Prednisolone Taper Advice Please

[Welshmerlin]

After losing sight in one eye, I was diagnosed with GCA & PMR at the end of this July. After a 3-day course of Prednisolone infusions, I was put on this tapering plan: 60mg for 4 weeks, then reducing by 10mg every 2 weeks until reaching 20mg, followed by a reduction of 5mg every 2 weeks until 10mg, and then tapering by 1mg per month. I'm set to drop to 10mg this Wednesday.

I've also been on Methotrexate for the past 4 weeks. Each time, I wake up the following morning with mild pain in my head, neck, and shoulders, which gradually subsides over 4 days. I’m starting to think the Methotrexate might be causing this rather than the Prednisolone reduction.

Should I consider switching to the 'Dead Slow and Nearly Stop' tapering method from 15mg or 10mg to manage this more carefully?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

My situation was similar to yours re sight loss [GCA only]- but much slower taper from 30mg.

If you are only having issues after the day you have taken MTX which then abates, then I might be inclined to jettison that. It maybe just you body acclimatising to the drug, but as you've got so low quite quickly why are they now introducing it?

Personal opinion, I'd stay at 15mg for a month rather than 2 weeks, and then taper by 1mg per month to 10mg, from then one 1mg every 4-8 weeks.

Your PMR will have been well controlled on higher GCA doses, but now you are getting into the range where it may start giving you ssues.

Whether you decide to use a slower tapering plan is entirely up to you; I didn't feel the need to use my plan until I got to 7mg.. But as I said much slower tapering overall, and no PMR to contend with.

Good luck whatever you decide.. and maybe have a look at this for more info - if you haven't seen it already

healthunlocked.com/pmrgcauk...

[Welshmerlin in reply to DorsetLady]

Thank you DorsetLady

That's very useful information which helps a lot.

I've decided to continue on 15mg longer as you suggest and will speak to Rheumatology regarding stopping Methotrexate or changing to something else.

[Welshmerlin in reply to Welshmerlin]

Just has a video call with my Rheumatology consultant. He said to continue on 15mg Prednisolone for another 2 weeks ( as you suggested ) and then drop to 12.5 for a few weeks and if still OK down to 10mg.

[DorsetLady PMRGCAuk volunteer in reply to Welshmerlin]

Agree with the extra 2 weeks... but would also try the drop to 12.5mg more slowly.

What tablets do you have? If 2.5mg, then cut in half and try 1.25mg [so 13/75mg] for couple of weeks, before you drop to 12.5mg...as he said a few weeks - then do that!..

If it works okay you can do same next step down... so to 11.25mg for a couple of weeks, then to 10mg.

But do ask for 1mgs from GP if you haven't already got on prescription.

[Angelsmummy]

Morning Welshmerlin from another GCAer with sight loss.Hope you are coming to terms with it and coping ok?I was rushed with my taper by rheumys and had 2 flares.Was offered TCZ at a very low dose of pred which after expert advice that I received from a certain source,I refused andI am doing a 7 week taper devised by DL.Am now down to 5 and 1/2 mg and so far so good.I am 23 months into my journey .I will go as slow as I am for as long as it takes.At the end of the day,it is our disease and our body,pretty sure we know what is best for ourselves Dont we?Good luck to you and best wishes,xx🌼😜

[Welshmerlin in reply to Angelsmummy]

Good Morning Angelsmummy, at first I really struggled with the sight loss. The loss of depth perception and the reduction at what I could see at distance was not easy for me. After changing to an independent opticians which is owned by an ex-eye consultant, I'm getting on much better now with new glasses. My brain is also getting better at handling the burred shapes from my bad eye now!

Good to hear your taper is working for you. I hope it continues. I completely agree with you it's our disease/our body and we know what's best xx

[DorsetLady PMRGCAuk volunteer in reply to Welshmerlin]

Maybe have a look at this -

healthunlocked.com/pmrgcauk....

And this-

healthunlocked.com/pmrgcauk...

And a bit more -

healthunlocked.com/pmrgcauk...

[Welshmerlin in reply to DorsetLady]

Thank you again DorsetLady.

I have just read your links. I can so relate to what you have written. My bad eye is also like looking through a grey mass although at short range (up to 2 metres) I can see shapes and some colour. Beyond 2 metres I see very little.

Just recently I have had so many people ask me "is your eye better now" and they are so shocked when I say it will never get better! I guess the initial high dose of Prednisolone made such a big improvement to the pain I had in my joints and muscles, people assume it was fixing my eye too!

[DorsetLady PMRGCAuk volunteer in reply to Welshmerlin]

Yes lots do… and if like me your eyes look normal they just assume that’s the case. As I’ve said, in time it does become the ‘new’ normal - and you just get on with life.. but it can still be very annoying at times..🤨

[Angelsmummy in reply to Welshmerlin]

Glad you are coping a bit better now,it is still very early days for you.It must be worse for you having to deal with blurred shapes,luckily,I only have light perception which still drives me crazy after 23 months!The depth perception does get a lot easier but still a bit of an issue for me.I keep forgetting that I have no sight in one eye and have had trips to A and E to be steristripped up where I have walked into things on blind eye.Keep telling myself to be more careful but accidents do happen.Glad you have a very understanding optician,makes all the difference doesn’t it?Are you under an eye clinic at your local hospital?The RNIB are also attached to our eye clinic andI have been given invaluable help,aids etc in early days.We are also lucky to have Suffolk Sight and Sensing change who are absolutely ace!Hope you get any help that is on offer or maybe see if there are organisations in your area.They are nearly all voluntary and offer help in so many ways.There are a few of us on the forum with sight loss,so you are not alone ok?Xxx💐😜