Prednisolone side effects?: Having been on 40mg of... - PMRGCAuk

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Prednisolone side effects?

AnnS profile image
AnnS
20 Replies

Having been on 40mg of Prednisolone for 12 days now, I feel absolutely terrible and suspect a lot of it is now due to the drug. I have a racing heartbeat which goes up to 120 bpm every time I walk around. I'm also having serious head sweats and feel very spaced out but weirdly anxious at the same time.

Does anyone know if it's safe to take a beta blocker (Propranolol) with the Prednisolone?

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AnnS
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PMRpro profile image
PMRproAmbassador

Providing it has been prescribed by your doctor, yes. I'm on a low dose of a beta-blocker as well as an angiotensin-II antagonist with absolutely no problems at all.

Your symptoms are absolutely typical of high dose pred - it will improve as you get used to being on it and as the dose is reduced. It does get better - honestly.

SnazzyD profile image
SnazzyD

Yes, got all those on 40mg. My body did get more used to it after a few weeks, but still tough until it starts to drop.

AnnS profile image
AnnS

Oh thank you so much. It's really alarming feeling this awful so very reassured to know it's common with the steroid. You've really saved what's left of my credibility by avoiding yet another trip to A & E. My GP previously prescribed Propranolol to take just when I get occasional panic attacks, which I've had since my husband died. On those occasions, it's worked a treat and really calmed things down quickly so I'm going to try one now.

It's interesting to see how different people react to the steroids. For the entire first week of being on it, I didn't feel much different. My fever went away and the blood inflammation levels dropped quite dramatically but otherwise there was little improvement in symptoms. Then on day 8 I felt quite a lot better, but only for that day and the next day not so good again. It's not done anything to relieve the fatigue and weakness, it's not keeping me awake at night and I still don't have an appetite. Now today this drama with the heart rate and anxiety feeling.

Tomorrow I have to get to London for my temporal artery biopsy so that will be the next challenge. At the moment, it's hard enough to get as far as the kitchen!

SheffieldJane profile image
SheffieldJane

You've got the stress of the forthcoming procedure in the mix too. GCA and PMR thrive on stress, we just don't seem to have the resilience. All I can say is that I recognise all of those symptoms, particularly being dog tired and too alarmed to sleep or rest, with a banging heart. Propranolol is a great drug that just does what it says on the tin. If it's helped you before it will help you again. The deadly fatigue is the tricky symptom of both the disease and unfortunately Pred too. The only way to deal with it is by pacing your activities and having an afternoon rest/ sleep, for the duration.

I am sorry you've had the body blow of losing your husband. It must be so hard being ill without your other half. I hope the biopsy is not too bad. Remember, this too will pass.

AnnS profile image
AnnS

Thank you for those kind words Jane. As I have other autoimmune diseases I'm well used to staggering around and making the most of the things I can do. Although pain and fatigue is always present, "mind over matter" is usually my motto and up to now, the other conditions have been quite well controlled. This beast, however, is a completely different matter and it's completely wiped me out. I've really been ill and barely functioning for the past couple of months and have had to cancel absolutely everything except medical appointments. Actually I think I've had it for more than 2 years (long story) but when it was originally investigated, all the docs decided I didn't have it so I just accepted the fact that I seemed to age 20 years overnight and tried to carry on with my life. In retrospect, I'm probably extremely lucky the consequences haven't been worse because I realise now that my sight could have been threatened the whole time. My rheumatologist still doesn't think it's GCA because the symptoms are somewhat atypical but I do so we'll see if the biopsy helps with a definite diagnosis.

Yes it's very hard without the support of my husband. We battled through three years with his cancer and managed to still laugh pretty much every day, however horrible things got, and I miss his humour more than anything. However, I have since created a reasonably good life for myself with invitations to do some interesting things and indulge my passion for travel and photography. Now I just need my stupid body to co-operate.

In the meantime, thank goodness for the virtual world. This forum is a wealth of information and it's so good to be able to speak to people who really understand.

Hollyseden profile image
Hollyseden in reply to AnnS

Hello AnneS My Pred was upped to 60mg from 15mg last Wednesday. I did feel a bit weird/light headed/dizzy for a while after I took the dose. I also have trouble sleeping ( which can't all be blamed on pred) not good combined with the 'deadly fatigue' 😏 and my 2 year old granddaughter half the week, though she is the highlight of the week 😍 Today i had a crazy headsweat thing for a while I but it passed. Anyway I had the TAB on Monday and now awaiting results. Hope yours goes as smoothly as mine. Staff were brilliant and I even had a nurse holding my hand throughout which I found oddly comforting. Good luck and let us know you get on xx

AnnS profile image
AnnS

Thank you Holly and I'm sorry to hear you're going through the same thing. I can't imagine how you cope with a 2-year-old but I'm sure she lifts your spirits. Not looking forward to the biopsy but it will be the second time this year someone's taken a chunk out of my head. I had to have a punch biopsy for a strange and unexplained rash and that wasn't as bad as I'd expected so I'm sure it'll be fine. Probably the worst bit will be travelling home on a commuter train with an unsightly plaster on my head. Thanks very much for the advice and we'll compare biopsy results when we get them xx

Hollyseden profile image
Hollyseden in reply to AnnS

Coping with 2 year old much easier since Pred kicked in. Her grandpa had to be much more involved too and I do absolutely nothing on the evenings after she has gone home.😌

Ps I got a lovely skintone plaster which my hair covers quite well. Good luck tomorrow or should I say later today! x

Aleish profile image
Aleish

I'm in a beta blocker and was on it before the prednisone. It's fine.

Sho-Sho profile image
Sho-Sho

I started on 60mg for GCA, when I dropped to 40mg I felt really unwell, very anxious, massively fatigued. I had a great Doctor who explained this was all to be expected as a side effect of the pred plus the inflammation, heart racing. But as I very slowly reduced the pred so things improved but it can take some time. I am now on 12mg but has taken a year to get there. Everyone is different, it will get better but don't be in a rush, and my Consultant emphasised how important it is to rest and take it easy if you can.

Good luck.

AnnS profile image
AnnS in reply to Sho-Sho

Thank you for that. I really do feel horrible and if I hadn't been able to get such good advice on here, I would have made yet another trip to the hospital. This all happened in a bit of a rush and my consultant prescribed the Prednisolone just before going on holiday so we didn't have a proper discussion about likely side effects etc. I'm off for the biopsy today so will be glad to get that over and then I can just sit here... and carry on feeling weird.

Janann25 profile image
Janann25

I know just how you're feeling! Like you, I was prescribed 40mg Pred and the symptoms/side effects were REALLY frightening - sweats, dizziness, tinnitus - and thought it was an escalation of the illness. Luckily, I knew that I would get good advice from the lovely people on this forum and I'm so pleased to be able to reassure you that the symptoms do ease. I had a few weeks of not being able to,drive - but couldn't walk far either in case I fell over!!! But I can do most things now - just not as quickly as I used to😄 I've now tapered to 29mg and am still reducing by 1 mg steps at whatever speed my body accepts. So, please don't worry, you WILL improve.

AnnS profile image
AnnS

Thank you for this. Had I not been able to get such good advice I think I would have taken another trip to the hospital. Like you, I thought it might be an escalation of the illness. I had the excessive head sweats before I started taking the drug, then they stopped, now they're back with a vengeance. Then last night was the first time I found it hard to sleep, with the pounding heart etc. So it's very welcome to confirm what's causing it and to hear that things will ease. My life has been totally paralysed for the past few weeks so I just want to be able to do something... anything really... and don't care if I have to do it very slowly. I'm supposed to taper to 35 mg tomorrow, after just 2 weeks, and I'm not sure I should because I'm still getting some head and jaw pain. I've left a message for my consultant to call me tomorrow so let's hope he does, otherwise I won't know what to do. That'll be tomorrow's project, to keep pestering him!

Hollyseden profile image
Hollyseden

Surprised you've been told to taper already. I was told to stay on 60mg until results of TAB come through and you are only getting yours done today.

AnnS profile image
AnnS in reply to Hollyseden

My consultant went on holiday, leaving his secretary to organise the TAB, and thought it would be done sooner. The surgeon's really dragged his feet and I'm not happy because any evidence is fast disappearing. Tomorrow I will have been on the steroids for 2 weeks.

Hollyseden profile image
Hollyseden

Poor you. More stress when you least need it. Maybe one of the aunties on here will advise re taper. I wouldn't want to do that until results are through and seen doc or rheumatologist. To quote sometime on this great forum "gentle hugs"

sondya profile image
sondya

I asked my GP and the Rheumatologist to share their case notes with me. Also that they explained in detail what was happening, what ill-effects were being caused by the disorder (GCA) and what were the side-effects of the drugs. This was to help me understand and how to cope. Invaluable. They were more than happy to do this. My mantra became 'blame it on Prednisone'. It's a wonder drug but comes with a mission statement 'You Will Suffer'!! I am now on 6mg per day; each time there is a reduction there is an inner-battle and feel crap for about six days, then it settles - for the better! Today is day seven. I woke this morning and felt like I never have since first diagnosed in December. Out on the deck, taking photos of the sun rising; a video of the dawn chorus. Not only has spring arrived (NZ), even my taste buds have returned to normal, I enjoyed my coffee!

Empathise with your apprehension - but keep going! All the best. Cheers.

AnnS profile image
AnnS in reply to sondya

This is really encouraging, thank you. I can cope with pretty much anything providing I understand what's going on and I need to get to grips with what's causing what because its all been really frightening. I can SO imagine the pure joy of being able to look outwards and enjoy your surroundings again. And the coffee! At the moment it tastes like washing up water but you reassure me it won't be forever.

AnnS profile image
AnnS

At last, I have a positive update. I went for the TAB today and instead of the planned quick procedure, they kept me at the hospital all day. The surgeon, who I'd felt was a bit 'distant' during my pre-op consultation was extremely kind and really slipped into gear when I told him what had been going on, how terrible I feel and how I haven't been able to get the advice I've needed. He immediately went away to phone my rheumatologist and came back with a message that he's very sorry I've had such poor care, I'm to e-mail him with all the details tonight, and he will phone me tomorrow to tell me exactly what to do next.

The biopsy itself was fine and I think just to calm me down, they let me try out a new operating gown that they've just started using which they pump up with warm air and it envelopes you in a cloud of fabulous comfort. The surgeon just sat patiently waiting to operate while we played with the gown and actually, it was all rather fun. Just a slight emergency a bit later when the feeling returned and my right eyebrow was completely paralysed with a drooping eye - another delay of 2 hours while they phoned the surgeon who by then had gone home - but I'm relieved to report that an hour ago, it resolved and my face is now fully functioning again, with no pain whatsoever from the procedure.

Really ladies, I can't thank you enough for your support. You've been so helpful with sound advice and information whilst the medics have been a bit of a dismal failure. To be fair though, I think a number of factors have caused the muddle, mainly that my rheumatologist is 50 miles away in London, went on a week's holiday expecting the TAB to be organised sooner, the locals wouldn't take over my care without referring to him and for some reason, his office couldn't, or wouldn't, contact him when I called on Tuesday asking for help. Normally I receive superb care from him so hopefully we'll get back on track tomorrow.

Thank you all, once again.

cycli profile image
cycli

Hi Ann. Yes, as others have said, if prescribed then fine. I am on bisoprolol beta blocker. I'm only taking 7.5mg. Was on 40mg pred. for a flare. now down to 23mg. Feeling much better on lower dose. You'll find it varies and there is a level where you feel almost normal, but it changes. Good luck and keep on keeping on.

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