Shingrix THIRD DOSE

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Hello friends. I hope this finds you all doing well this Christmas Eve night. I have not posted in a while but i have not forgotten any of you or the wonderful support you all gave to me at one of my lowest times.

Those of you, who know me, are aware that i took the Shingrix vaccines June and August 2018 and had amazing results after. I did have to take both vaccine doses, with active shingles, and this caused the side effects to be severe at first but the aftermath made it all worth it. Other than the damage caused to my fifth cranial nerve, from having shingles in my eye so many times over 8 years, that resulted in Trigeminal Neuralgia, i did get my life back again, after taking the 2-dose vaccine.

Unfortunately, things changed thereafter. The doctors do not know if the physical pain of Trigeminal Neuralgia (TN) caused the shingles to return, or if the shingles returned on their own and are bringing on the TN. Either scenario, i have had several hospital stays since i last posted here on the site. Despite the reason unknown, after having both doses of the Shingrix vaccine, the shingles have returned.

I hope this does not discourage anyone from taking the Shingrix vaccine because it DOES work for most people. I still believe this firmly and believe my current condition is NOT the norm for most.

Despite CDC recommendation, 5 days ago, i received my 3rd dose of Shingrix vaccine and i DO intend to have the 4th after the normal two-month waiting period between doses. Like the previous 2 vaccines, i have also taken this latest vaccine with an active case of shingles...not that i had much choice in the matter, as the shingles were not subsiding. If this does not work, i have prescription to receive AGAIN, the live virus vaccine, Zostavax. Of course, ALL of this is being done under CLOSE doctor supervision.

At this point, i can only confirm that this route is not advisable, unless absolutely necessary, because the path is a rough one, but it is survivable. To my knowledge and my doctor's knowledge, i am the only one that has tried this so far. To confirm or deny, i hoped i might find the answer here. I am in a great deal of pain, with shingles appearing in several places on the right side of my body. Has anyone else repeated the Shingrix vaccine?

Merry, have you heard??

Merry Christmas to ALL.

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  • Posted

    I am so sorry for your pain and trouble. Wow! What an experience! H ave you gotten a second opinion on this? I hope you are covered by good insurance-those shots are pricey. Please get better soon-let us know. I had shingles all summer in my torso-got my first shot a month ago-waiting on # 2 in Feb.

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    • Posted

      Hi Laura. Thank you for your sweet concern and kind words. No, i did not get a second opinion but this has been my doctor for several years and i am truly blessed to have him. He's never let me down and he's always a phone call away. Due to the severity of my illness, we are even able to contact him on his private cell, 24/7. There have been many times, over the years, that my husband has had to page him for a hospital admission in the middle of the night. Again, i am blessed.

      You are correct that these vaccines are very costly but our insurance has paid for every shot, to include paying for this latest vaccine, even though i've already had it once before. The pharmacy only asked for a prescription, filed it to insurance and it paid 100%. Truthfully, we went in expecting to have to pay something this time but didn't have to. We are hoping it works this time but will keep you posted. You take care and stay well and good luck and prayers on your second shot. Hoping it works for you, friend. 🙏

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  • Posted

    I thought that you were not supposed to get a shingles vaccine when you have active shingles. I'm sorry you are going through this. Are you aware that others have gotten shingles from the active virus Zostavax? There are lawsuits.

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    • Posted

      Hi Babs,

      Yea, you are correct that you are NOT supposed to get the vaccine, with an active case of shingles and even now, having done it, i would strongly advise that no one do what i had to do because the side effects are severe. Even my own doctor advises against it and if i had another choice, i would not have done it either. Not would my doctor have advised it. But in my case, it was my last option. I've had shingles for past 8 years that began on my hip and came back frequently. But 5 years ago, the shingles began to happen in other parts on my right side, to include my right eye, which was the worst. Long story short, after many hospital stays, over 140 outbreaks and shingles becoming near constant, with no breaks in between, i had to eventually take the vaccine, while shingles was active because the shingles was doing constant damage to my fifth cranial nerve.

      I did take the Zostavax vaccine too but i had already had shingles many times before i ever had it the vaccine. Because i was only in my mid 40's, no one would give the Zostavax vaccine to me because i was too young, according to CDC recommended age. If i had gotten that vaccine years earlier, my quality of life would have been much better then and i would not be facing so much pain today. Despite the lawsuits, Zostavax did give me some relief, so i am desperate to try anything at this point. Basically, Shingrix gave me most relief but it was short-lived. Zostavax gave me less relief than Shingrix but it DID last longer. Out of options now and i will try anything.

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  • Posted

    I'm also confused by your comment that you took Zostavax with a live virus, but I read that it isn't a live virus.

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    • Posted

      Actually Zostavax is a LIVE vaccine/virus, much like the old measles vaccine, that actually give you a small case of measles and thereafter you SHOULD be immune to measles.

      Shingrix is NOT a live vaccine/virus, so it's safer for people with low immune systems. Also, because the Zostavax was a live virus/vaccine, it meant that anyone who had already had shingles in the past, needed to be shingle free before taking the Zostavax.

      Shingrix NOT being a live virus/vaccine, meant people who had previous shingles outbreaks COULD still have the vaccine, without a waiting period.

      But it is still CDC recommended, that you NOT get either one of these vaccines, while you currently have active shingles. And this CDC recommendation is correct and well-advised. I do not regret doing it myself because i had no other choice but i still would NOT recommend it to ANYONE else, unless it's their last option. Neither would my doctor. I knew the risks going into it and it WAS my LAST and ONLY option left.

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    • Posted

      ...To clarify a statement i made in my last reply to you, the old Zostavax vaccine recommended you to be shingle free for a FULL six months, BEFORE getting the Zostavax vaccine.

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    • Posted

      Thanks for your detailed replies. I've got several things working against me so I apologize for my curt previous responses.I'm out of town using my iPad and since this website's update it doesn't "play nice" with it so it is a real hassle to use, I'm dealing gab memory and cognitive issues due to my PHN and I had a typo regarding live viruses and the two vaccines. I do know which uses which. You sound like a very thoughtful, informed person doing the best you can with an untenable situation. I've read of too many people who blindly try things, not realizing the risks. I hope something does help. You're a brave, positive person. Good luck.

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    • Posted

      No worries, friend. I did not take offense to anything you said : )

      Sorry to hear you also suffer. The PHN, in itself, is so miserable. I'm sorry. Thanks for the vote of confidence. Yes, i have ready many stories, with many suggestions that i would not try myself either. But i did get some great advice from this site though, especially from a nurse on here, named "Merry".

      I have been blessed to have found a wonderful doctor who cares about his clients and takes a personal interest in his patients. I did try different specialists, naturalists, nutritionists and everyone in neuro.....you name it. But my current doctor is a true God-send and has been in this fight with me for several years now. I'm sure your own experience with shingles has shown you that it NEVER happens at a convenient time. For this reason, we have my doctor's private cellphone and he is a phonecall away 24/7, so everything we do is with his supervision. He was as nervous as we were with this latest move. The first few days were rough but i'm back at home now and taking it easy, hoping rough days are over.

      Thank you kindly for your concern. Very sweet of you. I sincerely hope that you are having luck with your own treatment. Please feel free to reach out anytime you need a friend : )

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  • Posted

    Yes, Merry is a treasure. I don't know what I would have done without her. I had been very active on the shingles forum but when it changed to PHN posted there more. Thank you for your support. I actually am doing much better. But the gabapentin is worse now than the PHN. My taper this month has been really rough. But in the two years since my shingles I'm down to 600 mg. But it's probably still better than recurring shingles.

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    • Posted

      I agree, friend that Merry is a real sweetheart. She advised me to try the Famcyclovir, after i had been on Acyclovir 3000 mg every day, 365 days a year, for over 5 years. Her advice came just in time, as the Acyclovir had built up to toxic levels in my body and was causing severe seizures. Taking Merry's advice enabled my doctor's to immediately pull me off the Acyclovir but still have a therapeutic level of anti-viral in my system, since i was already taking the Famcyclovir.

      Sorry you are having trouble with the PHN. Do hot or cold compresses help you at all? Most people on here and elsewhere, say they use cold compresses always but cold VERY painfully lights me up like a Christmas tree. I didn't understand this for a long time but since my pain is coming from mostly from Trigeminal damage, instead of PHN, the hot hot hot compresses, heating pads and heated rice socks bring me more relief than cold. Hope you get to feeling better soon.

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  • Posted

    Sorry to hear about your bad luck. I had the vaccine in two shots. Bad local reaction on the second injection involving my whole arm. I had the injections after 9 bouts of shingles. That was in June and New Years I got shingles again. I never have felt so low down in my life. I was feeling so good and thought I was cured. So so so disappointing and depressing. Now I am laying here feeling awful and knowing its going to happen again. I have read elsewhere that someone was having the second vaccine but don't remember where. Happy Stinking New Year

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    • Posted

      Hey Patricia. I'm so sorry, friend. I can relate to the depression and disappointment, having the shot let you down. I felt the very same feelings. I just wanted to crawl in the bed and stay there. Wanted to tell everyone just to leave me alone and i recall my spirit was so tired that i didn't even want to talk about it to anyone. It has been a rough go of it, since having the vaccine again, two weeks ago. Like a single day felt like several. The shingles have left me with the Trigeminal Neuralgia, from which there is no medication that gives relief from the pain.

      I do have some news though, that i wasn't going to share with anyone until i knew for sure if what i was doing, was going to bring relief or not. But then i saw your message here and you sounded exactly like me a week ago, at the lowest point in my entire existence and didn't even want to even hope for hope. Since my last posting on here, i went outside the realm of normal medicine and i am NOW trying something that i thought i NEVER would consider trying, but out of desperation, i was ready to try anything. I will follow through with repeating the second Shingrix vaccine in February but i am actually having amazing success with something else, than i ever had with conventional meds. Crazy as it sounds...i'm now using CBD Oil "Cannabinoid" oil. Yes, from the marijuana plant. It has no THC, so you dont get high but i'm not only gettimg relief from the PHN but also the impossible, i'm getting nearly complete relief from Trigeminal Neuralgia pain. It only lasts for 2-3 hours at a time and I have to take more, but those few hours are like a new life. It tastes awful but i don't care. I don't do drugs but i would have done mist anything for relief and have found it...no lie.

      The CBD oil is legal in all 50 states but it's not FDA regulated, so there's ALOT of hype, false advertising, hype and outright lies from people selling it. There's alot of confusing info out there that takes deep research to even understand their double talk sales pitch. But after ALOT of research and trial and error, i have found a good one that i can live with the price, being only $179 a month. To save you my large dose of confusion, i will just tell you the specifics that i ordered. Apparently, there's a difference between CBD oil and "PURE" CBD oil and the mg listed on the bottles are confusing people because if it says 1000 mg or 3000 mg or 240 mg....it's talking about mg in that whole bottle. Crazy nuts, i know! It's from MEDTERRA, all natural, 3000 mg, in 30 ml bottle is a month supply that someone in SEVERE pain would need. That's ME. But NO drowsiness or nausea or feeling hungover and just wanting to lay around with this. It does NOT make you high at all...zero high. But it does take away the pain. ALL the pain. You just have to get your dose right but since this stuff is all natural and it takes like 25,000 mg, to overdose, it's almost impossible. Only thing is that since it's not yet FDA regulated, ANYTHING you research to take with it, the info says it might not work well together. Like for instance...research online said NOT to take it with my Amitriptyline, Clonazepam or Dilaudid. Well, i don't need Dilaudid if this CBD oil takes away the pain. And same for Amitriptyline. As for Clonazepam, that's for my seizures, so i can't just come off that but since this stuff was originally approved for seizures, i'm hopeful. So far, i've had NO problems, using the oil during the day and with 25 mg Amitriptyline and my Clonazepam at night. I've tried the Koi Naturals oil and the NuLeaf and now the MEDTERRA. Koi was the weakest but i still had pain relief, felt more awake and had no side effects. MEDTERRA is best, since it's pure, so i only take about 10 drops, twice a day. Hardest thing about ALL this was getting past all the hype and false advertising and misleading info out there but at my time of desperation, i was willing to try anything. I am doing well but i got lucky, so PLEASE use MORE caution than i did, friend.

      I made this initial move without my doctor but brought my doctor into the situation the following day. Please see your doctor BEFORE you make any changes.

      I freely admit that i WOULD NOT have felt so free to try this, if i were on heart meds or blood pressure meds or diabetic. I mean, i would probably still try it but with a whole lot more caution than what I am using now. So PLEASE don't follow anything i suggest without having your doctor approve it. Truthfully, i'm feeling great and i actually have energy, not feeling like i usually do, too tired to even sit up or go anywhere. I'm oddly awake and out of pain.

      Like i said before, i was holding back saying anything on here, till i knew more but your message sounded just like me, so sad. So please don't give up. I know you are tired and sick and tired of being sick and tired but we WILL get through this.

      ❤TOGETHER❤

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    • Posted

      Sorry Patricia. I have responded to you but for some odd reason, my response is being "moderated". Hopefully, it will be released soon. You hang in there girl and take care of yourself. You are not alone 🙏

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  • Posted

    HELLO r f

    Its been a while and sorry to hear of the aftermath. I AM one here who knows what you have been through and so sorry to hear about the shingrex vaccine! I will not take it for the same reasons most people dont take it! KNOWN so many people who have taken it with no positive results! I BELIEVE once you get shingles you dont part with it! IT STICKS with you! I Thought they were gone after a full year on and off! I GET them every 3-4 months! Right now I thiught they were gone cause my scalp was clean, besides the nerve pain! I WAS clear since November and yesterday I was in pain and there was the blister!! I WAS mad, hurt and depressed!

    This is not going away! I HAVE flu symtoms and so much pain!

    WHAT I dont understand is why shingles dont go away when its on the scalp? My mom abd sister got shingles ONCE, under the brest and that was it! WHY cant it be like that for me?

    Please tell me i am wrong! I DO know yiur pain and what yiu gave been through as well! I Dont want to die with this! I want a normal life! IS that too much to ask? I AM tired of this pain over abd over again! I always have yiu in my prayers a d hope that one day this can be over for all who suffers this mad disease!

    Hope you can fight this! I Dont know if i can!!

    BEST regards,

    MYRNA

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    • Posted

      Hi Myrna. Great to hear from you, friend. I was down for while, feels like a long while. So, i haven't been on here very much because the shingles in my eye often makes it painful to look at my cell phone screen. For the Trigeminal Neuralgia, we finally got my dose right and it greatly helps with all the nerve pain, caused from both Shingles and the TN. So, there's some progress, at least. But yes, the shingles did return. The outbreaks now are not as bad or often as they were before taking the Shingrix vaccine. So, the vaccine did give some relief.

      Myrna, i'm so very sorry you are also still suffering. Thank you for being so sweet and supportive. I've thought of you often and wish i could take your pain away and let you have peace. I understand the complete let down, after getting the shots, when the shingles returned. When my shingles came back, i just wanted to crawl into the bed and be left alone. I cried so hard from the disappointment and truthfully, i even questioned if God was punishing me because i have also known MANY people around me that have only had shingles once and other people having it repeatedly but it was mild every time. Not that i or you would ever wish this agony on anyone, but i can't help but be envious and wonder why my case is so bad, while others can actually have a normal life, both with and without shingles. I get angry alot and can barely remember what "normal" feels like anymore. But, i want a life that other people have though and willing to roll the dice again, with retaking all these vaccines. I hope you do go get the Shingrix vaccine for yourself, sweetie. True, it might not work for you or me but if there is even the smallest chance of it working, we both deserve the opportunity. Taking the vaccines all over again, i am very hopeful but trying to not get my hopes up this time. Girl, i'm sorry for what you are feeling today. I've been there and it's a lonely feeling. Unbelievably odd that you sent me this message today because i ALSO had blisters show up day before yesterday and i have been laying on my couch for two days and crying at most everything. So, please know that you are not alone right now. You are NEVER alone because i know EXACTLY how you are feeling and you know EXACTLY how i am feeling and somehow, there's a special comfort in knowing someone else DOES truly understand. Please take care of yourself and i will be praying so very hard for you. You are a sweet beautiful friend. Thinking of you.

      ~Rhonda 💕

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