Prednisolone tapering difficulties

[Smelliott]

Hi all. I've been trying to taper down from 20mg of prednisolone since adding sulfasalizine to methotrexate & hydroxychloroquine 9 weeks ago. I've been on prednisolone for 7 months now. Reducing by 1mg a week had been working fine, but since I dropped from 11mg to 10mg last week my knee has gone bananas! I suppose I have 2 questions:

1. I clearly need to whack the steroids back up to get the knee under control, but by how much? I'm loathe to increase back up to 20mg as I'll lose all the gains I've made over the last few months, but is 15mg (for example) likely to do the job?

2. Is 1mg a week too fast to taper as you approach 10mg? If so, what should I be doing instead?

Appreciate there may be no hard and fast answers, but I've been given no guidance on this at all so all experiences welcome!

Thanks!

[allanah]

To be honest this is a complicated medical.question and you should speak to your rheumy team .

I do know that the dmards can take 12 weeks to kick in and your on week 9 . Did the doc tell you to taper off your steroids in this way?

I was told and did reduce mine by 1mg per week but I believe it was later than you are doing. I've never managed to get below 5mg predictions.

I think a phone call and reassessment from your team is necessary.

[Ruth12345]

If you put prednisolone tapering into the search on this site you will get a lot of info. However I would say do it very slowly. My rheumy said it could take me a year to get from 5mg to nothing. You have done well to get where you are but slowly slowly helps.

All the best.

[Lyndy]

Sorry to hear that... I would ring your CNS or rheumy about the knee but in general I found I had to go way slower than anyone advised to get off pred and if things are niggly I often gave myself a week off reducing to let my body catch up. When you are on steroids your body doesn’t produce the natural version so when you reduce it can take a while for the body to catch on and begin to make its own xx

[Smelliott]

Thanks all for your quick and helpful replies. I've left a message with the rheumatology team, so hopefully they'll get back to me, but so far nobody professional has been very helpful when it comes to reducing steroids. Hoping the sulfasalizine will kick in a bit more over the next few weeks!

[allanah in reply to Smelliott]

Goid luck , I'm sure they will be able to give you more detailed advice, for now though ibuprofen can help if your ok on it and at prescribed doses and ice packs are great in knees. I must admit I tend to get quite a few steroid injections into my knees that really help xx

[Smelliott in reply to allanah]

Thanks! The pain & swelling is getting worse by the hour, so I might end up bumping myself all the way back up to 20mg tonight (I only find prednisolone effective if taken at bedtime, even if it does make sleep... interesting).

[allanah in reply to Smelliott]

Personally I wouldnt bump it up that much as it could cause side effects you do need to wait on the rheumy or call your gp if they are any good and my local pharmacist us also a good help ! You'll only be told ( if that's what u had been told ..to go through the whole tapering rigmarole again !)

[nomoreheels in reply to allanah]

I agree with Alannah, please don't do anything without advice from either your Rheumy or GP, or even the Pharmacist at the chemist where you get your scripts filled. We can't advise, I'm sure you understand. I appreciate you're in pain but it's worth the waiting a little til you have correct medical advice to be sure. Meantime, if you're not on an NSAID you could try Voltarol 2.32%, I find that can give temporary relief.

[Lolabridge]

I do agree that you should contact your Rheumy for advice and it may be that the new drug you added is not working yet or the combination of the three is still not adequate for your needs. Only the Rheumy can advise about that and what Prednisolone dosage to increase to for the time being. Maybe the next step will be a biologic?

My Rheumy suggested I reduce from 15 mg to 7 mg by only reducing 1 mg every two weeks and told me not to go below 7mg at all at the moment.

[Smelliott in reply to Lolabridge]

Yes, unfortunately they wouldn't give me biologics due to the Covid-19 situation, or I'd already have been on them after adding hydroxychloroquine to the methotrexate failed to do the trick. We shall have to see I suppose. I've asked for guidance on prednisolone before and found it not very forthcoming, fingers crossed they actually get back to me.

[Lolabridge in reply to Smelliott]

I hope they do get back to you quickly. I would think they may be willing to start you on a biologic now, especially if the triple therapy cocktail you're taking is not working for you.

Good luck!

[springcross]

My rheumy doctor told me to reduce 1 mg per month. I did so and for the first week got several niggles and when I had finished them I had worse niggles for the first week or two but then it stopped.

[Smelliott in reply to springcross]

Sounds like maybe I've been pushing on a bit too fast then. Glad to hear you managed to get off of them!

[springcross in reply to Smelliott]

Yes, me too, thanks but on saying that, you have a much stronger dose than me - I was only on 7.5 mg and had a depo med injection and told to reduce to 5 mg straight away. The doctor told me then to start reducing monthly. xx

[Smelliott]

Just a quick update, rheumatologist has advised I increase my sulfasalizine to MAXIMUMM POWAR, and bump my prednisolone back up a little until my next appointment in 6 weeks. I'd already done the latter off my own back last night (slaps own wrist), ha ha. Fingers crossed. I am ever so slightly better today, thankfully. Still not good by any stretch of the imagination, but yesterday was truly awful. Thanks again to everyone who replied!

[medway-lady]

You need to talk to RA team as it could be a flare and coincidence but you need proper advice. I've tapered and 1 mg a week would not not be too bad so could be something else going on.

[Hidden]

Have you been on MTX long enough for it to be having an effect? It can take 3 or 4 months to get started for some people. I hope you can persevere and get off the pred, but don't rush the last part.

For me, going from 15 mg to 10 and then 5, reducing weekly was no problem. When tapering from 5 mg, I was initially told to reduce by 1 mg every four weeks. Had to tweak that to alternating 4 and 5 daily for two weeks, followed by 4 for two weeks, then alternate 4 and 3 for two weeks, etc. It seemed a long time (4 months) to get from 5 to zero, but everyone says the last bit of tapering is the most difficult.

[Stowe in reply to Hidden]

That's exactly the situation I'm in at the moment, I got down to 5 fine, from 10, then started to have flu symptoms as soon as I went below 5. Now I'm at 4 - 3 for 2 weeks, if any symptoms flare up again I will go slower. Frustrating as I want to be off them now, but better to be careful and go slowly. The consultant wants me off them now as I been on them for 16 months, plus side though, absolutely no RA pain, hope your keeping well.

[Smelliott in reply to Stowe]

Man, I wish I could get down as low as 5mg of prednisolone at the moment, I'm back up on 15mg now! I've been on MTX for years, the sulfasalizine is the new one - still waiting for that to reach full strength as I've not quite been on it for 12 weeks yet (also my rheumatologist very recently got me to increase the dose to 6 tablets per day, so that probably means I'll have to wait even longer to see if it works before trying something else!)

The waiting game is very frustrating, isn't it?

[Stowe in reply to Smelliott]

Yes is it fustrating waiting for the tablets to take effect, to take the pain away, then waiting to come off the steriods. Hopefully once your tablets take effect your not be in any pain then hopefilly you can then slowly come off the steriods. Good luck.