Interstitial Nephritis

Hello, I'm Hannah, I'm 43 yrs old. I'm new to this site, and in fact all of this. I've already gained a lot from reading peoples posts, and it's given me the courage to reach out, thank you.

My story...

I have previously been fit and well, but I became unwell at the end of August with extreme fatigue, nausea, loss of appetite etc. Bloods showed I had creatinine 174 and GFR 23. I had a biopsy, which showed I had Interstitial Nephritis, likely caused by Aspirin or Ibuprofen. Unfortunately the biopsy was delayed by a few weeks due to a spurious blood infection result and a stay in hospital treating something I didn't have. All the while my kidneys were no better.

I've been now been on Prednisolone since beginning of October, started on 50mg but now thankfully down to 15mg. I've had unpleasant side effects, but know they are necessary. They've improved my situation which is great, GFR now 44.

Biopsy showed scarring, and at appointment last week my consultant said this may be about as good as it gets, with maybe some slight improvement. I am disappointed with this result, as it seems this is stage 3 and at first I was given the impression this is a temporary thing, I don't have kidney disease and it was all going to go away. I am now left feeling quite differently.

I've been given little information from consultant, I have never actually been told I have CKD stage 3, i'm just working from my numbers and what I have read. So i suppose my questions are these, if anyone has any input on them i'd be really grateful.

1) I was diagnosed initially with Acute Kidney Injury and was told it would go away with steroids, now I have GFR of less than 50, this has gone on for over 3 months and is not likely to change, does this mean I have Chronic Kidney Disease at stage 3?

2) Consultant said I will be fine to live a normal life, work, diet all normal. However, I am still very much not myself, quite tired, unable to work at the moment, can't drive due to nervousness, I jump at the slightest noise, and have the shakes constantly. They are putting this down to the steroids, but I was like this before I started taking them. Does anyone else have these symptoms with or without steroids? I just don't trust that I am going to return to normal.

I've had a battle with food and acid, and loss of appetite throughout, but appetite is coming back, so thats a good sign.

I totally understand there are people in a much worse situation than me, but this has rocked my world a bit. I'm sorry this is such a long post, but thought best to give the whole picture. Thanks for reading.

13 Replies

  • Hannah, I'm sorry to hear of your diagnosis and although I don't have Interstitial Nephritis, I do have CKD3b, and, like you, Ibuprofen was one of the possible culprits, together with an undiagnosed, therefore untreated, auto immune condition at the time - the jury is still out on whether it was a combination of the two. I have just a sole kidney, having had one removed very many years ago, so perhaps I was more at risk from whichever cause.

    One thing I would say in answer to your question as to whether or not you actually have CKD3, is not to place too much emphasis on the words Chronic Kidney Disease. When I was first diagnosed, I was horrified at the name "Disease", and the renal consultant agreed, explaining that the condition had been so named in the US and we had to live with it!

    As far as the "shakes" are concerned, having once been on the steroid, Prednisolone, for over five years for the auto immune illness, I concur with what you have already been told that this is due to the steroids.

    Are you still taking the steroids - if so, at what dose? The tiredness you mention and the nervousness are both listed side effects of the steroids and you should improve as you reduce the dose.

    If your eGFR has improved from 23 to 44 and your appetite is returning, then it is all sounding very positive, and you may find that your eGFR improves further with time. Even if your eGFR doesn't improve further, the priority is to ensure that it remains stable and you will probably be monitored from time to time to ensure this is the case. Meanwhile, have lots of rest, drink plenty of water, avoid salt and have some walks in the fresh air to lift your spirits. Importantly, rather than mistrust that you will "return to normal" do try and stay positive. Lots of good luck wishes.

  • Celtic, thank you very much for your reply. It has really helped to hear what you have to say. I'm sorry to hear about your conditions, five years on Prednisolone alone sounds pretty horrendous to me, a couple of months has felt bad enough! I have started the weaning process and am now down to 15mg, I think I should finish them in January sometime. Thanks again, and Best wishes.

  • Hi Hannah,my name is Dawn. I am older than you , at 57 but still fairly young for this I believe. I've just found out yesterday through a blood test that I am stage 3a. The GP is going to ring me on Wednesday to discuss where next I suppose. I'm a very fit, petite person, so have no idea where this has come from. I've no real symptoms at the moment, bar not sleeping very well, feel tired easily and also jumpy, anxious feeling of recent months. I found this out through a recent blood test for something else. Also feel world is rocked, not sure what I'm supposed to be doing now, diet? More water?

  • Hi Dawn, sorry to hear about your diagnosis, it is such a shock isn't it. The jumpy/anxious feeling really interests me, as I was like this when I first became unwell, which was well over a month before I started taking steroids, so I now don't know what is side effects and what is as a result of kidneys. I wish you luck with your Dr on Wednesday, I'd imagine they will now try to establish why you are stage 3a? I'm not massively experienced in this at all, but I think safe to say drink plenty of water. Wishing you all the best.

  • Thanks Hannah, I just experience a general anxiety but mainly when I'm doing something I'm unsure of., or don't like doing, such as car travelling too fast, etc. I've noticed anxiety is worse than used to be. Yes, need to find a reason now, could just be one of those things, I don't take ibuprofen very often, but I don't drink much fluid, so I'm upping that. Let me know how you get on too. Stay positive too.

  • Try the " link im sending you, u will get enough information "

    Wish u good health

  • Thanks very much - I'm reading now!

    Best wishes to you.

  • GFR Calculator – Glomerular Filtration Rate- Davita

  • I am interested in your history as I suddenly had a dramatic deterioration in my GFR and going through the process of probable biopsy Iam 67 and my GFR is 44. I was devastated to find I was at stage 3 b and like you too nervous to drive and very jumpy.i have asked my GP if it's due to a thyroid problem? Can you please tell me what the biopsy entailed as I'm very nervous about having it. Hope you are feeling better Hannah.. regards Annxx

  • Hi Ann. Thanks for your message. I understand you feeling nervous about the Biopsy, it certainly sounds and feels like a big deal. But I really did find it to be ok. For me it happened as a day procedure (which I think is normal) you arrive early in the morning, and complete bed rest on your back for 6 hours following, and providing blood pressure and everything is ok you can go home. The procedure itself is fine, like everything, probably best not to think too much about detail, but ultimately you are given a couple of injections of local anesthetic , so all you feel is the sort of 'dentist tugging' sensation as they use a very fine needle to extract a couple of small pieces of kidney. The consultant and nurse will talk you through the whole thing, mine were brilliant and it really didn't take long at all, probably about 20mins. You need to take it easy for the week following, and will feel a little bit sore/bruised. I think the best thing is to try and stay as relaxed as possible and remember that it is all over quite quickly. Wishing you good luck Ann, keep in touch and let us know how you get on x

  • Hi Hannah.. so kind of you to reply and give me such a detailed account.. thank you .. now I know about it..I won't be so worried .. it's fear of the unknown . Have been reading some of the replies and find that many of us are experiencing anxiety and nervousness in the car... this is so me and I thought at one point I was "going crackers " as I'm "frightened " of being in the car with my husband driving .. terrified of going up hills and being on the motorway. Just happened when my kidney function deteriorated. I was just thinking if it was due to the effect of the raised creatinnes in my body. I was a nurse many moons ago but procedures have changed so dramatically since I was nursing. My problem seemed to coincide with a high protein diet I was on at slimmers world .i have modified my diet and tried to find all the foods that interfere with kidney function and those that help it . I have cut out salt and drink lots of water , started to do gentle exercise and have a brisk daily walk. Anything to help until I see the good to see your GFR is back up to 44 and your creatinnes are down. Let's hope the steroids do their job and you are feeling better soon. Please keep in contact and let us know how you are getting on.Annxx

  • HI Hannah, I am sorry that you have been unwell, but that is GREAT news that your GFR has come back to 44. I am not a health professional, but have had a kidney transplant. My kidney impairment was due to scarring etc, but I don't think it was found as early as yours has been. Some of your symptoms sound like anxiety and nervousness and I would defintitely recommend you seek further medical attention and advice. If you are unhappy with the information you have been given so far, be tenacious, this is YOUR life. Try not to worry too much though and good luck.

  • Hi Hannah - its hard having kidney injury but the emphasis is on kidney disease in most groups - and different information for different stages and different approaches by different consultants. I have had this twice - the first time four years ago my eGFR fell to 14 and yet with steroids returned to 66 ( I was told it was likely ibuprofen use) - which continued until this year when it fell again to 12 (possible reaction to antibiotics??!!!!) and now after a short course of steroids over the summer I am up to 22! I am waiting for results of a biopsy - it will be interesting as they can compare it with one I had last time. I am now 62, and also have IBS - (I think I have been confusing the symptoms of one with the other ). From what I see everyone is different - there is lots of hope - its a shock and takes some time to get your head around but not impossible to have a good quality of life.

    The thing that has been doing my head in is what caused it - I will probably never know but I do know I need to keep well so I don't need antibiotics - have had the flu jab - most winters I have had really bad sinusitis and antibiotics so have to avoid that this year somehow. At the same time need to maintain a social life !! Also need to exercise and watch diet. It is all somewhat overwhelming and time consuming but the peace of mind and long term benefits of sticking with it are worth it. I have left my job which I found stressful. Take a long view if you can and do what you can to look after you.

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