Following my consultation on Wednesday where the consultant has introduced leflunomide into my meds so now on hydroxy, MTX as well as etoricoxib, (along with gabapentin) he prescribed me with 20mg of prednisolone for 2 weeks tapering to 15mg then 10mg so hopefully the leflunomide will have started having some effect, I've only taken prednisolone for 3 days including today and unless I'm just having a good day can already feel some improvement to the pain, guessing it could just be masking it and it does make me wonder if I over exert my elbows / shoulder / hamstring could I unknowingly be making things worse?
OMG Is Prednisolone a wonder drug?: Following my... - NRAS
OMG Is Prednisolone a wonder drug?
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Garnacha
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Steroids are great, they really help the pain dont they. They cut down the inflammation but in effect its masking the RA, but I'll take that. Unless you e bern told you have damage or not to use the joint the normal advice I've been given is rest when you are fatigued, but keep moving! So hopefully then your new drugs will have kicked in. I take mine early as they keep me awake otherwise. Watch out for getting slightly bad tempered or fed up. Also you may gain weight as you feel hungry so try not snack overly.
But otherwise yep for me a miracle drugs in lots of ways for RA . Good luck xx
lol, thank you, will definitely watch out for snacking, I've been feeling so sick lately with the MTX so trying to eat a biscuit or 3! to counteract it, now I've got cyclizine it's not as bad, I've found that gabapentin makes me hungry and have put on nearly a stone so when I read you may lose weight with leflunomide it was a bonus, and, since starting leflunomide I'm not very hungry so hopefully I'll be able to keep a happy medium with it all xx
Been on steroids for yrs I wouldn’t be able to move without them but my RA is aggressive and lots of damage to joints but they are great and now I couldn’t cope without steroids ... I was on LEF and worked really well but I did get the side effects of neuropathy which now got for life it’s rare so watch out for any tingling in legs arms hands etc .... good luck x
LEF doesn't work for about 12-14 weeks and steroids are great but need to be treated with great respect as they are addictive and can give people a false sense of wellness. Just be aware and hopefully the other meds will kick in and you'll feel a lot better very soon. x
Thank you, me too x
Are steroids addictive? I've never been told or heard that.
I didn't know that either x
I don’t think it is actually. I hope someone else on here will know. X
I had a Google as was curious - like you I’ve not heard this before. I think this explains it: “prednisone has no addictive potential and there is no prednisone high. However, prednisone can cause dependence to develop, which means that stopping the drug produces withdrawal symptoms.
Since prednisone mimics natural hormones, the body adjusts to the extra hormones by making less. If a person takes prednisone for several weeks the body starts making less natural hormones to compensate.”
The internet also seems to say that withdrawal symptoms are worse in high dose users and long term users - especially when the drugs are stopped abruptly. Makes sense.
Yes thank you for confirming that - it’s what I thought. I’m only allowed to reduce my dosage by 1mg per month as I’ve had to take Prednisolone for a long time.
Same for me except I can't seem to get below 5 mg. without a lot of pain/withdrawals.
Not like Heroin is, but people become dependant and thats why you must taper off slowly and it's hard to do. I was warned about it by Nephrologist as had high dose for an AKI and it took months to come off it but it depends on how long taking and how big the dose. For RA I always preferred the steroid jab as it tapers off naturally.
Hopefully I'll be ok as it's only for 6 weeks, I normally have the steroid jab but he would only have been able to do one of my joints and I needed 3, this sounded like a good option to try, especially as it seems to be helping albeit the pain has come back this afternoon 
not sure if it takes time to build up in your system first to have a longer lasting effect x
I had huge doses of Pred. and hopefully the LEF will work for you as well as it did for me. I was in remission for years on it. I could not take MTX and the LEF was great on it own. It's all such a lottery will it, won't it work ! LEF also gave me a lot more energy so it may be that its the LEF starting to work as well. I do hope so.
Thank you x
You could have had the steroid in your bum for all over effect, it's not just for joints. Then you don't have to worry about tapering, it happens naturally........
oh, I didn't know that, useful to know, thank you x
When my RA was at its worst I needed both injections and Prednisolone!
I was very lucky at the start of my RA journey as tested positive and treated aggressively some 20 years ago now. Only medication which caused me problems was MTX but it was stopped and onto LEF which worked really well. Then the AKI and AZA which also worked well but Benapali was added in in 2019. I believe being positive makes the RA journey clearer cut and might even be easier to treat. It would be interesting how many people who test negative take and respond to different medications compared to those who test positive. I have pANCA antibodies no idea what that means though. lol xx
Short term steroid use should create no problems with dependency.
Long term is a different matter.
I wish I could get off the Prednisolone having had to take it for two years. I was so pleased to have got down to 3mg since two weeks ago but I’m suffering again. I might have to wait until late May to get my next Rituximab infusion so it’s looking like I will have to increase the Prednisolone again as the Rheumy suggested. I don’t think there’s an alternative unfortunately 😢
I'm down to 8 mgs, but struggling to go lower.I've been on varying dosages for 3 years now and would take it again given the same choices, it has helped me so much.
I'm hoping that the 6 weeks I've been prescribed it gets me over the hump, but, from the last couple of months experience I'm not holding my breath, I hope you manage to find some relief eventually without them x
Yes I hope so ... for both of us!
I have been on prednisone for 10 years trying to get Giant Cell Arteritis and Polymyalgia Rheumatica under control. I have had stomach bleeding since last June and 80mg a day of Pepcid (can't do PPIs) Gaviscon and Carafate barely controls it. On 7mg. per day, and started Actemra ( biologic) last month. Hoping the Actemra will help me get off prednisone, I have said for years that prednisone should be appreciated for what it can do and respected for what it can do. It is an intercontinental ballistic missile of a medication.
I got an AKI from Omeprazole and Ranitidine is unavailable at the moment but Cimitidine is still available its not a PPI if that helps. It also impacts on bone density I understand so it has its uses but always with care.
My kidneys are just now recovering from a round of antibiotics. So far the Pepcid has not harmed my kidneys. Antibiotics wreak havoc on my kidneys. My BP med, Valsartan is supposed to protect my kidneys. It's all so confusing.
Beware! They're wonderful for acute relief but don't over exert yourself because you feel like Superwoman! No spring cleaning the house, light work certainly, gentle exercise but they're not treating so much, they're bringing inflammation down & with that pain lessens. They can be mood altering & give you an appetite just so you're aware. They're not so good long term at raised doses, they come with their own problems & why they're best only used when really needed. As it is you've only been given a short course as a bridging med whilst you wait for the LEF to work fully so you shouldn't have any problems coming off them.
Enjoy the freedom they're giving your joints. Hopefully you'll experience the same with your LEF, that it works well for you. 😊
thank you, yes this morning I've made a list of what I'm going to make for mothers day! lol and put up some decorations I bought for my son's birthday just to make it festive, I've found that LEF really knocks me sideways even though I take it early evening and I feel so groggy the next morning, hoping this is just until I get used to it.
Once this wore off thought I'd make a start on the decorations as I knew the minute I took the cyclazine I'd feel so tired and dizzy so thought I'd get as much done as I could, but, you're right, thinking about it, it's the first time I've actually had a little bit of energy, it's so frustrating though when you've felt so crappy for so long to actually have a bit of get up and go even if it's only for half an hour, never mind I'll just surf the web and buy more stuff I don't actually need 😂 x
Chatty Cathy! What dose of LEF are you taking? Also, if the cyclazine is making you tired & dizzy ask if you can have a different antiemetic. I have prochlorperazine & metoclopramide, the first works best for me.
ooh, I'll bear that in mind re alternative antiemetics, thank you. I'm only on 10mg LEF, is that what most people take? I read that initially they give you a 100mg for the first 3 days then down to 20mg but he's only given me 10mg x
It's is an option, a 100mg loading dose for a few days then reduce down to the appropriate daily dose as needed, but I started on 20mg daily. Starting doses vary, some start on 10mg, others 20mg. It will be disease activity that determines generally I would think. Anyway, this is why I asked because if you'd have been on 20mg you could maybe have split the dose & have one & in the morning & one at night, I was prescribed 10mg tablets so it was easy to do. I was thinking it would be less for your body to cope with if you could do the same but I guess not. Actually, are your tablets round with a break line down the middle? If so they're able to be halved. Bear in mind though that they'll be enteric coated to be kinder on the tum & breaking them will leave each half without any coating. Possibly something to ask if it's something you could do if you're still reacting to them but hopefully it won't be necessary & it's just an initial reaction.
Thank you, I'm also guessing 10mg is perhaps because I'm already on 200mg hydroxy and 20mg of MTX, hopefully it is just having to get used to them, today I could have had a bit of a lie in but typically been awake since 5am feeling like I had a skinful last night (I wish lol) and need to be up early over the weekend, I'll probably be asleep by 6 tonight 🙄 but happy to go where my body tells me at the moment x
Do listen to your body, it's hard work going against what it tells you! You may be right about why 10mg, being on triple therapy, everyone’s need is different. Plus there is the other thought in that there's room to increase it if it's needed. I was on double therapy with 20mg MTX. Unfortunately I was only on it just short of a year & it was stopped but hopefully it will do the trick for you & bring good control. x
When I was on prednisolone last summer I was fine with 4 hours of sleep. It was affecting my sleep and I was sleeping late and waking up early and was feeling great. Please be careful. You'll feel great within a few days of taking it. But be aware its the prednisolone thats making you have full energy and no pain. You'll see the difference once you come off it.
I was going to ask about this, when I took it initially on Wednesday bearing in mind I was also taking my weekly dose of MTX and my first dose of LEF, boy I felt pickled within an hour but slept all night, I woke up as if I'd had a skinful the night before but put this down to the MTX, however, Thursday night / Friday morning I was awake at 5am feeling so groggy but couldn't go back to sleep, I'd only had about 5 hours sleep, I thought it was a one off however, last night I woke at 1am and been awake ever since, been trying to work out if it's the prednisolone of the LEF, if anyone knows? x
It's the prednisolone. Take it in the morning at breakfast. I did but still wasn't sleepy at midnight and was waking up so early and had loads of energy. It definitely affects sleep.
in reply to Garnacha
I agree with nomoreheels that Pred is mood-altering. However, when I needed it, I felt that even "chemical happiness" was better than the misery I'd been in.
As you will be taking it for more than two weeks, you should have been given a steroid card to carry around and show to people such as dentists when you have treatment.
Many people find the initial reductions (from higher doses) easy, but the last 5 mg can be difficult. You may have to reduce those last 5 mg very gradually. It took me about 4 months to go from 5 to 0, but I'd been on Pred for 5 months before I started tapering those final 5 mg. I've been off them for over 15 months now.
I wish you well. x
Garnacha in reply to
Thank you, not sure how I'll be as it's 2 weeks on 20mg, 2 weeks on 15mg then 2 weeks on 10mg then nothing 🙄 x
They gave me a moon face and a spare tyre and a bad attitude! (I lost the first two of those when I came off the ten months later!) Just joking re the attitude, but Pred can make you irritable and depressed. I think if you know why you down etc it helps if that makes sense, but the fact I could get out of bed on Pred made such a huge difference.
Little and often is always the best strategy. I find that I do need to be careful not to over-do things - the prednisolone makes me feel a bit manic and I tend to want to get everything done NOW!
I talk too much as well apparently when I'm on a higher dose (according to my offspring anyway, who say they can always tell!)
Pred made me feel great - it was a mood enhancer for me as well as removing pain; I was warned that it might make my mood up or down and then to be ready for the reverse effect when coming off it 🙄😂
Devil’s tic-tacs!! One one hand I loved those little white tabs, such a massive relief being pain free, like the best holiday in the world. And energy too!
Down-side not so great, as really messed with my head and turned me into an impatient, petulant monster. My OH swears he’s moving out if I ever need them again! ( Methylprednisone by injection is fine for me...weird)
So treat with respect.
And you can become metabolically dependent on them, but only if you take a dose above 10mg for months. Short course with a taper built in is fine.
hahaha I love the devils tic tacs description 
I was explaining to my son look out I may have mood swings and be hyper, he said "I can see you are already, your eyes are like saucers!" lol, but now, whether it's a come down off them feel quite shaky 🤔 x
Agree re the mood changes. I recall my hubby asking if I’d like a cup of tea bringing to me as he’d just brought me some dinner to the bedroom. I yelled like a madwoman I didn’t want any tea as tea tasted like metal!
Lol....I've had my moments with my husband and boys whilst being on prednisolone. Your comment bought back memories 🙄
I've had no issues at all with psychological effects of prednisilone. It has literally brought me a bit of a quality of life that I would otherwise not have had. Nearly 3 years on them now at varying dosages, and now down to 8 mgs a day and my RD issues (and OA) are beginning to rear their ugly head again, despite being on toficinitib, leflunomide and diclofenic acid too.
Prednisilone is the only thing that does it for some people 😪
Oral steroids were friend and foe for me but I’d but I’d not have been up and moving without them, so mostly the good outweighs the bad! Glad they are making a difference for you. 💗
Absolutely yes !
Enjoy the relief and hopefully it will continue when you come of the Prednisolone please don't overdo things now your feeling better it's so easy to get carried away with catching up on things you haven't been able to do recently. Follow the plan to reduce slowly as advised, take care.
I have been on 10mg for 10 years .my consultant won’t take me off and just says it is only a small amount but that small amount has now caught up with me and I now have silent acid reflux where I am constantly coughing.Ent consultant said it’s due to that.it also makes your bone brittle n can effect your heart if taken over a long period.I do have falls and thankfully never broken anything.was at cardiology yesterday for exploration..fingers crossed all ok.I have tried myself to wean off but just makes me so ill.hopefully your consultant gives you it for a short time.it does make a huge difference to pain.
I've got down to 5mg with no issues, but when I went down to 4.5 mg, I had major aches and pains........
Hia, glad your feeling better.
So steroids are a powerful and in some cases life-saving drug. They work very fast to dampen inflammation, so you will notice the effects in a day or two of taking them. It's confusing bcz they do take the pain away but are not pain killers, they are working in the background reducing inflammation in quick time like no other anti-inflammatory drug, and as a by-product of that reduce pain associated with that.
I have a love-hate relationship with them. You can get a steroid high and feel like a million bucks on them. LIke your back to your old self. But they are not a long term solution, they are like a gateway drug to other more slow-acting permanent ones like biologics, that are easier on your body long term. I was on them for years when I was first DX. My rheumy couldn't wait to get me off of them bcz of the long term risks. Enjoy the relief now whilst knowing it's a temp thing.
A short course of steroids whilst you wait for your RD meds to click in should cause you no issues af all, it's the long term taking of steroids that are associated with other problems. I've been on steroids for 3 years with no issues at all.
Prednisone great I have just come off it so hoping I not get bad again as long term steriods not really good for you x
Thanks everyone so much for all your helpful comments and advice, it's really appreciated. Hope you don't mind if I ask for your advice again 🙄.
In December I was prescribed prednisolone just for a week (along with strong co-codamol, amitryptaline & gabapentin) as I was in so much pain, I was also prescribed with omeprazole for that week to protect my stomach.
I was very worried about the omeprazole as back in 2013 I'd been suffering with chronic diahrrea and ended up being rushed to hospital as my heart was about to stop, I was on a cardio ward for over a week hooked up to the heart monitor being drip fed all sorts of drugs, they said it was because of the omeprazole and gave me ranitadine (I think that's the name)
Anyway, go back to December last year and I was so worried about taking omeprazole again but as it was only for a week and I knew what the symptoms were if they were having an adverse affect I took them.
It occured to me early hours this morning (as I can't seem to sleep at the moment and I'm not sure if its the LEF or prednisolone) that I haven't been prescribed anything for my stomach.
As I'm on MTX, hydroxy, LEF, gabapentin, prednisolone should I have been prescribed anything? x
When I first had symptoms was over Christmas a few years ago so every test was delayed, my bloods ESR , Rheumatoid Factor etc very high, referred urgently to Gastro, but told the waiting list was 4 months. By this time I’d been off work for weeks as I could hardly move, the pain was so bad, swollen red hands and feet and pain in my knees, shoulders, even jaw. In the end my GP phoned the hospital and a Consultant in Rheumatology looked at my tests and said yes, looks like RA and to give me steroids to tie me over until my actual face to face appointment. Well within a few weeks I had no pain at all and was back at work, talk about sweet relief.
Since then I was on them again during the lockdown for suspected Crohn’s - I’m off them now and my bowel symptoms returned with a vengeance, but thankfully they have seemed to have settled down again over the past 3 weeks.
They are an amazing powerful drug, but I do remember absolutely panicking at the thought of tapering off. As a few have said above, you do get to rely on them and I know ultimately they’re not good to take long term unless you have to.
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