New shingles vaccine "Shingrix" IS working!!

I suffer with PHN. After 10 months since I had shingles start. I just got the shingrex vaccine last week and so far no side effects. I’m not sure if it will help the PHN but I took the risk as I don’t ever want to have shingles again. I am 76 and in good health but afraid for the coming years that my immune system will weaken and that would make it so easy for the shingles to return .

Sheila

Can I ask if only you got shingles once and after those 10 months you got the shingrix vaccine!  During those 10 months you didn’t get any bouts?  How can you not know if you would only have gotten shingles just that one time?  I will be 65 in July and got Shingles in February and a few days ago got a mild bout after almost 4 months!  I am afraid to get the new vaccine because I am a sensitive person to most meds!  You say no side affects?

Myrna

Myrna, I'm normally a very logical, disciplined person, but I like you have this probably irrational worry about getting this vaccine.  I'm NOT an anti-vaxer, but I had a true reaction about 7 years ago to the flu vaccine, similar to Guillian Barre syndrome. My doctor said it shouldn't happen with other vaccines, but like you, I'm very sensitive to meds. I tell myself, why would you want to risk getting shingles again? This is VERY effective! Yet, I'm very, very hesitant about getting it. I think I'll wait a while. My shingles was 10/2016, and my PHN is improving.

Hello

Well I am guessing that you got shingles in October 2016,  but after that you say you also have PHN so in between did you get more bouts or not?  Because if you didn’t and only have PHN I believe you have a great chance of nothing repeating shingles!  If the pain is getting better and they say it can get better as time goes by I would actually wait too before getting the new shingle vaccine!  I too a while back got the flu vaccine and got a terrible reaction so yes I am scared of getting vaccines!

I only had the one case of shingles and have had PHN since then.

What do you take for PHN?  I had a case of shingles in February but a mild one 4 months after!  It’s the PHN and itchy scalp!  Was yours on the scalp too?

Hi Penny. Yes, i have the PHN along with the shingles. Even when the shingles were not present, the PHN was often there. After many different pain relievers, it finally took high doses of Dilaudid, Morphine, Amitriptyline and Clonazapam, which is why I don't EVER self-medicate. My husband or a family member gives the meds to me as it is needed. My PHN is in my right leg and in my head, face, teeth, ear and eye.

My case is somewhat complicated. My shingles began 8 years ago on my hip only. I was diagnosed with recurring shingles and placed on a daily low dose regimen of Acyclovir that continued to be raised in dosage, until the outbreak finally became less frequent. It took 3000 mg per day, every day but they slowed to only a couple times a year.

During that same time, i began to get a mild rash, not blisters, but a very mild rash on my nose and right side of my face. That was my only symptom at first for a several months. They rash didn't hurt at all but the very tip of my nose hurt tremendously to even be touched slightly. It would come and would back off but would never go away completely. I saw my doctor and a dermatologist. I tried creams and oral meds. No help at all...totally unfazed.

Then i began to get sensations to the way back under my tongue. Weirdest feeling ever, not extreme but twinges of pain, not sharp, not burning, just pain. This would come and go and lastest a few more months. Thereafter, came pain in my head and forehead, much like I'd been hit suddenly, then gone. Then the ear ache came.

I was probably 10 months into this when, on occasion, i would feel a quick jerk in my head. Like i was quickly nodding yes. It came and went but was getting stronger and more often. I saw Infectious Disease doctors, Neurologist, Internest.

Other than the jerking back of my head, all of these symptoms were always focused more on my center and right side, same side the shingles on my hip had always been but it didn't look like shingles, or act like shingles and i was taking 3000 mg a day every day for a couple years at that point. So shingles was ruled out as the cause.

Then one day at home, i received a call from my Mom, who lived out of town. She had been showing possible early signs of dementia for a couple months and she was even getting verbally aggressive, which was totally out of character for passive personality. This particular day, she called me and verbally flew into me with fury, then she hung up the phone. My Mom and I had ALWAYS been very close, so the phone call upset me terribly but literally before i could even cry, my head began to jerk violently and repeatedly. It didn't stop this time. Felt like I was going to snap my own neck.

I was rushed to the hospital, seen quickly, CT, MRI, total work up and given meds in my IV that made the jerking stop as long as i was laying still. They were looking for a brain tumor. The rash was there but it was mild. While waiting for the results, i had a pain hit me in my ear, like a bee sting to my eardrum, then back to my cheek. I screamed. The pain began jumping back and forth, like lighting in a bottle, and began to feel like lighting in a bottle. It bounced from my ear, to my cheek, to my teeth, to the top of my head, to my chin. It moved fast and it was like electric shocks.

The rash started to turn fiery red and my eye was swelling slightly. Every place it hit, i grabbed and could only scream. The attending doctors sedated me. I woke up in a hospital room later that day. These episodes kept coming but were getting worse the day. Each time, i was sedated. Many doctors were consulted.

Due to the high dose of antivirals and no outbreak on my hip and nothing to suggest that it was shingles elsewhere, it was decided that due to me being on the high dose antivirals for so long, that my body may have possibly gone toxic. So, while sedated, my IV antiviral was discontinued to see if i improved. I woke up in a living nightmare. The pain was a literal lighting in a bottle, the mild rash expanded quickly across my face, my right eye was swollen to nearly shut. I was losing my vision in that eye and all I could do was scream, if i was awake.

Another specialist was brought in. He was very kind and very patient. I was awakened and immediately began to scream before my eyes opened. The doctor began to ask me specific questions about the path of the electric shocks. I was still heavy under sedation but managed to speak in sentence pieces. With the help of my husband assisting, i tried to answer his questions best i could. Then I was put back under for 3 days.

When i woke, it was then that I learned that the shingles was actually in my eye. The high dose antivirals was keeping it masked and i had actually had shingles near continuous for 14 months. It damaged my fifth cranial nerve, leaving me with mioclonic seizures (head jerks sharply) PHN and Trigeminal Neuralgia.

Truthfully, when i took the Shingrix vaccine, i did not expect to have ANY relief at all from the nerve damage and was satisfied if i could at least lessen the shingles outbreaks. I read every article published by the CDC and their research these past 5 years before the vaccine was approved this past January. It makes the claim that it has a 97% success rate against shingles but it ALSO claimed to help with the PHN but i doubted it help me, in my case.

I just spent my fourth day with NO pain. I have taken nothing for pain and even my mioclonics have begun to calm.

I am realistic and knowing 14 months is ALOT of damage, so the pain may return. I am still taking the mioclonic seizure med at bedyime still but i am in NO pain anywhere.

Maybe this is only temporary, or maybe they finally found the cure, i truly do not know but for now, the vaccine appears to be working for both the shingles and the PHN.

I hope this gives you the information you were looking for and i am truly sorry if you are hurting. God bless you, friend.

Hi Ms Sheila. I saw your post and hope you don't mind me responding as well.

I took the new vaccine Shingrix on April 2nd and scheduled to take my second dose on Saturday. I've had reoccurring shingles for 8 years and also have PHN.

Truthfully, i was nervous about taking the vaccine for fear that the PHN would be made worse but had no choice because the shingles were coming more often.

For these past almost 8 weeks, i had seen no improvement...none. I had about given up hope till 4 days ago. It literally has taken nearly the full 8 weeks to see ANY improvement but now i see HUGE improvement. I am in NO pain.

Also, the CDC has posted all their research online to be viewed publicly. This vaccine actually works to also improve your immune system itself.

I hope this helps you. God bless. Take care, friend

~Rhonda

Finally I can read your whole story and my heart breaks for you!  You have been in hell and back!  So after all that you explained to penny it was a bad case of shingles after all!  I do want to know after the second vaccine did you get any blisters?  Are you still taking anti virals!  I know you stop all pain meds,  but would like to know if still today you are still taking anti virals?  If yes are they daily and what dose?  I pray you are free of pain!  

I don’t understand why that fierce attack of shingles?  Could it been long term use of anti virals?  You say they stopped them while you was at the hospital and the reoccurrence of shingles was worse,  so did they put you back on anti virals after that?  Are you still taking anti virals today and what doses?

So I am thinking that the seizures were not the anti virals affect if they put you on them again right ?  You say you have been taking them for years!!

Pls let me know how you are!!

Blessings 

Myrna

Thank you Babs. I actually wore makeup today for first time in years. It felt great!

I'm going back for my 2nd dose this coming Saturday. I feel hope again : ) Take care of yourself and I will keep everyone posted how its going. Hoping thus works for us ALL : )

Yes ma'am Ms Sheila. I will be sure to let everyone know how its going. Happy to hear you also went to get your first dose too : ) Please let me know how you are doing too. God bless

Rhonda

Today you was going for your second vaccine!  Let me know how it went!!

I will go to my doctor on June 18 and ask about anti virals if I should take another dose or what and ask about The shingrix too

So glad for you!! I wore a little makeup too 

Still have a little blister and some pain though!

Are you still getting blisters or not?

Myrna

Hi Myrna. So sorry it took so long for me to respond to your messages. I know i sent you a quick message about a week ago but truthfully, with all of the residual meds that were in my system at that time, i don't recall when exactly I sent it or exactly what I said, other than i was doing okay. Truthfully, i don't kniw who all i have answered but I do remember responding to you.

How are you, friend? Happy to read that your house is restored again. I can only imagine how wrecked your nerves are at the thought of this hurricane season. I'm sorry, sweetie. I would be and anyone would be, feeling the very same after all you went through. It is going to be okay. Keep telling yourself that. It is going to be okay. Why? Because a whole bunch of people are going to be praying for you, that's why : )

Did you see your doctor yet about the Shingrix vaccine? I'm sorry that the sensitivity concern is there. Not sure if this will make you feel better or not but i DO know that this vaccine had great results through the testing faze, before it was released to the public. Also, it is being given to active cancer patients and the CDC online documentation is saying that there have been no problems out of the ordinary reported for the past 2 months, after literally 100's of cancer patients receiving this vaccine. So there's that. Also, when you consider my own case of having to take both doses with active shingles both times and i am okay. I'm actually doing great. I've had NO outbreaks and still have not been taking any pain meds for the PRN, since before my last message to you. I'm not saying that it was easy after the vaccine, which is why i strongly DON'T suggest anyone take the vaccine while fighting shingles. Believe me, if i could have waited till i was over the outbreak, i definitely would have, for sure. Most people are having a very easy time with it because it's not a live vaccine, like the previous one. My time was rough mainly because of me having active shingles when i took the vaccine doses, but i still don't have a single regret. I am getting my life back and actually feel like going places and seeing people again. I wish so much that i could say something to ease your worry, friend. You are too sweet to be sick. It WILL be okay : )

Please know that many here are praying for you guys through this season and i am here if you need to talk. You take care of yourself and tell hubby i said hello. I told my own husband about you as well. Isn't the internet just an amazing thing : )

You take care friend and please let me know what your doctor is saying. In the meantime. . . . . . .

No stress

Lots of self pampering

No alarm clock 3 days a week

Makeup at least 4 days a week Shopping EVERY Tuesday

Hee hee. Now if THIS regimen doesn't keep shingles away, nothing will. HA! Maybe i should've been a doctor. Sounds like an awesome prescription to me : )

~Rhonda