I am new to this community although not new to healthunlocked. I suffer from MS and a rare condition called Behcet’s disease which is attacking my kidneys among other symptoms. It’s gotten worse since Dec 2022 when I had covid and I was prescribed Paxlovid. My eGFR has been going down from 85 in Dec to 69 right now which is very worrying. My creatinine is now 1, up from 0.8. I also have proteinuria that comes and goes. I get intense low back and kidney pain after I exert myself for too long or after meds, supplements or anything that revs up my immune system (latest attack occurred while in the sauna).
After reading a few posts on here I realize I need to do everything I can to stop CKD for progressing. I am just wondering if there are other people who have CKD due to an autoimmune disease and what treatments they have tried. How did that affect CKD?
Any other suggestions or comments are very much needed and appreciated.
Lara
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Lara1
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Happy to see you here, I am sure you will find people with similar history. My disease is diagnosed as primary FSGS, but doctors are not very sure about the diagnose. So I am not getting a treatment like I have an autoimmune disease.
May I ask what is your proteinuria levels? Because in the essence, thats the one doctors will focus to treat, since its harming your kidneys. Also have you ever seen a nephrologist about it?
If your diagnosis doesn’t seem to fit your ckd symptoms, there’s a rare genetic ckd called ADTKD. Many people have it and don’t know it because many doctors are uninformed. Please check out the health unlocked ADTKD rare kidney disease foundation group for more information.
Hi tas1kubra! Thanks for your reply. I caught my proteinuria on 2 consecutive home urine tests last week. It said 25-75. I will see my nephrologist on Aug 12. I’ve had kidney symptoms due to Behcet’s for many years but my labs were always good as my kidneys were probably still holding up. That is until Paxlovid.
What stage of ckd are you and what treatment are you on?
Hmm...wonder if Covid itself ushered in a flare up of your autoimmune disease which impacted your kidneys - maybe before you knew you had the infection. While there's nothing specific on Behcet to my knowledge, Covid seems to do that with other autoimmune conditions.
Hi Darlenia! Thanks for your comment. It was the 2nd time I had Covid and I started the treatment 2 days in. It was very efficient -it stopped covid in its tracks from 1st dose. By the 3rd dose though my liver was inflamed and I started having intense kidney pain. The 1st time I had covid it was a bit different - I only went to the hospital after 1 week when they gave me intravenous remdesevir. After 2nd dose I had horrible gallbladder and liver pain (I also have liver disease due to Behcet’s) but nothing major with my kidneys. So it seems the meds work really well on the virus but they also cause abnormal immune reactions for me. This is very consistent with my Behcet’s which is very reactive to most medications except colchicine and prednisolone (and even those I cannot always tolerate).
There are many people here who have an autoimmune disease, maybe not the same as yours. I am on and have been for years an immunosuppressant biologic. My CKD continued to decline, however slowly and that was from changes I made such as diet, exercise and good mental health. There is a ton of information on renal diets, but it is best to see a renal dietician. Basically, it is no red meat, low protein, lots of low potassium veggies, whole foods not processed. I exercise everyday with walking 2 miles and swimming. And I keep a positive attitude. Make sure any other medications you are on are renal safe such as BP meds.
The choice of not going on an immunosuppressant is up to you. But it will help with the flares. I Goggled Behcet’s disease and there are some foods to stay away from. I hope the medication will help you.
Hi Bassetmommer! Thanks for your reply! Do you think the biologic helped with your ckd at all? Regarding diet - is your diet also low salt? When you say declining slowly, how many years are we talking about? I’ve had BD since childhood and I know how to deal with most symptoms. But the kidneys seem to be different. I was having symptoms for years with no apparent damage and then in the last 6 months my egfr declined by 20 points. While I was actually feeling better overall.
HI, To answer your questions, yes... inflammation is everywhere in your body including the kidney. When you take an immunosuppressant, it calms everything down. I believe that part of the slowness of my decline was from proper medication. I was originally diagnosed in 2009 with stage 3b. Was there damage there before...absolutely but no one tested me. The big change was when I went to stage 4 and that was over 5 years ago. In 2018, the Neph said I would be on dialysis in 6 months and I am still not on dialysis.
Low salt ...yes.... we stopped eating and cooking with salt completely. I love salty things, so it was a big change for me. After a while, you cannot stand salty foods. For a substitute for salt, try vinegar. You will be amazed. They have vinegar is spray bottles and a couple of sprays on veggies and stuff makes the food have a salty flavor. It really works and I do not like vinegar.
There are usually no symptoms with CKD until end stage. If you are having pain, it is needs to be checked out, because that is not usual. Things like stones can cause pain. The test for GFR is a snap shot of the day and time the draw was taken. GFR can go up and down.
Have you ever followed natural protocols to address your health issues? Note below related examples:
1. Nutritional/natural protocols have been found to aid MS. See 2 relevant links below (2nd one relates to a family friend with MS).
2. My mum (ckd3) has followed a Nutritional Therapy protocol in the past 6y during which she has almost doubled her eGFR and successfully weaned off a blood pressure drug.
Let me know if of interest and I'll advise further
Hi userotc! Thanks for your reply. I turned to functional medicine and diet to handle my MS and Behcet’s. It really worked wonders and my neuro symptoms and fatigue are almost completely gone as well as joint pain, headaches, etc. All that is, except kidney inflammation which I am now suspecting it may have been made worse by some of the supplements and interventions I tried successfully for my MS. And Paxlovid.
I am interested to know more about the protocol so please share more information. Thanks!
Hi. Re kidney damage, I'd guess Paxlovid is favourite to cause the kidney damage without knowing more (link below).
The NT protocol that mum followed was personalised for her (as all protocols ought). Following on from your good results from functional/naturopathic practices, why not see someone else eg a NT specialising in renal or autoimmunity - unless you think the kidney damage is short term and will recover soon?
I will happily send some links from which to choose one if you wish.
Hi userotc! I also think Paxlovid kickstarted the kidney damage. Still, Behcet’s is very unpredictable. It usually attacks the skin (mouth ulcers are its hallmark) and the joints but since it is a vascular disease it can attack any organ in the body. In my case what helped my MS and my overall immunity seems to have increased the attacks in my kidneys. Sometimes these diseases react in opposite ways and what is good for one is bad for the other. I really thought naturopathy is a win-win. Turns out not always. I’m still hoping I will be able to recover some of the lost function. The links would be great. Thanks a lot in advance!
The 2 links below allow you to select suitable NT practitioner(s) based on expertise, location etc, as appropriate. Where asked, Id suggest CHNC registration also.
Hi nice to have you here. I have interstitial nephritis and have had for 22 years. Unfortunately for me it wasn't treated very well long ago. Mine is an autoimmune disease, I also have a stage 1 liver disease and rheumatoid arthritis also autoimmune.
My treatment is not much as of now I'm stage 5 maybe will be doing dialysis soon. I do take meds and still trying with diet to stay away from dialysis until I get a kidney.
Not to down play what is going on with you but your gfr for those of us with very low 11 or 12 or lower is pretty good.
I had covid in Jan 2021 I was very sick in bed for 6 weeks could hardly breathe. The doctor gave me prednisone and sent me home basically (good luck) I survived but it really took a toll on my gfr, At the time they were poo pooing anything like paxlovid or anything else that may have helped.
We cannot diagnose on here. I hope you have a nephrologist. You are so right diet plays a huge part in slowing progression.
I wish you well I know my story doesn't help because everyone's is different.
Thanks Allene7 for your reply! I really empathize with what you are going through. I also have liver disease due to Behcet’s and other autoimmune conditions so I know what it’s like to have doctors scratch their heads and be sent home with not much of a treatment. Honestly I’ve come to prefer it (kind of) since 99% of the treatments I have tried over the years have done more wrong than good. I have been lucky so far that my organs have withstood the damage. But it’s cumulative and I’ve had these issues for many years. Plus Covid added an extra challenge to all of us. Must have been awful for you, really sorry to hear.
All the best to you! I hope you get the treatment or transplant and your health improves.
Hi Lara1. I have lupus and take 3mg prednisone daily. My eGFR improves a little according to how much I take and when I take it relative to the labs. My lupus symptoms, mainly hemolytic anemia, have gotten better on the vegan CKD diet. A person has to be careful to get enough protein and iron, and watch the phosphorous and potassium values in the labs.
Thanks Whats for your comments! I do believe Lupus is the closest to Behcet’s when it comes to kidney disease. Can I email you in private? I have a few more questions that ‘d like to ask you.
I don't have lupus nephritis so I don't know how much help I can be. My CKD was the result of years of high blood pressure and too much tylenol. My eGFR is usually in the 50s, and is pretty stable, though it varies more than most people on this forum, probably because of the prednisone. Auto-immune inflammation seems to affect kidney numbers a bit. When I had severe meningitis about 15 years ago, pre-CKD, and took a harsh and powerful antibiotic for months, my eGFR went down to the 40s for a while, then recovered to the 80s. So don't give up! Drink plenty of water, take anti-inflammatory drugs and foods, think happy thoughts.
Thank you everyone for sharing your experiences and for the great advice! It’s really helpful. I will keep posting on how I am doing and what will hopefully work for me. Best of luck with your health!
I have Sarcoidosis, which is an autoimmune disease that still, after being diagnosed in 1996, has not advanced much in what causes it, etc., but it does attack all major organs. It started with my lungs, but my nephro also attributes it to my declining kidney health. She immediately stopped Lisinopril, added Lokelma for high potassium, and had me make many dietary changes to include low potassium foods and no salt. As others have said, that was hard, but once you stop using it your body adjusts your palate and things that I previously salted now seem too salty! My wGFR started at 42, dropped to 22, and slowly with the changes in meds and diet, has increased to 46. I was shocked that it went up so much and has stayed relatively the same for a year now. Be sure and tell all of your doctors that you have CKD so they don't inadvertently give you a harmful med, and have your doctors communicate by sending their office visit notes to one another. It's really important to be your own health advocate and make sure one doc doesn't give you something that may cause harm without knowing your history. This week in fact, one of my orthopedic docs sent in a script for high dose Ibuprofen, which I can't take due to the CKD. Had I not been aware, I could have caused more damage. He sent in a script for Acetaminophen instead. Sorry you've had Covid twice...glad the Paxlovid helped you recover quickly, even with the damage it may have caused. At least you're still here to fight on! Hope this site will help you in your kidney journey. Just remember that we aren't doctors, so what may work for one might not work for you. But it's great to hear different stories so you become more aware of your options and can talk to your doctors about potential treatment options. If you haven't already seen a nephrologist, I would recommend getting a referral to a good one and making an appt. asap. Best of luck in your health journey.
Thank you nascar4433! I’m seeing my nephrologist on Aug 12. He’s unfortunately not experienced with kidney disease due to Behcet’s. I will also try to get a second opinion although it’s not easy to find great nephros where I live. Have you by any chance undergone a kidney biopsy to diagnose your kidney issues due sarcoidosis?
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