You are so right Myrna. Just the simple act of brushing your hair or brushing your teeth. Showers...forget it, ouch. Baths ONLY for me.
I know what you mean. I've missed so many events too. Doesn't it feel so bad to keep telling our young ones we just can't make it. Have missed out on so much
Hopefully not for long though. If this new vaccine Shingrix keeps working, i am making up for lost time : ) Fingers crossed for us ALL.
Day 4...NO pain : )
Hi Hector. Same here with the shingles in my eye. It began on my hip 8 years ago but then moved to my eye about year and half later. Been there ever since with too frequent bout of it by hip at same time.
You are spot on correct, friend. Yes, i read the same. This thing is pretty big deal if it works. So many are suffering.
Great to hear you are going for your first dose. That's great. I will say it literally took almost the ENTIRE 2 months to see ANY speck of improvement but then 6 days before the 2 month mark, everything took an about face. I've been getting better ever since.
To say that it helped my PHN would be an understatement on my part. They had me in high dose Dilaudid, Morphine and Amitriptyline for the pain. I haven't taken pain meds in 4 days and i actually still had shingles 4 days ago. I had the rash but no pain. I was looking at it in my mirror and saying to myself..,"I should be screaming in pain right now". I even touched my face yesterday, which i would have NEVER done before but NO pain. Everyday, the rash is fading.
I go back Saturday for my 2nd dose. The first dose knocked me down pretty bad but had shingles at the time I took it. Didn't have a choice at that point. This 2nd dose may knock me down again, like the firstn but I will be there when they turn that key. It will all be worth it if keeps works.
Please keep me posting on your progress. Hoping good things for us ALL.
~Rhonda
To all I had the vaccine three weeks ago from my supermarket Pharmacy (no cost). I did have a reaction for a day only. I never want the Shingles nightmare to return. I hope I am in the 97% group. PHN was brutal last year
We hope that you are in that 97%. We are hoping WITH you, friend : )
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
Hello Rhonda
It’s been a few days I had the burning pain and just today my daughter saw a tiny blister drying out! Since February after like two months a tiny blister also came out! Could these be like two weeks from one tiny blister to another be mild bouts?
It’s the pain on my scalp which hurts! The burning and itching comes too! The rest of my scalp is clear! In February it was a line on top of my scalp from one side to the other and that lasted like a week! After two months one tiny blister and like I said today one other tiny blisters! Can these be mild bouts Rhonda?
I will be seeing my dicotomía on June 18 as well! Will ask for anti viral Zovirax too
Glad you are better and let me know if you have had blisters too ok! Tell me about your vaccine on June 2 ok
Blessings
Myrna
Update:
I went to the ER but another hospital where I left this morning about 6am.....yes that early as I didn’t sleep last night with pain!
A wonderful doctor there heard all I had to say and checked me out!
He saw the little bout of shingles and knew right away my problem!
He gave me my anti viral meds and others for the pain and itch!
He also administered great med through IV!
He explained it all and in my mind many great advice I was given here in this forum rang a bell! I am grateful to this doctor because right now I have no pain! I am waiting for my prescription!
I want to thank you and everyone here! Asked about the shingles vaccine and he said after I am cleared for a month to talk to my head doctor for that info on shingrix vaccine because she is the one to give me the right of way! I remembered you taking your shingrix vaccine with a bout right? Was the reaction bad? Or do we have to wait to be almost cleared? Pls let me know because my appt is June 18!
I want to hear that your second and last shingrix vaccine was a win win and you are doing great!
Hi! I am 39 years old and I really want to get Shingrix. I had shingles in my eye and do not want it back. I was wondering if anyone here received this vaccine that is under 50. Apparently it has only been studied in patients over 50 so I would feel better to hear from others!
Thank you!!
Hello Rhonda
Hoping you did get the 2nd shingrix vaccine! I am excited to know what happen after the vaccine! I know you said that the first vaccine you had shingles and still get the vaccine!
Now with the second shot did you also had shingles when you went to get the vaccine? Are the blisters gone or do you still get them without pain? Are you still taking anti virals even thought you had the two vaccines or did you stop after the vaccines taking the anti virals? Please let me know because this way everyone can have an idea what to expect before and after the vaccines! I will wait for your reply and wait for more good news!! Waiting for a miracle, I have burning pain still but mild one or two blisters and still taking anti virals!
Take care
Myrna
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
I’ve now had both rounds of the Shingrix vaccine. The only side effect I had was a very sore arm and itching beneath the injection site for a few days afterwards.
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
I got ophthalmic shingles, supposedly the worst type, in July 2013, resulting in PHN. Initially, it was painful and itching after the blisters subsided. I too went through gabapentine, pain medications. After one year, I felt better and it felt my PHN was subsiding., but then I took the older vaccine and it did not help. It seems the PHN continued, but not as severe as before. I continued using this time valacyclovir. Thank GOD my PHN today is almost nothing with little or no pain, but with mild itching late at night or early morning, I use a cold wet towel to gently rub the itching. I also take a 25mg amitriptline pill at night. I never got blisters again after July 2013. I took my first dose of the new vaccine Shingrix on June 5, 2018, primarily to prevent any blisters (and severe PHN) returning , with my second dose scheduled in three months. Perhaps the new vaccine Sningrix will also help in helping my mild case of PHN subside even more since I read a news article the new vaccine may help repair nerve damage, which is the root cause of PHN. Best wishes to all with shingles PHN.🙂
Hi Hector. Yes, if you have ophthalmic shingles, you DO unfortunately have what's considered the worst...and for justified reasons. Not that any shingles is the good kind and most ALL cases are painful but having shingles in your eye brings a different kind of pain and the longer you have it, the worse it will typically get as the years pass. Your eyesight is jeopardized and way too close to the brain. I reached the point to where all the doctors could do was admit me and sedate me for 3-5 days straight, to stop the screaming. Eventually, after countless hospital stays, i was able to be sedated in our home. You know the pain that i speak of and i am so truly sorry, more than mere words can say. When i was conscious, on most normal days, it was 4 or 8 mg Dilaudid, 35 mg Amitriptyline, 0.5 mg Clonazapam twice daily, 3000 mg Acyclovir and also added 1500 mg Famcyclovir only few months ago. All of this, i took most every day. But that is NOT the life i am leading now though. After 8 very long years and well over 140 outbreaks (we stopped counting), i have my life back.
Good to hear you did get the Shingrix vaccine. Don't lose faith friend, if you dont see immediate results. I was literally 5 days from a full 2 months, before i saw ANY improvement at all. Then it turned and it turned fast! This new Shingrix vaccine DOES work and i am living proof. It is not even in the same league as the old vaccine. Not even close. Also, keep in mind that you do NOT have to wait a full three months between vaccine doses. You can go for your second dose after only two months and i would encourage you to do so. Get it in your system ASAP. I'm not a doctor or nurse and can only offer my own experience but i would suggest talking to your doctor about your Acyclovir dosage and possibly adding Famcyclovir as well. I took the advice of "Merry", someone here on this forum that is a nurse, to try the Famcyclovir. I saw a difference in just a week, after adding it to my daily Acyclovir and this was before the vaccine began working.
I am still taking every day, the same antiviral 3000 mg Acyclovir, 1500 mg Famcyclovir and 0.5 mg Clonazapam for minoclonic seizures caused by the recurrent shingles but i am taking nothing else. I am not getting the shingles now and i am having NO pain now from the PHN. I am pain free, even after being told years ago that my 5th cranial nerve was permanently damaged by the shingles. There was discussion with my doctor to possibly admit me into the hospital for few days, as a precaution, to handle any withdrawal symptoms my body might experience, coming off the pain medications but at the end of it all, i had no problems because i was stepping down on the meds after taking the vaccine after each time. If you've read my previous posts, then you know that i had to take both doses of this vaccine with active shingles outbreak both times. Please know that i am NOT encouraging anyone to do what i did because it's rough. I had no choice myself but under my previous circumstances, i dont regret it. But it is strongly advised that you be shingle free when you take the vaccine and this is VERY wise advise. The docs will be slowly lowering my antiviral dose over time and the recommended time to continue your daily antivirals, after taking the vaccine, is a minimum 3 months. Not sure if i will be able to come off the Clonazapam but docs are seeing even that as a possibility for me. The last thing i took for pain was 3 Ibuprofen two days ago, after being too zealous jumping off into the deep end of our pool. I've gone from no life to a full one.
Truthfully, i did not think this vaccine or any vaccine would work for me. I gave up that hope 4 years ago. But when i read about the 97% success rate, i didn't hesitate. I am praying every night of my life for EVERY ONE on this forum to have the same success as i have had. My sincere prayer will be for you too that this vaccine works as well for you as it has for me. I am truly blessed but i have not forgotten where i came from and not that long ago. It's 97% success rate. Keep that in mind...that's HUGE! : ) Please let us know how you are doing. Take care, friend.
As I indicated in my previous message, todate, thanks to GOD Almighty, I have a mild case of PHN: Little or no pain and mild itching, late at night or early in the morning since I got the ophthalmic shingles in July 2013. I do use Muro 128 and Refresh Plus plus on my left eye since the shingles did scarred my cornea, but I can see very well with both eyes. I also take a 25mg pill of amitriptline at night. I will look into the possibility of getting my second dose of Shingrix sooner than the three month timeframe. I concur with you that this new vaccine can be a good shingles drug. My concern was getting shingles again. This has not happened since I first got the blisters. But the possibility was always there. With the Shingrix vaccine, I now feel confident the shingle blisters followed by severe PHN will probably not return in my case. Perhaps in time my mild PHN will also fade away. As you may know, some people have shingles for weeks, for months, for years or for life. No doubt people are affected by shingles in a variety of ways. I feel fortunate my ophthalmic shingles case is a mild one todate.
Hi friend. Happy to hear that. I hope your good fortune continues and your mild case goes from mild to non-existent. You are correct that others, not so fortunate, have shingles for weeks, months and years. It is such a debilitating illness, for so little information to be out there in the general public. Many still see this as an illness primarily affecting the elderly and the CDC continuing to post in their reports online that it is uncommon for shingles to strike an individual twice and their recommendation for the vaccine being ages 50 and older is not exactly encouraging the masses to take prompt prevention. I even read in one report that there was a problem with hesitation among many in the elderly age group, to return for that second dose of the vaccine. Sadly, there's not enough information out there and what is out there available to the public is outdated and it's leading to a real lack of urgency.
I am sincerely glad to hear that your case has not worsened. Yes, you are indeed fortunate for the kind of shingles you have. Most are not so lucky.
I recall i went about a year when the itching was near intolerable, located on my lower hip and leg and mainly at night. The nights were long. But as you know when it changes to your eye, all else changes with it and i went from itching to just pain. However, during the times that i would have an active rash, the amitriptyline did not help me with the itching but i did find that topical lidocaine was the best thing for me, when applied after wet compresses. Only not cold compresses for me but hot instead. It was of course brutal for about the first 10 seconds but afterward the lidocaine gave instant relief. When the shingles moved to my eye, it was hot compresses then too, over my face and eye area, not cold, that gave me the most relief. Most i've conversed with say that cold is their best relief. For the PHN in my lower legs, the vibration of a massager laying at the foot of my bed gave a great deal of relief on many nights. We are all different though, i suppose.
Again, i hope you continue to have good fortune and shingles will be for us ALL, a thing of the past, with this new vaccine. Take care
Hi Rhonda and others in this forum.
I am a family doctor who started experiencing right sided tongue fasciculations about 1.5 yrs ago. I was worked up for malignancy and lots of other things to include scanning from head to toe along with blood work and trips to sub specialists in renowned academic settings. About 1 year after these toungue issues started occurring, I awoke one morning to a few blisters on my right cheek. I then knew what it was. Shingles can occur without a rash “sine herpete” . The rash appeared on my 50th birthday of all things. Since, then , it has been six months of relentless facial paresthesias, toungue and facial twitching and pain. I too have had to stay on antiviral for at least 6 mos now. I decided to get Shingrix despite it likely being in an active phase, although it has been somewhat suppressed by Famvir. I do not recommend that anyone do this, but I felt like I had to try. I am 3 days status post getting vaccinated with the first dose and it caused some severe myalgia at first, but It is much better now. I will keep you all informed on how it goes. No changes for the better yet, but I am just 3 days in. I will pray for you all here. This is an awful disease.
Sorry for my delay, friend. I’ve been more down than up, for a while now. How are you, friend? You doing okay??
Hi Kc. Sorry for my delay as i’ve been down for a long while. Yes, i know people under 50 that took the Shingrix vaccine. The chain pharmacies, like CVS or Walgreens and your local Health Department tend to stick to CDC recommended age of minimum 50 years of age. However, privately owned pharmacies will give it to you, no matter your age, as long as you have a doctor’s prescription for the vaccine. Also, when Shingrix was first approved, cancer patients, both young and old, were given the Shingrix vaccine because they were high risk to get shingles due to their weakened immune system. Hope you are doing well
~R. F.
That’s great, friend. Sorry for my delay. I’ve been down for a while. Hope the vaccine is performing well for you. Did it work??