I've been put on Prednisone for (suspected) lupus nephritis - still waiting for the biopsy results to come back, but the consultant I saw says he is 99% sure that this is what it is.
I had a large dose given intravenously over the weekend (they call it "pulse steroids", I think, not sure why!) but although the effects from that should last for a couple of weeks, the consultant wants me to go on Prednisone "for the immediate long-term".
I hate the idea of taking steroids and I'm worried about the side effects. Does anyone have any experience of what to expect in the way of these, and how best to manage them?
Thank you!!
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November90
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Hi November90! I have Lupus Nephritis and have had this for 12 years now, many years of which have been spent on prednisolone. Unfortunately, this is still a predominantly used treatment for Lupus Nephritis but it is very important to reduce inflammation in the kidneys. What normally happens is they start you on steroids with an immunosuppressant and then try to reduce the steroids as the immunosuppressants etc....take effect and their doses can be raised. Sometimes this sees steroids being reduced and should your condition become stable or in remission, you should be able to stop the steroids altogether.
First time I was on steroids for about 4 years. Unfortunately, I did gain a lot of weight this time, as well as experienced thinning of the skin (which coupled with weight gain caused lots of large stretch marks), large face, was easily irritable, thinner hair, problems sleeping etc. But this was a fairly high dose (40mg a day) for many years. But you can combat some of these issues and they do go with time once your steroids get reduced or stopped. I managed to loose all the weight I gained and stayed off steroids then for a long period of time.
This time on them has been much better. I've been back on them a year now but at a lower dose and now am sitting at 10mg. I've managed to keep the weight off, have minimal face swelling and to be honest don't feel bad on them this time at all. Initially, did have night sweats and racing heart rate but that seems to subside as you get used to the steroids. (for me anyway).
I know this might not be exactly what you want to hear, but I feel it best to be honest and upfront about it. They have helped stabilise my kidneys though and reduce inflammation which is the most important thing! To try to combat side effects, I eat as healthily as possible, cut carbs, sugar and salt down substantially, exercise a lot (I know a lot of people with Lupus struggle with exercise but i'm a lucky one in this respect), apply bio oil to skin, and use a face roller to help with the horrible feeling of the swollen face........ also drink plenty of water if you are permitted with the kidney issues.
Everyone experiences steroids differently, so hopefully you'll have a gentle time with them. Fingers crossed for you and sorry for the long message, just thought i'd give you as much information as possible from my personal experiences
Wait for the biopsy results--if it is lupus nephritis--depending on the Class -there are 5 of them they will give you meds like Cellcept or Cytoxan. Some docs also use steroids and some don't--for example mine is US only has me on Cellcept and an ACE inhibitor for Class 5.
Thank you very much, both! ecc_active , I don't mind you telling me frankly about the side effects at all - I'm sorry that you've had a rough time with the steroids, but it's good that you have managed to find ways to control the side effects. I hope I will do too!
I am very worried about the weight gain... I had ED tendencies in my teens (it was never full-blown anorexia, but I limited my food intake a lot and was very obsessed with maintaining a low body weight) and I still struggle with the fear of putting on weight. So this is something that worries me... sorry if it sounds stupid!
NewEngland3 , the consultant did mention to me the possibility of Cytoxan, which also sounds a bit scary! My blood and urine tests and symptoms he said indicated Class III, but he also said that we needed to wait for the biopsy results and not try to second guess.
Im 28 too and with class III, very similar situations by the sounds of it! are you UK based? I'm sorry to hear about your ED problems as a teenager and it doesn't sound stupid at all, the weight gain is a horrible side effect and people don't really get it if it isn't happening to them.....but as NewEngland3 said, a lot of consultants now are choosing lower dose steroids or none at all now with the more widespread use of MMF, Cytoxan etc etc.....so hopefully you won't be put on a high dose...... looking at my own regime atm, It would hopefully only be a low/medium dose which hopefully won't cause you too many side effects, but I totally get your worries, especially given your history.... does your consultant know about your worries? Perhaps they can organise for you to see a dietitian? I did last year and although I was aware of most of the things they were mentioning, it still felt good to have a dietitian giving steroid specific dietary advice. Might be something you could ask for especially given your previous ED tendencies? I was 16 when got put on them and it was a tough time, but it can be manageable. If you need any advice or just fancy a chat/rant or just want some general LN advice (should it get to that stage; fingers crossed not though) feel free to message me
Hope you get some good news regarding your results!
Thank you so much for your reply! I think you're right, that people can't really understand how it feels about the steroids unless they're actually experiencing that. I am just scared that the weight gain will put me back into a bad place in terms of the ED behaviours. I will ask about seeing a dietitian though, since I also feel like that would be quite helpful.
I'm still waiting for a 100% diagnosis since I'm a bit weird in that the lupus (if that's indeed what it is) has only shown up in terms of these kidney issues and blood test findings. I haven't really had any of the classical rheumatological symptoms at all, no rash etc... Long may that continue!
I am in the UK, yes, in London - are you also in the UK?
No problem at all, it can feel so frustrating and isolating, but then you also feel so silly for feeling so upset about a bit of weight gain when it’s to protect your organ so it’s like a struggle internally with your own mind as well,...that’s how I felt anyway....,luckily though I think consultants and doctors are steering away from high dose long term steroid plans nowadays. And if you explain about the ED behaviours, they might be even more willing to try alternative regimes or should be anyway!
Oh this Sounds just like me! Only had/have (in the most part apart from a recent dvt) kidney issues, nothing rheumatological, no rashes etc! (Thank goodness) which is quite unusual. It took 11 years and until the 3rd biopsy for them to be 100% sure, because of a lack of blood positivity etc but luckily they’d been treating it correctly and were right all along haha! As long as you have a good nephrologist that works with you, hopefully you can preserve your kidneys and any progression for a long time that’s the hope anyway do let me know what your results come back with when will you find out? Yep, I’m in the North West near preston. Feel very lucky to have a great nephrology team here, it makes such a big difference to how you feel about everything.....good luck!
You mean kidney disease stage 3? Only biopsy show the class. I know it is very scary--I was just dg. in Feb--for my 44th BDAY LOL..had lupus since 22....It is scary but there are much worse diseases and you have to find hope in yourself and support from others...how old are you?
I'm 28. Yes, the consultant said that only the biopsy can show the class, but this was his feeling based on the blood and urine test results, the symptoms I was having, etc. etc. I think he was trying to prepare me for the worst, as as to "only be pleasantly surprised", if you know what I mean. There are indeed much worse diseases and while I'm still trying to process everything, I don't feel at all hopeless. It's just something to deal with, I guess!
Hi,
There is increasing interest in using a combination of Mycophenolate and Rituximab to treat Lupus Nephritis and avoiding high dose steroids.
This is the link to a small clinical trial, I think it’s worth discussing a low steroid regime with your Consultant given your concerns about prednisolone.
Hi November90! I am so glad to hear you’re doing okay. They will give you very large doses for 3 days straight. They will make you feel quite euphoric and for some, manic. They will make you gain weight. Please know this is all temporary.
Once the biopsy comes back, they will want to start you on an immunosuppressant - cyclophosphamide/CellCept. Think of it as chemo light. Enough to kill off bad cells and leave the good. You mentioned pregnancy and when they discuss treatment, that’s when you should bring this desire up.
Thank you much for all the very helpful advice, you are all so kind!
I got a call from the lovely nurse at the hospital this morning - my biopsy results came back (which seems very quick!) and confirm Class III, apparently. She also said that the ANA titre has gone up on my recent test, although I don't really have a clue what that indicates! She said I've been booked another appointment for next week for treatment options - apparently it's important for this to be prompt, but I was again very surprised to be offered an appointment so quickly!
They really have been great and I feel in very safe hands. Otherwise, I'm not quite sure what I feel. It is a bit weird to be learning all this while feeling essentially fine!
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