose started quite high but started tapering down straight away and I was only on it for three months. I also started on hydroxychloroquine before I finished the steroids, I don't think they kicked in before I stopped the steroids but they certainly didn't take long to do it so the pain that had gone away stayed away.

    Steroids are wonderful - I felt like superwoman when I was taking them, especially at the beginning and they can be awful at the same time. I often wonder what I would have done if my rheumy had told me I could end up diabetic.

  • I suppose anyone who are considered to be at higher risk of diabetes are also at higher risk of steroid induced diabetes, as you must have been to be considered for a pre diabetes study. I was fortunate, am fortunate, as that wasn't the case with me. I do think that it should be advisable to test first, although if inflammation needs to be brought down quickly it's a difficult call, especially if it comes back as a positive. I suppose it depends on the circumstances. In my case there was absolutely no need for me to remain on them for so long whether or not. Whilst deflazacort is more bone sparing it has the potential to be a diabetogenic just as prednisolone is. Although I'd been on 3mg for a long time prior to this I'd only had relatively small doses, no higher than 6mg for one month, equivalent to 5mg prednisolone. Maybe that's why I've retained the level of bone density I have, or that the calcium Vitamin D supplement & diet has helped, who knows but as said my recent HbA1c came back normal.

    I hope you're able to keep your diabetes well controlled. It's another thing that's just not needed when trying to keep RD controlled.

  • That's what I thought too, in a way it was really just bad luck. I know lots of people taking quite large doses of steroids and none of them have diabetes so I think it was just me, if anyone had mentioned the connection I would have said I was on that study but it just never came up and I had no idea.

    As it was I bought my own blood sugar meter and eliminated everything that spiked my blood sugar - even so called healthy foods did that - and totally altered my diet and stepped up my exercise and when I was tested after a year of 'diet and exercise' my HbA1c was better than it has ever been so I'm careful to avoid the foods that increase my blood sugar and hopefully I'll be ok now.

    Have to say it was wonderful to be so pain free. Normally you don't notice when something is missung but every day when I got out of bed I enjoyed the feeling of not being in pain. It was amazing after always feeling my muscles hurting so much and being so stiff and creaky. I loved feeling 'normal'. I'm a bit freakier now but nothing like I was before seeing the rheumy.

  • The prednisone actually made me able to walk, so I was thankful for it. It just would have been nice to know about the possibility of diabetes, that is why I wanted to let people on this site know in case they hadn't been told. I now check into every medication I am taking. So far my diabetes is under control, and I will keep working on it :) The people on this site are so great, thank you for all your experiences. Hope everyone has a pain free day.

  • I'm not going to be much help, but I refuse to take corticoids such as prednisone because of the awful effects it can have on the body. What other meds are you on, are your painkillers strong enough?

  • I am on plaquenil, and do infusions of remicade every 6 weeks. They are thinking of upping my dose of remicade. I guess it is all a trial and error thing. I am still fighting to stay off of the prednisone, hopefully it will get easier. Thank you

  • I was on pred for around a year. Was up as high as 60mg per day and weaned myself off over a long time.

    I ended by breaking the 5mg in half, so 2.5mg per day, then had the doc prescribe the 1 mg pred. Was easier to wean off that way. Started as 1mg per day, then 1mg every other day for about a week each. Then said the hell with it and stopped. Be prepared and warn ypur family that you WILL be irritable and somtime irrational. It happens with that old wonder drug.

    I can speak from experience. And my wife will attest as well that I was an arsehole (sorry for the language) while coming off that. Been off it for over a year and half now and have a much nicer disposition.

    Have fun!!!


  • Thanks, so far (thank God) I am only experiencing pain but I am going to try and stay off of it. Thank you

  • I have been through hell trying to get off prednisone, I am currently on 7mg daily and I am in awful pain yes by dropping from 8mg to 7mg made a huge difference to my pain , and the withdrawal is as bad as the pain I just can't stop crying and feel so rubbish all the time , I am seeing the rheumatologist tomorrow and hoping to get some sort of answer as to what medication I will start next , stick with the drop in steroids because they do terrible things to your body , good luck,

  • Thank you, I'm sorry you are in so much pain. I'm trying and hoping the pain eases off. It was nice to know I am not crazy, and that a low dose can have so much effect. Thank you, good luck to you also.

  • How ironic I was fuming yesterday regarding tapering. Been on press 15 months upto 30mg now on 4mg since Nov. I tried myself to get down to 2mg over 2 months. I was so stiff and in pain. Went back to 4 and was fine. After a good Consultation on Friday I am going to taper off. The Dr said when you have been on them a long time it has to be done slowly and advised to take extra pain killers because you will need them and your joints will start to flare but should settle. I went away with a 3 month script for enteric coated 1mg. The non coated was making me sick with stomach pains it was bad. Pharmacy said to go back Monday. Went yesterday and they cannot get them from the manufacturer so go round to OPD to see what they say. Asked at reception and one of the Nurses was there. Now this is where I get angry. Explained situation. She said just take the non coated you will be fine. I said NO it had got to the stage I was having to carry a sick bag with me because of the vomiting. Now she said well take 2.5 and one of your 1mg coated for a week then 2.5 one day zero the next for 2 weeks then stop. !!. I did say 1 have no 2.5 so she said see your G.p secondly the Dr I saw wanted to to reduce over 3 month. 3 Going on holiday on Sat, I have not felt this well for nearly 2 years and do not want to have problems on holiday.

    Her reply was well there is nothing we can do. I was getting angry so I just said right thanks and left. I was so annoyed may be me just being over sensitive I do not know. Today I have to now try to get yet another G.p appointment .

    Sorry to go on with my problems needed to get it off my chest.

    You have some good replies and all say the same it is very hard and needs to be done slowly with painkillers.

    Good luck with it and I do hope you get on OK take care.

  • You know I have always said, I wish people could experience our pain for 1 second because they would know we are not just complaining but really need help. Good luck to you, I appreciate everyones reply so much, it really helps.

  • All the best to you too. Keep fighting and the faith xx

  • Thank you so much :)

  • I think the trouble is you don't always look like you're ill. If you have a broken leg it's visible. Our pain is inside.

  • I've only been on Orencia for 9 weeks and, due to a flare, doc put me on prednisone. At first it was 10 and now 5. I noticed when I totally get off it the pain level goes up. Doc suggested I may be a patient that will be on 5 mg daily in addition to Orencia and said some are f us do need that.

  • I was wondering about that, thanks. My GP and rheumatologist both want me off of it, I guess because of the steroid induced diabetes. I will have to ask them.

  • I have been on prednisone several times and have weaned off of it successfully several times. I'm currently in the process of weaning off of it again and had been tapering slowly but not slowly enough so I'm back up to 10 and trying again. It's such a dual edged sword. A wonder drug in some ways and a monster in others. I've known people who can taper off much more quickly than I can. I also know people who are pretty much stuck at a very low dose for life. Weaning always causes me to feel badly. When on prednisone for a length of time your adrenal glands that normally produce the hormone quit producing it making you dependent and as you wean off, your adrenals wake and start to begin to produce the hormone again. This process makes most people feel pretty badly. My mother lost her vision due to long term use of steroids even though it was a very small dose. I'm doing everything in my power to get off of it.

    Best of luck-


  • I've never been able to get lower than 5mgs daily started on 30mg just over 31years ago so I'm please I got this far I have tried to reduce the pred more but with no success , so hopefully if you can survive a bit longer it'll be one for us and not the pharmacist so good luck 😉

  • I have been on prednisolone for over 30 years and have tried umpteen times to come off, under medical supervision I hasten to add! No joy! I am only on 5mg but my body just can't do without it, I always flare up so my Rheumatologist and I have decided to leave well alone. I don't suffer any obvious side effects and the benefits greatly outweigh any negatives.

    Good luck!

    Nana Fifi xx

    I also have regular DEXA scans and my bone density is good- better than a lot of women my age who have never been on steroids!

  • Like any medication doctors prefer to try a time limited approach, not very helpful for a long term, permanent and getting worse condition. My GP wanted me to lower my Ibuprofen from 3 to twice daily, I couldn't deal with the additional complications and in any event found that three a day didn't handle overnight and getting out of bed in the morning which could take up to 3 hours. I got him to prescribe Naproxen again as it is a delayed release and although my dose is 500mg twice daily, 250mg just didn't solve it, I can now move in the morning and 3 hours to get up are long gone. Like any medication there are side effects but I am aware of them, keep watch for any signs and have a regular blood test to double check.

    It is good that you can manage on the lower dose, I wish I could but Fibro requires attention, given time you might even be able to go lower, but only if you want to and can manage.

You may also like...