Hi everyoneI have had a really bad flare up over the last 2 weeks and somedays have not been able to walk and feeling like I have a broken neck
I met with the rhumy nurse and she examined me and immediately put me on 20mgs of Prednisolone for the first week and then tapering down to 15mgs next week, 10mgs the week after and then 10mgs the following week.
This is the 6th day of the 1st week but I am still in a lot of pain for 12 hours when the prednisolone eventually wears off and have to wait for the next morning to take it again and even when I take it its 4 hours before I can really feel any benefit.
If anyone has any experience with this amount of prenisolone ( 20 mgs 1st week ) is the normal response ?
Any experience or advice around this would be gratefully recieved.
Warm regards
Shy&retiring
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Shyandretiring
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I’ve been on higher dose as my rescue pack for a chest infection because I have asthma and two other lung diseases as well as RAand OA. My rescue pack is 60mg of prednisolone and a week of anti . Works wonders on the joints!
hi i have just been on the exact same course liek you but noticed the difference more or less a day or two after taking 20 mg and it all stayed good until say a week after i finished the course what you are saying dont sound normal, do you know what your inflammation score was?
I aint no dr but i had 20 m when my CRP was 25, yours is sky high, you need to get a second opion or speak to borht your dr and your rhuemy about this, i dont think 20 m g is enough but like i said i aint no dr , call someone ok
Thank you Having read that I will try and get hold of my rhuny nurse and ask what the right dosage is for a massive flare up she may well increase it .
the rhuey nurse wont change your meds, you need to speak to rhuemy themselves or your GP tell them 20 mg is not enought tell themall the pain is still there, they have to increae it are you on other meds for ra?
Hi pammi2They have started me on Sulfasalazine 500mg this week and then increase it over the next 3 weeks so that I am on 2000mg per day in week 4 ( 4x500 mg tablets )
Rhumy are really hard to get hold of but I will try and go up to the hospital if need be as leaving messages with them just does not work.
remission, just a word, dont mean anything, i remeber when they told me i was in remission, and i thought oh i dont ahve RA but of course if i stopped the drugs i still got RA so no i never looked at it that i never got RA.. plus just being on sulfersalzine i dont think was ever enough...
You are so right remission is just a word and I have had to learn that the hard way !For you Sulfasalazine wasnt enough so are you still on it with something else or are you on something completely different ?
By the way I took some paracetamol before going to bed and I feel that I slept better last night so thank you so much for that advice pammi.
when i first got RA i was o n sulfazalinesine , and prednisolone , but i wanted a baby, so could not go on proper RA drugs, I got my RA after my first ivf !!!!! in total 6 ivfs later, i got my baby. Then i was put on Enbrel injection and methotreaxate , took it for 10 years, last year it stopped working. i beleive because i became peri menopausal even though my rehuemy dont think it is connected but I KNOW it is. Then i was put on yuflyma injection which i took for 5 months, didnt work. Then steriod tablets, then steriod injection now more steroid tablets and next week i have to have iv infusion of rituximub which i am dredding. However as you havent really had it long, this is my 16th year all i can say to you is QUESTION EVERYTHING, if you are in pain, speak to the right people the rhuemy nurses do not change your drugs but tell you to take pain killers. speak to gp as urgent appointment or rhuemy secretary as urgent appt and if no help, go to the hosptilal. I still have not accepted this desease and always look at finding ways to make my life better. I am on the carnivore diet even though not so strict but anything helps. NO food inflammed me like they say night shade vegatables. You got to be strong, fight on, no one understands your pain UNLESS you have the desease thats what i say to everyone. Be positive, dont let it stop you but most of all KEEP MOVING.
Crumbs you have been through a lot !I will keep questioning everything and you are so right and nobody does know your pain unless you have the same thing so true.
I have learnt recently that if no one is listening make a fuss because to you everything is URGENT they cannot feel your pain and will try to keep positive and as you rightly say keep moving.
I really hope the rituximab injection is as painless as it can be and that it really works for you for many many years you are such an inspiration to others and definately to me.
Thank you so much that means a lot. Yes question everything, if they want to put you on something read up about side effects as i had lupas once which is sticky blood and they wanted to put me on a tablet that has side effects of blood clots and i had to ask "why are you offering me a tablet that causes blood clot when i got sticky blood" oh how rhuemy tried to move around that was unreal. You are urgent your pain is urgent you have to be your own manager, never accept year long appointments unless you need them sooner, you will just be put in a queue, you got to work the system other wise during the wait you get worse and you are just put on more pain killers. the rituximub is not injection it is a IV fluid that takes 5/6 hours to go into you so have to stay in hospital room until its done to make sure there are no side effects whilst taken, this is what i am dreading but as always i will plod on and QUESTION EVERYTHING.
You have taught me a lot in a very short time and I have taken it all on board going forward.I am going to question everything and your lupus experience just shows that they could have killed you if you had not been you and challenged them its frightening.
Feel for you next week 5/6 hours on IV is no fun but really hope it changes your health around for the better.
thank you and yes they should have double checked what they were offering, i said what is i want a second opinion, they said 6 month waiting list yet they were waiting for me to make a decision on which drug i wanted and i said well i have no choice i cant take the one that can cuase blood clots i have to have infusion. Yes you have to learn from people who have it. Also i see people advertising they cured themselves and then they want to sell you something and what i dont understand is when i was pregnant i lost my RA i was skipping throughout all my pregnancy up to 9 months so there is something in pregnancy hormones that stops your RA WITHOUT DRUGS but who is going to bottle that , will let you know how it goes.
Remission is a confusing word often misunderstood. Years back the consultants I saw talked about controlling RA with drugs which seems an easier word and more appropriate. This drug is controlling your disease well does not give a signal to stop taking it. Whereas phrases like you are now in remission has led to many stopping there drugs due to misunderstanding through the term being commonly used in other medical areas where remission involves no more treatment unless the condition reoccurs .
If your disease was well controlled previously with sulphasalzine it probably will be again in a few weeks time. Mean time see your GP, maybe he could prescribe some pain killers and anti inflammatories to help with pain short term. Be patient and get plenty of rest.
Please seek your rheumatologists advise before stopping drugs they prescribe. RA is a chronic disease, it doesn’t go away, and to live our best life we need to keep it under control; drugs are essential to this. Maybe one day something will be found that will cure this disease but that is many years ahead.
Thank you MallYou are so right the word "remission" needs to be changed to "controlled" if they had used that word I would definately not have come off the meds, but it was my decision and mine alone at the time.
I do hope you are right and that the sulphasalazine works its magic on my condition once more , in the mean time I am on a 4 week course of predisolone which eases the pain for a few hours of the day at least while the sulphasalazine builds up in my system.
I agree absolutely with this explanation. I was fortunate enough to have 2 ten year stretches of “remission”, but at no time did I give up the medication I was taking. I started methotrexate in 1998 and am still taking it - and shall continue to do so. The problem with stopping the medication is that when you restart it doesn’t always act immediately, and can even be less effective than before, and so needing bigger doses or a complete change of drug! Strange but true.
But everything about rheumatoid disease is strange. It’s still a mystery!
Thank you for replying bienassis.I really hope that the sulphasalazine works as well as before as the mtx I was started on in 2020 made me feel so tired so I cannot go back on that.
I know there are other dmardsthat they can offer but they take so long to kick in !
Good morning, Yes, I understand that can happen - and yes, the meds can often take their time to be effective. Unfortunately, we have to take the medication that suits us the best. It’s all a bit hit and miss with these meds. One of these days the boffins might come up with something that works well and safely on all of us.
That does seem a long way off, doesn’t it? Not to mention that the cause of the disease remains unknown!
Keep as well as possible, and I hope the sulphasalazine does the trick.
So many things to be aware of when taking drugs for rheumatoid disease! I’ve been lucky in having so few. When I read of the huge doses of prednisolone that some of you have had - 20mgs for example, my eyes start to water! The only time I was prescribed the smallest dose in tablet form was for a visit to Canada for a family reunion. As soon as I returned home it was gradually reduced to nil. Since then I’ve had a few injections at times of flare but no more tablets.
Nevertheless, here I am many, many years later and recently diagnosed with osteoporosis. So I’m now being treated for that. My GP put the blame on the steroids, but I’m also pretty ancient. So do keep a check on your bone density, folks, as that can be treated successfully.
And get as much information as you can on everything - so you are always prepared to talk to the rheumy and question all decisions.
Over the past seven years I've been on 20mg a lot and at times û. I wouldn't say that it wears off but I'm on other stuff as well. I take paracetamol/ co codamol as required and prescription non steroidal drugs. It does take a few hrs to kick in.
Maybe speak to your GP to see what else you can try...along with the pred.
If you're on pred for more than a week you'll need to wean off it.
I'm on it so long now my adrenal glands don't work so I'll never get completely off but I'm trying to cut down
I've tried most things at this stage. I was on sulphasalazine...turns your pee orange. Can't remember now why they stopped it. You can take co codamol when on prednisolone.
I'm on my 9th biologic, Mtx injection, pred and lefluonmide. I've got a buprenorphine patch currently and still take some paracetamol.
Well I'm better than I was but not really normal 😂 Hope they get yours under control and don't worry about short term steroids they buy you time for the other things to work.
I'm an odd case that is difficult to manage but thankfully most people respond much better to meds than me.
you could ask about a steroid shot as this might be better for you. I have done as high as 30mg then taper but now always on 5mg . The quicker you can find pain mgmt that is not steroid the better it is tho, as steroids long term are not good either.
It really depends on you and your RA I am never pain free as I am not stable even after 5years. I work with my GP a lot with pain medication and the RA team keep plugging away trying to find a biologic that I can cope with
I was on 30mg with a Very bad flare while off meds. I was on them for 3 months with very slow papering. They're great at the right dose but tapering is a must. But they're not going for your bone density or eyes. I have cataracts now. But I couldn't walk or anything and the pred got me going again until I was steadily on Benepali and sulfasalazine.
Thank you Haz58I was in remission for 12 months and now have had this massive flare up but I stupidly stopped taking the sufasalazine with the agreement of the rhumy team but I now wish I had just stayed on a lower dose of sulfasalazine but you live and learn I suppose !
I now have to build up my Sulfasalzine again over the next few weeks starting with 1 a day at the moment until I reach 2 a day in a month for the rest of my life I just hope it works as well as last time.
So sorry to hear about your cataracts are you getting them removed soon ?
No they aren't too bad at the moment. Optician is keeping an eye on them...excuse the pun lol. I don't drive at night anymore because of the headlight glare but I'm ok driving in the day. I hope you get relief very soon! Nothing worse than constant pain! X
On quite a few occasions I have been prescribed a tapering 4 week dose of prednisolone to control a bad flare: 20mg/day week 1, 15mg week 2, 10mg week 3, 5mg week 4. Usually by the end of the 1st week pain is under control but more recently it has taken longer. I have always been taking my usual monthly biologic when these flares have occurred, which is insufficient on its own to completely control my RA: this is under review. Persevere and hopefully the prednisolone will do its job in due course.
I guess each of us has different reaction times and responses to effectiveness but I would be patient for at least 10 days/2 weeks: my most recent experience was a noticeable lessening of pain around that time frame. They do stress it's important to continue the whole course, so don't stop without advice, even if you think it isn't working for you. My monthly biologic is Simponi. In passing, I supplemented this with 2 paracetamol morning and evening and, for what it's worth, these humble painkillers have, for me, been a useful additional support. Again, there doesn't seem to be a universal panacea for these flares, but if the full month's course is ineffective for you, perhaps it would be worth revisiting your clinician to see if a prednisolone injection would be more helpful.
Thank you lifesforlivingYour advice is so welcolm and really appreciated.
I will of course stay the course even if I think it is not hugely improving but perhaps by the end of the 4 weeks the sulfersalazine will have started taking effect in some capacity.
I will try some paracetamol while the steroids are taking effect and see if it makes any difference albeit only small as it may help thank you.
I'm going through the same procedure right now.I started on 20mg and hope to taper off to zero soon. I noticed a moderate improvement in the first week and continued to improve as I went along. I hope it'll work for you as well.
So when do you think the steroids made you completely pain free as I am grateful for the 16 hours of pain free but the other 8 hours as you know are so painful.
I was never pain free, just was in less pain gradually as the weeks went by. I didn't have the same pattern as you, but we all react differently to steroids.
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For those on Prednisolone - poem
Do the anti inflammatory effects of prednisolone wear off towards the end of the day? 
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