I am writing to see if anyone is in the same boat, and can shed some light on what is going on. I hate the waiting game, as everyone knows, it can take weeks, or months to get answers. Here is my experience. I am 38 years old (F) and would consider myself to be healthy overall. For the last two years I have been experiencing this horrible rash all over my body. When I was about 20 I started having minimal skin irritations and wrist pain, which was very odd. But I was told that it was eczema. Since this new onset of rashes I was treated for dermatitis, scabies, allergies, and nothing is working. A year ago I requested a blood test to see if there were any underlying issues. The only thing that was notable was my GFR, which was 70. The medical provider wasn't concerned. Last week I had more labs done, including a spot UA, bloodwork and an ANA test. My GFR came back at 50, and my creatinine was 1.2. There were other areas that were just barely outside the normal range, such as my red blood cells, but nothing alarming. There was no protein in my urine. My ANA came back positive, but I am not really sure what that means. There was a number associated (1:8 I believe). I am doing another follow up blood test in a month. The only symptoms that I would say are visible to me are the rashes, and fatigue. Sometimes I get headaches and short of breath, but not sure if this is just in my head. I have a high pain tolerance and usually just brush things off. I have been healthy my entire life, and so I just want to see if maybe this is just a fluke, or as the provider stated, a temporary "insult to the kidneys." Thank you in advance for reading this and for your feedback.
Feedback very much appreciated.: I am writing... - Kidney Disease
Feedback very much appreciated.
I honestly have no answer for you as to what could be causing this, I apologize. But since last year your GFR was 70, and now it's 50, I see a downward trajectory, as I'm sure you do as well.
If you want to feel like you're doing something while you wait, I suggest you alter your diet. I'm a big advocate of a plant-based diet, but even if you just cut back on meat and dairy and switched to a more Mediterranean diet, it would probably help. A plant-based diet will probably "pamper" your kidneys and at the very least, won't hurt anything. A GFR of 50 isn't scary-bad, but obviously, I'm sure you'd prefer that it didn't get much lower. If your GFR never went any higher (which I assume/hope won't be the case) you could live a long and probably comfortable life with a GFR of 50.
Even if your kidneys "bounce back" in time, really it's a good idea to improve your diet so that you don't encounter problems in the future. Something is affecting your kidneys and you're probably going to be more aware of them and more cautious about them for a long time. A good diet is one of the best ways to protect them.
Here are some links which explain the kind of diet which might help pamper your kidneys:
ncbi.nlm.nih.gov/pmc/articl....
I wish you well and am hoping you'll get positive news soon!
Thank you for the response and resource. I will definitely look into cutting out meat. I generally eat healthy, but my diet used to be protein heavy. I looked into the book that a lot of people seem to mention, by Lee Hull. Yes, I'm hoping that the number bounces back up. I'm afraid of what could happen if the number continues the downward trajectory that it has been.
You do not say where you live, USA or somewhere else. My first inkling is to tell you to find a new doctor. Someone who will answer your questions in a timely open manner. There are a couple of more tests that should be done to see if you have CKD. Also you need to know what your creatinine is doing ,whether or not that is going up. If your doctor is not answering these questions, get another one. Its your body and life. Did anyone look into the rash? There are more testing that needs to be done to see if is Psoriasis or hives or something else.
We cannot diagnose here.
Thank you for your reply. I live in the US. Yes, it has been quite stressful the last two years not knowing what is going on. I feel like I keep telling the providers that I have seen that I don't think it is eczema or allergies, but they insist it is. My creatinine has gone from .9 to 1.2 in the last 10 months, which doesn't seem to be a big jump. A while ago I mentioned that I'm wondering if it could be autoimmune related, and was told flat out no. But recently my text came back positive.
Hello aataalak! I’m sorry that you’re in so much distress. I took the liberty of looking up the symptoms you’ve listed in your post, and I found this (see link below) about psoriasis and psoriatic arthritis (you mentioned pain in your wrist). Apparently, psoriatic arthritis can go into remission at times and then return even after a long period of time.
Also, you should know that if your kidneys are in fact in a weakened state, it’s quite possible that your phosphorus levels may be up. If this is the case, then the itching and rash can possibly be attributed to that. The only real way to know for certain is to wait for your test results to come back (I know it really is a pain).
Another possibility is if you’re taking any prescribed or even over-the-counter medications for any health conditions or pain relief. If you’re worried about your kidney function, do your best to stay away from anti-inflammatories such as Advil, Motrin, Aleve or Aspirin. These types of pain relievers are very detrimental to the kidneys. Also, try to remain well hydrated to the best of your ability. Dehydration is truly one of our worst enemies.
If you’re worried about your phosphorus and creatinine levels, try to limit your intake of proteins such as red meats, chicken, pork, fish, processed foods, any beans such as kidney, Romano, chili, etc., nuts and seeds, whole grains such as oatmeal, barley, etc., dairy such as cheese, yogourt, cream, etc. All of these can be high in both phosphorus and potassium (another substance we need to limit in a kidney friendly diet).
Speak to your doctor(s) before making any big changes to your diet and exercise regimen. And also inquire about any of your prescribed meds possibly contributing to the issue. You can also go online and google your meds and their possible interference with your kidneys, or any possible dermatological side effects of the drug.
I hope you’ll find the link helpful. I wish you all of my best and hold you in my thoughts and prayers dear. Please come back and keep us posted on how things come along. Remember, we’re always here for you! Take good care and God bless. 😊👍🙏
mayoclinic.org/diseases-con...
Thank you for the information. It is very much appreciated!
Here is link to article about foods that should be considered to avoid. Please check with Doctor before you alter your diet. healthline.com/nutrition/fo...
Thank you!!
In order to make a diagnosis of CKD, a physician will run the tests I list below several times over a two-three month period. The two major causes of CKD are diabetes and hypertension.The tests they normally run are eGFR, serum creatinine, B.U.N (Blood Urea Nitrogen), and ACR (Albumin Creatinine Ratio). That is the minimum. If they suspect something else may be the cause they will run additional tests. It is imperative that you learn all you can and insist that all of your doctors inform you of all issues with your health. If you don't understand what they are telling you, ask again. Keep asking until you understand.
You also stated that you didn't know what ANA was. I'd recommend you go to labtestsonline.org and use that site to help you understand all of the tests they run. I've done the ANA for you and the simple meaning is below.
An antinuclear antibody (ANA) test looks for antinuclear antibodies in a person’s blood. ANAs are a type of antibody called an autoantibody, and, like other antibodies, they are produced by the immune system. While healthy antibodies protect the body from pathogens like viruses and bacteria, autoantibodies cause disease by mistakenly attacking healthy cells and tissues.
ANA testing requires a blood sample, which is typically taken from a patient’s arm. Testing for ANAs is used to help diagnose and determine the type of autoimmune disorder affecting a patient.
The fact that you said you tested positive makes it important that you speak to the doctor and find out what s/he did with that positive result.
When you open Lab Tests Online click on TESTS and enter the name or initials of the test you have concerns about and they provide excellent and easy to understand explanations.
You are too young for your GFR to be dropping that much for it to be age-related. WIthout knowing what your insurance is, I'd still recommend you see additional physicians. Try a dermatologist for the rashes. It may be that they can determine what is causing it and either help with the treatment or refer you to a specialist. Your insurance should allow you to seek the advice of another physician for a second opinion.
When you get the results or have additional questions, stop by here again as there is a wealth of knowledge in this community and folks are willing to share.
Best of luck.
Thank you for the information and the recommendation about getting a second opinion. I saw a dermatologist, and she recommended I see an allergist. There were no significant findings. I'm pretty good at keeping bad chemicals out of my household. Also, I recently had a skin biopsy and am waiting for the results.
Let us know how things go and if you need additional support and/or advice come back as often as you need.
Gosh.. I sympathies.. the last few yers I have developed. Eczema ( atopic dermatitis) and it is miserable..I do have hay fever and there is a correlation.. some outbreaks are wore and the itch is awful.. mainly on my legs for now.. for me I do have a steroid cream .. strong..I did research and using it topically should not effect kidneys.. at least according to nephrologist.. lost of cream and moisturizing help. i live in Ariz.. too dry for good skin.I EGFR fluctuates .. right now up from 36 to 42.. I do suffer severe sleepiness but perhaps that is age the the isolation of pandemic..or sleep apnea from nasal allergies..lol.. surely not the cats on my pillow..
You will get good help here..keep doing your best with diet and attitude..
all the best
Kelly
Thank you for the response. I'm sorry you are dealing with similar skin issues. It's no fun. Thank you for sharing your experience about your GFR. Wishing you good health!
Hi aataalak, I am also trying to figure out why my GFR is now in the 40s (at 45 years old). I hate waiting for answers too, and I doubt I will be getting any answers. My doctor said he might not know why this is happening to me. Anyways, I thought I'd share, I had a positive ANA a few years ago. It goes negative, then positive again. I guess its a weak positive? Anyways I have a doctor who is a Rheumatologist who follows my ANA, and tests it about twice a year. He tested me for a lot of autoimmune diseases too. Maybe it might be worth it for you to see a Rheumatologist and a Nephrologist to see if you can get any answers. Good luck!!
Thank you for sharing your experience. It's frustrating not know the cause. Do you see a nephroligist? How long has your GFR been in that range?
Strangely I was already seeing a Nephrologist for orthostatic hypotension, and now I am seeing him for the low GFR. About 2 years ago my GFR was in the 50s (57, 53, 51) range, but no one mentioned anything. Now my GFR is 44. I may need to go for a kidney biopsy, but my doctors told me even a biopsy may not give me an answer. I'm wondering if its possible that my low blood pressure could be the issue? Anyways I wish you the best of luck and hope your doctors can help you!!
Aataalak make sure that they KNOW you have excema. There is a BIG correlation to Psoriasis and CKD. So make sure they run the tests, there are a couple, to rule that out completely. Psoriasis and Psoriatic Arthritis elevate you urate levels which can cause sever kidney stones. I know, it happened to me. They did not diagnose my Psoriasis until after two and 1/2 years. After I presented with the arthritis. Those two years would have made a big difference if they had run the correct tests.
Thank you for your feedback. I mentioned psoriasis to the provider today and she said it didn't appear to be psoriasis. But I have another blood test in 4 weeks, so we'll see what happens then.
They thought I had hives.... the psoriasis did not present like the "normal' kind. So they dismissed it until my hands curled into little balls. There are two main tests SED rate and CRP. Hope this helps.
Kidney disease can advance rapidly if not monitored regularly. Please consult with a Nephrologist with a GFR of 50. Avoid all over the counter pain medication except for Acetaminophen! My GFR is a lot lower than yours (mine is 8) but I remember having lots of new joint pain, constantly having a sprained wrist or ankle when I was at Stage4. I had developed a secondary hyperparathyroidism from my decreased kidney function. The blood test is called PTH levels. It was causing abnormalities with my Vitamin D and Calcium levels. My Nephrologist was able to prescribe medication to get this under control and I haven't had that type of pain anymore. As far as the skin rash, CKD can cause you to have elevated phosphorus levels which can cause various skin symptoms, sometimes making flaky crystals appear. Certain processed foods really should be avoided (hotdogs for example) I've had to learn to read nutrition labels. Most foods use phosphates as a preservative so I try to use fresh foods and cook from scratch as often as I feel up to it. Best wishes for your continued health!
Thank you for sharing your experience. I spoke to the provider today and she said that a GFR 50 could be due to dehydration? Thank you for your recommendations! Wishing you well.
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