GFR dropping

[phebamom]

Good day: I am new to this hub. I am also on the high blood pressure hub and a hub for Polymyalgia Rheumatica/Giant Cell Arteritis, which I have. My GFR was 42 back in the spring, 39 last month, and 36 this month. I see an oncologist for a protein I carry in my blood. The oncologist referred me to a nephrologist. It has been a week and so far, no referral. Since Covid happened medical care in this country is a total mess.

For the past two years we have been unable to totally control blood pressure. I am on 3 different BP meds. 5,9", 165#. Low salt diet, I reduced meat consumption drastically, potatoes are my only dietary weakness. Eat a lot of fruit and veg. I drink only green tea, and water.

I make a smoothie daily with yogurt, milk and frozen unsweetened fruit. It helps with some protein.

5 mg. prednisone daily. (on prednisone for 13 years) , Actemra infusion, 600 mg. monthly , Valsartan 80 mg. twice daily.

Verapimil 40mg once daily

Hydrochlorthiazide, 25mg. once daily (I just called my primary, who is newly returned from vacation. When I told her GFR had dropped to 36, she told me to cut the water pill in half, so now am taking 12mg daily. I am to check bp daily and call her back in two weeks with results.

Oh, I am also a cancer survivor, and have lymphedema in abdomen and legs from previous surgery and cancer staging. I do lymphedema leg pumping one time daily for one hour.

How worried should I be about this low GFR? My doctors don't seem too concerned. My urine test shows blood and protein in urine.

[S_dillow]

what the heckdo they mean not worried about it? maybe new doctors if nothing else

[userotc]

Like many others, you've stated that medical care is poor and worsening and that's largely irrespective of country. So why rely on it?.

We realised that several years ago with my mum following a nephrectomy (due to kidney cancer). She commenced a Nutritional Therapy protocol which we now know is the basis for good healthcare - NOT drugs. In ~6 years, her eGFR increased from your figure of 36 to a stable ~60 latest 🤞

She also weaned off blood pressure medication within the 1st year so has been drug-free ~5 years with steady BP 115/75.

If you wish, I can send you links to some qualified Nutritional Therapists from which to select an appropriate one?

[Porter20 in reply to userotc]

I would love the links and think many others would too.

Thanks

[userotc in reply to Porter20]

Hi and see 2 links below. Where asked, I suggest you select CNHC registration too.

practitioner-search.bant.or...

theanp.co.uk/member-directory/

Also sent same links to phebamom and Minnade Paris. Good luck.

[phebamom in reply to userotc]

Please send links to the nutrition info. I am already going down that path. We raise beef cattle. I have cut beef consumption, although I have never been a big meat eater. I am eating more fresh fruit and veg. I am trying to reduce potatoes, which I know contain a lot of potassium. I drink water, and occasionally green tea, decaf. My primary cut water pill in half. I received call yesterday from kidney specialist. Appt. Sept. 1. I will post after appt.

[userotc in reply to phebamom]

Hi and see 2 links below. Where asked, I suggest you select CNHC registration too.

practitioner-search.bant.or...

theanp.co.uk/member-directory/

NB Re beef/protein, I can also send a link to a recent, reputable scientific paper which indicates that the relevance of dietary protein at least for CKD3 is overplayed. Just ask.

Good luck

[MinnadeParis in reply to userotc]

Appreciate the links. I would love the protein link. I’ve been too careful about limiting my protein which in turn leaves me lethargic.

Thanks again

[userotc in reply to MinnadeParis]

Here it is! ncbi.nlm.nih.gov/pmc/articl...

The focus seems to be on CKD3. If you follow it, I suggest get to Stage 3a from b via your selected Nutritional Therapist - to be on the safer side. Mum (now 3a) has lost muscle so is to experiment with more protein eg white meat first, following the paper's message. She's also encouraged by the comment "the lifetime risk of kidney failure for a middle-aged person is 8% for men and 3% for women"!

[MinnadeParis in reply to userotc]

Hello userotc, can you include me on that link you are sending. I’m having a terrible time finding a nutritionist

🙏

[userotc in reply to MinnadeParis]

Hi and see 2 links below. Where asked, I suggest you select CNHC registration too.

practitioner-search.bant.or...

theanp.co.uk/member-directory/

Also sent same links to phebamom. Good luck.

[Bassetmommer NKF Ambassador]

HI,'

Couple of things here to think about First of all, diuretics with CKD is not a good mix. It is strenuous on an already stressed organ. Prednisone will raise your BP. AND so does you infusion raise your BP. medbroadcast.com/drug/getdr....

Figuring out a good solution to BP medication is really hard. I have just spent the last four months trying to get mine straightened out. I was put on two different meds that really messed with me and I went off. Funny thing is my BP is better with less medication.

To your drop in GFR, yes, be concerned. The stage is not so much the concern as the continuous drop of the GFR. I do not know how things work over there, but someone needs to pay attention. Start with reviewing the meds you are on.

[phebamom in reply to Bassetmommer]

I agree. Some days I just wish I could toss all the drugs in the dustbin. Problem is I am stuck between a rock and a hard place. The inflammation from the Giant Cell Arteritis is causing a lot of systemic damage. The treatment for the GCA causes internal systemic damage. Rock and a hard place. I have been doing this delicate dance with this disease for over 12 years. GCA usually spare the kidneys, but there are cases written up that detail the disease attacking the kidneys. Actemra is actually used as a kidney sparing medication, so is the Valsartan. The problem is with the diuretic. I also have lymphedema from a previous cancer surgery. So, when I start holding lymph fluid my BP goes up. Talk about your rock and a hard place. I was placed on BuSpar several month ago. Sick as a dog on that one. Learned through my own research that kidney disease and BuSpar are a no no. I become weary of constantly being my own doctor. That being said I think I have done a great job with this dance. The average survival rate after diagnosis with GCA is 7 to 9 years.