Finally some good news!!!: For the past year... - Kidney Disease

Kidney Disease

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Finally some good news!!!

Sophiebun11 profile image
33 Replies

For the past year my eGFR has been dropping each time it was tested. It dropped another 5 points from May to Aug. I got tested yesterday and received my results from the lab by email today. Tomorrow is my Birthday so I'm taking this as a birthday gift.

My new Nephrologist which I saw for the first time 4 weeks ago started me right away on Prednisone since my CKD is from an autoimmune disease. The Prednisone did it's job and stopped the inflammation.

My eGFR went from 28 up to 50!!! My creatinine is down to 1.15. NO more blood in my urine. Only my PTH is still high at 100 but it's been high for 15 years from hyperparathyroidism secondary to Vit. D deficiency.

I read about the rise in eGFR with Prednisone and I know it will drop should I ever have to discontinue it, and I may need to increase my dose over time to keep the inflammation down, but I'm happy for what it's doing now. My kidneys are not having to work as hard so hopefully that means the damage won't progress as fast as it had been. I love this new Nephrologist, I had a good feeling about him. I see him again on Tues. I do wonder if he'll still label me as Stage 4 or if I'll get an upgrade to Stage 3A (a girl can dream, right?) If only the Pred. would fix my cardiac problem I got with the CKD but it can't fix everything. It does have a lot of bad sides effects though. I've had a love-hate relationship with Prednisone the last 30 years with my asthma, right now I love it!!!

Anyone else had good results with Prednisone? The Neph may also start me on CellCept, maybe my eGFR will go up to 90 on that LOL : )

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Sophiebun11
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33 Replies
Grammy80 profile image
Grammy80

I think that's awesome news!!! My bet is you get bumped up a notch! Whatever the magic is..I'm so glad it is going upward. Fifty is nifty....I know, bad😣!! What a birthday gift...wait until Christmas~! 💖

Sophiebun11 profile image
Sophiebun11 in reply to Grammy80

Thanks! Here's hoping!! It sounds a lot better that way.

Skeptix profile image
Skeptix

Congrats! That's some result and in a way very good news x2. eGFR is calculated from creatinine reading. Since you have less creatinine in your blood you must now be filtering creatinine (and probably everything else) better than before.

Which to my mind means your kidneys have gotten better - contra the received wisdom. Surely anything that was inflamed and isn't inflamed anymore has gotten better. No?

And so your true kidney health is at least eGFR 50 (or more as the meds take hold). Whatever about that aspect of your health which causes things to get inflamed - a separate issue.

That is indeed cause for delight: the underlying health of kidneys is better than thought. Okay, the fact you have to take a med blows a few of the birthday candles out.

But by no means ALL. Happy Birthday Soapy!

Sophiebun11 profile image
Sophiebun11 in reply to Skeptix

Thanks so much!

pubmed.ncbi.nlm.nih.gov/223...

I only found 2 studies in Prednisone improving eGFR. One was a man who was at eGFR 24 and went up to eGFR 50 within 2 weeks. The study above is in a group of elderly beagle dogs with CKD. The ones on Prednisone improved significantly, while the ones on a placebo did not, during the 4 month study. I'm in good company with a bunch of elderly beagles LOL!!!

Prednisone is the mightiest anti-inflammatory of them all so it has helped the tubulointerstitial inflammation and stopped bleeding. All good things. However, I doubt it will ever be used as a treatment for everyone with CKD. It certainly is appropriate for autoimmune CKD.

I think I have gone too far on my Veggie diet. My BUN is low this time. I'll add protein powder to my birthday cake : )

LuvSmallDogs profile image
LuvSmallDogs in reply to Sophiebun11

Does that mean that your albumin level is also low? Or can one be up and the other down?

Sophiebun11 profile image
Sophiebun11 in reply to LuvSmallDogs

My albumin is always a bit low due to my autoimmune disease and malabsorption plus I don't eat as much protein as I should. I'm adding nutritional yeast but it may not be enough. I'm also low in phosphorous, sodium and a couple other things that are usually higher with CKD but that could be due to taking Lasix (furosemide). I also have super low blood pressure. I guess we're all different with different causes of CKD. Thank goodness our Neph. can figure it all out for us!!! I have an appt. on Tues with my Neph to review the results.

LuvSmallDogs profile image
LuvSmallDogs in reply to Sophiebun11

Thanks for answering. I hope all works out well at your appointment.

jodaer profile image
jodaer

Congrats that is great news. Prednisone is one of the many meds where we have to make the decision do we or don't we take it. My thoughts live for how it will help you today. Tomorrow might bring something new.

Sophiebun11 profile image
Sophiebun11 in reply to jodaer

Thanks. That's how I looked at it all the years I took it for my asthma. Did I want to struggle to breath, or live with the Prednisone side effects. I opted for breathing. Now I'll opt for better kidneys :) My Neph. is considering CellCept for me, I don't know if that would replace the prednisone or not. Or maybe with this improvement I won't need the CellCept.

Bassetmommer profile image
BassetmommerNKF Ambassador

Happy birthday and great news and yes, your stage will go to 3a.

Sophiebun11 profile image
Sophiebun11 in reply to Bassetmommer

Thanks. I'm happy to know my status will change, that's a relief. The mental stigma of Stage 4 is draining. I just hope my eGFR will stay up. I'm sure I'll still have to see the Neph. every 3 months just in case.

Jayhawker profile image
Jayhawker

youtu.be/J0QmSiK6SSA

Sophiebun11 profile image
Sophiebun11 in reply to Jayhawker

Thanks Jayhawker, cool very of Happy Birthday!!

jodaer profile image
jodaer

I forgot to say Happy Birthday and wishes for many, many more

Sophiebun11 profile image
Sophiebun11

Thanks so much!!! I really have cause to celebrate and really appreciate the birthday wishes from everyone here!!

drmind profile image
drmind

CONGRATULATIONS. and best wishes for the best birthday ever.

Sophiebun11 profile image
Sophiebun11 in reply to drmind

Thanks, drmind. I really appreciate the Bday wishes.

drmind profile image
drmind in reply to Sophiebun11

Incidentally, I had PHT levels off the page and no one did anything causing me considerable worry. Got a new nephologist and he began titrating calcitriol and vitamin D and within months, PTH is in normal range. He continues to monitor these levels and is always tweaking them. Love this guy. What's so sad is my primary acted as if it was no big deal!! Best of luck.

Sophiebun11 profile image
Sophiebun11 in reply to drmind

I was lucky my Rheumatologist did a PTH and Vit D test when I complained of bone pains. My Vit D was down to only 8 which is dangerously low. I take prescription Vit D 50,000 IU once a week but my level is still only 25 after 8 years. My PTH came down a little it's 100 this week. My PCP back then apologized and told me that because my calcium wasn't high he didn't check Vit D. He told me that from then on he was going to check every single patient that year with their blood test for a baseline Vit D. Those who had a low level would be tested more often and those who are normal would be tested once a year. He learned from his error. I was sent to an Endocrinologist since my PTH wouldn't come down and Vit D wouldn't go up. I was diagnosed with secondary hyperparathyroidism. She said I might have a benign tumor in my pituitary gland but it wasn't worth doing the exploratory surgery and I'm allergic to thallium dye so I couldn't have the test for it. The endocrinologist told me that Drs shouldn't rely on high calcium levels before testing Vit D and PTH because they don't know why it's showing up even with normal calcium levels now but that it's probably due to environmental causes.

It's a good feeling to know you have a Dr. who is on top of things. I really love my new Neph. I'd probably never have been put on Pred. without him and ended up Stage 5 before long. He even told me he was afraid my prognosis wasn't good so the Prednisone was a last ditch effort.

I guess sometimes PCP are only good to have around because we need them for the referrals to the physicians who can actually help us!!

Good luck, I'm glad you found a great Neph too.

Kiwikidney profile image
Kiwikidney

Congratulations- that must be amazing news for you!I’m just wondering if the auto immune condition you have is Iga nephropathy?

I have Iga nephropathy with high proteinuria and a GFR of about 25 but my nephrologist has never offered it to me.

I have read that prednisone can increase the likely hood of adverse events, but still the pros might outweigh the cons.

I would be interested to know if we have the same condition.

Thanks, and again congratulations.

Scott

Sophiebun11 profile image
Sophiebun11 in reply to Kiwikidney

Hi Scott,

I have my CKD from and autoimmune disease called Scleroderma which attacks heart, lungs, kidney, skin and most parts of the body. I took Prednisone for asthma for 13 years and it worked wonders for that when I needed it then.

I realize the Prednisone is only masking my true kidney disease but at least it may be helping prevent more damage if it doesn't cause some as it could at higher doses. I'm at a pretty low dose.

I'd ask your Neph. about trying Prednisone. Here's a medical article about Pred. and IgA Neph.

pubmed.ncbi.nlm.nih.gov/241...

Good luck and thanks again.

RoxanneKidney profile image
RoxanneKidney

Happy Birthday. Awesome news!!!

Sophiebun11 profile image
Sophiebun11 in reply to RoxanneKidney

Thanks, I'm really jazzed!

Benos123 profile image
Benos123

Just about awake and I had to open this post mentioning your GOOD NEWS, and long may it last. As a newbie, may I ask how did you find out that your CKD came from an autoimmune disease (AD), as to date I've not been given any reason for mine although I suspect over exposure to toxic oranic solvents and chemicals from back in the day, and I have many ADs!

Sophiebun11 profile image
Sophiebun11 in reply to Benos123

Exposures to those things along with heredity are the causes of my autoimmune disease. My autoimmune disease Scleroderma has progressively damages nearly all of my organs which is the normal progression for anyone with that autoimmune disease, so it wasn't unexpected to end up with CKD and heart failure. If your Neph. hasn't told you the cause then ask them, or ask for a kidney biopsy if they didn't do one. An Ultrasound or biopsy should give the Neph the answer of your cause.

Most people with autoimmune disease have more than one like the less life-threatening ones like sjrogens. If you have ADs then you should be seeing a Rheumy and the Rheumy will know if kidney disease is part of your AD. The Rheumy and Neph should be consulting.

Good luck.

Benos123 profile image
Benos123 in reply to Sophiebun11

Thankfully there is no hereditry aspect for me and I'm just left with the toxic solvents & chemicals. I've spent the last three years researching the connection with, and identifying the causal substances, for each condition and I hope to have it completed in another month, if the health allows. When I was recently being treated and diagnosed in hospital with CKD (border line stage 3) by a Neph, the only thing she wanted me to do, was not take anymore NSAIDs or any such similar and kidney toxic meds, and if I did that then she says that my kidneys will last me out. However I will still drop her an email as regards any other cause and I had a number of kidney ultrasounds, a CT scan and an MRI as part of her investigations whilst a patient. (Note: whilst I never liked the OTC ibobrufen, I was given prescriptions for Naproxen and more recently Vimovo for at least the last 20-30 years by various GPs as if they were sweeties. Not once was it ever raised as a matter of concern or any alternatives suggested and in the fifteen years of blood test results which I provided to the Neph, the Labs concerned had asterisked when tests were over range and no action ever resulted. I only ever saw a Rhuiny (as I prefer to call them) after I getting PMR but he had no interest in me other than the fees he got for injections every few weeks and when I wouldn't play ball I ended half dead after 3 months of MTX and then when he suggested the slower acting Leflunomide, I gave them up after 6 weeks as I was then nearly dead. I went cold turkey for a month and got myself back on 10mgs of prednisolone and after which I worked 9 till 9 from April throught to Sept without an ache or a pain, that is until my left hip finall gave up the ghost and is now waiting to be replaced! Finally as regards autoimmune diseeas (ADs) here are just my top eight - Psoriasis, Hepatitis, Hypothyroidism, CFS, GCA, Henoch Schonklein vasculitis, PMR, and RA. Oh btw there are still four or five other plus at least a dozen others that maybe are autoimmune related incl the CKD.

Sophiebun11 profile image
Sophiebun11 in reply to Benos123

I would add MCS to your list although it's not technically an AD. I have hypothyroid, hyperparathyroid, Sjrogens, Scleroderma (which is my worst) and the CKD and asthma all of which weaken my immune system and cause me to have shingles every 3 months, what a joy that is : ) Plus MCS, I was exposed to many chemicals while working as a Paramedic on an ambulance back in the 70's and 80's. First I was exposed to burning plastics in the seats in a train fire on BART in the SF bay tube. Since then the plastic seats have been banned as all the passengers and EMS workers became ill. Then another time I was taking a patient on a gurney with my partner and the helicopters spraying Malathion for mosquitos flew overhead and doused us with toxins. Then twice I was exposed to a petroleum chemical fire at the Chevron Refinery in Richmond, CA where all the residents were on indoor lockdown. Back then we had no protective masks or any gear like that when going to get pts out of dangerous toxic areas. After that I got occupational pneumonia, asthma, MCS, CFS, and was diagnosed with several autoimmune diseases. At first I was mistakenly Dx'd with Lupus rather than Sclero as they are quite similar. I took 3 years off work to recover from pneumonia had it twice in one year and couldn't get my asthma controlled even with Prednisone and was in the ER a couple times a month at least. Finally I got in to see a PCP who also practiced Environmental Medicine. You should check to see if there is an Environ. Med. physician practicing near you, this link has a list by state and zip:

aaemonline.org/find-a-pract...

You are correct in the connection between chemicals and many health problems. I am very allergic to most chemicals and even most household products. I have to buy special shampoo, laundry soap, and only clean with baking soda and vinegar. Otherwise I get migraines, asthma and even anaphylactic shock. Tons of food allergies appeared around the same time as my chemical exposures. No one else in my family has any allergies. My mother has rheumatoid arthritis and lymphoma before she died. I have MGUS from chemical exposure which can progress to Multiple Myeloma. If you've had that many exposures you should be tested, it's a special test if not specifically tested you'd never know until you had the full blown cancer. My mom and her chihuahua both got non-Hodgkins Lymphoma because she insisted on using Flea bombs in her house and did 2 in one month which was an overdose. It killed her dog and almost killed her but she underwent chemo and recovered. Then she finally believed me about chemicals. Just as she never believed that perfumes, colognes, and strong cleaning fumes could make me ill with migraines and asthma until she was having chemo and her immune system was weak and those things made her really nauseous and headachy.

After time off work I went to work as a paramedic at a hospital for a few years. Just my luck they remodeled the cardiology wing where I worked. New carpet, new wallpaper, new paint, new furniture, new everything and I got Sick Bldg. Syndrome along with another lady in my dept.. We both ended up on permanent SSDI. I was only 32 when I had to quit working due to all the chemicals I'd been exposed to since I was in my early 20's.

I guess it's lucky that aspirin and NSAIDs worsen my asthma so I've always avoided them. My PCP has given me Tramadol for my Sclero pain for the past 20+ years. It helps some, better than nothing. I'm allergic to codeine or I'd have been hooked on Oxy by now for my pain.

Life isn't easy but it beats the alternative. I try to find something to laugh about each day and not dwell too much on everything wrong with me LOL. I'm sure you must do the same : )

Good luck. I hope you find an Envir. Med. Dr. to help.

Benos123 profile image
Benos123 in reply to Sophiebun11

Thanks for the detailed reply and the only Environmental Doctors I could find here were all of the "built enviromental" types who will come out to your premises and carry out H&S audits and produce a report and charge you a small fortune for it.I had contacted two of these sorts earlier in the year and whilst the first said it was "outwith his area of expertise", the second said that it was very difficult to prove any connection between chemicals (that have long since departed the body) and present day symptoms and that in any case there was a higher standard of proof required in the UK & Irl.

I then tried to make contact with a UK based toxicopathologist who was involved in similiar cases, but the solicitor concerned refused to provide me with his contact details unless I was willing to initiate a Medico Legal case with him! But I'll keep trying and now add an MGUS test to my things to do list! Finally as regards MCS, I cannot include it as it has not yet been added on the AARDA listings, where about 180+ ADs are recognised and yet I understand that there are only about 28 recognised in the UK, and hence why I've had to include references & relevent extracts from the scientific research reports on line, in oder to support my case!

Sophiebun11 profile image
Sophiebun11 in reply to Benos123

That's too bad. Good luck. Here in the US it's widely recognized and even is covered under Social Security Disability. Most PCPs are familiar with it. MCS is listed along with my other diagnosis in my computer list. My PCP has written notes to my apartment manager to excuse me from having my apt. sprayed with bug spray and other things like that. There isn't anything to treat MCS per se. Everyone has different symptoms and you just treat the symptoms as with autoimmune diseases.

Confuseddiabetic profile image
Confuseddiabetic

Congratulations! Certainly something to celebrate! Having had to deal with asthma, I’m familiar with prednisone but the change in GFR and creatinine is amazing and wonderful. Happy birthday

Sophiebun11 profile image
Sophiebun11 in reply to Confuseddiabetic

Thanks so much! I took Pred at 60m every other day for 10years then 20mg for another 3 years for asthma. I hated it back then but as you know with severe asthma you have no choice if you like breathing : ) I'd been off it for about 10 years. Low dose isn't bad at all compared to higher doses. I have to be careful not to overeat as it does effect my appetite even at low dose. I was so happy to go off it and lose the weight I'd gained before, I will not go there again I like being slim again!!! I feel better with all the joint pain from my Scleroderma too! For me it's a win-win right now!!!

RhenDutchess123 profile image
RhenDutchess123

Congratulations !!...Do you feel differently ?..More energy and strength ?..Sleeping better ? This is fabulous news!

Sophiebun11 profile image
Sophiebun11 in reply to RhenDutchess123

Thanks!!!! Actually Prednisone keeps your wired and wide awake so I'm lucky to get 2 hours sleep a night. But I do have more energy and much less pain in my joints from my autoimmune disease. My asthma is better too and I didn't really think it was bothering me until I started breathing more freely. I live near the CA wildfires so the smoke this summer has been terrible.

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