Reoccurring Shingles...can't get off valtrex.

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Since October 2013 I have had 5 episodes of shingles. The 1st 2 times were treated with 3000mg valtrex and steroid for 7 days...within 5 days after finish meds it returned. I was back on steroid and valtrex 3000 mg for 10 days...off few days it returned. Now it's February. I am currently taking valtrex 1000 mg a day everyday...500 mg will not work. If I stop the shingles returns quickly!,,,

I have been reading and no one else seems to get it like this. I've been to several Drs and specialist no one can help or seems to know why it is frequent. I'm not sure if they know much about shingles at all...as the seem to give me meds and send me on my way. I've been to so many specialist I don't know who to go back to for further help!!

I have back and left leg pain...constantly however it gets worse with an outbreak. The shingles is located on my right side ear area. I had a huge knot above my ear swell along with pain in my ear...headache that shoot pain and my eye and cheek tingle and get numb. My ear will feel full like I have an ear block. First time no rash, the second I had one big pock on my right cheek I have also had them inside my mouth same side ...right. During this few months I have also had severe vertigo and my left eye I'd affected by something...dr said age related. Left eye is blurry floaters and big gray blobs ...my eyes were fine according to dr.

I just feel everything happening is related to this. I need to find out why...I feel I have not made it to correct physician or specialist. Happy to have found this discussion...please help if you know or heard of similar....thx

1 like, 15 replies

15 Replies

  • Posted

    I know how you feel. Reoccuring shinges is bad enough but not being able to get help is even worse. I have had this for 27 years and now that I have found this forum, I feel hopeful that somehow I guess we will alll figure it out together. I wish I had the answer but what ever I learn I will defintely post it here.
  • Posted

    Dear thx,

    Are you in the US or UK? I live in the US. I found 2 creams that help me after 15 years of recurring shingles. One steroid cream that I got from a doctor who didn't believe I had shingles, but the cream worked anyhow.It's Triamicinoline Acetonide 0.1%. It keeps me from breaking out if I put it on as soon as i feel thattingling sensation. The other cream I bought at a health food store. It's Super Lysine. It helps heal the spots. Shingles is a virus like herpes. Certain foods will trigger an outbreak. Check Google for what foods have alot of Arginine in them (things like nuts, chocolate, etc). Unfortunately they are the ones to stay away from.But if it keeps you from breaking out it's worth it! Foods high in Lysine (salmon, etc) help your system resist thevirus to prevent outbreaks. Perhaps you will see a food correlation?Also I found that if Iapplied ice at the first sign of tingling and leave it on a long time. Because this virus needs a warm place to germinate chilling that spot helps chase it away! This will prevent the outbreak. This works well for cold sores on a lip as well as shingles. Let me know if it helps!

    sue

  • Posted

    For the past two years i've had reaccurring shingles. they started on my left calf and went a away after treatment. a year later (last summer) they came back and they were on my leg, my right ear, and my back and i went and got treatment. they keep coming back and the aclivore aint working cause the last case of shingles i had, i couldnn't get my meds right then so i covered the area with clear nail polish like i would tick bites and redbug bites and it helped clear them up cause it smoothered them but then i was able to get the meds so just to have it in my system to make sure the shingles were gone i took the meds but the meds made them break out and spread even more so i quit the meds in dec and haven't used anything for the shingles but clear nail polish and alcohol with band-aids and it works good but i hate having to put nail polish on my skin like i do but the drs. meds aint working for me... Does any one have any other home remedies i could possibly use?????
  • Posted

    they have came up on my back today ina small blotch and i just put clear nail polish on it

  • Posted

    The Dr's keep telling me shingles is located only on one side...one area and don't reoccur like mine have. I also have had other areas on my body with pox mark. A couple of dr say they don't believe it's shingles...however it responds to the antiviral medication. I have had 2 more small outbreaks while taking the1000mg valtrex daily. They were small and short as soon as I take valtrex they go away. When I get headache on one side and my ear starts feeling weird I know it's about to start. I am in the US and have even contacted CDC to see if they knew anything ...but they don't.

    I tend to get over heated easily and it brings the shingles on....as well as extreme fatigue. Maybe it is hormonal for me. Who Knows!!

  • Posted

    I feel for anyone who continues to suffer from the shingles. Mine hit the left side of my face and left eye. I was put on Gabapentin and Vicodine for the pain. for 6 months straight I took the Gabapentin, but finally had to get off of it due to all the side effects. My pain comes and goes, but more so at night when I am tiered. It drives me nuts. My scalp area still itches and hurts. all I ever hear from both my medical Doctor and my eye Doctor is that it could last a long time. last week I had a long eye appointment and the Doctor said my eye vision had changed greatly from having the shingles and that the scaring would be there forever. I still show anyone who wants to see it, pictures of my face right when the blisters came out. it looked and felt like someone poured acid all over my face. not nice stuff these shingles, not nice at all.
  • Posted

    I found out in April I have breast cancer! I believe somehow these shingles is related to my cancer and immune system. After my 2nd surgery I got hives so severe that the shingles started again in another location near my surgical site. I also started getting some type of weird bumps under my arm. The oncologist thinks it's infected hair follicles and could be however they look like the same bumps I called pox with shingles months ago. Under my arm my glands would swell but no pain and no itch. I started taking bactrim and it went away....however I got hives again....I think when your body starts doing weird things like mine has this year...there is dime thing major happening me where in your body! Don't stop searching for answers....you know your body best!

    Chemo  Sucks.....

  • Posted

    I have been battling shingles since December of 2012.  I was told you only get it once but I know better than that now...  If it's not the pain, it's the rash.  If it's not the rash, it's the worst case of itchiness and tingling and numbness you can imagine.  I have also been to the doctor several times and finally they prescribed Neurontin.  It's been proven to be successful in managing the recurring symptoms of shingles.  It took some time to get the dosage right but once I did, it has been tremendously helpful.  There are still times where my scalp is tingly and itchy, and recently while at the dermatologist (for something else), I asked him about it and who so many recurrences.  He advised that the recurrences should not be happening and suggested I see a neurologist since it is nerve related.  I hope you're doing better, but if not, if you haven't already seen a neurologist, maybe you should try one....  
  • Posted

    Hi Cyndi

    Were the blisters also inside the external ear and ear canal! Did you have a facial droop on the same side as the pain. Was the pain excruciating? If the answer to the first question is yes, you have Ramsay Hunt Syndrome-Herpes Zoster Oticus. I am a nurse practitioner, but also have been getting Ramsay Hunt Syndrome for the last 19 years every three to five weeks. As you are on a suppression dose of Valtrex, I know it is bad and I feel your pain.

    I would suggest to your doctor to be placed on Topamax or Lyrica to lessen the intensity of the acute pain with each outbreak and decrease thelikelihood of post herpetic neuropathy. If it is indeed Ramsay Hunt Syndrome-Herpes Zoster Oticus, see a ENT doctor right away. You probably need an MRI to check for pathology in your brain, just to be on the safe side (acoustic neuroma. ) As you keep getting this shingles, the obvious question is why?

    Are you on corticosteroids regularly? Do you or is there a family history of autoimmune diseases such as Systematic Lupus Erythematosus, Rheumatoid arthritis, Sjögrens, etc. Do you have HIV, cancer?

    All of these cause impaired immunity and can cause recurrent shingles. Are you receiving pain relief with your current doctor? If not, switch. Shingles is excruciating. I hope this helps. Feel free to contact me. I am a nurse practitioner.

  • Posted

    I take meds for Shingles and no sooner they are gone I stop meds and they come back new batch.
    • Posted

      Hi Annette,

      Where is the rash? How much Valtrex do you take? How severe is the pain when you get shingles?

      How old are you?

      Are you immunocompromised?

      I get Herpes Zoster-Shingles in my right ear every three to five weeks for the last 20 years and have had Herpes Zoster Ophthalmicus twice in the right eye. The antivirals did not suppress the Herpes Zoster, but I take the full dose of Famvir at the first hint of another episode.

      GlaxoSmithKline is filing for aporoval with the FDA the Shingles vaccine Shingrix in 2016, which has a 97.3% efficacy rate. Zostavax, the old Shingles vaccine had an efficacy rate of 57.1%, which decreased to the 30s%, if you were > 70 years old. Hopefully, the new vaccine will work on those of us who have had Herpes Zoster-Shingles. For you, I would never stop taking Valtrex. When Shingrix is approved in your country, I would take it.

      BTW: I have found Famvir works better for me. It certainly is easier to swallow as the capsule is smaller.

      All the best!

      Merry Juliana

    • Posted

      I get them on my back,legs,arms in my hair. I use over the counter stuff

      Meant for Shingles. I use tea tree oil and Listerine mixed to dry them up fasit. It makes my tummy hurt from the smell but it dried them out. I have Crohns too and Asthma.

    • Posted

      Do you have any side effects from Famvir? I get terrible leg cramps & my tendons get really tight & hurt to move from valacyclovir.

    • Posted

      I get it in my left upper ear ring hole and the places I said. I am only 44. I have to lie and say I am fine so I can work.
  • Posted

    I have recurring shingles. I take 500 mg daily.Go to a dermatologist. It's because my immune system is bad. I gather colds and flu easily. My resistance isn't very good. Allergies are bad. Due to asthma and C.O.P.D. you may need immune boosting vitamins.

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