Prednisone Tapering-what's going on?

[RaisinBran]

Some of you have followed my posts for a while. Last post I spoke about yoyoing up and down, but each time I have tried to increased my dose temporarily 5mg, it seems I'm stuck there and can't even taper back down 1mg to get back to where I was previously before the temporary increase. I am currently at 8mg now and my rheumy wants me down to 3mg before our next visit in October or he will either put me on Methotrexate or an injection called Razara. Help!

[SnazzyD]

if it were me and I had had so many ups and downs, I’d do 0.5mg per month. It would hopefully avoid leapfrogging over your ideal dose and give your body some much needed stability. Are you also pushing yourself in your daily life or going through some stress?

[RaisinBran in reply to SnazzyD]

Yes I am! Yesterday I drove 14 hours round trip to see an electrophysiologist in NYC for a much need final decision to get a pacemaker, which I really hoped I didn't need. Also, my wife was just diagnosed with mild cognitive disorder which I am very worried about.

[DorsetLady PMRGCAuk volunteer in reply to RaisinBran]

No wonder you are stressed then… so in your shoes wouldn’t be thinking about reducing any time soon.. and there’s a long time before now and October.

Just concentrate on feeling better in yourself -as well as your wife’s health for now.

[RaisinBran in reply to DorsetLady]

Thank you so much for those kind thoughts DL

[SnazzyD in reply to RaisinBran]

Goodness! That would do it. Even more need to put your Pred plans into context! Reducing now is not likely to be ideal but if you must, do it really slowly; not the standard flare regime.

[PMRpro Ambassador in reply to RaisinBran]

Are you to get a pacemaker? How long must you wait? Honestly - with all that going on, the last thing on my mind would be reducing pred whatever your rheumy is threatening to do, You probably need pred on Sick Day Rules at present!

[RaisinBran in reply to PMRpro]

I am mtg with the Pacemaker Doctor on the 27th of March. Probably scheduled a week or two after that. I have no other symptoms other than nocturnal pauses occasionally of 6-8 seconds of heart not beating.

[PMRpro Ambassador in reply to RaisinBran]

Such fun - my 7 second pauses were during the day - not a good look!!! Especially if you are standing at the time ...

[RaisinBran in reply to PMRpro]

Pro-Have you had any issues with your PM? How long have you had it? Single or dual chamber? Do you feel better? Did you get it for AFIB? I have a slow heart rate. It gets as low as 29 while sleeping, have had it for years but no effect while awake. Sorry for jumping all over this with you, but I am not a fan of having it put in if I am feeling fine throughout the day.

[PMRpro Ambassador in reply to RaisinBran]

Haven't a clue whether it is single or dual chamber - I got what they decided was appropriate! Mine was as a result of having brad/tachy episodes with my a/fib. I was having occasional waves of faintness which I had flagged up to them but they never saw it so couldn't do anything - this was more than 7 years ago and they hadn't yet got the multi-day continuous loop monitors and a single 24 hour one wasn't long enough. I was literally about to book an appointment for one when I happened to be standing when I had an episode - fell and hit my head AND had a TGA (transient global amnesia) at the same time. I was agitated when I arrived in the ED and they gave me i.v. diazepam - bad move in one way as I react badly to it and develop a/fib but that had its advantages because it induced the brady/tachys and they saw I was having 7 second pauses.

You may have a low heart rate that is livable with now - 29 overnight is not too bad in the great scheme of things. But it is likely to progress, and your overnight oxygen supply to the brain and heart is probably less than optimal already. All it needs is one of those pauses to happen when you are standing, on the way to the bathroom at night perhaps, and a fall from standing if you hit your head can be very bad news at any age, even more at our age and on anticoagulant therapy for a/fib. A friend had a dizzy spell outside their bathroom, just at the top of their stairs. He fell, broke his neck at C3/C4 and is quadriplegic. If accepting a PM protects me from that - thank goodness is all I can say it was on offer.

I have no problem with mine at all - I've had it about 7 or 8 years, they have been able to medicate the a/fib effectively without having to worry about bradycardia because of too much medication. Even I have to think about where it is when it gets its annual check and the nurse is looking for it to place the monitor. It was a bit sore for a few days - mostly because here we are transported to and from the regional cath lab having been admitted to the local hospital. There was a long wait for transport back and the local anaesthetic was wearing off. The ambo driver was obviously practising for Monza, overtaking every truck up the Brenner motorway and pulling in after each so there was a lot of movement so I was in a lot of pain by the time I got back - adequate pain relief post-op is essential! Other than that - no problems at all but the security of knowing there won't be any extra slow episodes! I had had 3 TGAs before that final one and the cardiologist was confident they had been due to extra long pauses and that I wouldn't have another with the PM. So far I haven't.

[RaisinBran in reply to PMRpro]

Wow!!! Thank you Pro for sharing that with me. You have given me a new perspective to put into the mix of things. Other than the 7-8 second pauses during sleep, I haven’t had any episodes of dizziness or fainting during my waking hours. You have helped me in making the decision to get a PM !😇

[Viv54 in reply to SnazzyD]

Sorry for jumping in Snazzy D, but you have been so helpful to me in the past. I'm now doing the 0.5 taper per month/ 5 weeks seems for the first time it's working for me. Good advice for a lot of people.🌹

[PMRpro Ambassador]

I think you mean Kevzara - recently approved in the USA for PMR. It is basically the same as Actemra - and it has had a great effect on my symptoms and I have got from nearly 20mg pred to 6mg. No problems with the PMR- it's those pesky adrenal glands that are protesting!

[RaisinBran in reply to PMRpro]

Yes! Does it help with prodding the Adrenals? I really haven't any PMR pain to speak of, but I do cramp up in my legs 2-3 times a week. Is cramping part of PMR?

[SnazzyD in reply to RaisinBran]

No it doesn’t in any way.

[PMRpro Ambassador in reply to RaisinBran]

No, doesn't prod the adrenals except for allowing you to stay at a low enough dose of pred without the PMR waking up.

Leg cramps aren't really part of PMR, more associated with being on pred, though I did get foot cramps long before being on pred. Pred makes you lose magnesium and calcium through the kidneys so it might be worth trying magnesium supplements.

[Missus835]

My rheumy has me tapering 2.5 mg per week. At 12.5 right now. When I reach 10 it will be cutting back by 1 mg per month. She has threatened to cut off my pred if I don't follow her regimen. There are names for women like this. The pills are counted in the prescription. My GP had put me up to 20 mg in November because of a flare. Then this ruddy rheumy got involved. She said "Your PMR is probably not even active now, if you ever had it in the first place". She is not the one who diagnosed it in Jan. 2022. It was my Neurologist. She has severe ego issues.

[RaisinBran]

Wow! TY