Announcement

Collapse
No announcement yet.

Shingles?!?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Shingles?!?

    Hello everyone.

    I haven't posted here in awhile, even though I think of everyone on this forum and am thankful for all of you daily. I have been lucky to completely eliminate my IC symptoms with supplements, which I never would have found out about were it not for those one this site sharing with me.

    At any rate, I have a problem at the moment, Shingles. I began breaking out last Friday, it kind of came all at once, tingling itching, burning sensation where the welts would show up...by Sunday I was covered with them. I went to the Dr yesterday and he just gave me Prednisone...rash is clearing...pain is getting worse. ((

    The Dr made a strange comment too...he said; "Oh...I see in your history you already have one auto-immune disease...Interstitial Cystitis..." Are IC and or Shingles really considered auto-immune diseases?!?

    What is everyone's opinion of this please, and also, the prednisone only treatment? Joints hurting so bad right now I can barely type

    Thank you and bless you all.
    ~Jenny, 26 F
    Diagnosed with;

    Mild IC, November 09
    many many many UTI`s (always e coli so far)
    endometriosis
    ovarian cysts

    Currently taking;

    D-Mannose powder, 1 tsp 2 times daily
    D-Mannose capsules, 4 500mg caps once before bed
    Fish oil
    Vitamin E
    Caprylic acid, 1 600mg cap 2 times daily (yeast control)
    Glucosamine Sulfate (heals your bladder!!!)

    I am currently in total remission!!! :woohoo:


    Past meds;

    Elavil
    Percocet
    Dilaudid
    Elmiron
    Pyridium (never helped at all...)
    Detrol (doesn`t do anything anymore)
    Bactrim (10+ times)
    Keflex (THE most useless antibiotic of all)
    Macrobid (10+ times)
    Levaquin (once)
    Cipro (15+ times)
    Rocephin (IV, shots) (8 times that I can remember.)
    Darpaz

    Procedures;

    Ovarian cyst removal 04`(seemed to start everything)
    Cystoscopy Nov 09` dx`d with IC


    "Well I looked my demons in the eyes,
    laid bare my chest, said "Do your best, destroy me.
    You see, I've been to hell and back so many times,
    I must admit you kind of bore me."
    There's a lot of things that can kill a man,
    there's a lot of ways to die,
    yes and, some already did that walked beside me.
    There's a lot of things I don't understand,
    why so many people lie.
    Its the hurt I hide that fuels the fire inside me.
    Will I always feel this way?
    So empty, so estranged..."
    ~Ray Lamontagne

  • #2
    We were told shingles happens in people who have had chicken pox --- the virus can "hide" in the body and show its ugly self with one-sided rash. My husband had a bout with it some years ago --- really strange --- the rash was on his forehead and scalp and you could draw a line from the center of his nose up through his forehead and the rash was on only one side.

    Prednisone and pain meds are what's usually used to help.

    There's a vaccination available now --- expensive but I think well worth it.

    I hope you feel better soon.


    Donna
    Last edited by ICNDonna; 09-28-2011, 04:33 AM.
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Hi, Jenny ~ Oh, what a handful of trouble with shingles! My Mom had them and it was terrible. I know they have better meds to help through it, but still a strange and painful experience.

      I've heard the same as Donna. Don't know much more, just wanted to let you know we care.

      Hope it's not long before this is in your past (like your IC symptoms!!!!!)

      Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

      11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
      8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
      8/2010 Surg gallbladder
      TREATMENTS (updated 4/15)
      IC Diet since 8/2009 (Able to vary 4/15)
      Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
      Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
      Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
      *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
      Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
      PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

      Comment


      • #4
        There has been a shortage of this vaccine where we live, I got my name put on a wait list last April and got called yesterday they had finally got some in.

        It is being held for me I just have to figure out which will be a good day for me to go get it, it is in nother town.

        The pharmacy where I live won't bring it in as it has to be kept cold, and they can't assure it can make it here without getting too warm.

        I am so glad to finally be able to get this vaccine.

        MG
        My are with you all. May you all find a way to peace and joy in your lives.

        Comment


        • #5
          Thanks everyone for the feedback. My shingles are on both sides of my body, that is rare, but does happen...here is the great part though, after 3 days of prednisone...which I guess was supposed to control the rash, which it has, on the outside of my body, but now, the rash has spread to the back of my throat. Didn't know you could get shingles INSIDE your body like that, again though, Docs say it is "rare but happens".

          I cannot for the life of me understand this. I am pretty freaked out here. And I keep thinking the same thing over and over...endometriosis, ovarian cysts, IC, and now shingles...is there a connection here? Maybe it is too late at night for me to ponder this sort of thing. Maybe I should stop thinking this way...
          ~Jenny, 26 F
          Diagnosed with;

          Mild IC, November 09
          many many many UTI`s (always e coli so far)
          endometriosis
          ovarian cysts

          Currently taking;

          D-Mannose powder, 1 tsp 2 times daily
          D-Mannose capsules, 4 500mg caps once before bed
          Fish oil
          Vitamin E
          Caprylic acid, 1 600mg cap 2 times daily (yeast control)
          Glucosamine Sulfate (heals your bladder!!!)

          I am currently in total remission!!! :woohoo:


          Past meds;

          Elavil
          Percocet
          Dilaudid
          Elmiron
          Pyridium (never helped at all...)
          Detrol (doesn`t do anything anymore)
          Bactrim (10+ times)
          Keflex (THE most useless antibiotic of all)
          Macrobid (10+ times)
          Levaquin (once)
          Cipro (15+ times)
          Rocephin (IV, shots) (8 times that I can remember.)
          Darpaz

          Procedures;

          Ovarian cyst removal 04`(seemed to start everything)
          Cystoscopy Nov 09` dx`d with IC


          "Well I looked my demons in the eyes,
          laid bare my chest, said "Do your best, destroy me.
          You see, I've been to hell and back so many times,
          I must admit you kind of bore me."
          There's a lot of things that can kill a man,
          there's a lot of ways to die,
          yes and, some already did that walked beside me.
          There's a lot of things I don't understand,
          why so many people lie.
          Its the hurt I hide that fuels the fire inside me.
          Will I always feel this way?
          So empty, so estranged..."
          ~Ray Lamontagne

          Comment


          • #6
            There is quite a bit of info on the net about shingles. There is quite a bit more to it than meets the eye.

            In fact you can get it in your eyes, and it is very apinful, a friend of mine got it in her eyes 10 years ago now and still has problems from it.

            I think but I am not 100% postive that once you are 100% over shingles they still recommend you get the vaccine for it.

            You can get it repeatedly, my cusion gets it when she is under a lot of stress.

            There also is a medication they can rx you if they figure out you have it right away, that will really shorten the out break of it. But it is realy soon. My cousin now knows the signs and gets this med at first sign of getting shingles, she says it really does help.
            It is ome sort of antiviral, not a steriod or AB.

            I hope you get over this soon, I have not had it but from speaking to others who have had it I feel for you.

            Warm Hug MG
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment


            • #7
              Yes, you can get shingles more than once. Husband Terry and I both went for the vaccine when it became available.

              Donna
              Stay safe


              Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
              Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

              Have you checked the ICN Shop?
              Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

              Patient Help: http://www.ic-network.com/patientlinks.html

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
              [3MG]

              Anyone who says something is foolproof hasn't met a determined fool

              Comment


              • #8
                Shingles is so painfull... horrible.. best if you can start taking meds as soon as possible.. I was a bit late - the rash disappeared but the pain lasted weeks..
                Even my C section surgery did not compare to that pain..
                Hope you feel better soon.
                God brought me to it, He will bring me through it!!!

                Diagnosed 2003
                by cysto/hydro
                Elmiron took almost a year- made me sick, caused diarrhea
                Pyridium -Made me sick
                Detrol and Ditropan, Toviaz and Mrrbetriq- caused constipation and head ache.
                Tried DMSO instill- had 5 out of 6
                Started Oxytrol Patch-stopped using them after 3 months-- skin was getting irritated
                Cysto/hydro April 6th 2011-- on expansion only hold one cup
                IBS/ IC
                High blood pressure meds and Crestor
                Metformin (prediabetic)
                Sinequan (depression)

                Comment


                • #9
                  I had shingles back in 2002 and didnot seek treatment right away because I thought I was way to young to have shingles. I got in my right eye and really did cause problems. I now have a scar on my cornea from it. They told me that the virus reactives when your immune system get low and that what cause shingles. Yes you are more likely to have it again once you have had it. I got the vaccine about 2 years ago and was told that it is about 60 percent effictive. If you do get it after having the vaccine it will shorten the durnation and keep you from getting neugralia when I have quite a bit of still. I never heard about them getting on a person's throat or having them on both sides at once. But I guess it could be possible.

                  Comment


                  • #10
                    Thanks all

                    Thanks to everyone for all the replies and feedback on this...still trying to figure all this out, and getting worse at the moment.

                    I am concerned now, because while I was at work yesterday, I lost sight in my right eye for about 30 mins. It began with sort of twinkling lights in my peripheral vision...then gradually moved over my whole eye, until I could not see anything out of my right eye at all, which lasted about 30 minutes or so. My sight then gradually came back the same way it had went...through little twinkling lights.

                    I am venting now, but while this was happening I was super busy, I work in a jewelry store and our town was having "Oktoberfest" yesterday...it was just me and my boss working, and there were dozens of people in and out of the store. I went from waiting on one person to the next, all the while this was happening with my eye. By the time it was to the point I could no longer see anything out of my right eye, I was waiting on this..."person" who had bought a cheap silver plated engravable necklace from one of the street vendors outside. (not even from our store mind you) He wanted me to engrave the item for him...right then, while he waited. This guy could plainly see that myself and my boss were the only people working. He had probably ten people waiting in line behind him. He did not buy this item from our store...I just told him, "sir, while I would love to be able to engrave this item for you right now, unfortunately, at this time, with the festival, it is not possible." And he still looked at me, and said "Why?!?"

                    Now, I understand that there is no possible way this, "person" could have known that at that moment, I could only see out of one eye, and that was also a contributing factor in my frustration...but, c'mon, seriously? Has the world come to this?

                    Ok end of venting. Not sure if the vision loss was due to shingles or stress, I am hoping just stress though. As for those of you who are recommending I get the vaccine, I wanted to say this interests me very much, but I thought you had to be over 60 to get it...? Maybe not, let me know. Much love all!!!
                    ~Jenny, 26 F
                    Diagnosed with;

                    Mild IC, November 09
                    many many many UTI`s (always e coli so far)
                    endometriosis
                    ovarian cysts

                    Currently taking;

                    D-Mannose powder, 1 tsp 2 times daily
                    D-Mannose capsules, 4 500mg caps once before bed
                    Fish oil
                    Vitamin E
                    Caprylic acid, 1 600mg cap 2 times daily (yeast control)
                    Glucosamine Sulfate (heals your bladder!!!)

                    I am currently in total remission!!! :woohoo:


                    Past meds;

                    Elavil
                    Percocet
                    Dilaudid
                    Elmiron
                    Pyridium (never helped at all...)
                    Detrol (doesn`t do anything anymore)
                    Bactrim (10+ times)
                    Keflex (THE most useless antibiotic of all)
                    Macrobid (10+ times)
                    Levaquin (once)
                    Cipro (15+ times)
                    Rocephin (IV, shots) (8 times that I can remember.)
                    Darpaz

                    Procedures;

                    Ovarian cyst removal 04`(seemed to start everything)
                    Cystoscopy Nov 09` dx`d with IC


                    "Well I looked my demons in the eyes,
                    laid bare my chest, said "Do your best, destroy me.
                    You see, I've been to hell and back so many times,
                    I must admit you kind of bore me."
                    There's a lot of things that can kill a man,
                    there's a lot of ways to die,
                    yes and, some already did that walked beside me.
                    There's a lot of things I don't understand,
                    why so many people lie.
                    Its the hurt I hide that fuels the fire inside me.
                    Will I always feel this way?
                    So empty, so estranged..."
                    ~Ray Lamontagne

                    Comment


                    • #11
                      For the general public who have never had shingles, they don't advice you get it till you are 60 or older but once you have had shingles they will give it to you no matter how old you are. I was only 55 when I got mine. You need to check with your insurance and see what they will pay. Some pay good and some don't pay hardly any at all. Mine paid only 50.00 dollars on a around 200.00 dollar shot. My husband and I decided to paid they rest and to at least give me a chance at not getting them again and if I do they will be milder. You have to buy ths shot at a compounding drugstore and tade it to your doctor's nurse to be injected. I do know you can get it at CVS or Walgren's. I've tried both and they said they can't get it. It has to do with their ability to refrigeraed it. Hope this helps in your decision. The shingles will go away but it does take quite a bit of time. I think your eye problem is probably stress related but you do need to see your eye doctor about it.

                      Comment


                      • #12
                        You can't get the shot while you have any signs of having shingles. I think where i live they recommend you be over 60 as well but if you have other health issues they recommend you get it.

                        MG
                        My are with you all. May you all find a way to peace and joy in your lives.

                        Comment

                        Working...
                        X