Prednisolone: I have just had / having a flare... - Vasculitis UK

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Prednisolone

jackrussell profile image
19 Replies

I have just had / having a flare and as it is affecting my sinuses have been prescibed antibiotics by my Rhuemy who I rang for advice, I was taking these for 7 days , at the same time I had been prescribed 30mcg Prednisolone for 7 days, now taking 20 mcg for 7 days then onto 10 mcg for 7 days and finally 5mcg for 7days. However I am getting a very irregular heart beat, I feel as if my heart is pounding one minute then almost stopping the next ,I can also feel a pulsating sensation in the front of my neck and it feels " very odd " I don,t feel dizzy or faint and I do feel I,m improving ----- except for the very uncomfortable and rather frightening change of heart rythm. My blood pressure which is usually around 134 / 90 ( I am not on blood pressure tablets ) has been , over the last 2/3 days sometimes around 157/ 116. then later goes to 90/55 and also 137 /95. Of course it being a weekend isn,t helping, so just wondered if anyone knows if this is likely to be the steroids , and has anyone had similar problems.I haven,t had this problem before on Prednisolone, and am not taking any other medication for Vasculitis. Thankyou for any advice.

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19 Replies
PMRpro profile image
PMRpro

It is a known effect of pred and especially at higher doses - high is above 20mg (I assume you mean mg not mcg since there is a factor of 1000 difference). If you didn't have any problem previously I think you have to accept it until the dose goes down - if it continues past finishing the pred then query it and it isn't always due to pred, pred gets blamed for a lot of things that it is in fact innocent of!

Some people find it helps to split the dose and take half or 2/3 in the morning andthe rest late afternoon. Theoretically it is best to take all the dose of pred in the morning which reduces some of the side effects such as adrenal suppression and sleep disturbance but it is practically more important to find what suits you best.

jackrussell profile image
jackrussell in reply toPMRpro

Thankyou PMRpro I thought it must be the steroids but its always good to be able to get an answer from those of us that are " in the same boat ". and of course you are right on the dosage . ( the extra I added on could be the reason my heart is objecting .HO HO.)

orsen-trapp profile image
orsen-trapp

Yes, it does feel very odd, doesn't it? I'm used to it after a year and a half. Elsewhere I've seen folk attributing this to Pred. but I had it before any medication (apart from oodles of IV antibiotics as my Takayasu's looked like pneumonia/septicaemia/heart failure). I expect Keyes will be along soon to give you chapter and verse (ie a proper explanation)!

*Oodles: medical term for 'pumping as much in as the veins will take, one variety after another because nothing's working and we haven't a clue what's going on ...'

PMRpro profile image
PMRpro in reply toorsen-trapp

Yes - that's what I keep saying: I had it for about 4 or 5 years before pred so when it happened while on pred I was fairly sure it wasn't. The cardiologist says it is the autoimmune disorder that did the damage to the heart's electrical system. Don't care much about the how or why - but decidedly relieved he found a way of managing it!

orsen-trapp profile image
orsen-trapp in reply toPMRpro

Oh, right, that would make sense as it started for me when autoimmune inflammation got out of control and I'd been pretty ill for 8 months by then. Hadn't realised the autoimmune stuff could damage the electrics, too :P

How do you deal with it?

PMRpro profile image
PMRpro in reply toorsen-trapp

I'm on bisoprolol and Losartan for the raised BP and propafenone as an anti-arrythmic. I started on 2x whatever the dose is (sorry, not to hand) but was told to take another 1/2 tablet late afternoon as I was still having short episodes of a/f late evening. Seems to have done the trick - and I certainly notice it if I forget the 1/2 tablet (which happens on a regular basis as it is at a stupid time!). Early morning and before bed is easy but there is nothing to associate that 1/2 tablet with. Oh - and an anticoagulant of course and that is really the most important thing for anyone with an arrythmia or tachycardia.

The autoimmune stuff can have a go at pretty much anything in the body it seems ;-)

orsen-trapp profile image
orsen-trapp in reply toPMRpro

Hmm, I think I'll just put up with it then. Not taking any more meds!!!

PMRpro profile image
PMRpro in reply toorsen-trapp

That's fine as long as you are on an anticoagulant (also a drug but there you are).

Hate to be so depressing but arrythmias are a leading cause of stroke - clots form in the base of the ventricles and are dislodged by the irregular beating of the heart with all too often the usual result. When they found my husband also has exercise-induced a/f during a routine ergometer stress test he was only allowed home (on his birthday) because he was already on warfarin. Actually he should be fine - he doesn't normally exercise...

babssara profile image
babssara in reply toPMRpro

Hi - very interesting. When I took my tumble downstairs last December and shattered humurus it was not known at that time that I had brittle bones. Surprised when ortho surgeon told me after op. BP went extremely low even whilst in hospital (nurses kept making me drink plenty of water before they took my reading to try and get it back up). When I got home kept blacking out through balance and dizziness. GP tried everything but steroids because of my brittle shattered arm. Concerned about healing process. After 3 weeks he said sorry Barbara I can't hold off any longer as "BP through your boots" so put me on Flourinef for a month and increased sodium. My BP is brilliant now, but back on Pred 60mgs as just diagnosed GCA/Palindromic Rhuematism/Vasculitis/Raynaud's. Can't win at the moment can we? Take care. Babs x

in reply toorsen-trapp

AF, ectopic beats, tachycardia and abnormal rhythms are very common in ITU patients as well orsen-trap. Severe illness, sepsis, inflammation etc can all " upset " the heart. We usually give drugs to restore normal rhythm but once the underlying problem is dealt with most patients hearts return to normal.

in reply toorsen-trapp

Lol orsen-trap, PMRpro beat me to it!

Hi jackrussell,

What type of Vasculitis do you have? The reason I ask is that some types can affect the heart. It probably is the prednisolone but may be the affects of a flare as well.

Are you in remission that you don't take medication for your Vasculitis and is there a plan to deal with this flare if the prednisolone doesn't calm things down?

cgarmstr profile image
cgarmstr

I have atrial fibrillation, which was almost certainly caused by my Wegeners Disease. One thing that is really important is to be on an anticoagulant drug. The irregular heartbeat leads to stagnant blood in the heart and clots, which can cause strokes. Unrecognised irregular heart rhythms are a leading cause of strokes in relatively young people (60+). See atrialfibrillation.org.uk

PMRpro profile image
PMRpro in reply tocgarmstr

I hadn't seen this when I wrote my post a few minutes ago!

But there is a theme developing here orsen-trapp!!!!!!

in reply toPMRpro

Anti coagulation is only needed when there is ongoing Atrial fibrillation, not occasional ectopics etc.

PMRpro profile image
PMRpro in reply to

Oh yes, occasional ectopics is a different thing - but occasional ectopics don't usually cause noticeable palpitations and other symptoms such as tightness or feeling faint - arrythmias do.

It depends on the healthcare professional too - some doctors give warfarin for a few months after an a/f episode, here it is standardon a permanent basis - on the grounds you don't know in advance if it is going to progress and a/f does usually get worse with age (not sure about other arrythmias).

People seem very upset about being on rat poison - doesn't bother either of us at all and we're not switching to the new stuff. At least there is an antidote in the event of bleeding...

in reply toPMRpro

In my experience ongoing anti coagulation is standard for AF in Scotland.

I can't think of any other arrhythmias that are anti coagulated except perhaps atrial flutter. Paroxysmal AF is not usually medicated unless the episodes are frequent and then the first line treatment is a beta blocker, you would need to be having fairly regular, protracted episodes to be anti coagulated for it.

Have you ever been offered ablation as a cure?

PMRpro profile image
PMRpro in reply to

That's what I mean - here paroxysmal is also anticoagulated since you don't know when/for how long an episode will occur. When it is found they keep a close eye on you even if you are asymptomatic - they are very risk averse here.

No, ablation was discussed. The cardiologist said they rarely do it except as a last resort since it simply doesn't provide the majority of patients with a lasting result and there are considerable risks associated with it anyway. It would be considered if medication didn't control it well - it does, I have no side effects I am aware of now I've tweaked the bisoprolol/losartan dose so my BP isn't hovering around 100/60 and below for much of the day! That was probably the loss of weight after the original titration of the dose.

The original single tablet option for management had to be dropped after I developed the most amazingly itchy rash that started round my ribs and then spread down my arms, a few inches a day! Big red label on my notes now but I can't for the life of me remember what it was! But the propafenone was there from the start I think - the betablocker wasn't enough on its own. Either that or a few low doses has fewer problems than one big - I've certainly never had any of the side effects most people complain of.

JontyW profile image
JontyW

I have just read the link provided about AF, and was very surprised to read this about patients stopping taking the anticoagulation medication within ONE year ...

atrialfibrillation.org.uk/f...

"Persistence with OAC therapy is low, with up to 60% of AF patients on OAC therapy discontinuing medication within the first year.

All too often patients do not understand or are not told why they have been prescribed oral anticoagulation. Symptoms of AF do not go away by taking anticoagulation drugs so often patients stop taking them as they feel no difference. If you were given paracetamol and your headache did not go away, you would stop taking it. If we want to achieve good adherence to OAC therapy, we must improve the information we provide to patients about the purpose of treatment and stress the critical importance of adhering to the treatment prescribed”.

Surely this cannot be correct, since there aren't any symptoms of AF are there? Also once started on Warfarin, the GP would always follow up with regular INR tests to check Warfarin level is in the required range?

What is your experience of this?

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