Latest News: COVID-19 & Flu vaccines for people with CKD

[JackieJ_NKF]

Kidney disease patients are at higher risk from severe illness from both the flu and COVID-19, so it's crucial to take precautions. If you are immunocompromised, it's important to stay up-to-date on your COVID-19 booster shots and your yearly flu shot. During this NKF Live, we’ll speak with experts to answer your questions about keeping healthy. RSVP today: fb.me/e/18SQ8alNn

[orangecity41 NKF Ambassador]

I got the current Covid 19 and Flu shot.

[userotc]

Re ckd patients being at higher risk of covid, I presume you still don't have scientific evidence of vaccine benefit? You may recall I asked when you published a similar post 1-2 yrs ago and you suggested I contact NKF. I did and still await such evidence, despite chasing at least twice.

My understanding is that there were no CKD patients involved in trials so evidence is lacking.

[JackieJ_NKF Partner in reply to userotc]

We've made several attempts to discuss this matter with you. Many messages were sent to you via chat 8 months ago. If you would like to further discuss your concerns, please email our NKF education team by contacting [e-mail].

[userotc in reply to JackieJ_NKF]

I've received NO messages. My contacts were made via email and there were no replies.Which chat are you referring to so I can seek?

[JackieJ_NKF Partner in reply to userotc]

I am referring to the direct chat option here on HealthUnlocked. Please check your messages.

We've also provided our direct contact number (855-653-2273) and email to connect with one of our Patient Specialists, the United States Renal Data System (USRDS) contacts for data and research inquiries related to the renal disease population in the U.S., and Vaccine Adverse Event Reporting System (VAERS) to request more information about those who may have had issues with the COVID-19 Vaccines in the U.S.

Once again, if you would like to further discuss your concerns about COVID-19 Vaccines and how it affects the renal disease population in the U.S., we suggest you use the information listed.

[userotc in reply to JackieJ_NKF]

There was a single response on that Chat which stated that you had inexplicably deleted my post requesting evidence and suggesting external bodies I could contact. For the specific info sought, your suggestion was followed and [e-mail] emailed on 23/1/23. Again, no reply.

Since NKF is making the relevant statements, I would expect that it has the evidence should it exist without having to refer externally.

[JackieJ_NKF Partner in reply to userotc]

One of many reports received, which we addressed and also provided additional resources for specific inquiries about COVID-19 Vaccines and how it relates to the kidney disease population in the U.S.

NKF is an organization that offers general information about kidney disease. While we are not able to offer specific information in several areas, including COVID-19 Vaccines adverse reactions for some in the kidney disease demographic in the U.S., we make it a point to provide resources to relevant organizations that can address additional specific inquiries.

[userotc in reply to JackieJ_NKF]

Sorry but your reply is unclear despite reading several times. I think it aims to try to indicate that you have (or can) supply what I seek ie scientific evidence that covid vaccination has helped CKD patients.

If you have such evidence to support your statements, please send link(s). As I've outlined, I've not received such evidence from the external organisations you have provided. So I must assume there is none, thanks.

[JackieJ_NKF Partner in reply to userotc]

We can supply you with organizations that can help you with your specific inquiry. To which I've included in the previous messages.

[userotc in reply to JackieJ_NKF]

I know that but thus far it's not resulted in evidence that supports NKF/your statements.

I've also now emailed [e-mail] but this will be the last one before sadly giving up on the basis there's no evidence.

[AENEASavc in reply to userotc]

Being so angry is bad for your health.

[userotc in reply to AENEASavc]

Then don't get angry...I don't! But I do believe scientific information on health should be presented to support key statements. Otherwise it could be construed as misinformation.

[OldTownhammock in reply to userotc]

Your communications are on the aggressive side

[userotc in reply to OldTownhammock]

I'm sincerely sorry you feel that, I'd like to think they reflect frustration rather than aggression or anger but I guess it's difficult to know from short posts. Let me try to explain why I'm frustrated (albeit necessarily briefly).My mum has ckd3 so I explored the risks & benefits of a COVID vaccine for her >2y ago. This indicated that no-one with CKD was involved in trials and so there was no scientific evidence of benefit. When it was declared on here by NKF representative(s) that there is a benefit, I simply asked for that evidence. Despite spending much time contacting NKF etc, (see above), I still await that evidence.

I realise that most people usually believe what medical bodies tell them but, as a scientist, I prefer to see the evidence. Apologies for that but remember that even Boris Johnson stated at the outset of the pandemic that we should be lead by the science (though he didn't follow that later!).

[OldTownhammock in reply to userotc]

I think its hard to read each other's sentiments in these short posts. I dont blame you for feeling frustrated. Being ck3b myself I am also frustrated with trying to get facts, especially in regard to diet. However I have been around covid a lot li ving in Florida and with my vaccination and 3 boosters I have not caught the disease. I hope I haven't offended you. I'm a little extra sensitive as I have some very pleasant blogs turn into all out verbal war over disagreements. So I apologise.

[userotc in reply to OldTownhammock]

No need to apologise, all good!.

Re COVID, we all know now that the vaccine doesn't stop infection. So CDC etc accept that and now say it stops serious illness. Mum didn't get c19 vaccine (partly due to lack of evidence mentioned) yet recovered well within 2 days of infection. But she's not antivax (had lots) and would respect your choice...so no disagreements here!

[userotc in reply to OldTownhammock]

Oh and re diet for CKD (your frustration!), my mum has increased her egfr from 36 to ~60 in 5y by following a Nutritional Therapy protocol. If only to show no hard feelings between us, I'd be happy to send you contact details for qualified NTs if you want.Otherwise, take care/stay healthy!

[jodaer in reply to userotc]

I was in the Moderna study and I have CKD4 at the time so I'm not sure what you are talking about by saying no one was in the trials who had CKD

[userotc in reply to jodaer]

Sorry if I said there was no-one with CKD in any trials as that would be very unlikely.

What I meant to say was there was no scientific evidence from any trials that the vaccine helped CKD patients, at least for stage 3 which my mum was/is. If there was, NKF and/or organisations they referred me to (and I contacted) in the past 2y would surely have presented it.

In its absence, I completed a brief risk-benefit analysis for her and the results were not positive for vaccination though may be different for later stages. Just some links and key comments from them, in order, are given below:

1. "There is no information about the safety of the vaccine specific to people with kidney disease.." (NB updated 3 weeks ago)

2. "..more research is needed to learn more about the effectiveness in people with advanced CKD"

3. "..clinical outcome data in early-stage CKD (stages 1-3) has not been well studied"

4. "On the basis of limited evidence, the immune compromised status of CKD patients might decrease neutralizing antibody development after a single dose of a specific vaccine"

5. "the immune response to the COVID-19 vaccine may be a trigger of nephropathies"

6. "..clinicians need to consider the possibility that kidney diseases may be provoked by vaccines in patients who have renal symptoms"

Related links, in order:

kidneyfund.org/living-kidne...

kidney.org/coronavirus/vacc...

sci-hub.hkvisa.net/10.1053/...

ncbi.nlm.nih.gov/pmc/articl...

karger.com/ajn/article/53/4...

ncbi.nlm.nih.gov/pmc/articl...

[jodaer in reply to userotc]

It would seem to me that instead of seeing if there was a benefit to the vaccine, I would check to see what the downside would be if not taking it. Getting covid can be a life changer.

[userotc in reply to jodaer]

A full RBA should be undertaken for any medical intervention including vaccines and includes BOTH risks and benefits. It has been reported without considering specific conditions such as CKD - with the risks far outweighing benefits, albeit a reducing differential with age (I can supply details).

For mum, as stated, I requested from NKF etc independent scientific evidence of vaccine benefits from trials of ckd3 patients. That could be a reduction in the risk of getting covid and/or of being seriously ill from it. But, Ive received nothing in the past 2y and that, plus the comments I've listed from the links I supplied to you, indicate that's because it's understudied for CKD.

Please advise how else you would scientifically evaluate the "downsides of not taking it" and supply related figs. Id welcome any better method of independently analysing the vaccine for ckd if you have one.

PS As you'll note from my previous response to Old TownhHammock, mum recovered well from a dose of covid. How she would've fared with the vaccine is unknown.

[jodaer in reply to userotc]

Glad your mom recovered from Covid. Millions didn't without the vaccine. Potential death is the downside of not taking the vaccine.

[userotc in reply to jodaer]

Thanks. Potential death and other serious adverse events are also downsides of vaccination. That's precisely why an RBA is advised in order to evaluate both pros & cons.It appears that you did not do one (or at least are not prepared to share!). That is common for the vast majority who rely solely on medical authorities etc to protect them. We used to be of that opinion many years ago before suffering as a consequence eg as per my HU profile. Now I prefer to be more diligent in order to protect my family and myself. That includes mum, hence why the experience with NKF has been frustrating.

But we respect the choice of anyone to get vaccinated and wish you well.

[crackers2 in reply to JackieJ_NKF]

Hi Jackie. Your recipes look yummy. I am surprised that there are tomatoes in them and mustard. I thought that was not allowed in a kidney diet. Just wondering. Thank you for posting the recipes. Happy Thanksgiving to you and family.

[JackieJ_NKF Partner in reply to crackers2]

Certain foods and condiments, like tomatoes and mustard, tend to be higher in potassium. We encourage moderation for a general kidney disease diet. If your potassium levels are already high, substitutions to some of the richer potassium foods will also work for most recipes. Thank you for your contribution! Happy holidays to you and your family as well!

[Jayhawker]

Both my transplant center and my primary care are recommending COVID, flu, and RSV vaxes this year. I’ve gotten the flu vax and am awaiting COVID and RSV availability to get those.

Thanks for posting this!

Jayhawker

[Porter20]

Do vaccines even work for immunity compromised?

[barbara55109 in reply to Porter20]

There is much misinformation about what "work" means. For some vaccines they "work" to prevent contagion. For other vaccines, they "work" by reducing the severity. I'm considered immunosuppressed because of all my diseases. My Dr. tell me vaccines definitely help to reduce contagion and severity of communicable conditions. People taking immunosuppressive drugs post transplant are even more compromised and vaccines may or may not "take." My understanding is vaccines may not work as intended, hence the transplant centers require all vaccines be up to date to stay on the list. I'm not on those drugs, so I don't know the details.

[Porter20 in reply to barbara55109]

They do agree but I am after transplant.

[Jayhawker in reply to barbara55109]

I’m post transplant just about 11 months now. My transplant center wants me to get both COVID and RSV vaccinations along with flu. So, I’ve gotten my flu shot. I’ll get COVID and RSV as soon as they are readily available.

None of these vaccinations provide 💯 percent protection. As others have said, different vaccinations target different issues. But as an immune compromised person due to anti-rejection meds, I’ll do anything I can to protect myself. That includes wearing N95 masks, hand washing regularly, and using hand sanitizer when away from home in addition to getting these vaccines.

Jayhawker

[userotc in reply to Porter20]

Not as well as for non-compromised (see my links to Jodaer for some evidence). That's a factor to include in a risk-benefit analysis.

[PecanSandie]

Just got both in the past two weeks. Next up is the RSV vaccine.

[nonna70]

I got flu and RSV a couple weeks ago and am going for Covid on Thursday.

[JackieJ_NKF Partner]

For those of you who would like to participate and share more of your specific concerns about COVID-19 & Flu vaccines, please register for NKF's Live Webinar at: fb.me/e/18SQ8alNn

[barbara55109]

Last week was flu shot. Thursday is COVID booster. Now I have to track down the new RSV vaccine. There are major shortages for the RSV. My Dr. tells me pharmacy chains get more than Dr offices.

[drmind]

Thanks for alerting us about the need for these vaccines. I've had the flu and covid one and waiting on the RSV one.

[Hily]

I have attempted to get my Covid-19 booster but have run into the Health board wall. BCUHB, north Wales, the largest board in Wales, 8 years in Special Measures, say it is by invitation only. Fair enough, but why haven't I been invited? Big surgery histories, Age, DVT's and now in Stage 5 End Stage Kidney Disease. Apparently not good enough for them.

My GP's have given me my Flu shot and 1st Shingrix and told me the health board were doing Covid. But no, nothing.

Contacted Kidney Wales, nothing. Called IA in London, yes should be having it but who to see? BCUHB of course. They have denied me twice!

[Downinil]

I’m concerned about cardiac issues after Covid vaccination. I need to know if this is still an issue since the vaccines have been around a while.

[userotc in reply to Downinil]

Serious adverse events including cardio have not gone away and there's more data available (including from the vaccine manufacturers) in order to make a better decision on vaccination.

You can see my comments in this thread eg with Jodaer, for my personal views but you alone must decide for yourself.