Chronic kidney disease

[MaggieSylvie]

My recent GP-ordered blood tests have revealed chronic kidney disease. I have been told that an appointment will not be necessary. My creatine count is very high this time but B12 etc. are fine. Should I worry; everything online says this is serious.

[hunter5582]

Chronic kidney disease comes in stages. How serious it is depends on what stage you are at.

kidneyfund.org/resource/you...

davita.com/education/kidney...

Note that some of the medications used to treat MPNs can affect the kidneys. Thrombosis in the blood vessels that support the kidneys can also cause kidney damage.

If creatinine is the only thing high, that may have a different interpretation. Suggest you seek guidance from your GP about all of the kidney numbers and what they mean. I expect the GP would have referred you if significant CKD was a concern.

At one point I was showing a possible mild/moderate CKD and was thoroughly assessed by a nephrologist. Turned out to be a tempest in a teapot. While I thought I was staying hydrated OK, all I really needed to do was increase the fluid intake. Drinking more water solved the problem.

Wishing you all the best.

[MaggieSylvie in reply to hunter5582]

Thanks Hunter, my rock.❤️

[PhysAssist in reply to MaggieSylvie]

Hi MaggieSylvie,

As I say so often here: What Hunter said!

But also, what have your creatinine values been, and how many/how long have they been elevated?

Also, what are your BUN [blood urea nitrogen]and GFR [usually reported as EGFR].

Have you had any 24-urine testing done yet? That is in some ways the best way to test kidney function.

We almost always order renal [kidney] ultrasound exams to work up possible kidney failure- at least in part to make sure that there are no structural or mechanical causes and to examine the flow of blood into the kidneys and look for any of the multiple things that can impair their function.

I also agree that if a diagnosis of kidney failure is being entertained, a nephrology [kidney] doctor referral is important, if not mandatory.

Best regards, and remember that worrying never helped anything!

PA

[MaggieSylvie in reply to PhysAssist]

Hello PhysAssist, Thank you for contacting me. What a joke this is! Wherever it was that said "chronic kidney failure" I can't find it now! But I have gone through my tests and tried to answer some of your questions but suspect that "ckf" is something that I shouldn't have seen. Here are some results: Urine test: Creatinin level, urine 7.7 (2.55-20 mml/L), Albumin:creatinine ration 3mg/mmoL (0 mg - 2.5).

Bloods: Creatinine 92 umolL (45-84 umol/L

EGFR 52 ml per mm, being typically 58, 52, 64.

Creatinine has been raised(?) Sept 2018 86; 2020 96; June 2021 100; Nov 2022 116. I hope this is all you need.

I also found something online the other day which had some clear diagrams of symptoms. I have swelling of my legs, and assumed this was due to having to have stitches removed from my ankle that had not disolved, as well as arthritis in the knee. The other symptom is the feeling of bladder restriction, as if there is some kind of blockage that wasn't there before, and there's a picture of what that looks like. I complained of it about 3 years ago to a pharmacist who said I should see a doctor ASAP and two years ago, I spoke to my new GP about it. He gave me Pregabalin to stop the feeling of urgency at night, which was one of the problems keeping me awake. I had a scan and physical inspection but they tried to do an internal exam which failed because the speculum was too large and it was causing me pain. The outcome of this has not been addressed. Fatigue, of course and lack of mobility due to compression fractures and fibromyalgia.

I have myelodysplastic syndrome: refractory anaemia with ring sideroblasts and thrombocytosis. This means I have blood tests every three or four months and telephone appointments with my haematologist. I am watch and wait on aspirin and erythropoietin injections - age: nearly 79.

If my kidney function (I know one is smaller than the other) is normal, then I'm worrying needlessly but I had a telephone appointment with the surgery pharmacist and I spoke to him about being flagged up as having CKF and he said it was about to be addressed (and I still can't remember where I got that diagnosis but it seems to have disappeared.) I look forward to your throwing some light on all this. Please let me know if you need any other "numbers", and thank you so much.

[MaggieSylvie in reply to PhysAssist]

Sorry, PhysAssist, I didn't answer all your questions. I Haven't had 24-urine testing done. I did have an ultrasound but I don't think it related to my kidneys.

[PhysAssist in reply to MaggieSylvie]

Hi MaggieSylvie,

No apologies necessary, and thank you for filling in some of the blanks!

I do think that it's time for you to see a kidney specialist/nephrologist however, so they can do their thing to figure out what is going on with your kidneys.

You may also benefit from consulting a a urologist given the symptoms you report.

Typically mild elevations in creatinine with decreases in EGFR are considered renal insufficiency, and measures should be undertaken to both determine the actual cause, and to prevent further dysfunction.

I found this while looking into EGFR levels:

What are the stages of chronic kidney disease (CKD)?

Stage+++Description+++++++++++++++++++++++++ ++++ eGFR

2++++Kidney damage with mild loss of kidney function ++++60-89

3a++++Mild to moderate loss of kidney function +++++++++45-59

3b +++Moderate to severe loss of kidney function ++++++++30-44

4 ++++Severe loss of kidney function ++++++++++++++++++15-29

There is a primer on kidney disease here:

kidney.org/sites/default/fi...

and more here:

kidney.org/sites/default/fi...

I hope you find this information helpful, and not a source for further worry- and I seriously recommend seeking out a kidney specialist ASAP.

Best,

PA

[MaggieSylvie in reply to PhysAssist]

Thank you PA for those links. I did find them interesting. I have no idea why it is being swept under the carpet by my local surgery (the post saying I had CKF has seemingly disappeared) and I'm being told my tests are normal. What I think is that while the creatinine looks like stage 2-3, the albumin levels are insignificant. It could be that they are slowly cosidering what CKF might mean for someone with blood cancer and on pregabalin. I got no further with urology because I refused to let them hurt me any further with what I thought was an unecessary internal examination. No-one examined my urethra and I doubt the scan covered that area of my anatomy. I'll just wait for a while. My partner went into hospital today with diabetic complications; the ambulance crew left me with a lot of uncecessary mess that has not been easy for me to take care of, so doing more than the research I have done today with the help of you and Hunter. I must say - I feel forgotten about at the surgery, as I have had no follow-ups for any of my conditions except blood cancer, where I am under a Macdonald team and a haematologist, and I expect it's "all part of growing old" and suck it up.

[MaggieSylvie in reply to PhysAssist]

Hello again, I'm shocked at the results and all the things I'm being recommended to do because I'm used to doing blood tests but the doctor didn't tell me what these were for. The last time I did tests for the surgery, they were trying to make me out to have an underactive thyroid, which isn't the case.

[MaggieSylvie in reply to hunter5582]

Dear Hunter, Thank you so much for those links. It looks as if, if I have CKF, it is not advanced and my diet isn't so far away from what is recommended. I don't often have the foods on the right hand list, so I just have to make sure I keep drinking. It is a good thing I'm only on aspirin; I don't know how Pregabalin might affect the kidneys but my present GP prrescribed it. As you say, I expect the GP would have referred me if significant CKD was a concern. Well, that's not happened. So maybe another tempest in a teapot. Thank you for your support.🤗🤗

[hunter5582]

Glad the information helped.

I have taken pregabalin before. I found it bothersome in that it impacted my ability to concentrate. it also did not help with the type of pain I had. It does work quite well for some people who also tolerate it quite well. It is certainly much better than being in pain. I hope you have a successful experience with it.

Here is a bit of info on pregabalin from epocrates that is worth knowing. epocrates.com/online/drugs/...

Contraindications / Cautions .

hypersensitivity to drug or ingredient

CrCl <30 (ER form)

abrupt withdrawal

avoid: alcohol use

caution: renal impairment

caution: elderly pts

caution: CHF, NYHA Class III-IV

caution: angioedema hx

caution: angioedema risk

caution: depression

caution: depression hx

caution: respiratory impairment

caution: CNS depressant use, concurrent

Adverse Reactions .

Serious Reactions

hypersensitivity rxn

anaphylactoid rxn

angioedema

exfoliative dermatitis

Stevens-Johnson syndrome

thrombocytopenia

rhabdomyolysis

suicidality

respiratory depression

withdrawal seizures if abrupt D/C

withdrawal sx if abrupt D/C

Common Reactions

dizziness

somnolence

xerostomia

peripheral edema

blurred vision

nausea

weight gain

headache

abnormal thinking

constipation

impaired coordination

pain

platelets decr.

All the best

[MaggieSylvie]

Ooooh yes! It's not perfect by any means. I see there is renal impairment on the list! There are quite a few other side effects I also experience. Abrupt withdrawal due to not getting the next prescription on time is something I've never experienced before. Simply awful.