Opinions re Taper from 10mg downwards as per Rheumatology Nurse advice please

[AmberGamble]

I’ve been reducing Prednisolone alongside Methotrexate for the past 3 months under a specialist Rheumatology Centre. I only ever speak to nurses after an initial consultation with a Registrar back in July.

They have now passed my prescriptions and blood testing over to my GP under the Shared Care Protocol agreement which is fine, as I am still under their outpatient care for advice and treatment.

I have been on 10mg of Prednisolone and 25mg maintenance dose of Methotrexate for the last 2 months and have been doing OK. Some side effects but they seem to have settled down thankfully.

Yesterday I had my 3 month review with a nurse. I asked what would my taper be from now onwards as I’d been told it would be reviewed after the end of this period. She said ‘Oh just stay on 10mg for now’.

I queried this as I’m keen to start the slow journey downwards, especially since I have steroid induced diabetes having been on high dose Prednisolone from my diagnosis last Christmas.

I’m keen to get off the insulin if at all possible but I know that’s not necessarily a given that it will happen.

The nurse then sent me this table below saying if you want to reduce try this…..

I’d really appreciate your opinions as to whether this is a wise way to do it.

Sorry the table hasn’t copied properly but hope you get the gist!

Week Monday Tuesday Wednesday Thursday Friday Saturday Sunday

1 10mg 10mg 7.5mg 10mg 10mg 10mg 10mg

2 10mg 10mg 7.5mg 7.5mg 10mg 10mg 10mg

3 10mg 7.5mg 10mg 7.5mg 10mg 7.5mg 10mg

4 10mg 7.5mg 10mg 7.5mg 10mg 7.5mg 7.5mg

5 7.5mg 7.5mg 10mg 7.5mg 7.5mg 7.5mg 10mg

6 7.5mg 7.5mg 10mg 7.5mg 7.5mg 7.5mg 7.5mg

7 7.5mg 7.5mg 7.5mg 7.5mg 7.5mg 7.5mg 7.5mg

[DorsetLady PMRGCAuk volunteer]

Too big a drop -even with MTX.

Substitute the 7.5mg with 9mg -and it’s not dissimilar to my 7week taper.. and likely to be much more successful.

Guidelines do say once below 10mg reduce by 1mg every 4-8 weeks.

[AmberGamble in reply to DorsetLady]

Thank you, I’m going to start on that on Monday and hopefully it will start to get me down at last 🤞

Quite the giant step for me!

[DorsetLady PMRGCAuk volunteer in reply to AmberGamble]

A giant step in one way [a good one I hope], but not in the nurse's way! 😊

[PMRpro Ambassador]

Agree with DL - 2.5mg is a lot, even like that and even with MTX which DOESN'T guarantee a smoother easier taper whatever they try to tell you. And really - why wait longer? Just do smaller steps - because loads of patients would do 1mg at a time even without MTX. If it doesn't work with 1mg it is easy to jump back. Just don't be in denial.

[AmberGamble in reply to PMRpro]

Thank you, much better advice than from my specialist nurse🥴

[Freya32 in reply to AmberGamble]

Agree with what others have said.It is no good trying to rush it.

Your body will tell you. It knows best.

Stay with what is comfortable.

Sorry to say but much advice given by GP,s and such is unworkable. There is no "0ne size fits all'

I cannot get below 5 mg so will stay with that.

Advice given to me by one member suggested taking preds in early morning with yoghurt. Excellent advice.

The adrenal glands secrete cortisol from the time you wake just for a few hours, so it makes sense to take your preds then.

Also the yoghurt coats the stomach nicely so preds cause no stomach pain .( Yes folk take lansaprozole to prevent preds causing stomach ulcers but I cannot take that due to other issues. ).

Taking preds at night is no good. Causes wakefulness I found...but again do what suits you best.

Other issues like increased appetite, weight gain. Moon face etc will fade in time as you gradually decrease...just cut the carbs, ditch the doughnuts and

walk more if you can.

[AmberGamble in reply to Freya32]

Thank you. I do take my prednisolone early morning I always have done. I’m also on very low carb diet due to steroid induced diabetes so have lost weight and kept it off, still got a bit of moon face though!

I really want to get off the insulin ultimately, as it’s that aspect which most affects my daily life, on top of the GCA & PMR🙁

[Freya32 in reply to AmberGamble]

I wish you well.Diet is everything.

Slowly does it.

[SMW10]

I am 72 and not taking methotrexate. I started on 15mg of prednisolone 7 years ago. Have tapered down to 3 a couple of times but it hurt too much. In negotiation with my GP I am holding at 5 and taking additional ibruprofen / co-dydramol as required when playing golf, skiing etc. I also agreed to stop the alendronic acid which pleased my GP. I am happy to take prednisone for the rest of my days in exchange for bearable pain.

[Rebsy]

Just got your info. I’m on 5mg pred and 20mg methotrexate. I can’t say the methotrexate has made any difference and when I increased from 15mg to 20mg my liver blood tests were not great ( they have been fine for a year) . My rheumatologist is considering other options so I’ll see what they suggest when I speak to them next week.

[Odosmum in reply to Rebsy]

Yes, using methotrexate and leflunomide to reduce steroids for PMR has always sounded barmy to me. They are such toxic drugs. But I have to declare an interest here. I have Rheumatoid Arthritis (diagnosed 30 + years ago) and was treated with Methotrexate for a few years (I struggled with it and it did little to control my disease) and Leflunomide, which I have taken for many years and still take to this day. It didn't prevent PMR and at one stage while taking it, I had to take 40mg prednisolone. I am currently experiencing issues with liver enzymes - it happens periodically - but my latest blood result shows things are improving. We cannot see any pattern to the liver issues - dose is stable, I drink very little and what I eat doesn't really change - and when I've had ultrasounds, nothing shows up.

Fingers crossed that your liver issues are fleeting, Rebsy, and that your rheumatologist comes up with something less toxic for you.

[AmberGamble in reply to Rebsy]

Would be interested to hear what is suggested - it’s the steroid induced diabetes which bothers me most, hence the need to reduce prednisolone.

[CarysL]

Hi, I agree with others comments, no more than 1mg at a time.I am 67 and I have been on Prednisolone since 2017, never been on methotrexate. I was on a high dose initially, 40mg reducing by 5mg at a time until 10mg then 1mg at most every 6 weeks. Never been able to stop completely, currently on 3mg by taking alternate 4mg/3mg daily for a few weeks.

If I am below 5mg and have to stay on 2/3mg for ever I think my Rheumatologist will be ok. Methotrexate has been offered many time and although sold as a steroid sparing drug I have always declined because I dont think it will bring a miracle cure and I dont want to introduce yet another strong drug to my system.

All the best with your reducing journey

[AmberGamble in reply to CarysL]

Thank you. I started on 70mg of Pred as I had GCA and was also in the US on holiday at Christmas at the time! I stayed on 60mg for 6 weeks until I was well enough to fly back to U.K.

My well controlled type 2 diabetes when through the roof as a result and I had to go on insulin which I’m obviously still on. That’s why I was very keen to get on a steroid sparer. MTX wasn’t my drug of choice but it’s all my rheumatologist offered hence I am taking it and trying to reduce accordingly.

[Debella]

hiya my journey has been very much the same as yours, l am now down to 7mg pred per day and am feeling exhausted and weak all the time, l have interrupted sleep every night and feel so hot all the time, lm having regular blood tests that always come back fine so not sure what to do next , hope this helps xx

[Reclus]

i agree with your other replies do what feels good for you and take it easy your body will tell you when you have gone too fast to reduce. i have been on pred since 2017 got down to 5mgs but symptoms started up again so increased to 8mgs and have continued for the past two months as moving house etc. so stressful. will drop another 1mg in a couple of months and see how i go. good luck