Good Morning, I have started the tapering of Prednisolone, I ve been on the maintenance dose of 5 mg for over 20+ years, my Rheumatologist has told me to come off this drug, so I m giving it a go. I would appreciate any support along the way please?
Tapering off Prednisolone 5 mg: Good Morning, I have... - NRAS
Tapering off Prednisolone 5 mg
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Sunflower1921
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My understanding is to do it very very slowly.
If you dont mind me asking what sort of age are you and did doc give you a reason? I ask because ive been put on maintence of 5mg for a yearish , its really helping but didnt know you could stay on it that long. Im 60.
Im sure others on here know the answer more than me regarding how to taper off.
I look forward to seeing replies cos I'm really struggling Down to 7 but going bk up was on 10 really lot of swelling pain an fatigue at moment just lost my mojo it's horrible when
I wake up can barely get out of bed goin for dexta scan as I have ostro as well ra
Hi my dr said that my bones will break if I stay on it in 5 years Ill be in a wheelchair, so hence why I m coming off it. I have rheumatoid arthritis and lupus. Im 62 yrs old. take care x
I forgot to mention Prednisolone has cause Osteoporis too, hence the bone issues. I cant take the drug for that either as Im so allergic to drugs.
Hi Sunflower. I have been on pred for 33 years and now starting to worry about my chronic back pain. I also have OP, an X-ray on my spine in February didn't show any fracture but am waiting for an MRI. I will be bringing this up at my next Rheumy appointment in December. I do wish you luck, take it slowly X.
I sympathise with you, I ve got pain in my spine pain too, and the rheumy said I had got Osteporris from taking prednisolone,
It's a worry. I did decide many years ago what keeps me well I will take. I started with osteoporosis 14 years ago, it's in both hips and tops of the femur, not my spine. My last Dexa scan 2 years showed its still the same. I was unable to have my Zolendrenic injection this August due to a leg ulcer. I have a curvature of the spine and other problems, this all started up in my back 2 1/2 years ago so worth considering is it the steroids. I also have a autoimmune thyroid conditions so worry if my adrenals will take stopping them. All the best, keep posting .x
Thank you for sharing your thought s too, its a difficult situation we are both in, but I m going to try the tapering and see how far I get, hoping I can do it, but Ill need a replacement drug to help suppress my Rheumatoid arthritis and Lupus. I ve been getting heart burn also from prednisolone, so thats made me want to do it too. Thank you for your support. xx
I was originally dx with Lupus 33 years ago it changed over to sero-negative erosive RD. The med I was put on for that was Azathioprine. Wasn't really controlled till I went on Humira 10 years ago. Not sure if Humira is ok for lupus though. I hope they keep you closely monitored. X
• in reply toSunflower1921
If you have pain in your spine, you might have a fracture. Osteoporosis itself doesn't cause pain. Only when you get a fracture does it hurt. I've had 4 spinal fractures - it was agony.
Sunflower1921• in reply to
Hi does it heal eventually?
Thank you for sharing. You have helped me.
Gosh thats motivation to come off them. I really wish you all tbe very best. Take care. Let us know how it goes.
Hi Thanks for your replies the plan is to take 5 mg alternate days for a month then every 3rd day for a month then stop. Will let you know how I go on.
You can get pred in 1mg if you find the above too hard. X
Hi, That s a good idea, I could do it very slowly, by 5 mg alternative days for a month, then perhaps 4mg alternative days for a month and so on, what you think? thanks Shirley
I was trying to get off 5 mgs a day which I had been on since January. My rheumatologist advised 5 mgs a day for 1 month, then 4 mgs for 1 month and so on.
I was however, taking 5 mgs for 2 weeks, then 4 and a half for 2 weeks and so on. Recently I've had to go back to 7 mgs a day because of a very sore foot.
I wish you well.
My understanding is that would be more successfull. I have read it can take many months to come off and if its too quick then it can put you back to square one. All the best.
You can also get 2.5 mg tabs. By using a combination of them and 1 mgs you can drop by 0.5 mgs a week until you get to 2 mgs.
Hi that’s what I’ve to do too. Down one mg at a time every month. M x
Have you talked to your doc about alternate days? The alternate day regime means that you take dubble dose one day, the next nothing and so on. On this regieme you give your adrenals a chance to recover. Moving to the alternate day regieme can be hard though and should be done gradually meaning that you in your case start by taking 7,5mg one day, next day 2,5mg for two weeks then, 9mg and 1,5mg for two weeks and after this you can try 10mg one day the following non. If it's ok then you stay here a month whereafter you can slowly start reducing the pred day. This regieme is a step in the right direction and gives you less side effects. I encourage you to talk to your doctor about trying this regieme. Good luck. Simba
it does nt matter time wise as long as I reduce the dose age.
It's very difficult to judge what's best for you and how much you rely on it for pain relief. I did try a few years back and with hindsight I wish I had persevered. It might be best to see how you go. I do think the longer you take the better the result. X
Thanks that s good advice. x
Hi Sunflower,
I found coming off the last 5mg really hard.
As everyone suggests, long and slow is best. It helps to have packets of 2.5mg and 1mg and come down by .5mg at a time using a combination of the two doses - so 4.5, 4, 3.5, 3 etc until you're down to one.
Even at that point, stopping the last 1mg would trigger a return of symptoms, so I would take 1mg every other day for a week or so, then once every 3-4 days. It's a bit like clutch control in a car - you'll find your own 'bite' point.
I found dropping 1mg at a time was too drastic and progress was two steps forward and one step back. I think when you're body's become used to a dose, however small, for a long time, it doesn't like being denied!
Good luck X
I took them for 30 months and failed to come off th first attempt. I spoke to a doc in America who said its not the amount of reduction, but the %. So reducing dose by 50% is potentially too much. I took that on board and that time, I was able to stop taking it. I had 1mg dose and alternated right to the end. Good luck!
I wasn’t on steroids for very long, perhaps 4mths but have just come off then very slowly by alternating days with 5mg for a few wks. As I tapered the pain returned (obvs) so I swapped pred for codeine and then tapered off codeine. I now only take painkillers if I really need to.
It may be 6 if one. Half a dozen of another but I know steroids made me anxious and is not good on the old bones after a while.
Good luck 😉
Hi, I'm in the same situation but I've just started on leflunomide so they are waiting a few weeks, but because I've been on pred about 30 years (I was taking only 5mg a week spread out in 2dosesfor years) they want me to have a test to see if I can make enough steroid of my own, if not I will have to stay on it, but that will prob be in a few weeks, best wishes to you, I know we should be better off without it, hopefully I will be able to aswell 😊👍👈
hi Its a difficult journey coming off this drugs, I was very scared with the rapid beat beat, lasting 20 mins, I m having a ecg today to rule any heart issues. I am on 4 mg daily for 2 weeks, then reduce to 3 mg, have to see how I go, any reduction is good with these drugs. Hope you are coping. x
Hi sunflower, hope your doing OK I'm taking 5mg daily till I have that test sorry can't remember what it's called, at the moment feeling good and inflammation coming down on leflunomide best wishes
Sarah
HI Sunflower I am trying to get down from 5. Got to 3 but pains back so back up to 5 then quickly back to 4 . Going to try MissMinto's method of dropping 0.5 mg at a time.
It is certainly essential to reduce the dose very slowly. I would reduce the 5mg daily by 1mg a week and stop reducing if any symptoms get worse. Certainly prednisolone can affect your bones and you should always take a calcium/vitamin D combination whilst taking it. I am 85 and have taken between 2 and 5 mg of prednisolone for many years without any obvious problem, but I do take calcium/vitD daily
Hi Robert, Thats good advice, Ill see how I go. its hard.The 5mg prednisolone has a gastric coating, the 1 mg dont, just hoping I can tolerate them. I feel sickly already having 2 days. I cant take the ad cal as they make me ill, so having more milk, yogurts, etc to try and help me. What dose are you on now? and how long you been on them? x
I am on 4 mg prednisolone daily at present and keep trying to reduce but each time I do I get a minor flare up. I have a sneaking feeling I need 5 or even 6 or 7 mg daily to really keep symptom free, but try to keep as low as I can. I also take oral methotrexate, meloxicam(a NSAID) and suphasalazine and have done for 10s of years, having had Sjogrens for over 30 years now. I stopped taking hydroxychloroquine a couple of months ago. There you have my drugs history now!
Hi Robert! How did you feel you taking
hydroxychloroquine. I'm on the second day and I'm a hot mess. Lol
Sorry only just seen your post, it went to spam. I did not feel any worse or better on hydroxychloroquine, but then we all react differently!
I would agree with the post suggesting using a combination of 2.5mg tablets and 1mg tablets to help you to reduce by 0.5mg at a time. Whenever I have done it from 5mg, I do it by 0.5mg every four weeks. But it has always been the last 1mg that has been the problem! The 1mg tablet is too small to cut with one of those pill cutters and I found alternate days just doesn't work well for me.
Hi Sunflower
I was in exactly the same position as you a few years ago now, having been on predisolone for 33 years! I have the same diagnosis too - overlap of lupus and RA. I reduced by .5of a mg over the course of a very long time and was finally able to be off the meds! I have been left with severe back ache for which there is now a suggestion of fusing two of my vetebrae - thanks to the steroids I suffered multiple fractures in both feet, my tibia as well as my femur and ended up having a total femoral replacement. The side effects and lasting damage that I am left with far outweigh any benefit I had from prednisolone and I am super happy to be free of them.
I wish you the very best of luck with your journey - remember low and slowly does it!
Thank you for your support, u do sound like me, I ve in touch with consultant today so hoping to see him in November, I've re started ad cal to assist my bones calcium. Xx
Thanks for your support, its hard to come off Prednisolone, but I m giving it my best shot, as I dont want to be in a wheelchair in 3 years down the line, also I think Prednisolone masks the issues I have, Im beginning to feel achy already and pain in my right knee. hope I can do it. Thanks for helping me. xxx
You are very welcome. This is a tough road to navigate and it really does help having other people who are in a similar situation to use as sounding boards! Take it super slowly and don't put any time pressure on yourself in trying to taper off the prednisolone. You'll be relieved when you get there for sure!
Be kind to yourself! Always!
hi again
I struggled with the dose of 5 mg and miss a day, I had a very rapid heart beat, so I went to see my gp and he s given me a plan to do it much slower, so thankful to him and all your support, its a hard journey coming off these drugs. How are you getting on? x
I’m sending support and love. I agree. Take it slow. Don’t put pressure on yourself and keep your schedule open to have time to adjust. ❤️
Thank you for your greetings, Ill give it my best shot. Ill let you know how it goes. xx
Hi, Im just 1 year into this RA malarkey and am now down to 5mg of pred a day. Alongside a raft of other drugs obvs! I have had to drop 1mg in the dose every month due to flare. My rheumy explained that dropping the dose once you are below 7.5mg is really hard and needs to be done mega slowly. I am really keen to come off the steroids as everyone seems to be because of the side effects but my rheumy reassured me that anything below 7.5 is not much more than the body would produce naturally anyway. Its a minefield !!!
Hi, I m 3 weeks into tapering off prednisone, I tried 5mg one day and none the next for 11 days then I had huge issues with a thumping fast heart beat and heart burn. I ended up seeing gp and he suggested to take 4mg daily, he gave me uncoated prednisone a d now 3 weeks of taking these it's caused a stomach lining abrasion, so now got coated prednisone just used today so hoping I recover or another trip to gp.
Hi,
I was on prednisalone for 3 years. I tapered off it from 10mg. I reduced the dose by a mg each month so it was a slow process. Annoyingly a month after I came off them completely I flared, so back on 5mg. I’m looking forward to getting off them again! Good luck.
hi Thank you for all your support. I m down to 3 mg of prednisolone, Im unsure if I will get off them as Im feeling alot of pain in my feet, hands and wrists, this must have been masked by the drug. now less of it its showing up my pain. I don t want to go on another drug, so I ll see how I go on 3 mg.
Hi I ve since seen the dr last week, she suggests I stay on 3 mg until I see a new rheumatologist nearer to home soon. Also need to have a blood test to check that I can live without prednisolone, as Ive been on it a long time. Will let you know the outcome, thanks for all your support x
• in reply toSunflower1921
Hi Sunflower, may I ask what blood test they do to check you can live without pred please? I’ve recently come off completely after a long time and I feel pretty unwell all the time ( can’t really put my finger on it but not RA unwell) both my GP and rheumy knew I was tapering but they never suggested any checks. I do have bimonthly bloods for mtx but I don’t know if that would show up any problems. Sorry, I’m waffling on, I should talk to my GP really.
Sunflower1921• in reply to
Hi Kitty,
It sounds like you need to have your adrenal glands blood test to see if they are working again after long term Prednisolone. there are 2 tests one is called ACTH which is done as a out patient, and the other is a blood test at your doctors surgery.they check to see if I am producing cortisol so I can live without the prednisolone. when your body relies on this drug, its hard for the adrenal glands to start working again. the symptoms of withdrawal can include body aches, weakness, extreme fatigue, joint pain, dizziness, mood swings, loss of appetite,nausea, those are a few. let me know how you go Kitty. xx
• in reply toSunflower1921
Thank you Sunflower, I have seen my gp a few times recently but it’s been put down to recovering from a virus and being on and off meds but I will keep an eye on how I am and speak to the GP again.
Hi kitty
I think most drugs cause side effects, and stopping prednisone is nt good when our bodies are used to receiving it. The adrenal glands are so important as they make natural cortisol and if they don't work again after prednisone you will get withdrawal symptoms, one of them is blue lines on your stomach. I'm having blood test next week it will be interesting to see if mine are working again. X
I've gone from 30 to 5mcg in 4 months but to be honest from 30 to 20 was hell then 20 to 15 very tired and dreadful time taken to A&E and advised increase back to 20 every other day. Then down to 10 and 5 every other day now 5 with no problems but been told its now 4 for a month then 3for a month then 2 then 1 for the last two months. The drug from hell and I'll be glad to see the back of it. My mum had Oestoporosis and they give me Ad Cal to stop that. Ad cal tastes nice actually lol x
I've had no blue lines on the tum either.
Hi I have been taking this prednisone drug for 20 plus years, that's why the concern of the adrenal glands not working hence the blood test next week. Its hard to taper the drugs too. As prednisone masks all the pain. Now its returning. X
I've only been on it for a few months but don't like it, it seems at first to be great but really its not easy to come off.
Hi it's very hard to come off this drug, but what drugs is there to replace it without any side effects, there's none.
I know, and nearly all drugs have side effects. Its Omeprazole nearly killed me and done my kidneys in by destroying 25% and they only work at 22% which is life changing. Hence the steriod to try to gst them kick started but sadly it did'nt work.
Hi I also have been on so called stomach protectors for years 80mg daily plus all the meds for reflux they actually gave me heart burn and UTI s and stomach pain, I stopped them with the support of my GP, since then I've healed my gut myself , by stopping all the irritants and then reintroducingc some of them , it's works. I drink plenty of water daily too.
I've never had any sort of tummy problems, they gave me this to protect from LEF.I've never had indigestion so what a joke protected the tum but z`pped the kidneys. Never mind a chance in millions but vital to get those regular blood tests done as it was silent.
so sorry for your pain, hope things improve for you xx
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