Hi everyone. Just after some opinions please. Just got my latest blood results. After 3 years of ‘ok’ results and no treatment I am really shocked to see my EGFR is now 45, creatinine 115 and Urea 8.6. I don’t know what will happen as pred and Aza has to be stopped due to the bad side effects. I have appointment with my nephrologist on Thursday but am quite scared 😟
Do you think I will be put straight on to some other treatment? What works best? Thank you for reading.
(My husband has just reminded me that I had my flu vaccine on 16/10 and had a weird reaction could it be because of that)?
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My reply to your first post is lost in the ether, so I will try again... I said don't worry too much right now because you have the good fortune in seeing your nephrologist in a couple of days. Your readings are similar to mine, which my nephrologist says are normal for ME, even if not in the average normal range. However, if they are not normal for YOU, then your nephrologist is just the right person to see so soon. Posting this now, and hope it gets through. Will continue later.
Thank you. The readings are not normal for me but reassuring to hear that they are not too bad! Are you on any maintenance drugs? I’m not on any at all so am wondering if they will start a new treatment? I will post an update on Thursday!
Continuing: I'm not clear on whether you have stopped the preds already, or have been advised to stop. Stopping Preds is a long drawn out business in order to be safe. My personal experience with Aza was a bad one, and been on Mycophenolate ever since. Also on 10mg preds for four years before gradual mine month reduction. I then became ill with nausea and vomiting if water, and they found my eGFR down to 12 and then 9. Creatinine zoomed up to 399. A kidney biopsy in hospital revealed that my body couldn't cope without Preds, and my vasculitis damaged kidneys suffered. The answer was to go back onto Preds, and I'm on 5mg per day for foreseeable future. As you are seeing your nephrologist, s/he should be able to put your mind at rest, and you shouldn't have to go through anything like this yourself. I hope this helps. I can't get back to my original reply, so have written this out in the hope that it gets through this time, and makes sense! Best Wishes to you.
Thank you May7. I did receive your reply. My original post went on twice so I deleted the first one. Sorry for the confusion.
I was taken off Pred gradually in April 2019. Haven’t had any Vasculitis meds since. Lots of others but no maintenance drugs. Does Mycophenolate cause you any side effects?
Mycophenolate hasn't caused me any side effects, but I'm not sure if this is the case for everybody. We are all different, and while I had trouble with Azathioprine others have been fine with it.
By the way, I have tried to go through to your original post to try again, and it says Oops this page no longer exists. So my reply went nowhere. Anyway, I hope the cobbled together subsequent replies make sense.
Sorry to hear that. I was ok with my 2 covid jabs (awaiting 3rd). Just the flu one was bad! Did you have to go back on any treatment or were you on maintenance drugs at time of vaccines?
Update:I saw nephrologist today. He thinks I may be having a relapse so I had further blood tests. Interestingly he said it’s nothing to do with the flu jab 🤔(For some reason I really don’t understand they didn’t request ANCA or any inflammation markers tests so these were done today). He said it depends on these results. If they are not good then I will be put on some new treatment which will be Steroids (which I am going to argue against as they caused me to have glaucoma) and Rituximab. Has anyone had any adverse reactions to this and how effective is it? I have researched and don’t like the listed side effects. One being complete hair loss. Has anyone had this?
Just read your posts and thought you might be interested in my reaction to the flu jab.
I have MPA diagnosed in 2018 and am currently in remission on maintenance doses of 5mg Prednisolone and 5mg of Methotrexate. I have had three Covid jabs, all Pfizer, on 23 Dec, 13 Mar and 1 Oct. All were fairly ok with no lasting side effects.
I then had my flu jab on 9 Oct and had a really bad reaction that same day with pain in all my muscles, headache, nausea and awful weakness. I contacted my vasculitis consultant and he told me to double the Prednisolone dose for two days then revert to my normal dose. This brought only temporary relief and he then asked me to double the dose again for two weeks and ordered a blood test. This showed low inflammation markers, and blood, liver and kidney results all ok.
So not a relapse, but the flu jab certainly provoked some kind of violent reaction in me. I am now slowly weaning the Prednisolone back down, but feel far from what now passes for "normal" for me. I am quite apprehensive about what the next few weeks will bring!
Thank you for your reply. I definitely do think the flu jab is partly responsible for my unexpected blood results. I am currently waiting for my immflamation results, but liver and kidney are now nearly back to my ‘normal’ so I remain hopeful that I won’t need further treatment.
I’ve been on rituximab for 4 years and have very few side effects. It’s brilliant stuff. Just takes a while to work. I get glaucoma from prednisolone too plus lots of other problems so can’t take it all the time. But last year I had to take it for three month while waiting for rituximab to really kick in. Stopped a flare becoming a major relapse. It was much easier coming off. Wishing you all the best.
Hospital will contact me soon to let me know if I need any treatment, still waiting for ANCA and CRP blood results. I am hopeful that they will be ok too 🤞🏻Thank you for sharing your experience of Rituximab. I hope you are doing ok now.
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