Prednisolone: Ive been on 15mg of prednisolone per... - LUPUS UK

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Prednisolone

DaftCat
DaftCat

Ive been on 15mg of prednisolone per day for the last week. Prior to that I had no symptoms and only knew I had Lupus because the rheumy told me I had.

I feel terrible! Tired and like I’m fighting off the flu. The timing makes me think it’s the steroids but I’m not sure. What is everyone’s experience of it?

18 Replies
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Wait. Why are you on prednisolone if you had no symptoms? How does your rheumatoid know you have lupus if you had no symptoms?

DaftCat
DaftCat in reply to miccika1

I have inflammatory arthritis and so the lupus result was as part of some tests. I was on hydroxy initially but couldn’t tolerate it. I’m on the prednisolone as a stop gap, I guess. Ive had a whole new batch of tests done and once they’re back I will be put on something else depending on how things are.

lupette
lupette in reply to DaftCat

You may have kidney involvement (This would show up on the bloodwork.) that doesn't cause any symptoms but still needs to be calmed down (usually with steroids) before you do get symptoms.

Is the pred helping the inflammatory arthritis symptoms? Or don't you have any of those either? You only need pred if you are symptomatic until a DMARD kicks in ...

Yes, for some people pred can cause fatigue - for others it makes them feel like super-person even though their body doesn't agree when they wizz around doing more than usual. You haven't had that effect have you?

DaftCat
DaftCat in reply to PMRpro

No, not wizzing around. The only way I can describe the feeling is as if I’ve got a head cold/blocked sinuses.

To be honest this is a new rheumy for me and I’m not sure I’m happy. I’m certainly not happy with a lupus diagnosis but hey ho.

My arthritis seems to be ok.

PMRpro
PMRpro in reply to DaftCat

Might be the pred - or it might be coincidence. I know - really helpful ...

DaftCat
DaftCat in reply to PMRpro

Please don’t worry, I’m just glad of the reply. I guess I just have to take each day as it comes

PMRpro
PMRpro in reply to DaftCat

That is very very true with any variety of autoimmune disease ...

It does seem wierd that you're on pred when u haven't got symptoms..I've been on it long term now but when I was originally prescribed it I was in hosp with an all over body rash..I started at 20mgs n this has been the protocol for me whenever I'm flaring.

What's the plan? Have u been told to reduce it after a couple of weeks? My usual treatment plan when I'm flaring is start in 20 mgs for two weeks n then reduce by 5mgs every two weeks . However I'm now on 10mgs daily long term!!

The usual side effects I get r irritability (angry at times), hunger n insomnia.

Do u have a rheumy nurse contact number? It might be an idea to give them a call n tell them about your symptoms..get some advice.

Or maybe u do have the flu?? 🤔

DaftCat
DaftCat in reply to Krazykat26

Hi Krazykat26. I’m on the prednisolone for a few weeks, will be starting to taper it down in a few days. I think he wanted to put me on something in the interim until all the latest blood results come back.

I was told I had Lupus about 4 weeks ago but he was quoting a blood test from Nov last year. (New rheumy, old one retired...)

Krazykat26
Krazykat26 in reply to DaftCat

Well it's good that you're on a reducing dose.. We're advised not to stop steroids suddenly..tapering is the way to do it.

Definitely keep a record of these symtoms though so u can tell your rheumy next time..if u note everything down it's easier when the appt comes to have some bullet points to refer to.

Maybe up your intake of vitamin C..won't do any harm n if u have got the flu..I'm sure u know the drill!! I find putting a few drops of eucalyptus on my pillow at night helps with breathing..if u do go on that route..put a few drops on the pillow n then turn it over..u still get the aroma but it won't be touching any skin. The other thing I find really helpful for general bunged up feeling is menthol crystals..cheap..very powerful..n lasts ages!! Put a small pinch in some boiled water n inhale the steam with BOTH EYES CLOSED...otherwise it stings the eyes!! U can get menthol crystals from the chemist.

Whatevers happening with u..u have to rest n relax as much as possible..your bod ain't happy n it's trying to heal itself!! A diagnosis of lupus is stressful in itself..I hadn't even heard of it when I was told...it's a lot to take in for sure!! Stress only makes it worse..which is why we just have to rest n relax as much as poss xx

DaftCat
DaftCat in reply to Krazykat26

Thank you so much for your reply x

Krazykat26
Krazykat26 in reply to DaftCat

You're welcome 🤗🤗🤗xx

Hm, you might just have a cold coincidentally when u took prednisolone. Very strange that you ate taking it w no previous symptoms thou. Blood test mean nothing without symptoms. What specific blood test came back so that your rheumatologist thought it requires medication w no symptoms? Some inflammatory markers? Or just autoantibodies? You don't treat a person that just has positive autoantibodies w no symptoms..

DaftCat
DaftCat in reply to miccika1

Initially I was put on hydroxy but I couldn’t tolerate it.

My last rheumy ordered some tests for lupus (seeing him for inflammatory arthritis). Several months passed, my appointment kept getting postponed until last month when I saw this new person who told me those results. I came away feeling worried and confused so I made an appointment to see someone privately and it was the same rheumy! 😂😂. My cousin had lupus so perhaps that has contributed to the reason of why I’ve been put on meds now? Even seeing him privately didn’t help as I still felt unreassured. I guess I wait for these new results..

Swelling and weight gain with headaches getting worse, but everything else getting better.

lupette
lupette in reply to lupette

Sorry I meant to add that those are my symptoms from a recent treatment with Prednisone. It was actually prescribed for my foot. I had some kind of skin condition for over a year. I treated with every kind of cream but it kept getting worse. Thankfully, the Prednisone worked and now it's improving. I took it 16 days starting with 40 mg's and continued for 4 days then 30 for 4 days then 20 for 4 days then 10 for 4 days.

DaftCat
DaftCat in reply to lupette

I’m glad to hear it helped. I felt a little better yesterday afternoon. I’ll just keep an eye on it x

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