Not all symptoms are related to kidney failure

Hi, Helen: I am confused. Maybe you, or someone can help.  She was started on Prednisone for polymyalgia rhuematica about 2 years ago.  It was tapered down and when she got gout, was put back on it (as well as Uloric).  I was told Prednisone did no harm at a low dose (5 mg)... but I heard so much well-meaning advice from friends I encouraged my mom to taper it down to 4..then made an appt with a rheumatologist.   He recommended I taper her off it completely (reducing it by 1 mg every month). He told me that he doesn't like to see patients take too many meds. But how much is too much? And, what about her kidneys? I thought reducing steroids might help her kidney failure (which was a result of high blood pressure and too much ibuprofen).   I guess I didn't ask the right questions.  I'd ask her other drs if Prednisone would be bad for kidneys, and I was told it isn't bad for her kidneys(she was between stage 3 and 4).  This is the first time I've heard that it can actually help her kidneys! I was happy she is now down to 2 mg/daily. Is this why her creatinine went up a  bit (from averaging 2.75 to 3.3, her gfr came down a bit (from 14 to 13)... and now the nephrologist thinks she should be prepped for dialysis?  Should I get her back up to 4 or 5? Her ESR (sedimentation rate) is around 30-35, I think.  As you can guess, I want to put off dialysis as long as possible. Finally, is there hope that things can improve?

Hi,

Steroids are used to treat certain causes of CKD and they are used to improve fuction.  They are also good for your Mums rheuatic problems.  If she has poor kidney function due to using ibuprofen and also high blood pressure the deline in function and raised creatinine will be natural progression of the kidney failure.  Remember GFR is only a best guess and is not acurate, that is why they rely on creatinine figures as this is more reliable.  Our creatinine is recorded differently in the UK for example mine is 106 after transplant but was over 600 while I was on dialysis.  Steroids are also used to treat rejection after transplant so are safe for the kidneys. The neph is correct to say she should prepare for dialysis here is the UK it is talked about around 15% function but it is started differently for each person depending on how severe the symptoms are. I was 7% when I started but knew well in advance which type I wanted. If I were you I would research the two different types so you can discuss things with your Mum and see which would suit her best, and remeber even if she starts one type and it doesn't suit her she should be offered the option to change. So the types are haemo which she will have a small operation to fit a fistula to her arm this takes between one and three months to heal and be ready to use, she would go to hospital about three times a week for about four hours (this may me changed depending on how she does) there will be fluid restrictions and other restrictions possibly food ones depending on her potassium and phosphate levels.  She may feel faint or light headed if the machine takes off too much fluid but it is a bit trial and error to start with.  There is peritoneal dialysis (I did this) you have an operation to place a tenckhoff catheter in your stomach (in the UK) however it may be in the chest where you are. This takes about two weeks to heal and you are trained to do this at home every night for about eight hours (again this may be changed depending on how people do) you have a delivery of stock every month and access to 24 hour call out from nurses (that is how it is here) there are less restrcitions on this type and you also have the days free to do as you please. It is less invasisve but everyone is different and each type doesn't suit everyone. If a higher does of the steroids helps your Mums pain then let her have the required dose as it really doesn't make any difference to the kidneys. If she is coming up to stage four and it is chronic kidney disease which it sounds like then it is doubtful the kidneys will improve greatly so you need to get in the mindset for dialysis now.  Even if you are expecting this your whole like it is still a shock when it comes down to it trust me.  It is not so bad once you get used to it and becomes a way of life.  I am not nor do I claim to be medically trained however I have had CKD my whole life (I am 39 now) I was on dialysis for two years and I have just had a kidney from my best friend, I have had one episode of rejection and hopefully on the home straight now.  I have been asked by my local hospital to be a patient advocate and give patients who are about to start dialysis or go through transplant talks and honest advice but also be of support to them which is an honner to be asked.  Please feel free to ask if you need anything I don't have all the answers but sometimes it helps to speak to someone who has been through it.  I am also aware how hard it is for the family members to see loved ones go through this.  I am lucky I have the most amazing husband, children, family and friends and I couldn't of done this without them.  Take care

Thank you so much for your encouragement. We were scheduled for the vein prep in anticipation of future dialysis, but I cancelled and plan to reschedule. I had questions, ad the dr couldn't answer them. All he was there for was to tell me which dates he could do the surgery. I'm waiting for my mom's next (and possibly final, since her nephr. is retiring next month) appt.  You are very young, I do wish you have a super long and worry-free future with your family.  What wonderful person you must be that a friend is there to offer a kidney!  My mom is not a candidate for a kidney transplant. I know you're not a dr and all, but I reduced my mom's prednisone to 2mg from 3mg. Her CKD is from hypertension and ibuprofen use.   I reduced it, thinking it would just minimize side effects from Prednisone, but if there really isn't any harm, then maybe I can just put her on 4 or 5, indefinitely.......   

Hi I'm sorry to bother you but I have been having regular blood tests to get thyroid med right and my drs nurse called and said I had mild kidney issues and to stop ibuprofen. She reiterated several times it was mild. Upon looking on line my number is 52.9 gfr and creative 1.07 and this puts me at 3a according to every sight which step 4 I guess is when you start thinking dialysis? Why wouldn't he discuss this with me more??!!  Last blood test in July was normal. Coming off bacterium and antibiotics and hydrocortisone for cellulitis and got sick vomiting flu like etc., Monday but dr and nurse is gone of course. Am I just being paranoid or is this more serious than his mild don't worry about it attitude?  I would love your opinion since I'm clueless. I appreciate you. Thank you. Trying to find new gp but the insurance changes again so waiting till nov. pls let me know your thoughts. I have been there 8 yrs with several slip ups on their part so now I'm not trusting the doc too much right now. Thx so very much.  Jina

Hi,

You are not bothering me don't worry.  Your creatinine is recorded differently to ours here in the uk however your GFR is below 60 and so is classed as below normal but just slightly.  You are CKD stage 3a (so stage 3 no where near stage 4 so don't worry) Medications such as antibiotics and deffinately ibuprofen effect GFR sometimes you can't avoid antibiotics and these will change your GFR for a short time, however you should totally avoid ibuprofen as kidney's don't like them.  Hydrocortisone is a mild steroid and steroids don't have a bad effect on the kidneys steroids are used in transplant patients to stop rejection at really high doses so son't worry about them.  Regarding the stage 3 a lot of peopple stay at this stage and never progress, it depends what is causing the CKD, have you done a 24 hour urine collection for your dr this is the first cause of action over here, they look for clearence, blood, protien and then if need be further investigations such as scans and biopsys (A biopsy is the best way to get a diagnosis if all other tests don't show a diagnosis).  Keep your blood pressure under control and dont put salt on your food and avoid low salt that it worse than regular salt. They should start to monitor you about 6 monthly at this stage and carry out full bloods and also monitor your kidney function and creatinine, remember the creatinine is the most reliable result that is what the drs go off here.  If you have come off all the meds I would leave it a month to let them get out of your system and have repeat bloods to see how things look then.  I hope this is of help and don't worry about something you have no control over there is no point.  keep us posted

Hi Helen

How are you feeling now. Its been some time since the transplant. I just can't imagine what a low creatinine feels like.

I've just completed my hopefully last operation fot my bowel cancer. Another 18 months and i can have a transplant. My creatinine is in the low 300s and stable. Just the thought of another big operation gives me the willies. But if needed its there for me. Was it smooth sailing?

regards

John

Hi John,

I am 6 weeks post tx now and the operation its self went well.  However when you are told by the doctors ooh wait until you have had your transplant you will be all better then this is not entirely the case! They do mention you could reject but neglect to tell you what this involves.  Both my friends and my operation took about 4 hours each and both went well.  I will be honest the day after you still feel ok as you still have the anesthetic in your system but the day after that wasn't pleasent but I had, had major surgery.  I felt that after day 3 the staff thought I shouldn't be in pain anymore which wasn't the case and I had to ask for pain releif.  After about 10 days I did feel better and I could mve, cough and sneeze. Its not scary and not too bad just uncomfortable and I think it is important that people know this as you are not told this which I think is unfair.  My creatinine was 97 for a while but then it went up to 164 which is over their limit of 150 that they like it to be around.  I was back in hospital in the clinic for a whold day they couldnt find a bed so I was sent home until the next day then back in to be told I may not have to stay as could be my anti rejection drugs (these are a balancing act if they are to low you can reject too high and you are poisoned) so after sitting there for 4 1/2 hours I went home.  I went to my local hospital on the Monday to be asked what I was doing there then was told I had refused treatment at the weekend? I asked if that was the case I would of just phoned them not travelled over an hour spent £30 in fuel and parking and sat there for 4 1/12 hours (someone was trying to cover their error as I shouldn't of been sent home, bit of a worry that someone in a position of trust lied but I will deal with that) so back I go the next day and too be fair within 24 hours I had, had a biopsy and an MRI the biopsy showed mild tubular rejection the best type to have apparently so I had a high dose of IV steroids for 3 days which dropped my creatinine down to 110. Stayed at this for a bit but 133 now I do have a cold and my son has had chicken pox (they check if you have immunity before they will transplant you so all good with the chicken pox) they are supposed to take your stent out before 6 weeks and mine is still in due out next tuesday (week 7) along with my dialysis catheter.  Both these things can cause levels to rise as they are foreign objects.  I have had no problems with the catheter alone my body was like what this oh ok cool, but now its like a kidney, a stent and a catheter now you are taking the mick lol.  I think things will level out when I just have the kidney but I was told it can take 6 months for things to sort themselves out something else I wasn't told before hand.  On the upside I feel better than I have in years its brilliant and when I wake up in the morning I feel like I have been to sleep and I like my food again.  Your creatinine is not too bad mine was in the low 600's at transplant so you are not too bad considering all you are going through at the moment.  I understand your fears as you have already had stomach surgery if it is any help my husband works with a gent who had the same as you and he is doing really well.  It is necessary and you will get there as I am sure I will.  I had loads of energy ater about two weeks but my husband wouldn't let me do anything and if I went into the kitchen for more than 3 seconds he was there behind me seeing what I was doing.  Keep me updated please and if you want to chat or if you are worried about anything you know where I am.  Like you know I am no Dr but can share my experience which of course could be different from the next person so it is only my take on things. 

We are so blessed having family for support. I really wouldn't have been strong enough to survived on my own. I know many people do it all alone.

Surgeons seem to keep things in case we get too scared. I think it is probably 12 months for your body to recover from any big surgery.

I've become a believer in positive thinking which is a ongoing battle in itself.

Thanks for sharing this. I'll keep in touch.

Regards

John

My mom's TSH is actually 152... it was misread previously.  Needless to say, had she gone through with surgery to prep her veins, the general anesthesia would not have been a good idea with such a poor thyroid reading.   We get to put off the dialysis in hopes that her kidney function will improve once her TSH comes down.  Also are going to stop the Amiodarone and hopefully find a good alternative.

Hi,

Thyroid issues are conected to poor kidney function.  My thyroid was ok but my parathyroid was all over the place.  Please don't get your hopes up on a rise in kidney function once thyroid is under control.  I know this is not what you want to here but as I have said before once you get on the verge of dialysis kidney function doesn't tend to recover.  I know you are only trying to look on the bright side but you need to keep it real also.  I hope they sort out your Mums thyroid so she can be prepped for dialysis.  Don't worry if there is a drop in her function as she can have a temp dialysis line in her neck if need be.  Keep us updated

Not sure, but I think parathyroid readings have been good.  That siad, I agree... I need to keep this all in perspective. Thanks!