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Sjogrens Topics => Living With Sjogren's => Topic started by: Carolina on July 22, 2020, 03:59:36 AM

Title: Chronic Kidney Disease and link to Interstitial Cystitis
Post by: Carolina on July 22, 2020, 03:59:36 AM
Dear Sjogren's Angels,

SO, I've just discovered that I'm in stage 3a of Chronic Kidney Disease.  There are 5 stages, so I'm 'advanced' but have been at this stage, 3a, for 10 years or more.

How did I not know this?  I guess because 1) there's no treatment and 2) there's not a whole lot to DO, except watch diet, weight and exercise. 

I don't have diabetes, or untreated high blood pressure, but I do have arteries full of the plaque from cholesterol deposits, which I guess restricts the blood flow in my kidneys.

I have coronary artery disease, diagnosed in 1999 and have been on 80 mg of Lipitor a day since then.  But of course, my arteries are still filling up with deposits.

Today I wondered if my Interstitial Cystitis, diagnosed in 2007 might have a correlation with my Chronic Kidney Disease.  And I discovered that there is a strong connection between the two!

AND, almost everyone begins to lose kidney function after 65, so there's another joy in growing older.  At 78 I'm dealing with quite a few of those joys!

The way this came to my attention is that two women here where I live (Senior Living Community) were discussing their Chronic Kidney Disease.  I was hospitalized for three days with a kidney infection that had sent e-coli in to my blood stream, so I was 'tuned in' to this discussion of kidney disease. 

I asked them some questions, and when they talked about the stages of the disease and the numbers associated with it, I looked my blood test results, and sure enough my numbers indicated that I was at stage 3a!

Just throwing this out, if there's anyone who has this experience.

Regards,  Elaine
Title: Re: Chronic Kidney Disease and link to Interstitial Cystitis
Post by: sixty on July 22, 2020, 02:20:13 PM
I'm also at stage three, along with a few of my friends.  It's not uncommon.  It's certainly not good, but nothing to freak out over either.  I think things will be fine if you just follow your doctors orders.
Title: Re: Chronic Kidney Disease and link to Interstitial Cystitis
Post by: meirish on July 22, 2020, 06:59:06 PM
Caroline, Hi, I have been in stage 3 for several years. I am on a drug called Lorsarten which is given to diabetes to help protect the kidneys. I have high blood pressure but it is not the worst. I have been on Metopronol 50 mgm long acting for more years than I can remember ...probably 15 years at least.

I have been on Lipid drugs in the past when younger for 13 years and wuite taking in my 60's cause I was sick of taking them and they do have side effects. I was put on Metformin back in 2009 and am now on 3 pills a day but my A1C was 6.3 the last time and I don't know how cause my diet is not the best. I have appetite aversions which really raise havoc with my diet.

Anyway, my lips level is the best it has ever been and I know it is because of my metformin. This drug causes one to get rid of some dietary fat in the GI tract. My LDL is around 100 and my HDL is 92,,,My cholesterol stays in the 195 to 210 range and my doc doesn't worry about it. My triglycerides are the lowest they have ever been. Don't think I am out of the woods cause I am not. I have plaque here and there in my vessels and lots of other issues.

I don' get frisky about my blood work cause I know I could drop dead at any moment. I have told my kids I do want to live at least til and election is over cause I have been following it for many months. Then there is the darned covid so can't miss out on that. Life is just so full of "issues" that keep us jumping and so much of it we can't do anything about.

I hope that you can get a handle on the kidneys. Have you seen a kidney specialist or diabetic doc. I get concerned about my kidneys also cause my creatine is running a little higher than it should. I am told I need more fluid. Doc role me drink about 6-12 oz glasses of water a day.!!!!! I told him that isn't going to happen. I will drink more but water is hard for me to drink. I need lots of ice.  8) Hope you are hanging in there. It has been a hard year for everyone. meirish

This is irish....had to reenter under another password and a new name.
Title: Re: Chronic Kidney Disease and link to Interstitial Cystitis
Post by: Carolina on July 23, 2020, 08:36:50 AM
THANK YOU ALL, for the support, advice, and general marvelous help.

Irish, we have so much in common, and I feel like you do:  I'm ready to 'go' of course, but I do want to stay tuned to see what happens next!

My primary care doctor became concerned about some of my 'kidney numbers' (potassium,
calcium, others I guess) after I saw her because I'd been hospitalized with a kidney infection.

I go tomorrow for follow up blood tests.  I think some of my 'numbers' including glucose are affected by the Medrol (Methylprednisolone) that I've been taking in fairly high dosage since late January.  I think that steroids affect some of the numbers in blood tests.

 I'm trying to taper below 10 mg, but it is hard because the condition for which I take the Medrol (Polymyalgia Rheumatica) returns when I go below 10 mg.  i'm now at 8.5, however, and have some symptoms of PR, but want to taper off no matter what.  Just to give my body and my 'mood' a break.

sixty, Thanks for the reassurance.  I'm not really that worried. I was just surprised that I'd been at stage 3a for the last 10 years and no one had ever mentioned it. I have at least 25 or more Comprehensive Metabolic Panel test results in my record. My GFR has always been around 55.   Like so many of us I get tested very often.  But I do know that if my kidneys fail, I doubt if I'll opt for dialysis. 

Again, thank you both!


Title: Re: Chronic Kidney Disease and link to Interstitial Cystitis
Post by: jazzlover on July 23, 2020, 06:55:48 PM
Sorry to hear! Which tests would show it? As far as I know, my kidney tests are always OK.

I have had IC since at least 1991 and I also have MCAS, which is associated with IC. OR IC is associated with MCAS, whichever way you want to look at it.

Title: Re: Chronic Kidney Disease and link to Interstitial Cystitis
Post by: meirish on July 31, 2020, 04:02:22 AM
Caroline, I forgot to tell you that no one had told me that I was in 3a for kidney failure. I always go over my blood work several times and happened to see this. It is not listed in an area that is easily seen.

I mentioned it to my doc and he said that by a certain age most people are in this bracket. Depends on how well we take care of ourselves some of the time as to how fast we progress to 4 or 5. It is such a pain to have to worry about the kidneys. I have a lower
GFR and it doesn't surprise me. My dad had 16% kidney function when he died. I have a family full of diabetes and most of them have been type 2. I figure this is probably some of the reason for the lower GFR.

My doctors don't seem to worry much about my kidney function. I do believe that a lot of people hang in stage 3 with lower GFR for years. It isn't until they hit stage 4 that they start adding more meds, diet, etc. I imagine that the docs think that at my age of 77 it is kind of a toss up. Then there is the added aspect of autoimmune disease and its effect on the kidneys. Inflammation in the tubules, etc.

We are all so used to living on the edge because of our autoimmune disease that we don't panic as much as others would. That is until we get really sick. Take care and have a good weekend. Can't believe it is going to be August. Covid time goes fast doesn't it. meirish