Steroids

[sharonnorfolk]

I have been on prednisolone since Feb. Just reduced to 40. I am really suffering with side effects, they have really knocked me off my feet for the last 4 weeks. Any suggestions of how to cope?

[lesley2015]

Hi Sharronnorfolk

Poor you, the side effects are awful. All I can say is rest when you need to, dont apologise for being poorly or not being able to do all the things you could do before, say no when you need to. If sleep is a problem, get up and read have a warm drink and try again, dont get to frustrated. Keep plenty of fruit and veg to hand to reduce weight gain, the constant hunger can be difficult, but weight gain will make you feel worse (speaking from experience!)

Dobt reduce too quickly, steady and slow.

Things well get better as you reduce your dose ..... above all be kind to yourself, you will find 'you' again.

Just a few things that came to mind, I am sure others will have more advice.

Very best wishes

[sharonnorfolk in reply to lesley2015]

Thanks for the reply, it has made me feel better already. I must stop telling myself to pull my socks up and get on with it i.e be kinder to myself. I know the importance of the pills as the alternatives are "YUK". My mother was blind (not because of GCA) and that is something I will avoid at all costs. Nice to know what I am feeling is "normal"!!!!

[Soraya_PMR]

Hi sharonnorfolk welcome to the forum.

Maybe a little more info? Start dose? Reduced to 40 from what?

What side effects?

[PMRpro Ambassador]

What do you find the worst problems? Tell us and we'll impart our secrets!!

I assume still at 40mg you are suspected of having GCA - just hold on to the fact it is protecting your sight. There is no side effect of pred that is worse than being blind. And it will get better - I prmise. Perhaps not in the next few weeks but in 6 months you will look back and see how far you have come.

[DorsetLady PMRGCAuk volunteer]

Hi Sharon,

What in particular? You tell us what, and someone will have an answer.

[sharonnorfolk in reply to DorsetLady]

Side effects- seem to be- you name it I have it. Pouring with sweat, sickness, stomach pains, tinnitus, tight bands around and over the head, weak/ wobbly legs, hard to concentrate ( have had to give up on my knitting).

[DorsetLady PMRGCAuk volunteer in reply to sharonnorfolk]

Hi Sharon,

Sorry to hear that. The sweating, wobbly legs and lack of concentration can be attributed to both the Pred and the illness unfortunately. Not sure about the tinnitus personally but it has been mentioned on here occasionally. For all of these it might be worth searching for previous posts on the subject (just type in SEARCH box). If you also look at related posts on right hand side of screen there is “steroids and sweating” listed.

Stomach pains - are you on uncoated tablets? If so you should also be on a PPI - Omeprazole, Lansoprozole or similar - that should help. Or request the non enteric coated variety from doctor - he needs to be aware.

Head pains - must admit I a bit concerned about those, have you had them all the time? I had similar pre diagnosis, but once on Pred they went. If you still have them you might need a bigger dose - not what you want to hear I know, but might be necessary.

You can get some answers on here, but think you need to get back to GP re stomach and head pains.

Please let us know how you get on.

[sharonnorfolk in reply to DorsetLady]

Thanks Dorsetlady. I had to have the Lansaprozol changed to Renitidine plus esamorl(probably spelt incorrectly). They changed the Prednisolone to enteric coated so that they dissolved further down. These are ""helping!!". I was wondering if I should go back to the GP as I seem to have lost my voice for the last 2 weeks.(very careless of me I know)

[DorsetLady PMRGCAuk volunteer in reply to sharonnorfolk]

Yes, how remiss of you 🤔!

Don’t know that it connected to your illness, but there do seem to be so many nasties going around, it could be anything. I’ve had a tickly cough and a bit of a sore throat the last couple of days, nothing to get excited about, but just a nuisance.

Best get your voice check though!

[PMRpro Ambassador in reply to sharonnorfolk]

I didn't lose my voice completely but I DID have a very long period where it was very hoarse. It improved after I went on pred - and in retrospect it was very possibly a symptom of GCA/LVV affecting the blood supply in that area. Sore throat is listed for GCA. With the other things you mention...

[SheffieldJane]

It would be helpful if you listed the particular side effects that you are troubled by. Some of us have found solutions to some of the side effects or have ideas that make them less troublesome. They do seem to get better as you reduce your dose.

[sondya]

Prednisone - wonder drug. Ghastly side-effects but it is saving you. Advice to me was 'blame everything on prednisone and grin and bear it'. It stopped me grumbling.

In time, it will go. I've almost forgotten what I went through.

[Rose1bud]

I started on 60mg also suffered side effects with lack of sleep bloating cramp and foggy head but eventually it all settled down apart from foggy head am now down to 4mg and reducing very slowly

[tgca]

Hi Sharon, my first reaction to my first dose of steroids (30mg) for GCA was wow, the pain has vanished!! I then had awful nights of sleeplessness and extra energy. As the dose became reduced, life became more-ish normal-ish but do be careful of dizziness... I fell out of my parked car and ended up on a gravelly drive, my face covered in stones and blood and I think I passed out. So, it all gets better as the meds reduce so take care and take heart and watch this site like a hawk!

[sharonnorfolk in reply to tgca]

Thanks for that, I was on 55mg but I am now down to 40mg. As you say dizziness is a problem also weakness so at the moment I am not driving. I have been on the lower dose for 2 weeks now and I am just starting to get an hour in the mornings and at about 10.00p.m. where I am beginning to have a break from the side effects. Yippee!

[Snowy12]

Hi Sharonnorfolk. I’m going through the same as you did at moment started on 60 down to 45 but continual head pain it has eased but hasn’t gone. Terribly muddled, night sweats, thrush in throat, moon face, sleeping around 4 hours now but still exhausted.

Did you ever come out the other side I’d love to know how you are now?