I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MooseMom on September 20, 2018, 09:47:57 PM
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I know we're not supposed to have the shingles vaccination because it is a live virus.
I went in for my flu shot the other day (I just went to Walgreen's), and as I was filling out the consent/patient info form, they asked if you have cancer or any take certain meds that affect your immune system. They spelled out specific meds, but none of them were the usual meds that we have to take.
So I asked the pharmacist who administered my flu shot and asked if it was still the case that tx patients should not have the shingles vax. He said to ask my tx coordinator (well, no surprise there), but he went on to say that there is a new shingles vaccination that uses DEAD virus and that it might be possible that I could have it.
Has anyone heard of this new vaccination? Have any of you had it? I thought that was really interesting because a colleague of my husband got ocular shingles and was in a right state for months. I know I have the virus already and would like to avoid it blowing up into shingles!
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Shingles is your childhood case of chickenpox attacking you again. I've had shingles and have had the shot. If you have never experienced shingles, I can assure you that dead or alive virus the vaccination is the smart way to go.
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I did hear about the new shot and am looking to take it too. Shingles is nothing to mess around with.
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Thanks for that, lulu and Jean!
I will be seeing my transplant nephrologist in early November for my annual check up, and I will ask her about it. If she clears me to take it, I will certainly do so. The Walgreens pharmacist said that it is very popular and that they have had trouble keeping the vaccine in stock! I guess that now that it is made with the dead virus, many more people are able to get it.
It seems to me that transplant centers should notify their patients about things like this. The literature they give me is now 6 years old and is obviously a bit obsolete!
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My neph told me to get the Shingrex vaccine now (this was a while ago) because it was a one-time vaccine and as a live virus it was as "right out" after transplant as counting to 5 before tossing the Holy Handgrenade of Antioch.
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I had been on the list for two years and was about to get listed at a second center when I first asked about the (then) live vaccine, so this would have been about 7 years ago. I was told that I could have the vaccine but that then I would be ineligible for a transplant for the next three months. I just KNEW that if I got the shot, the PERFECT kidney would be available to me before that time was up, and I dared not take the chance. So, I've been kind of living in dread of shingles. My dad had them many years ago, and it was not a pretty site. I happened to be visiting him when he asked me to look at his back because it felt weird. He lifted up his shirt, and I saw immediately that it was shingles. I'd never seen shingles before on a live person, but I had seen some photos, and my dad's was picture perfect.
And then when I heard about my husband's colleague having shingles in his EYES...! Arrrgh!
So, thanks for that, Simon Dog!
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My clinic told me no problem, no waiting period.
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I had my 6 months' visit at the transplant clinic yesterday and asked my neph about the new shingles vaccine. He said that there was some concern that the vaccine would improve the immune system (bad for transplant patients) so they're waiting for a study of the new shingles vaccine and transplant patients to be published soon. We agreed I'd ask him about it at my next appointment in the spring. I had the live shingles vaccine about 6 months before my transplant and would like to get this new one, if it's allowed.
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If you can find it anywhere, the two-dose Shingrix vaccine is preferred to the single-dose Zostavax. The latter consists of a live virus, the former a dead one, or as they prefer to say, a non-live one. The problem is that pharmacies don't have it in stock and don't know when they'll be getting it in.
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There is a lot I do not understand here.
Lulu mentioned that she has had shingles, then went on to say she has since has the vaccine. I would have thought that after having the bug she would have developed the immunity and not needed the vaccine.
Soo mentioned that she has had the live vaccine and is waiting to see if she can have the newer version. One 'live' vaccine isn't enough?
Wife had shingles around her left side at the waist. It looked like a Mid-Evil curse. The meds were crazy expensive back then. Her pain was un-immaginable.
I had about a 2 1/2 inch 'spot' of white pus blisters low on the inside of my left calf. No pain. Just a messy sore. Our Dr told me it was shingles. This was in the late 70's.
So since I evidently have had shingles do I need to have the vaccine?
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I don't remember saying I'd had the live virus vaccine. I have not had a shingles shot at all. I see the post and apparently left out the word "not".
That said, however, I do think the shot is a good idea.
If your "spot" was not painful and healed unaided by any professional treatment, that doesn't sound like shingles. Not like mine at all. Not saying it was not shingles only that your description is very different.
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My understanding is that the new shingles' vaccine (Shingrex) is more effective than the previous vaccine (90% vs 67%). Having shingles once does not prevent you from getting it again. Unless you realize you have shingles quickly and get treatment for it ASAP, the pain might never go away even though the rash does. My poor father-in-law didn't get treatment quickly enough and for the remaining years of his life anyone who gave him a hug caused him great pain. An effective shingles' vaccine is a wonderful thing. I hope I will be able to receive the new one.
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I don't remember saying I'd had the live virus vaccine. I have not had a shingles shot at all. I see the post and apparently left out the word "not".
That said, however, I do think the shot is a good idea.
If your "spot" was not painful and healed unaided by any professional treatment, that doesn't sound like shingles. Not like mine at all. Not saying it was not shingles only that your description is very different.
I make lots of posting errors. Fortunately most are simple spelling errors and Cass stays busy correcting me.
It was crazy how my 'spot' remained localized where my Wifes obviously followed the nerve path from her spine clear around her side to within a quarter inch of her belly button.
But they were the same raised white pus blisters and our Dr convinced me that I indeed had shingles.
The question still remains, do those that have had the virus have an immunity and do not need eother of the vaccinations?
I haven't gotten a clear answer from my VA Dr yet.
I suppose it wouldn't hurt to have it, just want to know if it is really necessary.
I do get all the required and advised shots. Just like our Dog.
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I know I'm biased, but get the shot! The shingrix is killed and safe for transplanted patients. Its actually two shots.
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Charlie, maybe you have Herpes (2) which is more localized, also makes blisters and is unpleasant. But not nearly as unpleasant as Shingles. I have Herpes 2 on my lower back. I've had it for decades. It "blossoms" when my immune system is low. I don't like vaccinations and refuse some of them. I didn't give them to my dog (s) either. Instead, I did blood tests on my dogs that measure the titer of disease resistance. Too many (annual) vaccinations weaken the dog's immune system. I do give Rabies shots because they are mandated.
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Doc definitely told me it was shingles on my lower inside calf.
Herpes/cold sore I do get on my lip rarely. No other form.
But you did cause me to chuckle.
I've never heard of herpes other than the cold sore type or the sexual type. Never heard of it breaking out anywhere else. Strange.
The cold sore blisters are clear filled blisters. Those blisters on my calf were definitely filled with white, and a whole bunch of them localized, not at all like following along a nerve path. Or maybe I am wired differently.
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What I get is Herpes 2 (AKA sexual herpes), but that form of Herpes can form anywhere below the belt and isn't always from sexual origins. Nasty stuff.
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So the Type 2 virus CAN invade most any skin exposed to live virus, relatively fresh from a host. This makes sense.
I didn't know that, and doubt many people do. This is not something normally taught in schools but maybe should be.
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... as counting to 4 before tossing the Holy Handgrenade of Antioch.
Huh... Don't know what you meant by that but it sounds like quite the adventure.
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Yeah, Charlie, get the vaccine. According to the CDC, it can help prevent a recurrence of the disease, or make future flareups less painful. It says to wait until the rash has disappeared before getting vaccinated.
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... as counting to 4 before tossing the Holy Handgrenade of Antioch.
Huh... Don't know what you meant by that but it sounds like quite the adventure.
https://www.youtube.com/watch?v=QM9Bynjh2Lk
The Holy Hand Grenade is in the second half of the video. I had to correct my original post - it is counting unto 5 that is "right out".
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I've run into two problems.
1. Access. There are waiting lists in my area for the two shots of Shingrix.
2. Insurance. I'm on an HMO so need a referral (I called my insurance company). I then called my PCP's office, and first they said they don't "do it" (as in they don't offer the vaccine). I called them again to ask about how I go about getting it, and then they said they DO have it and would have the nurse call me back. Never heard back from them. I just haven't yet found the will to argue with these people about yet another issue.
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I was told to stay clear of a shingles-vaccination because they are a "life-vaccination" and life-vaccinations are too risky for kidney-transplants. Please find out more details about this question from your nephrologist/doctor.
Best wishes and good luck from Kristina. :grouphug;
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I was told to stay clear of a shingles-vaccination because they are a "life-vaccination" and life-vaccinations are too risky for kidney-transplants. Please find out more details about this question from your nephrologist/doctor.
Best wishes and good luck from Kristina. :grouphug;
Kristina, there is a new shingles vaccination that uses the dead virus, and it is called Shingrix. https://www.cdc.gov/vaccines/vpd/shingles/public/shingrix/index.html
I did not know it existed until I happened to overhear an older couple talking to the pharmacist at Walgreens (aka Boots in the UK now that they've merged) about it when I was there for my flu shot.
Unfortunately for those of us in the US, there is a nationwide shortage, so at the moment, I can't find it.
My transplant neph is very eager for me to get it. I don't know when that will happen, though!
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May I ask a really dumb question? Heaven knows that's my reputation here! :bandance;
So, in Canada, we have Shingrix commercials on tv and there are posters for it in the pharmacy, at least the one I go to. I knew it was a shingles vaccine, so I thought it wasn't suitable aka live vaccine, but now I see it's not, and suggested for tx patients.
It's noted that it's used to prevent shingles for people over 50 years of age so, my question is, does one have to be 50 and over to receive it? I'm a walking virus and infectious disease factory so it got me wondering. I'd email my tx team about it but I don't want to ask and then be told I'm dumb since it's not for my age group (yet...).
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May I ask a really dumb question? Heaven knows that's my reputation here! :bandance;
So, in Canada, we have Shingrix commercials on tv and there are posters for it in the pharmacy, at least the one I go to. I knew it was a shingles vaccine, so I thought it wasn't suitable aka live vaccine, but now I see it's not, and suggested for tx patients.
It's noted that it's used to prevent shingles for people over 50 years of age so, my question is, does one have to be 50 and over to receive it? I'm a walking virus and infectious disease factory so it got me wondering. I'd email my tx team about it but I don't want to ask and then be told I'm dumb since it's not for my age group (yet...).
That's not a stupid question at all. On the one hand, shingles tend to strike people who are older simply because they have "older" (ie, suppressed) immune systems. Tx patients also have suppressed immune systems no matter our age. It is certainly worth asking. I suspect your tx team would be happy to have a patient who thinks about these things!
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So, I was in the hospital due to.... immune blow out concerns!
But anyway, the point of sharing that, is that I finally got a definitive answer on this topic and thought I would share.
The tx infectious disease doctors gave my file a good going over and out of the blue, I asked about the shingles vaccine (Shingrix). As I said here before, I've not yet hit 50, let alone 40, but alas here we are, immune compromised and all that. They said most definitely I should get the Shingrix vaccine. No ifs, ands, or buts, I'm just as susceptible as a senior citizen now, due to my immune status. MooseMom, correcto mundo again!
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Similarly, you should get your flu shot from your neph if you are under 65. (S)he may want you on the high dose flu shot instead of the regular, and this takes a medical order. Unless you lie about your age you won't get the high dose before you are 65 by getting the shot from your local pharmacy or flu shot event without an MD order.
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So, I was in the hospital due to.... immune blow out concerns!
But anyway, the point of sharing that, is that I finally got a definitive answer on this topic and thought I would share.
The tx infectious disease doctors gave my file a good going over and out of the blue, I asked about the shingles vaccine (Shingrix). As I said here before, I've not yet hit 50, let alone 40, but alas here we are, immune compromised and all that. They said most definitely I should get the Shingrix vaccine. No ifs, ands, or buts, I'm just as susceptible as a senior citizen now, due to my immune status. MooseMom, correcto mundo again!
Oh dear, I hate to ask, but what does "immune blow out" mean? If you were in the hospital, it can't be good. Is everything OK now? What happened?
I'm glad, though, that you were able to get a definitive answer about the Shingrix vaccine. It was a good question you raised!
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Yep, right on about the flu vaccine at the doctor's office for the under 65 crowd! :thumbup;
MooseMom, as you know, we have compromised immune systems to begin with and then stress (in general) wreaks havoc on anybody, even the healthy. My boss was piling on the work on a case/file/report because I'm the junior in the firm. 15 hours+ some days. High stress because he would micro-manage over me too. Add in only sleeping for 3-4 hours a night. Personal problems adding emotional reactions. This went on for awhile until I developed a fever and bone/joint pain that made it difficult to put weight on my legs. I rang the renal clinic who told me to ring the tx clinic (out of town). They made arrangements for me to get down.
I created a situation in which my (now diagnosed) chronic stress weakened my already compromised immune system, and as a result, allowed viruses they'd been monitoring to become active, as well, as general body saying, "No, white flag here"
Obviously, I was advised that I "have to" make changes for the "longevity of my transplant." As if that doesn't add more stress right now... It's tough to talk about it with the older generations (parents) because they start with, "Back in my day, we didn't have stress leave. You think we didn't have stress? You kids today are soft." So, I'm still pulling my hair out, but I have to remind myself about my transplants.
But hey, I am high priority for Shringrix... yay.
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UT, thanks for the explanation; I am really sorry that you've been in such stressful situations for such a long time, so much so that your body finally had to yell and scream at you!
It is so silly when one generation demeans another and dismisses their experiences. Every generation experiences stress generated by their unique times.
I hope you are able to somehow rearrange your life so that you can stay healthy.
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Thanks.
I've decided that once some cases/reports are concluded, I'll look for another job. Just want to last long enough for me to be able to get credit. This is no life, especially getting sick. It doesn't mean I'm a failure, I just need to handle this package (body) with a little extra care.
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Thanks.
I've decided that once some cases/reports are concluded, I'll look for another job. Just want to last long enough for me to be able to get credit. This is no life, especially getting sick. It doesn't mean I'm a failure, I just need to handle this package (body) with a little extra care.
You're right. It doesn't mean you're a failure, rather, it means you are smart to follow your sense of self-preservation. It's not "failure" to reassess.