Shingles and CKD: Well, isn't this just dandy... - Kidney Disease

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Shingles and CKD

Bassetmommer
BassetmommerNKF Ambassador
46 Replies

Well, isn't this just dandy.... I have shingles. I woke up the other day and I had two areas of redness. I thought it was just my psoriasis blooming since I was due for an infusion. Then the pain started to hit me and I thought, "sheesh is a tooth going bad?"

Nope it was the shingles and nephropathy. It started with shooting pain into my ear and nose and it was not all the time, just a good zap once in a while. The next morning, I had a many more little blisters around the left eye area and forehead and my nose is a mess. I look lovely. :( I had to cancel my infusion and run to my PCP.

The treatment for shingles are antiviral drugs Acyclovir or Valacyclovir and are very bad for kidney patients. I was prescribed Famciclovir in a low dose. You need to start this medication within 72 hours of on set. If you think you have shingles get to a doctor and make sure you get the right medication.

The reason I am posting this is to make people aware. My doctor said she is seeing an increase of cases. Shingles are caused by the same virus that causes chickenpox. It lays dormant if you have had chickenpox. They do not really know what triggers it but an impaired immune systems usually is the culprit. It happens usually when you are older...like in your 60's. It is contagious only to someone who has not had chickenpox. You can't spread shingles and give someone shingles. I am not going anywhere however for a few days.

The pain is not fun. My skin burns where I have lesions. My nose feels like someone is zapping me with low voltage. And every once in a while I get a real strong zap in my cheek and ear. My doctor is concerned if this gets into my eye and so am I. Shingles runs across a nerve and in my case the facial nerve on my left side. I am more tired but I think that the medication is contributing to that also. And not being able to have my infusion is a real bummer.

I am recommending CKD folks to talk to your doctor about getting the vaccine for shingles. There are mixed reports as to whether or not it is a good idea. It is worth the discussion and getting the shot if you can.

Believe me, you don't want shingles.

cdc.gov/shingles/vaccinatio...

46 Replies
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orangecity41
orangecity41NKF Ambassador

Oh my. Hope you get over it soon. I did have shingle shot.

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Bet117
Bet117NKF Ambassador

Hi Bassetmommer,

Oh my! Please take care of yourself and think positive as " this too shall pass".

Unfortunately, shingles is chicken pox related and in the air; who knows how it lands on who; two non kidney patient friends have been blessed with it; one in her 40's - go figure.

The article is great that you posted. Hopefully more members will discuss the possibility of taking the vaccine with their PCP as a result of this information.

Knowledge is power!

Take good care of yourself and let loved ones pamper you a bit.

Please let me know how you are feeling!

Bet

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Bet117

Thank you friend. I hope you are doing well. And you are right, it will pass. To bad it isn't Halloween as I won't need a mask to be scary. :)

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Bet117
Bet117NKF Ambassador
in reply to Bassetmommer

Oh Stop!

You are still very much beautiful!

This is temporary - the real beauty to be focused on lies in the heart.

I will be in touch!

Pamper and rest!

In my prayers!❤

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Mr_Kidney

Actually, the Shingles vaccines are a two-shot process. I had my first one is March of 2018 and the second one in June of 2018. At the time my PCP and the pharmacist told me that the original vaccine had some issues and that folks who had received that needed to get the second shot as an added precaution. The second shot was called Shingrix.

Bassetmommer, I hope you get through it as quickly and comfortably as possible.

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Mr_Kidney

Yes you are correct about the two step shot. I was told to wait because of the CKD and my PsA. So sorry now.

I hope you are feeling better after your gallbladder surgery. It takes a while, but boy did I feel better for having it done.

Take Care.

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rabbit01

Oh so sorry to hear this. I had a thing last year where I got a rash around my belly and I thought that was a low dose of shingles. Well stay indoors and I hope you get better soon.

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Bassetmommer
BassetmommerNKF Ambassador
in reply to rabbit01

Thank you. I am going to take it easy.

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rabbit01

Take care. All things will pass. Reach out to us for support.

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Oldearkie

Hurts don't it? This is the pain from Hell and feels like being jabbed with ice picks. I was ready for a lead injection in my ear. The prescription injections and other meds were a joke, and expensive too. Not having anything to lose, I literally stumbled, bent over with pain, into the office of a local acupuncturist. An hour later, I walked out pain free. Best $100 I've ever spent. Caution: if you decide to try this, go with a reputable, graduate in oriental medicine. There are lots of charlatans out there. I got lucky and her husband is a chiropractor, if I ever need that. Usually one or two visits a year works for me.

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Bet117
Bet117NKF Ambassador
in reply to Oldearkie

Thanks!

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rabbit01
rabbit01
in reply to Oldearkie

Well that's incredible

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Celtic

Feeling so sorry for you, Bassetmommer, especially as I am watching my hubby experiencing what must be one of the worst cases of shingles around. He was diagnosed 4 weeks ago with it in his right eye and head. GP prescribed Acyclovir and referred him to the hospital eye clinic as an emergency. The ophthalmologist diagnosed conjunctivitis and blepharitis as a direct consequence of shingles and prescribed Gancyclovir eye drops which I inserted 5 x daily for 2 weeks. However, there is no let up in the pain and yesterday he was prescribed a low dose of the painkiller, Pregabalin - low dose because he is on a load of medication, including blood thinners and treatment for aggressive cancer.

Bassetmommer, one tip that might help you is the recommendation by our surgery yesterday to dissolve some salt in cool boiled water, bathe the area and then apply Calamine Cream (not lotion because it’s too drying). I do hope that you will be one of the lucky ones and find that the nerve pain soon resolves for you. Do have lots of rest. Lots of good luck wishes.

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Oldearkie
Oldearkie
in reply to Celtic

See above what I do for the pain from Hell.

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Celtic
Celtic
in reply to Oldearkie

Yes, thank you, Oldearkie. I had already read your post when it appeared yesterday and relayed the info to my hubby. If by any chance you’re resident in the UK, would you mind me asking roughly whereabouts you are - your recommended acupuncturist doesn’t by any remote chance happen to be anywhere near us in Surrey UK does she?

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Oldearkie
Oldearkie
in reply to Celtic

Sorry, I'm in the USA. I could be specific but it wouldn't do you much good. I do have an ex somewhere in England. My heritage is From Lea Lord Dudley, on Lea River, in Lea county , in Cheshire, England. Or so I'm told by family.

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Celtic
Celtic
in reply to Oldearkie

I guess the USA would be a step (or two) too far! I have just discovered our GP surgery has contact with an acupuncturist so will make enquiries about this when it opens tomorrow. Many thanks again.

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Celtic

Thank you Celtic,

I probably will have to go to the doctor again as it did get into my eye. GRRRR.

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Celtic
Celtic
in reply to Bassetmommer

Oh my goodness. Do see an ophthalmologist as an emergency - if you are found to need them the eye drops should offer some protection from long term problems. My hubby’s nerve pain is driving him mad so I guess the pain-killing Pregabalin dose will be increased tomorrow. Here’s crossing my fingers for both of you.🍀

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Bet117
Bet117NKF Ambassador
in reply to Celtic

I am with you! ❤

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Jayhawker

My PCP definitely told me to get in for a Shingles vaccination so I'm headed in for the shot(s) on Monday. I'm now realizing that it may be two shots instead of one????

Anyway, hoping you recover soon!

Jayhawker

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Jayhawker

Thank you. You take care too.

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Oldearkie
Oldearkie
in reply to Jayhawker

If that don't work for you, see above for what works for me.

Rock Chalk, Oldearkie

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Bunkin

Oh no! I’ve had shingles before and it never entered my mind about it coming back. Vitamin E is great for shingles and I’ve been taking vitamin e for years now. Prayers you feel better soon!

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Bunkin

Thank you for your concern and prayers

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Bassetmommer so very sorry to hear you have shingles...pain from Hell for sure!

Please take the best care possible of you, dear one!

Daughter in her 20's had shingles and then a year later, they returned. Beyond awful!

I'd had chickenpox as a child so did get both vaccinations.

Don't know about acupuncture for shingles but I can absolutely attest to the pain relief experienced from a back injury that "traditional medicine...pain killers" did nothing to aleve.

A friend suffers with horrid migraines and acupuncture is the best reliever she's found.

Agree with Oldearkie to be sure that that the practitioner is reputable.

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Bassetmommer
BassetmommerNKF Ambassador

Thanks you for your concern.

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Fatbuddy

Hope you get better soon. With medications -- less pains ?

Thank you for the information. In USA, I had one shot few years ago , I remember - I have NO idea about two steps. Here - GP / PCP - recommends - for every one over age 65 --

There is anew kind - improved shot available last year -- I did NOT take it --but now planning to take it soon.

One of my friend - senior ( just turned 80 ) - had shingles several months ago - and he said there is NO medicine - he suffered for over 2 months - mostly bed rest. His wife used fresh

Aloe Vera leaves to make juice - kind of paste ( pulp ) and spread all over body - to feel comfort. He is diabetic and have had bypass few times and now has a DeFibrilator. He is

recovered now.

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Fatbuddy

Hi Fatbuddy,

I am on medication and Tylenol. I did not get the shot based on what my doctor thought at the time. I am on a immune suppressant drug and was advised to wait. I do not use that PCP anymore..... for other reasons but this is one more.

There is medication...antiviral drugs for this but you need to get on it asap, like 72 hour from onset, and it is toxic to the kidney. That is why I am on a very low dose of famciclovir which is supposed to be ok for kidney in short term.

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Fatbuddy

Here in USA - we have to have PCP- for any prescription drugs - to be paid by insurance.

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Fatbuddy

yup I too live in USA

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Zazzel

Oh you poor thing! I’m so sorry. I had shingles several years ago, not fun! I’m glad you caught it quickly and thanks for the reminder about the vaccine. You can get one even if you’ve had shingles. I hope it clears up quickly!

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WYOAnne
WYOAnneNKF Ambassador

I went for my flu shot last week and found out from the pharmacist that there is a new shingles shot. or should I say shots. You get the first one now and the second 2-4 months later. It is suppose to be more effective and for me, a transplant recipient, it is NOT a live vaccine. I am going to ask my nephrologist about when I see him in a couple of weeks.

Too bad your doctor didn't suggest you get it! So sorry you got it. I understand that it is very painful. Take care!

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Jayhawker
Jayhawker
in reply to WYOAnne

WYOAnne,

My PCP strongly advised me to get the Shingles shot(s) so I'm going in for the first shot on Monday. But when I called the pharmacy to see if they had the vaccine in stock the pharmacist specifically asked me if my PCP had said to get the shot. (The pharmacist knows I'm in stage V without dialysis.) So, is the vaccine you mentioned that is safe for you with your transplant the same vaccine we're all receiving? (I'm hoping it is and so will be totally safe for me as well . . . )

Regardless, I'll get in to get the vaccine. I believe it was on a list that the transplant center has shown me as well but may not be remembering that correctly. (II'm still waiting out a final decision from the transplant team. They did want me to get a colonoscopy after all. That is scheduled for this Fri, Oct 18. I'm hoping I'll get their decision shortly thereafter . . . )

Jayhawker

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WYOAnne
WYOAnneNKF Ambassador
in reply to Jayhawker

The only problem with the Shingles shot is that it is very high demand. My pharmacist said he couldn't guarantee me how long he would have it in stock and then when he would get more. My nephrologist and my transplant center both told me to "..not walk, but run to get the 1st of the series of 2 shingles shots." I will do...

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Jayhawker
Jayhawker
in reply to WYOAnne

Thanks! I’m scheduled for the first of the two shot series at 1 pm today.

Jayhawker

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Jamok

I’m so sorry! I have had it twice. The first time when I was 40 and then just last year at 56. I am contemplating getting the vaccine but a friend told me there is an ingredient in the newest vaccine that is contra-indicated for people with CKD?

Plus I have an immune disorder called sarcoidosis so have really been on the fence. Will have to talk to my doctor. Hope you’re healing goes quick. It did for me -I took the same antiviral you are on plus my doctor gave me a prescription for Lyrica for the nerve pain. Rest is very important as well.

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WYOAnne
WYOAnneNKF Ambassador
in reply to Jamok

The Shingles series of 2 shots is not harmful for those with CKD or with someone like me, that is post transplant. This series of 2 is suppose to be a lot more effective than the previous shot that was a live vaccine. Also, if you had the first shot....you should get this series!

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Oldearkie
Oldearkie
in reply to Jamok

You might consider acupuncture. It worked for me when the pharmaceuticals proved to be useless. It's painless, quick and economical. Research a bit to find a genuine graduate in oriental medicine. Sorry to say but there are charlatans out there just like in all branches of medicine.

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Mr_Kidney

The Shingrix shot is not harmful to anyone with CKD. If I may suggest, set up an account on drugs.com

You can list all of your medications and be immediately informed of any possible interactions. You can also get their daily drug summary which will inform you of all new medications coming on the market as well as medical alerts you should be aware of. This is how I learned that the original shingles vaccine was not as effective as thought and the new Shingrix was highly effective. Simple questions followed when I spoke to my pharmacist and then my PCP to know that the shots were safe for CKD patients.

Their alerts are where I also learned about issues with other medications and led to questioning my doctors about the efficacy of taking them.

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Jayhawker
Jayhawker
in reply to Mr_Kidney

Just got the first of the two shingles shots around noon today. So far so good. No side effects at all yet. My arm feels fine. And I otherwise feel totally normal.

The second shot will be between Dec 14th and the end of the calendar year.

Glad I found a pharmacy with the vaccine in stock!

Jayhawker

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Mr_Kidney

Glad to hear it. I also had to look around for the 2nd shot as I was traveling in Minnesota that summer. I found it at a Minute Clinic in St. Cloud after a half dozen attempts at Walgreens.

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Jayhawker

Okey, an update. I had the first of the shingles shot earlier this week. I experienced absolutely no reaction to it. My arm was not sore. I had no cold-like symptoms. I’ll go back on Dec 14 for the second shot.

Jayhawker

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Jayhawker

Good for you. I have been asking around and it is not even available in my area and I don't live in a rural area. There are waiting lists to get the shot. Amazing.

Did medicare or your insurance pay for it?

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Kakieface

My mother is in her sixties, is in stage 3 CKD, has psoriatic arthritis, diabetes, and was just diagnosed with shingles. She was still prescribed Valacyclovir, and we are all very worried. I’m freaking out a bit. Since your situations are so similar, I am happy to have found this post. Are you better yet? Is the famcyclovir helping?

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Bassetmommer
BassetmommerNKF Ambassador
in reply to Kakieface

Hi Kakieface,

Yes, they did resolve but it took a month. I was on a similar drug from the same family called famciclovir and a very low dose. BUT.... the shingles did get into my eye. I went to an eye doctor every week during the month to make sure it was ok. Then, one morning I woke up and I could not see clearly out of the eye. I had been noticing the blurriness for a couple of days but then it got really bad. Went to the doctor who said the eye was fine but...I have a gigantic floater that is in the eyeball itself. It is so big that it covers the vision path. I can see it all the time. It is like looking out through Vaseline all the time. It never goes away. He said there was nothing he could do and I would get used to it...... HELL NO.

Next week I am going to a special eye doctor to see if we can do something, maybe with a laser to break it up. It is really bothersome as it catches light and makes it hard to read and drive.

Shingles is no fun. Having loss in my eyesight is terrible.

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