GCA Tapering of Pred to 10mg

[HappyDiamonds]

I have GCA & started on 60mg of Pred at end of May 2020. Been tapering at 2.5mg every 2 weeks and on Sunday reached 10mg. It was a reluctant drop this time from 12.5 to 10 as I felt it was too big a drop but Hospital are adamant this is the way to go and they are sort of holding methodextrate over my head because at first they wanted me to drop 5mg every 2 weeks but had to change to dropping by 2.5 and then I had a wobble at 30mg. From now on (after 10mg) they want me to drop 1mg every month.

Im feeling well except for some minor irritating side effects from the Pred but can't complain at all. I consider reducing from 60mg to 10mg in 7months is pretty good going and don't understand why the Hospital are challenging it. So my question is, if the drop from 12.5 to 10 is going to give me problems how soon will I realise its not enough?

Also dropping from 10 to 9 when the month is up is 10% so hopefully won't be a problem but I'm worried about the 1mg drops after that although I appreciate thats a way off. Obviously Im keen to reduce to as low a dose as I can but want the GCA controlled. Absolutely dread a flare and never want to go back to how I felt before eventually being diagnosed.

All advice welcome please. Thank you.

[SnazzyD]

Oh yes, I know that feeling of not wanting to ever go back to high doses, ever. Yet, one is being told to go hell for leather reducing. I felt so strongly that I just said I had done very well with no relapses, had not put on weight, good b/p, good blood sugars and that I had to cope with awful withdrawal symptoms alongside a pretty heavy domestic load. Therefore I was not prepared to go as fast as they wanted me to. Fighting back the tears and probably looking a bit mad, I asked if it was better to risk flare or keep going with a successful reduction, or words to that effect. They couldn’t do much but mutter and warn about dire side effects. One did a superb job of scare stories and then told me to carry on as I saw fit.

[123-go in reply to SnazzyD]

Good for you for standing your ground!

[Songbird69 in reply to SnazzyD]

Well done you. It takes a lot to stand up to these people. I have a vision of you looking slightly mad! Made me chuckle!

[Frewen1 in reply to SnazzyD]

Hi Everyone - really interested in this conversation; Have GCA, and I'm three months behind HappyDiamonds, had got down to 12.5mg two - three weeks ago, but started to feel a stronger version of the usual sensation I have every day (weakish legs, slight ache over head but not headache, blurry vision, permanent sensation that I've just been mildly electrocuted) - as it was Christmas /New Year and I couldn't get hold of anyone I unilaterally (with gentle advice from here) put myself back up to 15mg. Consultant and GP agreed, post facto, and I shall discuss with Rheumy in two weeks at next appt. Here's the extremely naive question: it dawned on me that the buzzy, wobbly sensations I have every day are not in fact part of the (manifold) side effects of the Pred, which I blame for everything, but in fact the disease? And it was a stronger sensation when I reduced to 12.5, as it wasn't being camouflaged as much? When I said this on phone to Rheumy, she said it could be either? I just know that you brilliant people will be able to give me an accurate answer. Many thanks, x PS am very jealous, HD, but happy for you - I have put on weight, and have a delightfully swollen face...bah!

[Helipad in reply to Frewen1]

I also get some sort of weird buzzy feeling and didn’t have a clue what it was to do with, I have PMR and GCA, one of the great things about this forum is that you come across people who are getting some of the weird and wonderful things that you yourself are. I have also put on weight and have a big round face.

[HappyDiamonds in reply to Frewen1]

Hi Frewen, I hope my question has helped you a little, but I think it might be best if you asked your question in a new post where you will get lots of replies as it has rather got swallowed up in this one. Good luck with your tapering and next Rheumy appointment.

[Frewen1 in reply to HappyDiamonds]

Thanks H D

[Flosy in reply to Frewen1]

Hi.yes I have put on weigh and swollen face to.but I suppose we have to put up with it for time being.take care.

[Frewen1 in reply to Flosy]

Yes, you're right - I find vanity can still bother me, even at 72! ... keep safe

[HappyDiamonds in reply to SnazzyD]

Being a member of this forum has educated me and given me the courage to challenge things. Have already refused the infusion after pushing for a dexa scan which showed my bones were good. Initially they made me feel so guilty that I wasn't able to stick to reducing by 5mg every 2 weeks. Im sure they mean well but they haven't experienced what its like to have this disease. No doubt I will soon be fighting back tears and looking a bit mad 😀

[DorsetLady PMRGCAuk volunteer]

Hospital might be adamant that’s the way to go - but your GCA may have very different ideas! —and the guidelines do state that tapering should be in agreement with patient’s wishes NOT imposed on them.

You have done so well - but now you need to slow up (unless you are one of the very lucky ones).

Again the guidelines say under 10mg - 1mg reducing every 4 or 8 weeks - depending on patient and disease activity.

As you have done so well to get to 10mg in 8 months there is no need to add in MTX.

As you only dropped dose on Sunday, it could be another week before you know if that dose is okay..,and if it isn’t there’s no way you should reduce at the end of the month.

[HappyDiamonds in reply to DorsetLady]

Thank you Dorset Lady, fingers crossed I'm not back troubling you in a weeks time.

[Kalacik in reply to DorsetLady]

I have a problem as having reduced from 40 mg to 12.5 and am ok. I’m unable to get 1 mg in north Cyprus. The lowest is 2.5. So I guess my only option is to try and cut them in half.

[DorsetLady PMRGCAuk volunteer in reply to Kalacik]

Yes that easy enough to do so along as they are the plain white uncoated version. Pill cutter quite cheap from pharmacies or online.

[PMRpro Ambassador in reply to Kalacik]

And use one of the slowed tapers, repeating each stage twice will also help. The DSNS one was partly developed for patients using enteric coated pred which at the time only came in 2.5 and 5mg and cannot be cut.

healthunlocked.com/pmrgcauk...

DL also has one

[Coffeebeans]

I think you have done exceptionally well. I started pred in January last year at 15mg and am now on 12mg. There has been some up.and down so I would say you have done well..

I would say you need to slow up now you have got down so low - just to be sure to avoid a flare.

Well done!

[HappyDiamonds in reply to Coffeebeans]

Thank you Coffeebeans, I am quite pleased especially as I feel well but this last drop has unnerved me and having got this far I'm not going to do anything silly.

[Raewynne]

I wouldn't drop 2.5 at this stage.I have just had a relapse at 9mgs and have had to increase.My head got really bad and my vision.Felt terrible.I have been getting chest pain too .I have seen my Dr.Rest was what I had to do.I think my relapse has come on through stress as I am trying to sell my home.Anxiety is a bad thing with prednisolone.

[HappyDiamonds in reply to Raewynne]

Hi Raewynne, I was very reluctant to drop this time but pleased that its monthly (or longer) from now on. Sorry to hear you are stressed, selling a house and moving is one of the most stressful things you can do so be kind to yourself and stay well. All the very best to you.

[Raewynne in reply to HappyDiamonds]

Thankyou.I just lost my husband 4months ago now and I didn't dare reduce my Pred.IT was a very tough year but I am still here.We have to be very careful with reducing that's for sure.

[HappyDiamonds in reply to Raewynne]

Im so very sorry as I understand fully what its like to lose your husband. Your loss and selling of your home so soon must be super stressful for you and I sincerely hope you have some support. Please take good care of yourself.

[Heron82]

Good morning, well done you do seem to have reduced very quickly, personally it taken from Nov 2019 to now to get from 60 to 12.5 mg. My doctor advised reducing in 0.5 mg amounts below 15 mg and doing this every 2 - 4 weeks depending on symptoms. I have been stuck at 12.5 mg since Dec with waking up aching at 3 and not sleeping etc. I split my dose to am and bedtime, and this has helped sleep wise, but I am fatigued and aching by 2pm and then bedtime. My advice to you would be to go more slowly, say 1 mg until 10 and then 0.5 mg and see how you get on. I wouldn't want to risk a flare as you do seem to have reduced very quickly.

I hope all goes well for you.

Best wishes

Heron

[PMRpro Ambassador in reply to Heron82]

Have you tried taking the second part of the dose about an hour before the symptoms return at 2pm? Often that is enough to carry you over to next morning.

[HappyDiamonds in reply to Heron82]

Hi Heron82, I think its quick but the Rheumy thinks its not quick enough!!! Digging my heals in now and slowing right down. Disturbed nights are awful but funnily enough Im sleeping like a baby and have to force myself out of bed these dark mornings. When I first started pred I used to get 5 hours sleep a night but now I could do 12 hours no problem but my Labrador wakes me for his breakfast 😂. Hopefully as you go lower you may find sleep easier.

[Hidden]

Hi. I have PMR/GCA and tapered very quickly in my first year from 80mg. I’m over 3 years on and after a short period with no steroids I’ve had 2 major flares. I’m currently on 5mg and feel well with limited energy, when it’s gone for the day it’s gone. I’m under pressure from Rheumatologist to reduce further but my GP, who I’ve seen more about this during this pandemic says 5mg is roughly what your body produces anyway, and can be taken long-term and she doesn’t seem too worried at all. My bloods are stable and I’m happy to remain on this dose for a while. I’m taking control now that I am educated thanks to this forum x

[HappyDiamonds in reply to Hidden]

Hi Sheffield-Karey, I would be happy to stay on 5mg should that be the best solution, glad its worked for you. Yes this forum arms us with all the necessary information to cope and be in control. I often wonder whether the Rheumy's think oh no another patient that is a member of HU PMR/GCA Forum! 😀