20 mgs Prednisolone for bad rhumy flare up: Hi... - NRAS

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20 mgs Prednisolone for bad rhumy flare up

Shyandretiring profile image

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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36 Replies
helenlw7 profile image
helenlw7

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!

Shyandretiring profile image
Shyandretiring in reply tohelenlw7

Hi helenlw7Wow 60 mgs sounds like what I need right now 🙃

I really hope that you can get over your chest infection very soon.

Thank you for replying

Shy

pammi2 profile image
pammi2

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?

Shyandretiring profile image
Shyandretiring in reply topammi2

Hi Pammi2Thank you for replying

My inflammmatory markers are serum c 79

Serum creatinine 57

Serum sodium 134

WBC 11.9

ESR 38

All these are out of range

Does this mean anything to you.

Kind regards

Shy

pammi2 profile image
pammi2 in reply toShyandretiring

which is your CRP is tht your score of 79 ??

Shyandretiring profile image
Shyandretiring in reply topammi2

Hi pammi2Yes 79 is my CRP score at the moment

pammi2 profile image
pammi2 in reply toShyandretiring

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

Shyandretiring profile image
Shyandretiring in reply topammi2

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 .

Thank you so much for your advice pammi2

Warm regards

Shy

pammi2 profile image
pammi2 in reply toShyandretiring

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?

Shyandretiring profile image
Shyandretiring in reply topammi2

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.

pammi2 profile image
pammi2 in reply toShyandretiring

yes leaving messages does not work, try the rhumey secreatary or try the GP as well, try all avenues, how long you had RA ?

Shyandretiring profile image
Shyandretiring in reply topammi2

Had it since 2020 but went into remission around 12 months ago and stupidly came off all the meds and really paying for it now

pammi2 profile image
pammi2 in reply toShyandretiring

what was you on when you had it and why did you stop your meds??

Shyandretiring profile image
Shyandretiring in reply topammi2

Well I was on Sulfersalzine and then went into remission so I stopped taking the Sulfersalazine like an idiot !

wilbertjellyfish profile image
wilbertjellyfish

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

Shyandretiring profile image
Shyandretiring in reply towilbertjellyfish

Thank you WilfredSorry to hear about your adrenal glands not working thats why I have been recitent to take meds up until now anyway !

I am also starting a build up course of sulfasalazine from 2 a day now for a week upto 4 a day in 3 weeks to see if that works.

The rhumy team did not mention that I could take co-codomol along side the steroids I will ask them.

Have you been on Sulfasalazine at all ?

Warm regards

Shy

wilbertjellyfish profile image
wilbertjellyfish in reply toShyandretiring

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.

Shyandretiring profile image
Shyandretiring in reply towilbertjellyfish

Hi WilfCrumbs are you on all of that at once !

Is your pain under control yet then and how long have you been on all of these at once ?

Warm regards

Shy

wilbertjellyfish profile image
wilbertjellyfish in reply toShyandretiring

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.

Shyandretiring profile image
Shyandretiring in reply towilbertjellyfish

Thank you Wilbert for tour reassuring reply.Although you are an odd case I really do hope that you can get on a steady pain management plan soon.

Warm regards

Shy

Deeb1764 profile image
Deeb1764

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.

Shyandretiring profile image
Shyandretiring in reply toDeeb1764

Thank you Deeb1764I will ask about the steroid injection.

The 20mg tablets I am on are working for roughly 16 hours with 8 hours of pain in between

I am not sure if that's normal or not .

Kind regards

Shy

Deeb1764 profile image
Deeb1764 in reply toShyandretiring

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

Shyandretiring profile image
Shyandretiring in reply toDeeb1764

Thank you deeb1764I know we are all different but zi hope you can be pain free one day.

Warm regards

Shy

Haz58 profile image
Haz58

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.

Shyandretiring profile image
Shyandretiring in reply toHaz58

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 ?

Warm regards

Shy

Haz58 profile image
Haz58 in reply toShyandretiring

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

Shyandretiring profile image
Shyandretiring in reply toHaz58

Thanks Haz58

Lifesforliving profile image
Lifesforliving

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.

Shyandretiring profile image
Shyandretiring in reply toLifesforliving

Thank you LifesforlivingI am on the 7th day of 20mgs but although it works for 16 hours I still have pain for another 8 hours .

Is that your experience with it as I am not looking forward to taking less of it next week ( 15 mgs ) to have more than 8 hours of pain relief !

What Biologic are you taking out of interest.

Warm regards

Shy

Lifesforliving profile image
Lifesforliving in reply toShyandretiring

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.

Shyandretiring profile image
Shyandretiring in reply toLifesforliving

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.

You are so right no one person is the same with

their reactions to life or medicines.

Warm regards and thanks again.

Shy

stbernhard profile image
stbernhard

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.

Shyandretiring profile image
Shyandretiring in reply tostbernhard

Hi stbernhardThank you for your reply

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.

Kind regards

Shy

stbernhard profile image
stbernhard in reply toShyandretiring

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.

Shyandretiring profile image
Shyandretiring in reply tostbernhard

Thank you stbernhardWarm regards

Shy

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