Prednisolone

[Marley]

I’m trying to control a flare with increasing levels of Prednisolone ( under supervision of consultant). I’ve just had an appointment and the suggestion was to go up to 40mgs. I decided that was a bit much and am trying 30mgs to start with (executive decision!). I’m possibly feeling less well at the moment. It just occurred to me that once I went over 20mgs I did in fact get worse - hence I felt the need to keep increasing. Am I going mad or has anyone else felt worse as a result of increasing the dose? Wondering if I should just go back to 20mgs and be more patient.

[Tanitani]

After how long did you start feeling worse?

[Marley in reply to Tanitani]

4 or 5 days. Sometimes I’d improve a bit first then go backwards.

[DocMartin]

Have you considered the time when you take prednisolone? Take medical advice on whether you take the bigger doses divided ie twice daily or 8hourly and, especially, on when to take prenisionoe as reducing. Research indicates evening/bedtime does, some over weeks or months, result in symptoms from evening doses eg need to pass urine at night and insomnia. When reducing evening/bedtime intake should be reduced first and slowly to reduce potentail problems with developing dependance on prednisolne rather than "natural" cortisone.

[Feelgoodbooks]

My first 8 days of prednisolone I felt rough. I was given 15mg to statt with. And I felt worst than I was before. I wanted to quit so many times. To just stop it. I got worst fatigue, worst pain, my mental health declined, I just felt rough. I unfortunately couldn't contact my rheumathologist so I stuck with it, and said I would tey for 2 weeks, if it continued I would wean it off quicker than prescribed. After around 8 days, all of a sudden I felt amazing! My symptoms went away and my mental health improved. Prednisolone if you search, can cause quite a few side effects in the begginning. So it might be a case that you need to stick with it for a bit longer. But that's me experience. I always advise having a discussion with your doctor.

[Marley in reply to Feelgoodbooks]

That’s really helpful, thanks. So good to know it’s not just me. I’m going to do as I’m told and take 40mgs for two weeks. Fingers crossed it works.

[Feelgoodbooks in reply to Marley]

I hope it works! 🙏🙏

[WinterSwimmer]

I would say that this depends on the severity of the flare, and on which of your organs it is affecting. If you leave yourself at risk of kidney failure by not controlling your lupus, then you would be stupid to reduce your steroid. Sorry to be blunt.

Yes 40 mg is a lot, and yes you may be feeling horrible on it, but from bitter personal experience I would say that the need to control the flare is probably paramount. A consultant would surely not be advising 40 mg unless they thought you needed it. You don’t tell us whether you also take other drugs (like hydroxychloroquine or mycophenolate) for lupus?

[Marley in reply to WinterSwimmer]

My symptoms are primarily fatigue and brain fog. I’m lucky not to have any other problems and the docs have done scans to check nothing else is causing my symptoms. I do take Hydroxychloroquine.

[Tanitani in reply to Marley]

I have the same symptoms. For my flares i take 20mg for 3 day, then 15 for 3 days then 10 for 3 day then 5 for 3 day then 2 mintanance dose. This system works well for me.

[Marley in reply to Tanitani]

I’ve always controlled my flares in a similar way to you. Weirdly this time it hasn’t worked. I haven’t been on my maintenance dose ( 5mgs), since last Xmas. I never had to go as high before either I had Covid in March and my doctor thinks it could be Long Covid. That felt unlikely to me as I was already unwell with lupus before that. Maybe it’s a combo! If 40mgs for two weeks doesn’t sort me out then I guess Long Covid it is.

[Cas70]

I think the advice you have had is sound. Be a bit more patient and see how you feel in a week or two on 40mg. We are all so different in our reactions. There isn’t any quick fix I’m afraid but I would suggest REST. Also I would say never ever take steroids at night. They are bound to keep you awake so pace them during the day as I do taking last dose before 5pm. Good luck

[Suvi8901]

Prednisolone is a synthetic corticosteroid hormone which damps down inflammation caused by the flare.

When I was first diagnosed with lupus nephritis consultant nephrologist wrote out a detailed tapering dose for the drug over 4-5 months eg 45mg for 3 weeks, then 35mg for another 3 weeks, 25 for another 3 weeks, then 15mg for 3 weeks, 10 mg for 2 weeks, then 5 mg for 2 weeks…etc. .All worked well.👆

Then daily 2.5 mg for around a month. Now I’m off it and kidney function is good. MOST IMPORTANTLY she said your adrenal glands should start making natural corticosteroids so your need for Pred should be minimal!

Your consultant should write out a detailed PREDNISOLONE administration protocol for you?

This is obviously true but what if your adrenal glands don’t work properly? The pituitary gland in our brain secretes ACTH which stimulates our adrenal glands to produce corticosteroids in response to internal inflammation need. There are some very complex hormone/endocrine pathways here.

Something’s gone wrong with mine because my cortisol levels need checking.

So I’m having a short Synacthen test to check my pituitary gland function.

As lupus sufferers we need all sorts of medics! I’m now being seen by a hormone/endocrinologist doc next week!😳 Internally our endocrine glands may not be working so they need checking out as well!