Experiences with Covid and antivirals. - Kidney Disease

Kidney Disease

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Experiences with Covid and antivirals.

Kiwikidney profile image
13 Replies

Hi everyone

I am wondering if anyone here has any experiences with Covid, as in the strain and the severity of symptoms you had.?

Also what treatment that you were provided?

Were you given any antivirals like Paxlovid in the early stages?

I see the recommendation is that Paxlovid is only given to patients with a GFR above 30, and that excludes some of us on here.

In my mind I would rather take an antiviral that may damage my kidney for 5 days than die of Covid!

Anyway, I was wondering if anyone had any experiences in this .

Thanks for your help.

Scott

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Kiwikidney
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13 Replies
Jamok profile image
Jamok

Hi, I haven’t had direct experience with this but I do know that antivirals are hard on kidneys. The nephrologist who is doing research on my genetic kidney disease suggests starting monoclonal antibodies right away if I should get Covid. Right now I’m pretty isolated still because I don’t know how my body would do even though I’m vaccinated but my GFR is only 11. I am trying very hard to stay off dialysis while waiting for my transplant.Take care,

Kiwikidney profile image
Kiwikidney in reply to Jamok

Hi JamokThanks for your reply

Yes it's a difficult time right now.. hopefully we can all get through it ok!

All the best

Blackknight1989 profile image
Blackknight1989

I had the Delta variant diagnosed 07/31/2021. Mild symptoms frost 7/8 days then temp spikes at night as high as 104.7. Nothing could bring down the temperature at night but by 7:00 AM most days it fell to 100/101. 14 days of COVID pneumonia that I probably should have been hospitalized for but I refused to go. Couldn’t go to the kitchen and back without being completely out of breath. By 8/31/2021 I was on the mend but breathlessness lasted another month or so. I worked with my VA primary care and my nephrologist and decided on a high triglycerides med that showed some promise of shorting symptoms in some early tests. I missed the 10 day window for the only antiviral treatment available in Arkansas at that time and was told that since I missed the window they would not work past the 10 day point. Probably should have gone to the hospital as my family spent several nights watching and waking me when I stopped breathing. I don’t remember much of those 14 days.

January 2022 I was once again positive for the omnicron variant that caused some stuffiness and a cough for about 3 days. Despite what the USA “experts” all said the natural immunity from having delta kept me relatively healthy when the more virulent but less severe omnicron hit.

I was unvaccinated mind you, a choice I discussed many times with my care team. The VA has studied the mRNA vaccines and has some definite concerns about the “health” and “safety” of those for stage IV CKD patients with eGFR below 20. We discussed the JNJ as an alternative but with the potential heart and nervous system side effects ruled that out as well. So far this are the only choices in the US and now that I have had both variants and research from both Europe and Israel show that the natural immunity can help cut severity 18 months from infection I am still unvaccinated. However, if Novavax gets approval for their vaccine and that looks promising in the next 6 months I’ll get that vaccine as it is based on 50 plus years of vaccine science and not relatively new technology that we cannot learn more about as the FDA refuses to release that despite several FOI requests and judges mandates.

I am not recommending not getting vaccinated. I am recommending having an in-depth discussion with your entire care team and doing what is right for your health situation as I did. I have no experience with antivirals as I was too late for treatment with those when I had my bad run in with delta. However, if I contract COViD again I will discuss all treatment options with my primary care, nephrologist and internist to decide if that treatment or any new treatments would be the best option for my health situation. Lindsey function is precious at an eGFR of 19 so if I have to suffer with flu like symptoms to preserve the remaining function I will. However, kidney function won’t matter if I go into respiratory failure from COVID pneumonia so I’ll take the best treatment available if that is an issue based on what my care team believes will preserve my life.

These are my experiences and opinions and I share them only to give what I went through. Please don’t take them as medical advise as I am not a doctor nor a medical professional.

Kiwikidney profile image
Kiwikidney in reply to Blackknight1989

Hi BlackknightThanks so much for your in depth response!

It sounds like you went through a very scary ordeal with delta, with some natural immunity acquired in your response to the less virulent omicron.

I am in New Zealand and we are a bit behind the times when it comes to the Covid response, but we are finally getting a few antivirals coming though soon.

I’ve had 4 Pfizer doses so far but I work in a very high risk occupation at the moment in dentistry.

My Gfr is about 23 -generally low 20s, so I’m trying to be extra vigilant- but it’s very difficult.

I will definitely try and get on to the antivirals early if I test positive and I’m concurrently increasingly symptomatic.

I think the potential pros outweigh the cons in this case.

Thanks again for your response and hopefully any future infections will be very mild for you.

Cheers

Scott

Blackknight1989 profile image
Blackknight1989

My pleasure and I understand the concern with you career as my wife was in the dental field for over 20 years. You had no choice but to be vaccinated. I, on the other hand, had a easier choice as I am disabled and as such I am not as exposed as you. Nonetheless, my two kids, 20 and 25, still live with me and they along with my wife work out of the home. That brought delta to the house and, of course, the much more virulent omnicron variant. I think that you could catch the latter with a sniff out the door…lol. I hope you discuss your options of antiviral treatments with your care team as they along with you will know best for you. As others have mentioned I have heard as well they can be really hard on the kidneys. As you know the preservation of kidney function is paramount to those of us in stage IV. Hopefully the vaccines can make any case much less severe and there will be no need for that decision or better yet you don’t become infected and never have an issue. Regardless it is something (else) we will have to live with, educate ourselves on, and deal with at some point most probably as it seems COVID will be endemic for the foreseeable future. I wish you best of luck with your journey with CKD and hope you stay negative on all virus issues!

Blackknight1989 profile image
Blackknight1989

My normal labs at my nephrologist visit and results.

﴾ABNORMAL﴿ PARATHYROID HORMONE ‐ Final result ﴾07/21/2021 3:09 PM CDT﴿Component

PTH

Ref Value Range

349.6 ﴾H﴿ 10 ‐ 65 pg/mL

Anatomical Location / Laterality

﴾ABNORMAL﴿ PROTEIN URINE RANDOM ‐ Final result ﴾07/21/2021 3:09 PM CDT﴿

Component

Protein Urine

Specimen ﴾Source﴿

Urine

Ref Value Range

120 ﴾H﴿ <10 mg/dL

Anatomical Location / Laterality

Result Type

URINE

CREATININE URINE RANDOM ‐ Final result ﴾07/21/2021 3:09 PM CDT﴿

Component

Creatinine urine

Specimen ﴾Source﴿

Urine

Ref Value Range

57.90 10.00 ‐ 300.00 mg/dL

Anatomical Location / Laterality

Result Type

URINE

ABNORMAL﴿ VITAMIN D 25 HYDROXY ‐ Final result ﴾07/21/2021 3:09 PM CDT﴿

Component

Vitamin D 25‐OH

Comment:

Value

19 ﴾L﴿

Test Method

Specimen ﴾Source﴿

Blood

Ref Range

30 ‐ 100 ng/mL

ng/mL

Analysis Performed

Comment for VITAMIN D 25 HYDROXY

Pediatric (< 17 Years):

20 - 100

07/24/2021 AEL 8:07 AM

CDT

﴾ABNORMAL﴿ URINALYSIS WITH MICROSCOPIC IF INDICATED ‐ Final result ﴾07/21/2021 3:09 PM CDT﴿

Component

Color, UA

pH, UA

Value

Yellow

5.5

Ref Range

Yellow

5.0 ‐ 8.0

Glucose, UA

Negative

Negative

Negative

Trace‐intact ﴾A﴿

None Seen

0‐1

Negative mg/dL

Negative

Negative

Negative

0 ‐ 2 /hpf

0 ‐ 1 /hpf

07/21/2021 3:27 PM CDT

Bilirubin, UA

Leukocytes, UA

Blood, UA

Squamous epithelial, UA

RBC, UA

Specimen ﴾Source﴿

Urine

Specific gravity, UA 1.025 1.005 ‐ 07/21/2021 NEAM LAB 1.030 3:27 PM

CDT

Ketones, UA Negative Negative 07/21/2021 NEAM LAB mg/dL 3:27 PM

CDT

Protein, UA 2+ ﴾A﴿ Negative 07/21/2021 NEAM LAB mg/dL 3:27 PM

CDT

Nitrite, UA Negative Negative 07/21/2021 NEAM LAB 3:27 PM

CDT

Urobilinogen, UA 0.2 0.0 ‐ 1.0 07/21/2021 NEAM LAB E.U./dL 3:27 PM

CDT

WBC, UA 0‐1 0 ‐ 1 /hpf 07/21/2021 NEAM LAB 3:27 PM

CDT

Bacteria, UA None Seen None 07/21/2021 NEAM LAB Seen /hpf

ABNORMAL﴿ CBC WITHOUT DIFF ﴾CBC WITHOUT DIFFERENTIAL﴿ ‐ Final result ﴾07/21/2021 3:09 PM CDT﴿

Ref Component Value Range

WBC 9.1 5.0 ‐ 10.0 K/uL

Test Method

Analysis Performed

Time At Pathologist Signature

Hemoglobin

13.7 ﴾L﴿

88.4

34.5

7

14.0 ‐ 18.0 g/dL

80.0 ‐ 97.0 fL

32.0 ‐ 36.0 g/dL

7.4 ‐ 10.4 fL

07/21/2021 3:19 PM CDT

Hematocrit 39.7 ﴾L﴿ 40.0‐ 07/21/2021 NEAM LAB <54.0 % 3:19 PM

CDT

MCH 30.5 27.0 ‐ 07/21/2021 NEAM LAB 32.0 pg 3:19 PM

CDT

Platelet 274 150 ‐ 500 07/21/2021 NEAM LAB K/uL 3:19 PM

CDT

RDW CV 14.1 11.5 ‐ 07/21/2021 NEAM LAB 14.5 % 3:19 PM

CDT

﴾ABNORMAL﴿ RENAL FUNCTION PANEL ‐ Final result ﴾07/21/2021 3:09 PM CDT﴿

Component

Sodium

Chloride

Anion gap

BUN

Value

137

107

12

41 ﴾H﴿

Ref Range

135 ‐ 145 mmol/L

98 ‐ 107 mmol/L

6 ‐ 16 mmol/L

7 ‐ 18 mg/dL

Test Method

Potassium 5.2 ﴾H﴿ 3.5 ‐ 5.0 07/21/2021 NEAM LAB mmol/L 3:36 PM

CDT

Carbon dioxide 18 ﴾L﴿ 21 ‐ 32 mmol/L 07/21/2021 NEAM LAB 3:36 PM

CDT

Glucose 87 70 ‐ 110 mg/dL 07/21/2021 NEAM LAB 3:36 PM

CDT

Creatinine 2.80 ﴾H﴿ 0.60 ‐ 1.30 07/21/2021 NEAM LAB

BUN/Creatinine Ratio

14.6

11.7 ‐ 13.9

2.5 ‐ 4.9 mg/dL

3.4

EGFR 23.7 ﴾L﴿

Specimen ﴾Source﴿

Blood

You nephrologist is just checking all to ensure there is nothing else causing the issues. Don’t stress the results until an in-depth discussion occurs with said nephrologist and a proper explanation is given and only then if there is a real concern allow yourself to stress. (I know easier said than done). My best of luck to you and your husband!

Taconeo profile image
Taconeo

Hello Scott I can’t share on experiences with Covid & kidney disease but my questions around that is what has bought me to this forum , I can help with experience around kidney transplant if you have questions as I had my transplant 20 months ago here in Auckland

Kiwikidney profile image
Kiwikidney in reply to Taconeo

Hi TaconeoThanks for your message

Yes I would be interested in your experience with a transplant in Auckland.

Was wondering the following:

What GFR were you when you received the transplant?

Was it a family member or a waiting list donor?

How long were you in hospital for ?

Who is you nephrologist?

How did the procedure go..how long were you in hospital for?

What cocktail of drugs are you taking, and how bad are the side effects?

Did you have urination frequency, especially at night, and if so has it subsided since the transplant?

But most importantly..how are you feeling now???!!!

Sorry..so many questions!!

I'm heading towards a transplant soon.

My partner or brother will most likely be the donors - but they obviously need to be tested first to test compatibility.

Anyway thanks so much for message.. really appreciate it!

Cheers!

Taconeo profile image
Taconeo in reply to Kiwikidney

Hi Kiwi Kidney , my new kidney came through the kidney exchange program so my husband’s kidney couldn’t come directly to me so it was a direct swap which in someways is better because they can find a very good match My eGFR was 5 /6 when I received my transplant & I hadn’t yet started dialysis but needed too if the transplant wasn’t scheduled , I see people hear talk about eGFR of 30-40 , I felt good even at 20 compared to 5 which was a very different thing my condition is polycystic kidneys

I was in hospital for 10 days usually wouldn’t have been that long more like 5-7 but I was treated for some vascular rejection , it’s a 10 day treatment so I did 5 days while still admitted & 5 as an outpatient

My consultant was Dr Michael Collins who has left now but you would see them all on rotation & they are all excellent & the care has been excellent, my surgeon was Marcus from Sth Africa again excellent , I am so lucky

I take prednisone, tacrolimus & cellcept which is the usual cocktail although some take cyclosporine instead of the tac

Side effects , some weight gain , sensitivity to sun & heat for me but then I didn’t like direct sun before hand , I’m a shade seeker, urination at night hasn’t been a problem.

& the best thing is my kidney function is excellent my creatinine was 600 at time of transplant was 200 the evening of the transplant, 100 the next day & now I sit just under 70 which is better than perfect, they don’t use eGFR after transplant , I feel great , I walk around 6-8 Ks a day & no afternoon naps for me , hope that info is useful , best of luck

Kiwikidney profile image
Kiwikidney in reply to Taconeo

Hi TaconeoThanks for that excellent message!

I feel a bit better and less scared reading your story.

Yes I have met Dr Collins once and he was very nice.

It sounds like the side effects of the drugs haven't been to harsh on you which is great.

I have Iga nephritis so I realize it will again attack a potential new kidney, bit it's amazing to know there is light at the end of the tunnel.

Thanks so much again

Cheers

Skeptix profile image
Skeptix

HI there. I got whatever Covid was floating around in Jan 21. Had a very unpleasant series of symptoms but thankfully, these arrived one after the other (each lasting about a day) rather than together. From what I could make out, mine was a moderately bad case - about half way around the seriousness dial. There was no treatment option then as such.

Things cleared up after about 6 days and I isolated for another7 or so days. Rest of family didn't contract it.

Up to then I'd had slow declining CKD for about 7 years, my eGFR dropping from mid-50's to mid-40's in that period. My eGFR (which I was getting checked only annually) dropperd from about 45 to about 30 the following (post Covid) blood. A 15 point drop, with Covid the inly remarkable event. I subsequently obtained the services of an RD who said kidney damage had been rampant with Covid but that folk wouldn't know about it. You could see from her expression the level of concern about what was coming down the tracks for a stretched Irish public health service.

I opted not to get vaccinated when those products came onto the market. I'd trust the pharma/regulatory industry about as far as I could throw it and figured I'd have natural immunity of some sort.

And so it is today. Kidney function has stabilised around the 30 mark and we'll see how it goes.

Kiwikidney profile image
Kiwikidney in reply to Skeptix

Hi SkepticThanks for your message

Man..that's a big drop in GFR, especially considering your experience was mid range

Obviously kidney damage can be part of the long term issues with covid

I got a bad flu (pre covid) about 3 years ago and I lost about 7-8 pts going from a stable-ish 32 to about 25 in 2 months ..and it never recovered for me either

Viruses are dangerous for us!

I hope you GFR stays stable and thanks again for your message.

Cheers

whats profile image
whats

I too had covid (Omicron) that wasn't too bad but my eGFR went down to low 30s after- had been trending slightly up before that. I have had all the vaccines with no side effects, but I take prednisone which dampens my immune response so not sure how much of an example my experience is. I am hoping the Covid effect will lighten over time though?

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