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RA and Shingles

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  1. #1
    TedTheCat Guest

    Default RA and Shingles

    So, the standard warning for biologics is to report to the rheumy if a
    rash develops. Do it! The rash could be shingles, a disease which
    especially likes immuno-compromised folks like us, and a disease whose
    severity and length can be lessened if treatment is started
    promptly.

    I got it.

    Has anyone before me gotten shingles on top of RA? Any and all
    comments or stories are welcome.

  2. #2
    helen anonymous Guest

    Default Re: RA and Shingles

    I have discontinued Humira because of a weeping itching body rash
    diagnosed as medication induced cutaneous lupus. (like I needed another
    disease!)

    Since doctor is unable to pinpoint the offending drug, I have
    discontinued all medications except for absolutely essential ones like
    heart meds.


  3. #3
    x x Guest

    Default Re: RA and Shingles

    Afternoon Ted. I've had RA for many years but I have never had a Rash
    such as that, so I'm sorry that I cannot be of help to you in that
    Department. I hope some very good advice and help comes to you soon.
    Moe


  4. #4
    CollCon Guest

    Default Re: RA and Shingles

    "TedTheCat" <[email protected]> wrote in message
    news:[email protected]...
    > So, the standard warning for biologics is to report to the rheumy if a
    > rash develops. Do it! The rash could be shingles, a disease which
    > especially likes immuno-compromised folks like us, and a disease whose
    > severity and length can be lessened if treatment is started
    > promptly.
    >
    > I got it.
    >
    > Has anyone before me gotten shingles on top of RA? Any and all
    > comments or stories are welcome.

    ------------------------------------------

    Yes -- have had both. The shingles got on/in my eyes (!!!) and caused
    corneal scarring. I've also had shingles on my flank and on the legs.

    The best topical treatments, for the insane itching & pain, were vitamin
    E oil and straight rubbing alcohol.

    Take a vitamin E capsule, pin-prick a hole in the capsule, and then apply
    the oil on top of the affected area.
    If the itching isn't relieved by the vitamin E oil, then rubbing alcohol
    can help. (yes -- it burns like crazy. But if you can stand the
    momentary pain, then the itching will be reduced.)

    HTH

    -- CollCon


  5. #5
    TedTheCat Guest

    Default Re: RA and Shingles

    On Feb 20, 5:49*pm, "CollCon" <inva...@nospam.net> wrote:
    > "TedTheCat" <tedtheca...@aol.com> wrote in message
    >
    > news:[email protected]...> So, the standard warning for biologics is to report to the rheumy if a
    > > rash develops. * Do it! * The rash could be shingles, a disease which
    > > especially likes immuno-compromised folks like us, and a disease whose
    > > severity and length can be lessened if treatment is started
    > > promptly.

    >
    > > I got it.

    >
    > > Has anyone before me gotten shingles on top of RA? * Any and all
    > > comments or stories are welcome.

    >
    > ------------------------------------------
    >
    > Yes -- have had both. * *The shingles got *on/in my eyes (!!!) *and caused
    > corneal scarring. * *I've also had shingles on my flank and on the legs.
    >
    > The best topical treatments, *for the insane itching & pain, *were *vitamin
    > E *oil *and straight rubbing alcohol.
    >
    > Take a vitamin E *capsule, *pin-prick a hole in the capsule, *and then apply
    > the oil on top of the affected area.
    > If the itching isn't relieved by the vitamin E oil, *then rubbing alcohol
    > can help. * (yes -- it burns like crazy. *But if you can stand *the
    > momentary pain, *then the itching will be reduced.)


    Thank you, CollCon, I will try it tonight.

    Shingles in the eye. Yeoooowww!!!! I can not even imagine what
    that must be like.

    Thank you also helen anonymous and XX.

    And everyone, take good care of yourselves.

  6. #6
    CollCon Guest

    Default Re: RA and Shingles

    "TedTheCat" <[email protected]> wrote in message
    news:[email protected]..
    > On Feb 20, 5:49 pm, "CollCon" <inva...@nospam.net> wrote:
    >> "TedTheCat" <tedtheca...@aol.com> wrote in message
    >>
    >> news:[email protected]...>
    >> So, the standard warning for biologics is to report to the rheumy if a
    >> > rash develops. Do it! The rash could be shingles, a disease which
    >> > especially likes immuno-compromised folks like us, and a disease whose
    >> > severity and length can be lessened if treatment is started
    >> > promptly.

    >>
    >> > I got it.

    >>
    >> > Has anyone before me gotten shingles on top of RA? Any and all
    >> > comments or stories are welcome.

    >>
    >> ------------------------------------------
    >>
    >> Yes -- have had both. The shingles got on/in my eyes (!!!) and
    >> caused
    >> corneal scarring. I've also had shingles on my flank and on the legs.
    >>
    >> The best topical treatments, for the insane itching & pain, were
    >> vitamin
    >> E oil and straight rubbing alcohol.
    >>
    >> Take a vitamin E capsule, pin-prick a hole in the capsule, and then
    >> apply
    >> the oil on top of the affected area.
    >> If the itching isn't relieved by the vitamin E oil, then rubbing alcohol
    >> can help. (yes -- it burns like crazy. But if you can stand the
    >> momentary pain, then the itching will be reduced.)

    >
    > Thank you, CollCon, I will try it tonight.



    You're welcome -- I hope you find some relief.
    The vit E and the rubbing alcohol always helped me. But I have seen
    elsewhere a suggestion to use pure lemon juice to deal with the itching --
    I would guess that lemon juice might be a little less caustic than the
    alcohol.

    > Shingles in the eye. Yeoooowww!!!! I can not even imagine what
    > that must be like.



    It was pretty bad -- the shingles were both in/on the cornea and on my
    eye-lid. My eye was swollen shut and part of my forehead was puffy too.
    So it was pretty bad, but thank goodness, all bouts of shingles have been
    external. I've heard of *Internal* shingles -- That must be terribly
    dangerous in addition to being agonizing.

    > Thank you also helen anonymous and XX.
    >
    > And everyone, take good care of yourselves.


    You take care, too. And I hope you post back with an update.

    -- CollCon


  7. #7
    Donna G Guest

    Default Re: RA and Shingles




    Seems as though so many have gotten shingles this year! Wonder what is
    going on?

    I'm curious, as I know many have said they have gotten the shingles
    vaccine, but I though you couldn't get the vaccine if you were immuno
    compromised at all.

    Any of you know whether this is true or not?

    ..
    ..
    Donna G.
    ..
    ..
    1) Rejoice always, Pray continually, Give thanks in all circumstances,
    For this is God's will for you in Christ Jesus. ( I Thessalonians
    5:16-18 NIV )

    2) ANGELS EXIST, but some times, since they don't all have wings, we
    call them FRIENDS......

    3) Just because you're in pain, doesn't mean you have to be one!


  8. #8
    Alice Faber Guest

    Default Re: RA and Shingles

    In article <[email protected]>,
    [email protected] (Donna G) wrote:

    > Seems as though so many have gotten shingles this year! Wonder what is
    > going on?
    >
    > I'm curious, as I know many have said they have gotten the shingles
    > vaccine, but I though you couldn't get the vaccine if you were immuno
    > compromised at all.
    >
    > Any of you know whether this is true or not?


    My GP won't give me the vaccine unless my rheumy OKs it, because I'm on
    an immunosuppressant. (And this was even after a discussion of whether a
    rash I'd had could have been shingles; she agreed that it wasn't, based
    on my description of the rash as annoying rather than agonizing.)

    --
    "Isn't embarrassing to quote something you didn't read and then attack
    what it didn't say?"--WG, where else but Usenet

  9. #9
    x x Guest

    Default Re: RA and Shingles

    10:13PM Evening Donna. I was taught and have read that Shingles was
    Dormant Chickn Pox waiting for the resistance to get low enough so it
    could make its appearance. This especially so in people that never had
    Chciken Pox. most folk that i have seen with Shingles said they never
    had Chicken Pox. They only got the most blisters and rash around their
    middle areas. from them, i've heard that it is itchy and painful. i had
    chicken Pox when i was young, so hopfully there isn't some laying around
    dormant waiting to spring on me.
    Prayers for those suffering with Shingles. May they clar up dry up ASAP.
    Moe


  10. #10
    Paul T Holland Guest

    Default Re: RA and Shingles

    h i ted, [and you old timers that would remember me, HOWDEE!]

    - I don't look in very often anymore [ you'll know why when you read my
    journey],

    ted

    i'm a still's disease, which is a form of soft tissue RA - and yes, i am
    dealing with the shingles for over a year now...

    first off - i wasn't supposed to get it because my chart says i never
    had chicken pox as a kid - that was back in the late 40's early 50's -
    back then if you didn't have the rash/pustules,you didn't have cp - well
    of course now they know better - you can have cp without a major
    outbreak - ...and...with the still's, you get rashes every time you have
    a flare - so clearly i 'must' have had it - but it just wasn't observed.

    anyway, first week of feb. 2011 i broke out is a gorgeous rash on left
    side, from collar bone to about two inches below ribs, all the way
    around the left side to the spine all i one day - doc saw me the next
    day and immed. put on valtrex [Valacyclovir] for 10 day treatment to try
    to dampen it down -

    didn't work - rash turned to blisters, blisters turned to blood blisters
    and over about a weeks time they joined until it looked like i was
    wearing a vest on that side.

    all they could do was dope me up until i was practically drooling to
    make it bearable at all - that stage lasted for more than 6 weeks, could
    bear to have any clothing touch it,

    and basically just sat around - couldn't lay down, so slept by having a
    pillow on the dining room table and leaned into it - until it finally
    started to abate and the blisters began to dry.-

    and then, the the real pain started.

    as the blisters dried out, 'post herpatic neuralgia' began to ramp up.
    3 root nerves from about T7/8 were damaged. one branch is on my back
    roughly in the shape of a question makr, one comes around the side and
    goes up to my armpit, the other comes around front and covers left side
    of chest - and it burns.

    to say it feels like i am being flayed does not completely describe it.

    could not stand to have any clothing on it, any cold draft was
    unbearable, running water like a shower made it worse, lifting left arm
    put tension on it, blah - blah -blah - essentially, couldn't do anything.

    I could walk around, and sit leaning forward. beat my head against the
    wall.

    7 1/2 and up on a 10 scale

    the process of getting the pain under control is an ongoing journey -
    but now, 14 months later, i'm currrently using daily

    1200mg of lyrica,

    1200 mg of nucynta [artifical opioid]

    a bunch of otc vit's to counter systemic stress,

    at night 3 lidoderm patches - front,side, back - can only wear them for
    a max of 12 hours, so use 'em at night,

    also during daytime a custom compounded cream called ADKAL which is:
    [acyclover,deoxy-d-glucose,ketoprofen,amitriptyline hcl,lidocaine]
    I have a mail order pharm that makes it up once amonth

    oh - and i've had two spinal blocks that helped a tad - maybe one point
    on the scale...i'll take it...the nerve on the back was helped more than
    the other two, enough that i can lean back if i don't move around.

    with meds, it's a 4 to 5 on the scale

    now with the above,i can stand to wear a shirt most days, drive myself
    around [being very careful - some days i can't do it.]

    Now i can sleep in an easy chair - that keeps me from rolling over and
    putting pressure on side and front.

    it hasn't gone away - but with meds, it is tamped down to a point where
    I can function - if at a reduced level - fatigue is a major factor

    not to mention that i still have the ocassional still's outbreak and
    with that i have costo in the ribs - so that puts pressure 'upwards' on
    the same nerves that the shingles neuralgia have damamged. more drugs
    then. then it's just put me out.

    and i still have to take my still's meds on top of all the other.

    All my pain clinic docs can tell me is that there is good percentage of
    folks where it evertually subsides...but how long...no guesses.

    they 'think' that the auto immune thing isn't helping the shengles
    damage heal

    at my pcp, there are over a dozen seniors that have it to some degree,
    and at the pain clinic [where the more serious ones get sent] over 20 of
    us. all in different locations, but all with the nerve damage and
    excitation that hasn't subsided.

    the thing i would most enjoy at this point wuold just to be able to have
    a full nights rest, in bed...without it jerking me awake if i move.

    If you can, GET THE SHOT, 'cause you really, really, really do not want
    to have any part of this thing. Not many to this degree, but DO NOT TAKE
    THE CHANCE

    ah well tis what it is - tomm is another day i shall get up and go at it
    again

    this is longer than i inteneded and i'm pooped so tah -

    i'll try to look in again when energy permits

    To the names I know that are still posting, i'll try to touch base with
    you , but not today...

    paul


    On 2/17/2012 7:12 PM, TedTheCat wrote:
    > So, the standard warning for biologics is to report to the rheumy if a
    > rash develops. Do it! The rash could be shingles, a disease which
    > especially likes immuno-compromised folks like us, and a disease whose
    > severity and length can be lessened if treatment is started
    > promptly.
    >
    > I got it.
    >
    > Has anyone before me gotten shingles on top of RA? Any and all
    > comments or stories are welcome.


  11. #11
    Donna G Guest

    Default Re: RA and Shingles




    OMG Paul! That sounds like such a major nightmare! I can't even begin
    to imagine!

    I'm so sorry you have to contend with all of this.

    Can they do individual nerve blocks or anything?

    Also, at some point, will you be able to get the shingles vaccine? I
    ask, because I know you can get shingles more then once and lord have
    mercy, I would hate to think of you getting this again!

    Praying, praying, praying that this will all ease up considerably and
    then go away and for this to happen SOON!

    14 months of this is more than enough to have to live with! I imagine
    this takes a toll on your loved ones as well having to see you go
    through this!

    Good to see your name on the boards, though!

    ..
    ..
    Donna G.
    ..
    ..
    1) Rejoice always, Pray continually, Give thanks in all circumstances,
    For this is God's will for you in Christ Jesus. ( I Thessalonians
    5:16-18 NIV )

    2) ANGELS EXIST, but some times, since they don't all have wings, we
    call them FRIENDS......

    3) Just because you're in pain, doesn't mean you have to be one!


  12. #12
    Harvey Guest

    Default Re: RA and Shingles

    I have to admit that you have it worse than I did. I wish you lived in
    Houston where research is bing done in a clinic here. I tried to get in
    the program but you can't get in if you take
    prednisone. I did meet a man there like you that had major pain over a
    year. The nerve damage does not go away. I hope you find peace and
    things get better for you. I have said a prayer that things improve. The
    truth of it is that todays medicine does not know enough about this and how
    to treat it. Like Donna said,,,, it is good to see you on the board
    again.
    Harv



    "Paul T Holland" wrote in message news:jnq1s8$6bv$[email protected]..

    h i ted, [and you old timers that would remember me, HOWDEE!]

    - I don't look in very often anymore [ you'll know why when you read my
    journey],

    ted

    i'm a still's disease, which is a form of soft tissue RA - and yes, i am
    dealing with the shingles for over a year now...

    first off - i wasn't supposed to get it because my chart says i never
    had chicken pox as a kid - that was back in the late 40's early 50's -
    back then if you didn't have the rash/pustules,you didn't have cp - well
    of course now they know better - you can have cp without a major
    outbreak - ...and...with the still's, you get rashes every time you have
    a flare - so clearly i 'must' have had it - but it just wasn't observed.

    anyway, first week of feb. 2011 i broke out is a gorgeous rash on left
    side, from collar bone to about two inches below ribs, all the way
    around the left side to the spine all i one day - doc saw me the next
    day and immed. put on valtrex [Valacyclovir] for 10 day treatment to try
    to dampen it down -

    didn't work - rash turned to blisters, blisters turned to blood blisters
    and over about a weeks time they joined until it looked like i was
    wearing a vest on that side.

    all they could do was dope me up until i was practically drooling to
    make it bearable at all - that stage lasted for more than 6 weeks, could
    bear to have any clothing touch it,

    and basically just sat around - couldn't lay down, so slept by having a
    pillow on the dining room table and leaned into it - until it finally
    started to abate and the blisters began to dry.-

    and then, the the real pain started.

    as the blisters dried out, 'post herpatic neuralgia' began to ramp up.
    3 root nerves from about T7/8 were damaged. one branch is on my back
    roughly in the shape of a question makr, one comes around the side and
    goes up to my armpit, the other comes around front and covers left side
    of chest - and it burns.

    to say it feels like i am being flayed does not completely describe it.

    could not stand to have any clothing on it, any cold draft was
    unbearable, running water like a shower made it worse, lifting left arm
    put tension on it, blah - blah -blah - essentially, couldn't do anything.

    I could walk around, and sit leaning forward. beat my head against the
    wall.

    7 1/2 and up on a 10 scale

    the process of getting the pain under control is an ongoing journey -
    but now, 14 months later, i'm currrently using daily

    1200mg of lyrica,

    1200 mg of nucynta [artifical opioid]

    a bunch of otc vit's to counter systemic stress,

    at night 3 lidoderm patches - front,side, back - can only wear them for
    a max of 12 hours, so use 'em at night,

    also during daytime a custom compounded cream called ADKAL which is:
    [acyclover,deoxy-d-glucose,ketoprofen,amitriptyline hcl,lidocaine]
    I have a mail order pharm that makes it up once amonth

    oh - and i've had two spinal blocks that helped a tad - maybe one point
    on the scale...i'll take it...the nerve on the back was helped more than
    the other two, enough that i can lean back if i don't move around.

    with meds, it's a 4 to 5 on the scale

    now with the above,i can stand to wear a shirt most days, drive myself
    around [being very careful - some days i can't do it.]

    Now i can sleep in an easy chair - that keeps me from rolling over and
    putting pressure on side and front.

    it hasn't gone away - but with meds, it is tamped down to a point where
    I can function - if at a reduced level - fatigue is a major factor

    not to mention that i still have the ocassional still's outbreak and
    with that i have costo in the ribs - so that puts pressure 'upwards' on
    the same nerves that the shingles neuralgia have damamged. more drugs
    then. then it's just put me out.

    and i still have to take my still's meds on top of all the other.

    All my pain clinic docs can tell me is that there is good percentage of
    folks where it evertually subsides...but how long...no guesses.

    they 'think' that the auto immune thing isn't helping the shengles
    damage heal

    at my pcp, there are over a dozen seniors that have it to some degree,
    and at the pain clinic [where the more serious ones get sent] over 20 of
    us. all in different locations, but all with the nerve damage and
    excitation that hasn't subsided.

    the thing i would most enjoy at this point wuold just to be able to have
    a full nights rest, in bed...without it jerking me awake if i move.

    If you can, GET THE SHOT, 'cause you really, really, really do not want
    to have any part of this thing. Not many to this degree, but DO NOT TAKE
    THE CHANCE

    ah well tis what it is - tomm is another day i shall get up and go at it
    again

    this is longer than i inteneded and i'm pooped so tah -

    i'll try to look in again when energy permits

    To the names I know that are still posting, i'll try to touch base with
    you , but not today...

    paul


    On 2/17/2012 7:12 PM, TedTheCat wrote:
    > So, the standard warning for biologics is to report to the rheumy if a
    > rash develops. Do it! The rash could be shingles, a disease which
    > especially likes immuno-compromised folks like us, and a disease whose
    > severity and length can be lessened if treatment is started
    > promptly.
    >
    > I got it.
    >
    > Has anyone before me gotten shingles on top of RA? Any and all
    > comments or stories are welcome.



  13. #13
    Donna G Guest

    Default Re: RA and Shingles



    ..
    ..
    Donna G.
    ..
    ..
    1) Rejoice always, Pray continually, Give thanks in all circumstances,
    For this is God's will for you in Christ Jesus. ( I Thessalonians
    5:16-18 NIV )

    2) ANGELS EXIST, but some times, since they don't all have wings, we
    call them FRIENDS......

    3) Just because you're in pain, doesn't mean you have to be one!


  14. #14
    Donna G Guest

    Default Re: RA and Shingles - Paul



    Hey Paul, when you feel up to popping in again, am wondering how Susie
    is doing, too!

    ..
    ..
    Donna G.
    ..
    ..
    1) Rejoice always, Pray continually, Give thanks in all circumstances,
    For this is God's will for you in Christ Jesus. ( I Thessalonians
    5:16-18 NIV )

    2) ANGELS EXIST, but some times, since they don't all have wings, we
    call them FRIENDS......

    3) Just because you're in pain, doesn't mean you have to be one!


  15. #15
    TedTheCat Guest

    Default Re: RA and Shingles

    On Friday, February 17, 2012 6:12:14 PM UTC-6, TedTheCat wrote:
    > So, the standard warning for biologics is to report to the rheumy if a
    > rash develops. Do it! The rash could be shingles, a disease which
    > especially likes immuno-compromised folks like us, and a disease whose
    > severity and length can be lessened if treatment is started
    > promptly.
    >
    > I got it.
    >
    > Has anyone before me gotten shingles on top of RA? Any and all
    > comments or stories are welcome.




    On Friday, February 17, 2012 6:12:14 PM UTC-6, TedTheCat wrote:
    > So, the standard warning for biologics is to report to the rheumy if a
    > rash develops. Do it! The rash could be shingles, a disease which
    > especially likes immuno-compromised folks like us, and a disease whose
    > severity and length can be lessened if treatment is started
    > promptly.
    >
    > I got it.
    >
    > Has anyone before me gotten shingles on top of RA? Any and all
    > comments or stories are welcome.



    WOW! That is terrible. And you have had it for longer than a year now.

    Thank you for sharing your experience and sincere hopes for speedy relief.

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