Is this normal with Pred?

[Janeval]

After reducing to 3mg Pred ( for GCA) before Xmas, then having a flare & back up to 25mg I am struggling. I feel constantly tired, no energy, not sleeping well atall ( is that the increase in Pred?) & am getting more palpitations than before. I just feel yuk! Is this normal after having to increase the Pred? I'm due a cataract op on Sunday so am not reducing until after that but am just going I'm ok to have it done. Any advice or anyone in similar situation?

[PMRpro Ambassador]

My question is whether you needed to return to 25mg for a flare of symptoms - had everything been OK previous to the reduction to 3mg? You aren't reducing relentlessly to zero you are looking for the lowest effective dose and maybe you were tapering too fast and overshot the dose you needed? Maybe 10mg would have been plenty?

But that dose will be plenty to mess up your sleep, and if the pred is causing the palpitations and they are lasting a long time, they alone can leave you feeling really rubbish. Have the palpitations been checked out in case you need arrythmia medication - above all an anticoagulant to reduce the risk of stroke?

[Janeval in reply to PMRpro]

I originally upped my dose to 8mg, then to 15 but had to keep going up as my GCA symptons were not going away- this was around Christmas -i posted on here about it- spoke to 111 Doc, ended up in A & E & then ended up seeing a private Consultant. I was tapering very slowly , was fine, but yes, the private Con i saw said that i maybe shouldn't have gone down below 5mg. No, my palpitations haven't been checked out- you have me worried now.

I am beginning to wonder if it's safe for me to have my Cataract op on this dose of Pred, but i did tell them a few weeks ago. I'll give them a call this p.m. to see what they say.

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Please check re cataract… it will be safe, but they worry about healing process… Pred may hamper that.

[Janeval in reply to DorsetLady]

Thank you- I did read about that & did wonder. I'll call them now

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Hope they will still do it, but perhaps be prepared that they may want to postpone and reschedule.,

[Janeval in reply to DorsetLady]

I've phoned them- waiting for them to call me back but yes, im quite prepared for them to cancel tbh!

[PMRpro Ambassador in reply to Janeval]

Hope they don't but they will have their reasons if they do.

It is just having had an arrythmia since the start of PMR - which is almost certainly what caused it - I am rather concerned at the way UK GPs dismiss palpitations. But when they are frequent, especially if at the same time you are struggling with poor sleep due to pred, then the rest of the treatment options may make a big difference. The bivalent Covid jab woke mine up bigtime - I was struggling to function, even cooking for myself was difficult as I couldn't stand long without feeling dizzy, can't cook while walking around which was better! And it was always worse at night so I couldn't sleep.

[Janeval in reply to PMRpro]

Actually I did go to see the Doc about it- about 6 weeks ago but only saw a health's assistant who did an ecg & I'm on the 'waiting list' to get monitored overnight ( waiting for the machine). I'll chase them up about this.

[Jakey67 in reply to Janeval]

Worth chasing up. I had a similar experience and had the monitor for 48 hours. A GP talked me through results which did show some anomalies ( which she described as minor) but to be on safe side referred to cardiologist whom I’m waiting to see. I would push on the monitor it’s key to getting it looked at properly. ECG is not as effective, short term and not as sensitive.

[Janeval in reply to Jakey67]

Thank you for that. I do need to chase it up as I think these days if you don't do that they just forget about it!

[Purplegloss in reply to Janeval]

I have recently been on this site about palpitations, and very low pred dose I was on at the time 2.25mg. This it seems has caused me lots of problems, and I now plan to stay on 5mg maintenance dose. I have had an ECG, which was ok, and at the moment on the NHS in my area there is a 2 month wait for the 24hr heart monitor I am going to have fitted on the 10th March followed by an 8 week result back from the cardiology department at the Hospital, so good luck with trying to get it earlier.

[PMRpro Ambassador in reply to Jakey67]

I always liken it to an ECG being the picture - the monitor is the CCTV! Have to have the criminal in the picture and that may not happen with a simple ECG!

[DorsetLady PMRGCAuk volunteer]

Sleep issues most definitely can be laid at Pred’s door, also the palpitations, and maybe the lack of energy etc, but that can also be the underlying disease.

What symptoms did you have? And who suggest going up to 25mg? And how long have you been at that dose? Guessing longer than the usual 14 days that we suggest in flare protocol.

Probably sensible to stay at that dose with cataract procedure coming up, but not sure surgeon will be happy…but you’ll have to see.

After that then you need to think about tapering - obviously not too quickly as you’ve been at 25mg for some time..

Good luck.and come back to us when you’re ready to taper again.

[PMRpro Ambassador in reply to DorsetLady]

Yes - forgot to mention the cataract op - maybe check with the surgeon about that.

[Janeval in reply to DorsetLady]

Would you suggest tapering by 2.5mg at a time? My Doc & the private Consultant said 5mg but I feel that is too much as I've been on 25mg for over a month now

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Yes I would go for 2.5mg - in my view 5mg might be too much [so no point in pushing yourself] .. have replied about cataract further up…😊

[Janeval in reply to DorsetLady]

Thank you DL. I really want to reduce & get down to at least 10mg- really fed up with this & last time I didn't put on weight or get any bloating, but this time my face is all puffed up & even though im very careful about what I eat, I'm putting weight on. It's all making me feel very low at the moment as I was doing so well & was beginning to feel 'normal' again.

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Very disheartening… but sometimes it happens just as you think everything going along smoothly.. think it’s called life! But a right pain nevertheless. 🌸 hope you can get back on track asap.

[Janeval in reply to DorsetLady]

Thank you DL🙂

[PMRpro Ambassador in reply to Janeval]

You could TRY 5mg down to 15, gets you lower quicker. Certainly to 20mg.

[Janeval in reply to PMRpro]

I'll wait to see if I have the Cataract op first!

[Angelsmummy]

Sorry for your problems J.I had to go from 4.5 to 15 mg because of flare and stetoid induced adrenal insufficiency.I feel lousy,a drop in blood pressure ,tachycardia,sleeplessness and anxiety.The increased dose has certainly made me feel awful.almost forgotten what it can do to us!Hope you can get to a lower dose soon and best tell dr about what is going on eh?

[Janeval in reply to Angelsmummy]

Good to hear I'm not alone in this- that's just how I feel- lousy. Can't put my finger on how, but everything you said & generally not right atall.

[Angelsmummy]

Isnt it lucky that we have somebody to talk to on the forum.Go bl@@@@ crazy without it!Keep your chin up J,we will get there in the end!xxx 💐💐😜

[Janeval in reply to Angelsmummy]

Yes it is, as the advice- our rather lack of advice- we get from the medical 'professionals' is either non existent or they have no idea what you're taking about!

[Angelsmummy in reply to Janeval]

That’s the one!Scarecthe life out of me sometimes they do,and stress is the last thing I want at present.Just go with the flow J and really hope you get your cataract op done!Quite painless procedure but really weird when they take your own lens out them BAM ,the new one goes in and it is like magic!Wish they could devise an eye transplant for us blindies!Let us know how you get on won’t you eh?xx💐😜

[Janeval in reply to Angelsmummy]

Will do😊

[Ann1A]

I can't add to advice, you already have it from the best, but I can answer your question, yes I have the exact same feelings of exhaustion, lack of energy or even motivation, body feels like lead to drag around and sleepless, 5 hours unbroken is the best I ever get, usually i have a two or sometimes three hour wakeful period in the middle . I've learnt to not stress about the sleep, I tell myself I'm safe, warm, well fed and no-one is bombing me, and I relax and read a book. Good luck with the op., and the doctors!

[Janeval in reply to Ann1A]

Thing is, i didn't feel as bad as this the first time I was in this dose, it's since I had the flare & had to increase. Just hope I can reduce without problems this time🤞Yes, you're right about the sleep but it makes my days so much harder to cope with when I'm so tired!

[Ann1A]

I know. I hope that, since you've done it before, you've every chance of reducing slowly and effectively again.