shingles

[rinaina]

Well, I never expected this one. With all the worries us bc sisters have, I never dreamed of being layed up with shingles. It started on Monday night this past week. I felt a sharp stabbing pain on the right side going around to my back at waist level. I thought it might be a pain due to something new I added to my exercise routine but no such luck. The pain was bad enough to disturb my sleep. The next day I developed itching in addition to the pain. I had my husband take a look at the site, ( it is difficult for me to see it clearly even with using 2 mirrors). My husband said he thought it looked like a few insect bites. Since Monday, the pain and itching increased and I haven't had much sleep at night, as it feels worse at night. I can't stand to have anything touching it, even clothing. It is so sensitive. My week was so full and busy that I didn't have time to talk or see a doctor until Friday morning. The oncologist said on the phone that he was sure it was shingles and he was willing to prescribe over the phone an anti-viral med to be taken for 10 days and 20mg of prednisone for 5 days and then I was to come in and see him next Thursday. I didn't want to start the meds until I was seen so he agreed to see me right away. The shingles diagnosis was confirmed and I started the meds right away. I understand that anyone who has chicken pox is susceptible to shingles. I also have learned that anyone who has had cancer treatment, an autoimmune disease of any kind, (I have Sjogren's Syndrome), anyone with a comprimised immune system, (we all have that having gone through chemo), are more susceptible to shingles. I am experiencing so much pain and itching. I have every thing you could possibly take to relieve the symptoms but at this point I am not getting much relief. We added a pain pill to the regiment in hopes that I would get more relief and sleep so we shall see how tonight goes because I just started that prescription today. I feel just awful and the lack of sleep is really doing me in too. The doctor told me I can add a few tylenol p.m. to the regiment an hour before I go to sleep, (what is sleep, I can't remember now), and see if that helps any. If I don't sleep any better tonight then I will call back and see if I can get a sleeping pill that would help more then the tylenol p.m.
So sorry to complain but I am just miserable and looking for any suggestions, education on shingles, anything any of you may want to share with me. I have of course researched it quite a bit this week on the internet, but I know how smart all of my sisters are on here so I am sure you can contribute something on this subject. Thanking you in advance for your input and help.

[Mary Anne in TX]

Hi Rinaina!
I am so very sorry that you have joined the "shingles gang"! It is a PAIN! I still take vicadin (sp) for the pain. There are several things that you can take, so keep trying until you find the one that works for you. I also got lidoderm patches that I put on at night (you can use 3 at a time) and that gave me some relief at night. The biggest thing is to take the pain pills as directed so that it builds up in your system. The anti viral med will take care of the rash and the itching in a few days. The pain will need several weeks to begin to decrease. Take those pain pills! Once you get it built up in your system, you will get some relief!!
I wish no one had to go thru shingles. It is the pits! But it will get better. Have your onc check it when you finish the anti-viral meds to be sure that they are taken care of.
God bless you. Shingles turned out to be far worse than chemo for me. But when I gave in and took the pain pills every 4 hours I was able to function.
Best wishes. Mary Anne

[CLTann]

I can advise you through experience on shingle. You need big guns to combat the pain. Ask your doctor for stronger pain killers than tylenol. It is critically important that you take the antiviral pills immediately, otherwise you may get the post herpetic neuralgia. Timing is the essence. My husband still has the residual pain after 15 years of his shingle event, simply because the emergency doctor misdiagnosed the shingle pain as a twist of back, giving him the worst possible prescription of heating pad to relieve the pain! The shingle virus had a field day wrecking his nerve system without mercy. For immune compromised people, shingle virus strike them easily.

[Mary Jo]

Oh Rinaina ~ It sounds simply awful. I've never experienced shingles so I can't relate. All I can think of to say is "I'm glad it isn't cancer." http://www.her2support.org/vbulletin/images/icons/icon7.gif

I sincerely hope relief is coming soon for you.

Sending a gentle hug,

Mary Jo

[michele u]

i had shingles while i was going through chemo. It seemed like alot of us in the cancer care center had them. I had a mild case so i was very lucky

[rinaina]

Thanks Mary Anne for your advice and I am so sorry you had to go through this in the past. I will definitely heed your advice on keeping up with taking the pain pills as I want to minimize this great discomfort I am feeling. I pray that I started the meds soon enough to avoid long term nerve problems like your husband CLTann. Marejo, I thank God it isn't cancer but I sure was looking forward to the end of treatment with herceptin on Aug 9 and getting on with my life so getting this now has me a bit frustrated and I will admit a bit angry too. Michele U, I actually know of two other people who developed shingles about 2 weeks ago but no one I was in contact with. From what I know you can't catch shingles but you could give someone chicken pox if they come in contact with you and have never had it. If you can't transmit shingles, I wonder why now I got it. Guess you can get it at anytime and with my health history, I guess I am not totally shocked I got it. This too shall pass but what a PAIN literally!!!!!!!!!!! Thanks everyone for your input and wishes.

[Sheila]

Rinaiana
Try taking Advil pm to help you sleep...it has Benedryl in it so it should sooth the itchies too....right now it seems to help me as I am having a hard time sleeping. Hope you are feeling better...DO take the pain pills...

[rinaina]

Thanks Sheila for your recommendation of advil p.m. I will try that as tylenol p.m. hasn't worked for me. Taking the pain pill last night did help a bit but the pain and itching still woke me up. How are you feeling Sheila? Can't thank all you girls enough for being there for me. I know I haven't been very active on here lately, but, that is a good sign that I was feeling well and keeping busy this summer. But you all are always on my mind and I do peek in constantly even if I am not writing. Stay well everyone and avoid getting the shingles if you can.

[Sherryg683]

I am a shingles expert..sadly. I broke out in shingles in January, it was in 3 nerve pathways and radiates around my head. I have had 2 smaller outbreaks since then but take the pills to make the rash go away. In most people the pain fades in a few weeks, a few unlucky can last for a year. I am one of those few unlucky..7 months now and pain still going strong. I have tried what they usually put you on for long term shingles (neurtontin and other nerve suppresants) but nothing has worked. I pretty much have to take a Loritab to knock out the pain, the scalp pains don't go away, just lessen a little. I go see a pain management specialist soon to see about getting an epidural spinal block. The shingles are the pits. Here's hoping yours go away soon. ..sherryg

[Catherine]

So sorry to hear about all the cases of shingles. I know the pain is horrendous from other friends. I hope and pray you all get over the pain and discomfort as soon as humanly possible.

May I selfishly ask if there are any tips on how to avoid shingles? I remember my mom and her best friend each came down with shingles about 5 days apart from one another. My mom was about 85, it attacked her on one side and left her one eye very droopy and uncomfortable until she passed away at 93. She also had the privilege of alzheimers.

Heaven help us. Hey, by the way, I just rented An American in Paris with Gene Kelly, have seen 30 minutes and it is darling. Gene Kelly's dancing is marvelous as you probably already know.

Sleep tight, don't let the bed bugs bite, Catherine

[caya]

I had shingles last November, got it 5 days after my BC dx. I was 10 days into my recuperation from my breast reduction when the plastic surgeon told me he had seen "something suspicious" while performing the reduction. Unfortunalety the pathology came back as BC, talk about a shock. THis diagnosis combined with the extremely stressful year we'd had with DH (brain aneurysm Jan. 2006) most definitely caused the shingles.
I was lucky and started the antiviral meds within 48 hours of the first lesion appearing, and most sources says within the first 72 hours is okay. I also took pain meds regularly like the other gals have stated, to keep a consistant level in your body. I was lucky and had a mild case, for me it was the trigemenal (sp?) nerve, which is the lower side of the face, down the chin to the upper chest area. They were afraid the shingles would either enter my eye or my newly reduced left breast, neither happened.

I hope you have an easy time of it. The only residual effect I have is very occasionally I will experience some minor numbness around the left side of my mouth, which is where I had it. During the FEC rounds of my chemo in Jan. and Feb. this numbness would occur often, but my onc. assured me it was my weak immune system reacting, and it would disappear over time, which it mostly has.

All the best,
caya

[michele u]

rinaina
you need to ask for Lyrica. It is used alot for shingle pain. It is pretty new. Also they use neurontin sometimes for shingle pain

[harrie]

I believe there is a vaccine for shingles now.

[Gina]

Hi, Rinaina,

I am SO sorry you are suffering from shingles...it is horrible according to every thing I have read. I was wondering, if you had a chance to try some OLIVE LEAF for relief...as it is anti-viral, among other things, it might speed the long healing process. I also read that LEMON Balm tea ( a sort of refreshing lemoning mint tea) is very good for viruses -- you can drink it or put it on the shingles with cotton soaked in the tea.

Last but not least, thanks to responding to the Simian line thread. None of us really knows what it means but I thought since I had one and have her-2 and have noticed some connections between left-handedness and her-2 bc that it was worth exploring with these great folks on the sight and I was not disappointed. If I learn anything else for shingles or about the straight line, I will let you know.

Please feel better soon,
Gina

[Matt]

Hi Rinaina:

I've just recently been told that I have shingles. I've been run-down lately and under alot of stress from work, so even though I haven't been suffering from a previous illness (that I know of), I still managed to get shingles.

I was wondering how you made out? I've managed to get shingles on my upper left forehead. I wasn't at all sure what it was at first, but I knew for sure it wasn't a boo boo (pimple), then the two bumps continued to get bigger and eventually I started to get a series of little bumps which looked like a rash.

I had a swollen gland on the left side of my face, which was actually what I originally saw the doctor for (as the rash wasn't too bad at first and thinking that I had an outbreak of pimples I had the rash covered up with tinted clearsil).

I went to see the doctor who originally thought it was just a swollen gland that might be blocked and that he'd prescribe an antibiotic. However when I asked if the bumps on my noggin' might be connected to the problem (because they both happened around the same time) he said "whoa ... I know exactly what you have ... it's shingles".

Of course it didn't make me feel better that as he said that he backed off like I had the plague or something. Anyhoo, he prescribed an anti-viral medication called Valtex which is just the brand name for valacyclovir medication. You take 1 tablet three times a day for a week. This is only my 2nd day and I haven't had any side effects from the medication.

My big concern about having it on my face is it's the same nerve pathway for your eyes / ears and could lead to deafness or blindness if the shingles spread.

I realize that I'm a lad probably on the wrong site to be asking for suggestions, but it's the only site I've found online where folks are talking about shingles. I was just wondering how you made out and if you have any suggestions for the pain?

Thanks,
Matt

[rinaina]

Hi Matt,

I am doing fine now and I have no residual effects left from my bout with the shingles. I was very lucky, as I caught my shingles very early on, within 3 days and the valtrex worked beautifully for me along with Lyrica for the discomfort and to help me sleep. My shingles were confined to the right side of my back, waist level, and never spread once I started the valtrex. I hope yours clears up without causing any of the horrible problems it can cause in the area of your eyes and ears. I'll be praying for you. Keep me up to date.

Ina

[Linda]

Hi all. I was one of the lucky ones to have shingles 3 times way before bc (not during tx or after.) It's the chicken pox virus that lays dorment and then becomes active when your immune system is down. Usually people only get it one time! (some lucky ones like me have repeat episodes.) I don't think there is a way to avoid it, but you can up your odds by not stressing your body -- getting enough sleep, etc, especially when you're around people who are sick with other viruses (colds, etc.).
I'm also curious about the new vaccine. If we are eligible to get it, it might not be a bad idea.
Linda

[rinaina]

According to my doctor, the vaccine is for only 60 yr old of older. I am 56 now and have never wanted to think about 60 until now. I don't ever want to go through having shingles again....or bc for that matter. I will press my doctor for the vaccine because I am sure the only reason they say 60 or older is because that is the test group they did the study on. What's four years?

[Linda]

Thanks for letting me know. I'm 54, so pretty close, too. Let's all follow this and share info. Shingles is a big problem for lots of older people, and after our txs, we may be more than usually susceptible.
L