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Infection Merry-Go-Round
  1. #1
    Walt Hanks Guest

    Default Infection Merry-Go-Round

    Just venting here ...

    I am on Humira and Arava. I take Arava every-other day because of my liver
    issues, and Humira every week to make up the difference. This has me on a
    rediculous cycle.

    I take the Humira every week for a few weeks, then I get an infection -
    usually a staff or fungal infection of my skin. Then I skip a dose, have a
    flare, and the infection subsides (with treatment of course). Then I go
    back on weekly Humira to get the flare under control and start the cycle
    again!

    This is really getting old.

    My RD is afraid of going back on daily Arava, but she doesn't want to try
    anything else instead of Humira because I would likely have more infections.

    SCREAM!!!!!!!

    Walt



  2. #2
    Harvey R. Stone Guest

    Default Re: Infection Merry-Go-Round


    "Walt Hanks" <[email protected]> wrote in message
    news:[email protected] ..
    > Just venting here ...
    >
    > I am on Humira and Arava. I take Arava every-other day because of my
    > liver issues, and Humira every week to make up the difference. This has
    > me on a rediculous cycle.
    >
    > I take the Humira every week for a few weeks, then I get an infection -
    > usually a staff or fungal infection of my skin. Then I skip a dose, have
    > a flare, and the infection subsides (with treatment of course). Then I go
    > back on weekly Humira to get the flare under control and start the cycle
    > again!
    >
    > This is really getting old.
    >
    > My RD is afraid of going back on daily Arava, but she doesn't want to try
    > anything else instead of Humira because I would likely have more
    > infections.
    >
    > SCREAM!!!!!!!
    >
    > Walt


    Oh my,,, you are not alone with your problems. Many people have that
    battle with their sinuses and their inflam.arth. Try to get your doctor
    to battle the infections without turning your immune system up side down.

    Harv



  3. #3
    Guest

    Default Re: Infection Merry-Go-Round

    Walt, that scream wasn't quite loud enough to work. Try Again!
    Gwen


    "Walt Hanks" <[email protected]> wrote in message
    news:[email protected] ..
    > Just venting here ...
    >
    > I am on Humira and Arava. I take Arava every-other day because of my
    > liver issues, and Humira every week to make up the difference. This has
    > me on a rediculous cycle.
    >
    > I take the Humira every week for a few weeks, then I get an infection -
    > usually a staff or fungal infection of my skin. Then I skip a dose, have
    > a flare, and the infection subsides (with treatment of course). Then I go
    > back on weekly Humira to get the flare under control and start the cycle
    > again!
    >
    > This is really getting old.
    >
    > My RD is afraid of going back on daily Arava, but she doesn't want to try
    > anything else instead of Humira because I would likely have more
    > infections.
    >
    > SCREAM!!!!!!!
    >
    > Walt
    >




  4. #4
    Paul Cassel Guest

    Default Re: Infection Merry-Go-Round

    Walt Hanks wrote:
    > Just venting here ...
    >
    > I am on Humira and Arava. I take Arava every-other day because of my liver
    > issues, and Humira every week to make up the difference. This has me on a
    > rediculous cycle.
    >
    > I take the Humira every week for a few weeks, then I get an infection -
    > usually a staff or fungal infection of my skin. Then I skip a dose, have a
    > flare, and the infection subsides (with treatment of course). Then I go
    > back on weekly Humira to get the flare under control and start the cycle
    > again!
    >
    > This is really getting old.
    >
    > My RD is afraid of going back on daily Arava, but she doesn't want to try
    > anything else instead of Humira because I would likely have more infections.
    >


    If all your infections are superficial, try a superficial rather than a
    systemic resolution.

  5. #5
    Walt Hanks Guest

    Default Re: Infection Merry-Go-Round

    We use topical treatments Paul. Systemic treatments are too hard on my
    liver. I still have to back off the Humira to let my immune system help
    handle the infections.

    Walt

    "Paul Cassel" <[email protected]> wrote in message
    news:[email protected] ..
    > Walt Hanks wrote:
    >> Just venting here ...
    >>
    >> I am on Humira and Arava. I take Arava every-other day because of my
    >> liver issues, and Humira every week to make up the difference. This has
    >> me on a rediculous cycle.
    >>
    >> I take the Humira every week for a few weeks, then I get an infection -
    >> usually a staff or fungal infection of my skin. Then I skip a dose, have
    >> a flare, and the infection subsides (with treatment of course). Then I
    >> go back on weekly Humira to get the flare under control and start the
    >> cycle again!
    >>
    >> This is really getting old.
    >>
    >> My RD is afraid of going back on daily Arava, but she doesn't want to try
    >> anything else instead of Humira because I would likely have more
    >> infections.
    >>

    >
    > If all your infections are superficial, try a superficial rather than a
    > systemic resolution.




  6. #6
    nanny Guest

    Default Re: Infection Merry-Go-Round

    I don't blame you for being frustrated, Walt! I've had my fill of
    infections, too, this winter. I wish our bodies wouldn't work against us
    this way. Nanny
    "Walt Hanks" <[email protected]> wrote in message
    news:[email protected] ..
    > Just venting here ...
    >
    > I am on Humira and Arava. I take Arava every-other day because of my
    > liver issues, and Humira every week to make up the difference. This has
    > me on a rediculous cycle.
    >
    > I take the Humira every week for a few weeks, then I get an infection -
    > usually a staff or fungal infection of my skin. Then I skip a dose, have
    > a flare, and the infection subsides (with treatment of course). Then I go
    > back on weekly Humira to get the flare under control and start the cycle
    > again!
    >
    > This is really getting old.
    >
    > My RD is afraid of going back on daily Arava, but she doesn't want to try
    > anything else instead of Humira because I would likely have more
    > infections.
    >
    > SCREAM!!!!!!!
    >
    > Walt
    >




  7. #7
    Charrlygrl1 Guest

    Default Re: Infection Merry-Go-Round

    On Feb 13, 2:29*am, "nanny" <gloria...@woh.rr.com> wrote:
    > I don't blame you for being frustrated, Walt! *I've had my fill of
    > infections, too, this winter. *I wish our bodies wouldn't work against us
    > this way. *Nanny"Walt Hanks" <walt_ha...@comcast.net> wrote in message
    >
    > news:[email protected] ..
    >
    >
    >
    > > Just venting here ...

    >
    > > I am on Humira and Arava. *I take Arava every-other day because of my
    > > liver issues, and Humira every week to make up the difference. *This has
    > > me on a rediculous cycle.

    >
    > > I take the Humira every week for a few weeks, then I get an infection -
    > > usually a staff or fungal infection of my skin. *Then I skip a dose, have
    > > a flare, and the infection subsides (with treatment of course). *Then I go
    > > back on weekly Humira to get the flare under control and start the cycle
    > > again!

    >
    > > This is really getting old.

    >
    > > My RD is afraid of going back on daily Arava, but she doesn't want to try
    > > anything else instead of Humira because I would likely have more
    > > infections.

    >
    > > SCREAM!!!!!!!

    >
    > > Walt- Hide quoted text -

    >
    > - Show quoted text -


    Walt,

    I don't have any advice to offer, just wanted to say sorry. I am on
    Enbrel and a bunch of other drugs and have been very lucky infection-
    wise. I do read of a lot of people though, with sinus and other
    infections constantly yo-yo-ing between going off the meds to heal,
    only to return to them and get infections again.
    I wish I did have some advice to share : (

    Char

  8. #8
    d'huit Guest

    Default Re: Infection Merry-Go-Round

    bummer, guy. this situation has to be extreemly frustrating for you. i'm
    curious, here . . . how can your rd know with absolute certainty that other
    drugs will have the same effect upon you? seems to me she could be
    statistically guessing that "might" be the case for you, when it might not
    be the case at all. i mean, many seem to have different experiences with
    the same drugs. (of course, i realized i'm showing my ignorance, here.) if
    that's the case, i think the question you might have to ask yourself is:
    "is it worth the risk to you, and your frustration levels, to try something
    else that might continue this cycle or might just break the cycle?" i know,
    not much help here, but i do wish i knew an answer for you.

    kate


    "Walt Hanks" <[email protected]> wrote in message
    news:[email protected] ..
    Just venting here ...

    I am on Humira and Arava. I take Arava every-other day because of my liver
    issues, and Humira every week to make up the difference. This has me on a
    rediculous cycle.

    I take the Humira every week for a few weeks, then I get an infection -
    usually a staff or fungal infection of my skin. Then I skip a dose, have a
    flare, and the infection subsides (with treatment of course). Then I go
    back on weekly Humira to get the flare under control and start the cycle
    again!

    This is really getting old.

    My RD is afraid of going back on daily Arava, but she doesn't want to try
    anything else instead of Humira because I would likely have more infections.

    SCREAM!!!!!!!

    Walt




  9. #9
    Paul Cassel Guest

    Default Re: Infection Merry-Go-Round

    Walt Hanks wrote:
    > We use topical treatments Paul. Systemic treatments are too hard on my
    > liver. I still have to back off the Humira to let my immune system help
    > handle the infections.
    >


    I don't understand why you don't try alternatives to Humira to see if
    cycling will help break the pattern. A human body is an enormous
    chemical reaction. I'm very skeptical that anyone can predict with
    certainty that removing X and adding Y (with the same indications) will
    produce the same result every time.

    Clearly the pattern you are in distresses you so why not at least TRY
    something new?

  10. #10
    Paul Heizer Guest

    Default Re: Infection Merry-Go-Round

    I have almost the same situation. And I felt fantastic on Humira once a
    week. I am currently taking Arava once a day with milk thistle to protect my
    liver. And I have been taking Humira every 10 days for 2 months with good
    results. If those horrible sinus problems show up again I have no idea what
    to try. I might have to try small doses of prednisone. I also take Celebrax
    once a day with Cytotech to protect my stomach.
    Maybe 10 days would work for you.
    Best of luck!
    Judy H.

    "Walt Hanks" <[email protected]> wrote in message
    news:[email protected] ..
    > Just venting here ...
    >
    > I am on Humira and Arava. I take Arava every-other day because of my
    > liver issues, and Humira every week to make up the difference. This has
    > me on a rediculous cycle.
    >
    > I take the Humira every week for a few weeks, then I get an infection -
    > usually a staff or fungal infection of my skin. Then I skip a dose, have
    > a flare, and the infection subsides (with treatment of course). Then I go
    > back on weekly Humira to get the flare under control and start the cycle
    > again!
    >
    > This is really getting old.
    >
    > My RD is afraid of going back on daily Arava, but she doesn't want to try
    > anything else instead of Humira because I would likely have more
    > infections.
    >
    > SCREAM!!!!!!!
    >
    > Walt
    >




  11. #11
    Walt Hanks Guest

    Default Re: Infection Merry-Go-Round

    Your statement assumes that I am the one who doesn't want to try something
    new. I think what I said is that my RD doesn't want to try anything else
    yet. I can't prescribe for myself now can I.

    Walt

    "Paul Cassel" <[email protected]> wrote in message
    news:[email protected] ..
    > Walt Hanks wrote:
    >> We use topical treatments Paul. Systemic treatments are too hard on my
    >> liver. I still have to back off the Humira to let my immune system help
    >> handle the infections.
    >>

    >
    > I don't understand why you don't try alternatives to Humira to see if
    > cycling will help break the pattern. A human body is an enormous chemical
    > reaction. I'm very skeptical that anyone can predict with certainty that
    > removing X and adding Y (with the same indications) will produce the same
    > result every time.
    >
    > Clearly the pattern you are in distresses you so why not at least TRY
    > something new?




  12. #12
    Walt Hanks Guest

    Default Re: Infection Merry-Go-Round

    I was thinking about a 10-day cycle myself as a compromise. I will talk to
    my RD about it. Thanks!

    Walt

    "Paul Heizer" <[email protected]> wrote in message
    news:47b38177$0$24108$[email protected]..
    >I have almost the same situation. And I felt fantastic on Humira once a
    >week. I am currently taking Arava once a day with milk thistle to protect
    >my liver. And I have been taking Humira every 10 days for 2 months with
    >good results. If those horrible sinus problems show up again I have no idea
    >what to try. I might have to try small doses of prednisone. I also take
    >Celebrax once a day with Cytotech to protect my stomach.
    > Maybe 10 days would work for you.
    > Best of luck!
    > Judy H.
    >
    > "Walt Hanks" <[email protected]> wrote in message
    > news:[email protected] ..
    >> Just venting here ...
    >>
    >> I am on Humira and Arava. I take Arava every-other day because of my
    >> liver issues, and Humira every week to make up the difference. This has
    >> me on a rediculous cycle.
    >>
    >> I take the Humira every week for a few weeks, then I get an infection -
    >> usually a staff or fungal infection of my skin. Then I skip a dose, have
    >> a flare, and the infection subsides (with treatment of course). Then I
    >> go back on weekly Humira to get the flare under control and start the
    >> cycle again!
    >>
    >> This is really getting old.
    >>
    >> My RD is afraid of going back on daily Arava, but she doesn't want to try
    >> anything else instead of Humira because I would likely have more
    >> infections.
    >>
    >> SCREAM!!!!!!!
    >>
    >> Walt
    >>

    >
    >




  13. #13
    vickie b. Guest

    Default Re: Infection Merry-Go-Round

    Walt no advice but I wanted to let you know that my heart goes out to
    you!

    Vickie B>

  14. #14
    Harvey R. Stone Guest

    Default Re: Infection Merry-Go-Round


    "Walt Hanks" <[email protected]> wrote in message
    news:[email protected] ..
    > Your statement assumes that I am the one who doesn't want to try something
    > new. I think what I said is that my RD doesn't want to try anything else
    > yet. I can't prescribe for myself now can I.
    >
    > Walt


    Well said........ Most of the time many of us will adjust what we take for
    treating our inflam.arth. at our bodies expense. I know that I have done
    it several times. I really think we should treat each problem separately.

    Harv

    Ps and then when that does not work cut back on the immune control to help
    the body fight the problem.



  15. #15
    Billy Boy Guest

    Default Re: Infection Merry-Go-Round

    Walt, do yourself a favor and search "probiotics" and treat the underlying problem rather
    than just covering up the symptoms. Lots of info and I have personally benefited greatly
    from taking probiotics in Kefir and supplements.

    Hope this helps.

    Bill



    On Tue, 12 Feb 2008 15:51:02 -0500, "Walt Hanks" <[email protected]> wrote:

    >Just venting here ...
    >
    >I am on Humira and Arava. I take Arava every-other day because of my liver
    >issues, and Humira every week to make up the difference. This has me on a
    >rediculous cycle.
    >
    >I take the Humira every week for a few weeks, then I get an infection -
    >usually a staff or fungal infection of my skin. Then I skip a dose, have a
    >flare, and the infection subsides (with treatment of course). Then I go
    >back on weekly Humira to get the flare under control and start the cycle
    >again!
    >
    >This is really getting old.
    >
    >My RD is afraid of going back on daily Arava, but she doesn't want to try
    >anything else instead of Humira because I would likely have more infections.
    >
    >SCREAM!!!!!!!
    >
    >Walt
    >


    Billy Boy

    To reply correct [at] and [dot]

  16. #16
    Paul Cassel Guest

    Default Re: Infection Merry-Go-Round

    Walt Hanks wrote:
    > Your statement assumes that I am the one who doesn't want to try something
    > new. I think what I said is that my RD doesn't want to try anything else
    > yet. I can't prescribe for myself now can I.
    >

    I disagree. You are in charge and responsible for your health, not your
    provider. It's your life and you must live it as you see fit, but for
    me, I make the decisions. I've never had a provider deny prescribing any
    treatment I could make a good case for. Never.

    -paul

  17. #17
    Squirrely Guest

    Default Re: Infection Merry-Go-Round

    Oh Walt,

    Don't have any magical suggestions here but wanted you to know we are all
    thinking of you.

    Take care and I hope no more infecitons for you.

    --
    Love and Hugs to all
    Jo the squirrely one
    I am nuts about you.
    > Just venting here ...
    >
    > I am on Humira and Arava. I take Arava every-other day because of my
    > liver issues, and Humira every week to make up the difference. This has
    > me on a rediculous cycle.
    >
    > I take the Humira every week for a few weeks, then I get an infection -
    > usually a staff or fungal infection of my skin. Then I skip a dose, have
    > a flare, and the infection subsides (with treatment of course). Then I go
    > back on weekly Humira to get the flare under control and start the cycle
    > again!
    >
    > This is really getting old.
    >
    > My RD is afraid of going back on daily Arava, but she doesn't want to try
    > anything else instead of Humira because I would likely have more
    > infections.
    >
    > SCREAM!!!!!!!
    >
    > Walt
    >




  18. #18
    Nann Bell Guest

    Default Re: Infection Merry-Go-Round

    (((((((((((walt)))))))))))

    > My RD is afraid of going back on daily Arava, but she doesn't want to try
    > anything else instead of Humira because I would likely have more infections.


    does that include trying biologics other than TNF inhibitors? It seems to me
    that one could make a strong case for at least trying those as your immune
    system might respond quite differently to them. As i now seem to be off TNF
    inhibitors for good, i'm thinking i'll have to make that case in the future.

    --
    Nann
    remove the Gator cheer to email me
    Simply the thing I am shall make me live --- William Shakespeare


  19. #19
    Kelly Guest

    Default Re: Infection Merry-Go-Round

    I will second that Walt and Nann. With enbrel I was constantly fighting
    sinus infections - one after another, off enbrel more it seemed than on at
    the end. Although I fight infections after the rituxan treatments I have
    one sinus infection a year in the past 2 years since off enbrel (although
    yes the uti's but with my bladder condition that isn't uncommon) and I have
    lots of time between rituxan treatments to recoup. I have to say it is
    working for me and I know that orencia is working for KJ last we talked to
    her and for Thumper.

    Just a thought - there are still meds coming onto the market. Some work
    differently for different people. I know you discuss and work with your
    doctor Walt but maybe it is time for another discussion. Glad to hear
    though that for the most part things are going well for your family.
    Hopefully things will improve for your daughter quickly.

    Kelly

    "Nann Bell" <[email protected]> wrote in message
    news:[email protected] thlink.net...
    > (((((((((((walt)))))))))))
    >
    >> My RD is afraid of going back on daily Arava, but she doesn't want to try
    >> anything else instead of Humira because I would likely have more
    >> infections.

    >
    > does that include trying biologics other than TNF inhibitors? It seems to
    > me
    > that one could make a strong case for at least trying those as your immune
    > system might respond quite differently to them. As i now seem to be off
    > TNF
    > inhibitors for good, i'm thinking i'll have to make that case in the
    > future.
    >
    > --
    > Nann
    > remove the Gator cheer to email me
    > Simply the thing I am shall make me live --- William Shakespeare
    >




  20. #20
    RoseB Guest

    Default Re: Infection Merry-Go-Round

    I have been on 50 mgs of doxycycline daily since last March as a
    prophylaxis treatment for sinus infections. I used to have regular
    infections, but since starting this regimen have had very few. I had
    one at Christmas time, but then i was not vigilant about taking the
    doxy.
    My rheumy prescribed this, saying that this was being done in practice
    although there has not been long term studies done yet regarding its
    efficacy. It was brought out at last year's ACR convention.
    Rose @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.

  21. #21
    Donna G. Guest

    Default Re: Infection Merry-Go-Round




    Walt,


    I'll have to agree with Kelly and Nann. Maybe it's time to look at
    rituxan or orencia.

    I loved enbrel when I was on it, but the infections were endless and
    like, Kelly, I was off the enbrel as much as I was on it. RD finally
    said enough and pulled me off of the enbrel. I'm now doing the rituxan
    and although the first couple of weeks after the infusions can be a bit
    rough, it is doable as then you don't have to deal with it again for
    about 9 months or so. Fewer infections over the long run.

    Also, this not a high probability, but I will just throw it out here
    anyways. I was just recently diagnosed with an immune-deficiency
    called CVID which is common variable immuno-deficiency. This was
    discovered kind of by accident when my doctors were trying to figure out
    why I got so many infections all the time. They drew labs that checked
    immunoglobulin levels (IgG, IgM, IgE, IgA) and discovered that some of
    those levels were almost non existant in me. So, you might just want to
    keep that in the back of your mind or have your doctor check you levels.
    It's a simple blood test so nothing complicated.

    Best of luck to you, sure hope things smooth out for you soon!

    ..
    ..
    ..
    ..

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


    2.) J.K.M.A.


  22. #22
    Donna G. Guest

    Default Re: Infection Merry-Go-Round




    Walt,


    I'll have to agree with Kelly and Nann. Maybe it's time to look at
    rituxan or orencia.

    I loved enbrel when I was on it, but the infections were endless and
    like, Kelly, I was off the enbrel as much as I was on it. RD finally
    said enough and pulled me off of the enbrel. I'm now doing the rituxan
    and although the first couple of weeks after the infusions can be a bit
    rough, it is doable as then you don't have to deal with it again for
    about 9 months or so. Fewer infections over the long run.

    Also, this not a high probability, but I will just throw it out here
    anyways. I was just recently diagnosed with an immune-deficiency
    called CVID which is common variable immuno-deficiency. This was
    discovered kind of by accident when my doctors were trying to figure out
    why I got so many infections all the time. They drew labs that checked
    immunoglobulin levels (IgG, IgM, IgE, IgA) and discovered that some of
    those levels were almost non existant in me. So, you might just want to
    keep that in the back of your mind or have your doctor check you levels.
    It's a simple blood test so nothing complicated.

    Best of luck to you, sure hope things smooth out for you soon!

    ..
    ..
    ..
    ..

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


    2.) J.K.M.A.


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