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
Harvey R. Stone - 12 Feb 2008 22:12 GMT
> Just venting here ...
>
[quoted text clipped - 17 lines]
>
> 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
sweetpickleNO@SPAMknology.net - 12 Feb 2008 22:53 GMT
Walt, that scream wasn't quite loud enough to work. Try Again!
Gwen
> Just venting here ...
>
[quoted text clipped - 17 lines]
>
> Walt
Paul Cassel - 13 Feb 2008 00:49 GMT
> Just venting here ...
>
[quoted text clipped - 12 lines]
> 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.
Walt Hanks - 13 Feb 2008 00:56 GMT
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
>> Just venting here ...
>>
[quoted text clipped - 16 lines]
> If all your infections are superficial, try a superficial rather than a
> systemic resolution.
Paul Cassel - 13 Feb 2008 23:32 GMT
> 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?
Walt Hanks - 14 Feb 2008 00:07 GMT
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
>> 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
[quoted text clipped - 8 lines]
> Clearly the pattern you are in distresses you so why not at least TRY
> something new?
Harvey R. Stone - 14 Feb 2008 01:21 GMT
> 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.
Paul Cassel - 14 Feb 2008 19:18 GMT
> 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
nanny - 13 Feb 2008 07:29 GMT
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
> Just venting here ...
>
[quoted text clipped - 17 lines]
>
> Walt
Charrlygrl1 - 13 Feb 2008 17:58 GMT
> 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
[quoted text clipped - 22 lines]
>
> - 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
d'huit - 13 Feb 2008 22:41 GMT
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
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
Paul Heizer - 13 Feb 2008 23:46 GMT
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.
> Just venting here ...
>
[quoted text clipped - 17 lines]
>
> Walt
Walt Hanks - 14 Feb 2008 00:09 GMT
I was thinking about a 10-day cycle myself as a compromise. I will talk to
my RD about it. Thanks!
Walt
>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
[quoted text clipped - 27 lines]
>>
>> Walt
vickie b. - 14 Feb 2008 00:34 GMT
Walt no advice but I wanted to let you know that my heart goes out to
you!
Vickie B>
Billy Boy - 14 Feb 2008 14:16 GMT
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
>Just venting here ...
>
[quoted text clipped - 16 lines]
>
>Walt
Billy Boy
To reply correct [at] and [dot]
Squirrely - 14 Feb 2008 20:33 GMT
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.

Signature
Love and Hugs to all
Jo the squirrely one
I am nuts about you.
> Just venting here ...
>
[quoted text clipped - 17 lines]
>
> Walt
Nann Bell - 15 Feb 2008 17:04 GMT
(((((((((((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.

Signature
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare
Kelly - 15 Feb 2008 21:11 GMT
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
> (((((((((((walt)))))))))))
>
[quoted text clipped - 9 lines]
> inhibitors for good, i'm thinking i'll have to make that case in the
> future.
RoseB - 16 Feb 2008 05:04 GMT
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.
Donna G. - 16 Feb 2008 06:55 GMT
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.
Donna G. - 16 Feb 2008 06:55 GMT
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.