Hi I have lupus nephritis but have no more predni... - LUPUS UK

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Hi I have lupus nephritis but have no more prednisolone, anyone?

biowarrior profile image

I recently got diangosed with lupus nephritis, due to contracting Hepatitis C in September, which I am now cured from.

I saw a doctor privately who was able to diagnose me and I started prednisolone at 40mg a day for 3 weeks to see if it had an affect. My kidney pain went away. But now that doctor has gone AWOL, and I can't get a follow up appointment. I am on the NHS referall list for a nephrologist which has taken ages because of covid. But am in limbo now as have no more prednisolone, and the GPs won't prescribe me and my pain has come back eek.

14 Replies

NO,NO,NO.i understand your situation as I have class 5 lupus nephritis but prednisolone is a VERY dangerous drug.ive been on it for 6 yrs for my lungs.from my own experience you will most likely need a kidney biopsy as that's the only way to properly diagnose nephritis.i take mycophenolate for my lupus which also helps kidneys.in the meantime all you can do is go back to your gp repeatedly if necessary.sorry but youd be a fool to take prednisolone without gp supervision the risks to your eyes,your bones,your weight etc are not worth it.i cant get off them everytime I get my dose down below 7.5mgs my lungs flare.im now faced with the possibility of biologic treatment.please dont do it .

Sorry to hear your situation. That is very tough.

Yes that's what I'm worried about, I don't know how long it will take to get a kidney biopsy on the NHS. I'm going to try and go private again as well, but it's so expensive without insurance. My previous doctor diagnosed me on immunology tests.

I'm more worried about my kidney degenerating irreversibly, then the prednisolone side effects. and I feel so crap/fatigued and in pain. And also the fact that I was on them for a short time and then off can't be good, rather than taking a proper course.

Unfortunately steroids dont work like that the shorter the course the better there is less chance of becoming steroid dependent.steroids work by suppressing your adrenal gland the longer you are on steroids the longer the suppression and you must come off steroids very very slowly so your adrenal gland slowly begins to work again.come off them to quickly and you risk an adrenal storm. If you have nephritis the likelihood is the damage has been occurring over a long period of time and the wait now to be seen by the appropriate consultant most likely wont make much difference.pred side effects arent short term...they thin your bones for instance and the steroid drops for me result in several bad days and I'm only dropping mine 1mg a month ! Please be patient

Ok yeh you might be right about the course. I just wish I had had the chance to taper off. I'm pretty certain I didn't have this coniditon before September 2019 as that is when I contacted Hep C which can cause this type of problem.

Can understand how you feel but I’m afraid this would be illegal and potentially dangerous for you.

You need to get to the bottom of your kidney pain. It is rare for lupus nephritis to be painful so may be an infection or something related to the hepatitis.

Try GPs again? Or the other option is to turn up at A&E. Who diagnosed you with lupus nephritis? They should be contactable for an emergency appointment.

I get kidney problems and I’m always seen very quickly and often sent to hospital.

Good luck x

biowarrior profile image
biowarrior in reply to Melba1

Yep I understand what you are saying. Obviously I should be able to get treatment I think it will just take a lot of time, and I was feeling great with no pain on the prednisolone. I went to A&E but they just measured my creatinine and it came back 142 nmol/L increased from 120 since February so they aren't going to investigate it if it's only stage 3.

I'm pretty sure it's not an infection as my Hep C is gone (negative viral load) and I took some antibiotics for a week afterwards.

I have a referral and that's all the GP say they will do. I feel my only option then is to try and go private again and start again, it's just so annoying they charge so much especially for the first appointment. then they order tests. Corona virus has just made it so much harder.

I agree with melba.i was unaware I had any kidney issues as it gave me no pain and it was detected by routine urine and bloods by my rheumatologist.the only time I've had really bad kidney pain a stone was suspected.i appreciate covid has impacted on appointments but I was sent as an emergency to the royal preston hospital renal unit and from intial detection in aug 18 to biopsy in oct 18 took 7wks.my nephrologist now sees me regularly at my local hospital where he holds a clinic.you need to go about this the right way

7 weeks is quite good. Covid's definitely delaying this process massively. I have urgent referral from the GP and that's been 6 weeks since my referral.

But yes I will eventually be able to get treatment, just scared it will be too late.

Since seeing my consultant my gfr is back down to 60 my kidneys have stabilized and I'm now on 6 monthly appointments from 6weekly.no one knows how long I've had kidney damage.thete are things you can do like checking salt contents of foods and not eating too many bananas

down? that is worse. That's good your kidneys stabilized. That is what I am worried about, the best you can hope for is stabilize the current damage and my GFR has gone down from 66 to 49 since January.

Ok thanks for your advice. I'm thinking of trying to get a kidney biopsy privately or maybe an ultrasound as then dcotors will be able to diagnose and treat the coniditon. But don't know where.

My gfr is 60ml/min and my creatinine is 65.renal unit will do all of that.patience is a huge part of dealing with lupus as drugs used to treat our issues take at least 2 months to work

Also bio there are 6 classes of lupus nephritis class 4 being the worse I have class 5.the classes denote which part of the kidneys are affected which is why a biopsy is the only way to get a definite diagnosis.

Paul_Howard profile image
Paul_HowardAdministrator

Hi biowarrior,

I need to make you aware that I have edited your post as any discussion of selling or purchasing prescription medications is a breach of terms of use for this site - it is illegal activity.

I am sorry to hear that you are struggling and so desperate at the moment. As others have said, steroids are very carefully prescribed because they can have significant side effects.

I would suggest that you try speaking to your GP again and let them know how much you are struggling. If you are unable to manage the pain, you may need to try phoning NHS 111 or consider A&E.

I’ve had Lupus Nephritis for over 15yrs and it’s never been painful, so as Melba 1 said this could be something different and needs checking out. I totally agree that a trip to either your GP or A&E are the best alternatives. I wish you well.

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