I've been in touch with the hospital about starting to taper the oral steroids I've been taking for the last few months and they have basically left it to me!
I've been managing on 15mg per day and tried to cut down last week to 10mg but the pain was too much, I've injected again with Sarilumab this week so thought I would give it another go. I have felt really odd on these steroids not myself at all , brain fog, water retention, low mood and just bluhhhh but they have helped me to move. Today I have felt even odder after the taper very sluggish and lethargic , could this be down to the tapering? I'm wondering if I should go down to 12.5mg rather than 10mg?
I will contact the Hospital again next week but they can take ages to reply , so just need some advice from anyone else who has tapered, I do not want to be on these things for any longer than I need to but know I should listen to my body, it's the pain in left arm/elbow which is the worse.
Many Thanks x
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I’ve been on steroids for many years, and am now steroid dependent, I’ve been up as high as 20mg a day for weeks, and 40mg as part of my rescue pack during an infection. I can’t go lower than 7.5mg. I cut my steroids down very slowly, as advised my rheumatologist, at between 1mg to 2.5mg a week depending on the size of my tablets.
Thank you...I'm just wondering if go try 12.5 and see if that makes me feel better rather than straight down to 10 mg like the hospital said.. I wish i never had started the things tbh, no one explained this when they prescribed them. X
When I was first started on steroids many years ago, no one explained about the side effects, or how difficult it is to stop them when you’ve been on them a while. On the plus side, they enabled me to do my job, and also for lungs to work properly.
Yes, this is very true I still probably wouldn't not have been able to move my arms etc if I had not had them and for that I'm thankful..but I just wish there was more advice given on tapering them by my Rheumatolgy team.
Hi I know how difficult it is to reduce the steroids I ve been on the last 20 years. I decided to reduce them as I developed osteoporosis and I needed a new knee but they can't operate as my bones are to thin.so I tapered my prednisolone from 20 mg to 2.5 which I'm still on for life. The way to do it , is start off by writing down the high dose U are on, then each month reduce by 1 mg , once U are down to 5 mg see your Dr and see if your maintenance dose has been achieved or if you can taper further. I know it takes months but it's a safer way for your body to adapt. Hope this helps but keep a record of it.i showed my Dr how I did it and he said that's perfect.let me know how you get on and any questions I'll try and help you. X
I can only reply for my own circumstance on tapering but anyone who has been on prednisolone tablets for more than a month needs to be careful about how fast they reduce them.
I’ve been on prednisolone on (usually) 7.5 mgs daily for 34 years and now and again I have to increase my dose for various reasons. I only ever come back down by 1 mg a month as I get weak, painful, brain fogged, fatigued and unsteady if I reduce faster. I have been reducing lately from a six month higher dose at 10mgs and have got to 8 over the past two months. I have noticed the difference in how I feel and have not overdone it in terms of my usual bull in a china shop approach to all things physical like gardening. Well, actually I have which is why my back hurts……….🥴🙄
So my advice, for what it’s worth, is to go much more slowly from 15 to 10 and even if you’re impatient to get off them, you’ll be better off in the long run if you take it nice and easy.
It’s poor that the rheumatology team have left you to get on with it by yourself. These are very powerful drugs and not to be messed with so ifyou do manage to get in touch with them get some advice pronto.
If you’ve been taking g or r several months, you need to take it slow. Your adrenals will have shut down, from producing their own cortisol because it recognises your getting enough in tablet form. So the adrenals need nudging awake. I’d definitely do the 12.5mg rather than 10mg. You will get withdrawal symptoms, which can be rough but will subside. Never taoer further till you’ve stabilised on the new dose. It needs to be taken slowly, as they don’t always want to wake up. I’m on lifelong steroids as my adrenals atrophied, leaning me with severe adrenal insufficiency, not fun. I had to taper very slowly like 1mg a month once I got to 10mg. I cope nowadays on 4mg
Thank you for your good advice , I'm going to try 12.5 mg, I have been on them for 2 months now. I'm glad you can cope on 4mg after a not so fun experience for you, why don't they explain any of this when they are prescribed!
I agree. Your adrenals switch off after just 3 weeks, so should always taper slowly. You will get there. Don’t continue tapering if you get nausea, stomach pains, headache etc. usually we would recommend returning to dose where you didn’t have these symptoms. It’s know as the HPA axis, if your looking for info on it 🤗
When I was on them I was told by my rheumy to taper down from 10 mg by 1 mg per month and no more. There was a little bit of reaction at the start of each month but it wasn't too bad.
Thank you for your reply! Do you mind me asking how long you were on them? I managed to get from 20mg to 15mg but I'm thinking this taper may be too much. They wanted me to take 30mg a day at the start but I could not even tolerate the 20mg that well it gave me awful low mood and upset stomach. Awful things but they do help.!
I was unsure so just looked up my paperwork. It wasn't 10 mg it was 7.5 mg and I was on them for nine months. I remember well though that my rheumy was very strict about not reducing more than 1 mg per month. I agree with what you say that they do help but they can cause such misery too. Good luck with your tapering, I wish you well. x
I took prednisone for three months when I was first diagnosed in 2015 before I started hydroxy and with an overlap when I started taking it. I was offered an injection but chose to take tablets. It was all really strictly controlled though.
I started on 15mg for the first week then I reduced by 2.5mg every two weeks so I went 15, 12.5, 10, 7.5, 5, 2.5 mg and by that time I had started my hydroxychloroquine and worked through my supply of tablets prednisone tablets and that was it.
Unfortunately I ended up with steroid induced T2 diabetes which was a very unwelcome side effect. I felt very well on the steroids - like Superwoman in fact - but the T2 has put me right off taking steroids and I would be very wary of taking them again especially when I hear of those of you who are stuck on them and trying to get off.
Thank you for your reply! Sorry to read about your T2 diagnosis I didn't even know that was a possibility, I was very wary of taken them but was at the point I would have taken anything..but I could not manage the 30mg they intially prescribed, I've not felt right since taking them and I've certainly not had any steroid zoomies but they have helped with the pain. My Husband had a short course recently for a chest infection....he managed about 3 days and now has a flag to say he can't have them anymore . That sounds like a very sensible plan taper plan you had. X
Yes, I’ve 9nly just realised how lucky I was that my steroids were so tightly controlled.
Honestly I felt fantastic - no roid rage, no weight gain I just loads of energy and pain free, I felt like a new woman. The T2D was quite a shock. Fortunately I was taking part in a medical trial and they did a lot of blood tests which was how it was picked up really early. I’d never heard of that either but when I got the call to see the nurse I looked her up and saw she was the diabetes nurse then I googled T2D and steroids and realised exactly why I had been sent for. I’ve got osteoporosis now so that’s another reason to avoid steroids.
Good luck, hopefully you can get things sorted soon.
I am tapering and I prefer one day 5mg then next day 2.5mg 3rd day 5mg etc. I am doing this for 2 weeks . It is a work with your body thing my GP few years ago just said sort tapering yourself you know how you feel. So up and down I go 🥰
Thanks Deeb, that sounds sensible to , so 5mg one day then 2.5 the next, what will you do after the two weeks? I hope you manage to taper successfully x
So I am going to try 2 days of 2.5 then 1 day 5mg then repeat and do this for 2 weeks.
I am trying to see if I can get to 2.5mg as my low dose as Gp said he doubts I will ever be off them so trying to get the dose as low as possible but still be able to move.
I had very high dose for a few months for an AKI not RA and was told for very slowly is the only way. I came off 160 mcg to 0 over a year or just over. It was hard so don’t take it as a failure if you need to go up a bit then down again. And I had moon face, shakes and shivers etc. But no choice so I now avoid them, remember they are addictive so it’s never easy even in smaller doses. Just take it slowly and even cut in half so you can go down in small steps rather than a jump. X
Thank you for your great advice! ❤️ Good to hear that your successfully tapered off them as well. I didn't realise they were addictive I was in such a low place in Feb/March I would have taken anything offered to stop the pain, I just wish they had come with more advice from the hospital. I've emailed the Hospital and will contact the GP on Monday and so grateful for all the helpful replies I've had to my post too. X
I had a lot of advice but was in kidney failure so it was very serious to control well. They can cause fractures as well as other awful conditions so if it seems hard it can be a good thing to remember. I don’t know what he incidence of fractures are but my Nephrologist did tell me hat was why it was important to only take what was needed when needed. And to get off them but slowly.
Hi 3LB, sorry to hear this and yes they can mess with your body and mood, most definitely, Can your pharmacist advise or maybe a GP could assist over the phone? I’m shocked at your rheumy department as mine seemed over vigilant on my 9 month withdrawal from oral Pred. I wasn’t really on a high dose either but got stuck at 5mgs then took another 7 months to taper right off. Hope you can get some professional advice. 🩷
Thank NK, Yes I need another prescription so I will be contacting them again on Monday, I've contacted them several times about the way they were making me feel and just kept getting told to bear with it and that my low heart rate etc was nothing to do with the steroids as they would make the heart race rather than beat slower. I've just felt so slow, sluggish, and out of sorts since I've been on them but they've helped with the pain, they were only supposed to be short term for 3 weeks but now I'm 2 months in, I can't face feeling like this for ever. My Rheumy Dept are very bad and I have no good words to say about them, I know they're incredibly busy and sadly that shows. Hope you are doing well 🩷 I've always had a good result with a steroid injection and have never had any really bad effects.
I agree with NK you really need advice from your Rheumy team on how best to taper. From 15 to 10 is a big drop and I'm not surprised you have felt unwell so go back up to 12.5 and see if you feel better. If not, go back up to 15mg and await advice from your team. For the last 10 mg I was only allowed to drop 1 mg per month. Getting below 5mg took me a long time as I had to alternate doses over several days in a similar way to that Deeb suggests.
hiya. I’m back! I was dtech but because I haven’t been on here for ages they kicked me off😂. So had to re register. And first post I see s you😁. I’m on steroids too due to bad hip problem. Long story, failed by nhs so had to go private to get sorted. Anyway, I’ve had an ultrasound hip injection but also a month of oral steroids. But these are on a reduced amount each week until they’ve gone. Hopefully hip will be ok then.
Helloooo Dtech...lovely to hear from you 😀, I hadn't been on a for a while as had been fairly well controlled until earlier this year when I did a post and got some great support, I did wonder where you had gone!
Sorry to read your having issues with your Hip and hope the steroids are helping you? They've been good for me with the pain but I've been like a zombie on them not at all clear headed...still need them while I wait for new meds to kick in but hoping I can taper off them!
sounds like we’ve both been same🙄. That injection sure worked 🤞. Fairly pain free and walking again but taking it slowly. Even got a mobility scooter to get round on so I could take my dog out. Those oral steroids worked fast too before the jab. But yes, weird side effects 🤪. So onwards and upwards and hope you get sorted. Xx
It does for sure..have to make the most of the good times! Glad you're doing reasonably well and good you can get out with the dog, I found that so hard before the steroids not being able to excercise or drive my car, trying to build my stamina back up after a very difficult few months. Good luck, hope you're sticking around?! Xx
It took me three attempts after taking them for three years. Following the NHS advice I failed twice. Then an American doc online said to me it’s not about the milligram reduction, it’s about the percentage. For example, 10 mg a day, reduce by 5% so half a tablet for a week and continue that way. I did end up slicing tablets into pieces, but it was slow, but worked and I’ve never taken any since (except for a flare briefly).
Thank you for your advice and glad that you managed to get off them. I will be slicing up my tablets too, I was very naive when I started taking them and was desperate, I will be wary of them in the future but if needs must I will take them but I will be more clued up. X
I've been on prednisolone for over 4 years starting at 60mg daily. I went on a tapering plan reducing by 5mg every 2 months. When I hit 10mg, I was reducing by 1 mg every 3 months. Currently at 2mg. I had rebound pain and had to go up temporarily last year. I've had all the side effects of reducing but I persevered and managed to come out on the other side of it. My point is tapering plan works for 1 person may not for another. You should really closely monitor how you are feeling and let your team know. It's very poor that they've not given you a plan to work with. I hope you are one of the lucky ones who can be free of the devil's tic tac.
Thank you 😀 I do too hope I can. I hope your tapering plan is successful too, I have emailed the hospital for a taper plan (again) today. I'm hoping my new medication will kick in at some point too as some of the side effects could be tied in with that. X
I started prednisole steroids around 4 weeks ago and they made me hyper and insomniac but weirdly clear thinking and productive. Tapering now with clear instructions on dosage, so I expect to get back to my usual level of brain fog! I'm surprised your rheumatologist hasn't given clear instructions about dosage/tapering. Yes do get in touch with them. I don't think dosage is a precise science because we're all different but I hope you get something that works for you.
Thank you! I think you're right from what I've been reading, you have to find what works for you. Do you mind me asking what doseage you were on when you started your taper? My Rheumatologist wanted me to taper by 5mg a day for a week and so on until I had stopped. I've been in a fog since taking them with no energy and a sluggish horrible feeling. Good luck with your taper. X
Started on 20mg, which was 4 pills a day with meals, tapering over 8 weeks down to zero with 5mg jumps. Currently on 10mg and feeling OK. I was given a weekly chart with exact dosages and have to tick when taken. All very strictly controlled. Its just to nuke the symptoms prior to starting Methotrexate.
10 to 15 is a big jump. Try 12.5, but you will need to stay on that for 2-3 weeks before going down again. Alternatively you could cut by 1mg every 2-3 weeks. Slowly is the key. Good luck
Hi, I took all of lock down to get off 20mg of prednisone. It's hard you just have to go very slowly, if it was to much I would do one day say for example 15mg and they the next go down to 14mg , if took me a month at a time to get down 1mg at a time. Sometimes longer as I got stuck some times thats when I did every other day. Good luck, take care and stay safe.
Thank you 😀 and I'm glad you got off them were you on them for long? If slow and steady works then that's the main thing isn't? I just wish they had explained this to me..rather than the big 5mg jump a day which made me feel very unwell last week. Good luck to you too. Xx
Yes I was on them for a few years, 60mg at the highest , took a long time to get off all together, keep going just listen to your body, one day up next down. Take care and stay safe
Hi, I took all of lock down to get off 20mg of prednisone. It's hard you just have to go very slowly, if it was to much I would do one day say for example 15mg and they the next go down to 14mg , if took me a month at a time to get down 1mg at a time. Sometimes longer as I got stuck some times thats when I did every other day. Good luck, take care and stay safe.
If it’s any help (I don’t know if tiny dose tablets are available now) someone I know who’s been on them for decades advised years ago to shave bits off the tablets to reduce the dose as gradually as possible.
You can get 1mg prednisolone tablets which are really helpful for taking smaller steps down - much better than the 5/2.5mg tablets. That definitely helps to minimise symptoms as the taper progresses.
Yes, you can definitely get 1mg tablets as I use them daily. (Been on pred 31 years). I've never managed to get the 1mg as enteric coated tablets like the 5mg and 2.5mg though. Don't know if that means they don't exist, or just harder to source! Good luck, I hope you manage it.
You can get both 1mg and 2.5mg uncoated prednisolone. I get both to help adjust my dose for my adrenal insufficiency. They are a little more ecp, so you might meet some resistance
Coated, don’t get absorbed till they reach the small bowel, so can reduce the risk of stomach problems, which tend to be from the uncoated which dissolve in the stomach. Coated take 5hrs to reach their peak as opposed to 2hrs for uncoated, so you feel the benefit quicker. Coated are unsuitable for people with adrenal insufficiency.
Hi 3LittleBirds2, firstly I must say I am a big fan of Bob M1arley too. Regarding your steroid reduction, I was on a dose of 10mg for about 2 years and boy did I suffer all the symptoms you mentioned. My wife said they changed my personality. Like you I was determined to get off them. I spoke to my rheumatologist and set me on a program. I reduced my dose by 1mg a month and it took me year to reduce to taking no steroids at all. I have been off them now since the end of February and I can tell you I have got my life back. I do hope this helps. Enjoy your reggae it is great music, it really gives me a lift whenever I play it at home. I have seen many bands over the years. Google Mike Love I think he is great. Incidently I have had the dreaded RA since I was 22 yrs old I am now 77 so hang on in there.
I’ve just started one month of oral steroids due to hip problems. Quite agree with what you’re saying about odd side effects! Luckily my wife is away for a month 😂. So hoping they pass before she gets back! I’m 70. Had RA for about 12 years
Hi Splash! Thank you for your reply..😀 Yes, I'm a massive Bob Marley fan and of reggae music, all music really! Did you go and see the Bob Marley film? I'm so pleased to read that you got off them and slow and steady really seems to be a theme with the replies I've had. My hubby had to take a very short course for a chest infection recently , he completely changed personality and he now has a marker to say he can't have them again. I will look up Mike Love...thank you again for your positive message. Xxx
Good morning 3littleBirds2 hope you are well, further to your steroid reduction I have something to add. When I was doing it if I had pain I managed to handled it with painkillers. There was an instance when I had quite bad pain so I contacted by doctor. He instructed me to take 5 mg for one day 4 the next until I was back to 1, then continue with the original reduction plan and it worked for me. The best thing is stay positive and you will succeed. Now for the nice bit, we missed the Bob Marley film however we can watch it on Prime video. We have seen many reggea bands, The Wailers, Black Uhuru and also the taxi gang tour. My wife and I are festival fans mainly the Cropedy festival which is Fairport Convention gathering in a field in Oxfordshire. I could go on about music for hours but I must get on. Take care and Good Luck with your reduction plan and of course keep on rocking. Splash..
Thank you Splash..I'm tapering from 12.5mg now and using pain killers as needed got the pain. Hoping I can move down to 10mg next week , I've not heard from the hospital yet though but this is not unusual and so be taken geh advice you and others have given me with the taper. I've seen the Wailers too they were fab, You sound very like me with your love for music, my biggest joy is going to see a great band/s with a cold beer..hoping to get back to it very soon! Best wishes and again X
hiya I hope you have managed to find a solution, I’ve been on prednisone 10mg for over three years & the side affects of long term steroid use is not pretty I’ve recently tried to tapper down only by 1mg every 6-8 weeks as advised & I got to week 4 & had to go back up to 10mg I couldn’t function.
I’m waiting to start another new drug & will try to tapper once again but my advice is to go down 1mg every 6-8 weeks you need to be prescribed the 1mg as they only come in 1mg & 5mg. Best of luck x
Thank you for you advice , I really hope that you can taper down as well. Hopefully our new drugs will work so we can get off them! I will ask the GP about some 1mg pills. Good luck! Xx
Hi, I was put on 15mg before having a diagnosis of RA by my doctor. It was supposed to be for diagnostic purposes as it took so long to get a rheumatology appointment. I was then told to stay on 15mg but felt awful, I certainly didn’t feel energised. After 3 months I started to taper ( the pain had eased a bit) dropped to 10mg and really struggled so I went back up for a while and then my doctor said gradually reduce by 1mg a week which is what I did. So all in all I was on them nearly 8 months - never again, I felt very down, angry like someone had taken me over. When you drop even 1mg you will feel it but it will settle, I was just determined to get off them, also maybe alternating the dose as Deeb said for a couple of days might ease the withdrawal. Good luck with whatever you decide.
Thank you so much for your advice. Your story sounds very much like mine, I decided to taper as the pain has eased somewhat and was mainly in left arm, I'm prepared to put up with the side effects if I know my body will adjust and I can get off them, I feel the same as you did, very triggered and not in my body, certainly not full of energy. I wish I had never started them , but I don't want this to put anyone off taking them if needed it's my experience of them, if I get off them and ever have to have them again i will be more clued up. I dropped from 20 mg to 15 mg and it now explains the weepiness and horrible feeling I had , I probably tapered too early from 20mg but was keen to get off them initially prescribed for a month Good Luck to you too and thanks again. Xxx
Very slowly is the answer, it can’t be rushed it took me numerous attempts to taper steroids (25 years use) as I would get them down a bit then have to stay at that dose a while. 5mg drop is too much, I eventually did 1mg a month which was successful. Good luck, you will get there.
That sounds a rather dramatic taper. I have tapered down off them a couple of times but I've always taken it really slowly. The first time was 1mg per two weeks. The latest has been 1mg drop every 2 months but that's under the direction of a consultant at the Royal Free in London.
I’ve tapered from 20mg to 2.5mg over 18months, it’s taken so long because of either a biologic not working or having to stop it due to illness or surgery and having to reply on steroids.
I’m desperate to get off them but can’t seem to get any lower. Good luck
I was on steroids for 2.5 years until we finally landed on a biologic that controls my disease (I can’t tolerate DMARDS, which we learned the hard way). I tapered by 1mg every two weeks from 15mg (took max 20 during flares prior to the biologic). It took a few months but I’ve been off them entirely for 2 years now. It all takes time with RA! Goid luck to you🍀
They are rats for not giving you more info at the start about steroids. You probs need to taper down 1mg at a time and give it a good couple of months between dropping each dose. Apart from the pain, your adrenal glands need time to adjust as you drop it down.
Under 10mg you need to taper more slowly. You need advice about it. Please look it up at least. It’s dangerous to taper too fast but also it increases your success to go low and slow.
I’m sorry you’re having a hard time with the taper. It’s why I call them the devil’s Tic Tac’s. They allow you to move and there is no more discomfort, but, the side effects are also pretty bad. For me it was vanity. On steroids I gain weight and an overall puffiness from water retention I suppose. So I wanted that steroid out of my system. I have heard of some ppl going 2.5 mg at a time. And your taper is usually the new amount every 5-7 days. I did 15 to 10 for 5 days to 5 mg for 5 days then nothing but my bi monthly injection. Humira. Don’t forget it can take 2-6 mos for your other meds to start working. Only you and your labs can really tell for sure if your new meds are doing the job. Good luck!
Thanks for your reply! You're exactly right they allow you to move and for me it was to be able to move my arms also but the side effects have been dire (again not wanting to put anyone off this is my experience) So am I reading that right..you went from 15mg to 10mg over 5 days then from 10-5 mg over 5 days then stopped ? I've tried 10mg again today felt a bit wobbly but got through it, today I will take 15mg again , then try 10mg again on Monday and see how I go, if I'm still wobbly I may try 12.5 but I am determined to get off them but may have to take it easy while I wait for Sarilumab to kick in. First time in 12 years I've had to take them , never needed them while on Rituxumab. Thanks again and best wishes to you xx
If you got through 10 ok, do 10mg again as your day 2. For 5 to 7 days. If you bounce back to 15 every other day you’ll never know if you can make it on 10mgs only. Every 5-7 days you go down by 5. At 10 mg I hear ppl who can’t make the transition from 10 mg to 5 mg will do 5 days at 7.5 mg. I think it’s a mindset a lot of the times. But only you can answer whether you can move down. I’m sorry you don’t have a Dr. following you to give you professional advice. I’m just giving you the advice that my rheumatologist gave to me on how to taper. Good luck!
Thanks. Yes, you're right I got through the side effects on 10mg but not the pain, so have gone back to 15 mg when I try again I think I will do 12.5 mg you're right a good mind set helps as well and I want off them, hopefully new meds will work soon. I was given a 5mg per week taper by the hospital at first but this was when I was only prescribed them for 4 weeks I've now been on them 2 months.
You can do this! And sometimes there are people out there who remain on 5 mg per day for life. I wish you had someone supervising you who is medically trained, but the 5mg every 5 days sounds like the standard care routine. And you need to listen to your body. If reducing by 2.5mg every 5-7 days works for you that’s better than not trying at all. You’ll do fine! 😊
Hi. I have been on steroids for years , they are great when you are in pain ,however , difficult to get off , I inject biological, also had infection and had to stop biological, had steroid injection , which helped a little , had accident fractures too foot and wrist , just had another steroid injection, also was taking 10 mg steroids, now reduced to 6 mg a day ,only reduce them by one a week as they affect your adrenal glands which make you feel tired , I have got to the stage where if I’m in pain I just have to take them , hope you get sorted x
Thanks for your reply! I'm going to try either 2.5 mg per week or alternating days with the Lower dose, I want to get off them but will listen to my body and adjust as needed. , I'm prepared to get through the withdrawal side effects if I can get off them, they have not made me feel like super woman by any means but have helped with my mobility. I have had lots of great advice which I wasn't even aware of until I did this post and I have contacted the hospital as well and hopefully they will get back to me this week. Good luck to you too xx
The OP is correct. I totally forgot Prednisone now comes in 1 mg pills as well so technically you could wean very slowly but your body won’t notice the imperceptible change in dose. Is it possible to ask your GP for a script of 1 mg prednisone? I think you mentioned you weren’t under anyone’s care. So I would try to get in with your Family Doctor and see about that. Just another option. 😊
hi I’ve been on steroids predisone for 5 weeks sadly for allergic reaction to my first injection of eternacept landed me in a@e breathless and chest pain I was on .40 mg first two weeks then told by my gp to taper down by 5mg every 3 days just seen my consultant wants me to stay in 10 mg till have my new treatment in July then take 5mg for a month I like you have had the worst fluid retention constipated and gerd my gp has given me laxido senna lanzaprozole and buscapan it’s the first time I’ve felt very little inflammation and pain but as tapering ra is coming back and yes the brain fog worse but I do feel like bionic woman but it’s so uncomfortable big hugs my feet are the worse in my ra although everywhere it’s an evil but a blessing and the nausea too
Hi, Thanks for your reply and sorry to read that you had a reaction to eternacept that must have been scary for you! Good luck with your tapering and the new meds. Xx
thank you for your post I too trying to wean down steroids and I feel sluggish yes brain fog water retention severe reflux stomach issues they tell you nothing in rheumatology been seeing my doctor more meds to help yesterday left message on helpline will let you know what they say there isn’t much advice about side effects or how you will feel sadly I started them after massive allergic reaction to enbrelended up in a@e they are the first thing to help my joints bad skin reaction to Sarillumab earlier in year big hugs let me know how you go xxxx
Hi Hairbraid, Oh bless you, your symptoms sound just like mine, I've not been myself since I've been on them but they did/have helped with the inflammation. I'm still tapering , I spoke to my Consultant by phone yesterday and he thinks my left elbow issue is mechanical so that is why the steroids are not helping with it but who knows when he has not actually seen it . I'm still on 12.5 but want to get down to 10 mg and then go with a slower taper once I get to 10mg. You are right NOONE tells you about the side effects and they have certainly not made me feel like super woman, I wish I had never had to take them but had no choice I will be very wary of them in the future. I'm sorry to read you've have had reactions to your medication as well, I started Sarilumab 4 weeks ago, I wish you all the very best with it Xx
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