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| zinn_ponders@yahoo.com 2006-08-26, 4:27 pm |
| Hi everyone,
I don't post much, try to read but I've been absent long time.
My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
me to go for eye exam first because he said it could cause problems.
I have seen the thread on this med, and I looked it up and it has
sulfites in it, I am very reactive to sulfa so doubt I can take it, I
am not wanting to add so many new symptoms to my long list <lupus is
not my only dx>.
My question is, do you know of something else that would help the joint
pain?
Thanks,
Zinn
| |
|
| Hey Zinn!
how ya doin?
I take methotrexate, which is an antimetabolite used for cancer
chemotherapy. It is given in small doses for RA and for lupus... ask your
rheumie about it....
Mair
<zinn_ponders@yahoo.com> wrote in message
news:1156619536.441954.275950@p79g2000cwp.googlegroups.com...
> Hi everyone,
> I don't post much, try to read but I've been absent long time.
>
>
> My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
> me to go for eye exam first because he said it could cause problems.
>
> I have seen the thread on this med, and I looked it up and it has
> sulfites in it, I am very reactive to sulfa so doubt I can take it, I
> am not wanting to add so many new symptoms to my long list <lupus is
> not my only dx>.
>
> My question is, do you know of something else that would help the joint
> pain?
>
> Thanks,
> Zinn
>
| |
| zinn_ponders@yahoo.com 2006-08-26, 4:27 pm |
| Hi Mair,
I knew you would answer <G>
Oh gosh, I forgot about the methotrexate. I have in big red letters on
my chart at doc NO CHEMO stuff, guess there isn't many choices.
I have been better, been worse too, thanks for asking Mair. Hope your
birthday went well! I saw J started the b-day thread, is she the next
b-day gal here?
The Rheumy said the Plaquilnel use changes eye vision, that colors
would look different, I already see them different , so wondering if I
would see normal, haha. I doubt I give it a try.
As always its good to see you.
hugs,
Zinn
Mair wrote:
[vbcol=seagreen]
> Hey Zinn!
>
> how ya doin?
>
> I take methotrexate, which is an antimetabolite used for cancer
> chemotherapy. It is given in small doses for RA and for lupus... ask your
> rheumie about it....
>
> Mair
>
> <zinn_ponders@yahoo.com> wrote in message
> news:1156619536.441954.275950@p79g2000cwp.googlegroups.com...
| |
| Beverley 2006-08-26, 9:27 pm |
| Zinn, I don't think there is any way to know if you take it until you try. I
think they start at a very low dose anyway, and it has to build in your
system to be helpful. It could be your wonder drug.
Are you color blind? That doesn't happen too often in females but it does
happen.
Bev
<zinn_ponders@yahoo.com> wrote in message
news:1156619536.441954.275950@p79g2000cwp.googlegroups.com...
> Hi everyone,
> I don't post much, try to read but I've been absent long time.
>
>
> My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
> me to go for eye exam first because he said it could cause problems.
>
> I have seen the thread on this med, and I looked it up and it has
> sulfites in it, I am very reactive to sulfa so doubt I can take it, I
> am not wanting to add so many new symptoms to my long list <lupus is
> not my only dx>.
>
> My question is, do you know of something else that would help the joint
> pain?
>
> Thanks,
> Zinn
>
| |
| zinn_ponders@yahoo.com 2006-08-26, 9:27 pm |
| I will really have to ponder and talk to PCP on tuesday, I am very
chemical sensitive, my disability was awarded for chemical
poisoning/severe allergies.
I often see the 'yellow' street lights as amber, if colors are mixed
like a 'blue-green' I can't tell what it is, reds often look orange,
things like that and after a bright day it takes my eyes long time to
adjust.
Thanks for your input, and yes the doctor did say small dose's to
start.
Zinn
Beverley wrote:
[vbcol=seagreen]
> Zinn, I don't think there is any way to know if you take it until you try. I
> think they start at a very low dose anyway, and it has to build in your
> system to be helpful. It could be your wonder drug.
>
> Are you color blind? That doesn't happen too often in females but it does
> happen.
> Bev
>
>
> <zinn_ponders@yahoo.com> wrote in message
> news:1156619536.441954.275950@p79g2000cwp.googlegroups.com...
| |
| moonlightonly 2006-08-26, 9:27 pm |
| Hi Zinn, I too am sen to sulfa, but have been on Plaq. now for about 5
yrs with no probs. except going to the eye dr. every 6 mos to check my
eyes, so far no prob.in that dept.Hope it helps with your question,Tina
zinn_ponders@yahoo.com wrote:
> Hi everyone,
> I don't post much, try to read but I've been absent long time.
>
>
> My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
> me to go for eye exam first because he said it could cause problems.
>
> I have seen the thread on this med, and I looked it up and it has
> sulfites in it, I am very reactive to sulfa so doubt I can take it, I
> am not wanting to add so many new symptoms to my long list <lupus is
> not my only dx>.
>
> My question is, do you know of something else that would help the joint
> pain?
>
> Thanks,
> Zinn
| |
| zinn_ponders@yahoo.com 2006-08-26, 9:27 pm |
| hi moonlightonly,
I am glad it works for you, can you tell me what symptom of lupus it
releives for you?
I think the fatigue and joint pain is becoming more than I can bear
anymore, but now to add 2 more doc's to my schedule is overwhelming,
we/I need less not more... I know all must relate to that one, this is
a full time job.
Thanks for responding, gives me more to work on.
Zinn
moonlightonly wrote:
[vbcol=seagreen]
> Hi Zinn, I too am sen to sulfa, but have been on Plaq. now for about 5
> yrs with no probs. except going to the eye dr. every 6 mos to check my
> eyes, so far no prob.in that dept.Hope it helps with your question,Tina
> zinn_ponders@yahoo.com wrote:
| |
|
| In article <1156619536.441954.275950@p79g2000cwp.googlegroups.com>,
zinn_ponders@yahoo.com wrote
>Hi everyone,
>I don't post much, try to read but I've been absent long time.
>
>
>My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
>me to go for eye exam first because he said it could cause problems.
>
>I have seen the thread on this med, and I looked it up and it has
>sulfites in it, I am very reactive to sulfa so doubt I can take it,
These may be as a preservative. Can your PCP find a different
formulation, probably from another maker?
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
|
Andy wrote:
> In article <1156619536.441954.275950@p79g2000cwp.googlegroups.com>,
> zinn_ponders@yahoo.com wrote
>
> These may be as a preservative. Can your PCP find a different
> formulation, probably from another maker?
> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
Thanks Andy, that is exactly where my thoughts are going too, my PCP
keeps a very close eye on me and I've grown to trust him with my
health.
I see him Tuesday and will give an update, should have seen him on
Thursday, but we had a tornado and most of our county did not have
power and many lines and tree's down.
Thanks,
Zinn
| |
| Beverley 2006-08-27, 4:33 pm |
| Wow, I didn't know you guys had tornadoes too. I guess swirling air can
happen anywhere but I don't think I've ever thought about it happening much
elsewhere.
Did it do a lot of damage aside from knocking out power lines?
Bev
"Zinn" <zinn_ponders@yahoo.com> wrote in message
news:1156691809.420472.40640@i3g2000cwc.googlegroups.com...
>
> Andy wrote:
>
> Thanks Andy, that is exactly where my thoughts are going too, my PCP
> keeps a very close eye on me and I've grown to trust him with my
> health.
>
> I see him Tuesday and will give an update, should have seen him on
> Thursday, but we had a tornado and most of our county did not have
> power and many lines and tree's down.
>
> Thanks,
> Zinn
>
| |
| Nicole 2006-08-27, 4:33 pm |
| a.. chloroquine (Aralen)
a.. quinacrine (Atabrine)
a.. are both anti-malarials that can be used in lupus.
http://www.lupus.org/education/broc...alarials01.html
Are you taking any NSAIDS for the joint pain? If that doesn't work, I
suggest you find a pain management doctor.
A lot of rheumatologist will put you on steroids for joint pain. I refuse
to go this route since pain meds are safer and I don't have to worry about
the short/long term affects of the steroids.
HTH
Nicole
crimsonshedemon at hotmail.com
<zinn_ponders@yahoo.com> wrote in message
news:1156619536.441954.275950@p79g2000cwp.googlegroups.com...
> Hi everyone,
> I don't post much, try to read but I've been absent long time.
>
>
> My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
> me to go for eye exam first because he said it could cause problems.
>
> I have seen the thread on this med, and I looked it up and it has
> sulfites in it, I am very reactive to sulfa so doubt I can take it, I
> am not wanting to add so many new symptoms to my long list <lupus is
> not my only dx>.
>
> My question is, do you know of something else that would help the joint
> pain?
>
> Thanks,
> Zinn
>
| |
| Shortie 2006-08-27, 4:33 pm |
| zinn_ponders@yahoo.com wrote:
> Hi everyone,
> I don't post much, try to read but I've been absent long time.
>
>
> My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
> me to go for eye exam first because he said it could cause problems.
>
> I have seen the thread on this med, and I looked it up and it has
> sulfites in it, I am very reactive to sulfa so doubt I can take it, I
> am not wanting to add so many new symptoms to my long list <lupus is
> not my only dx>.
>
> My question is, do you know of something else that would help the joint
> pain?
>
> Thanks,
> Zinn
Hey Zinn, For my joint pain I take Prednisone, I started on high dose
and now 5mg controls it and I have hardly any pain. Hope this helps.
Feel better
Maureen
| |
|
| In article <fwjIg.2860$Cs3.2845@tornado.socal.rr.com>, Nicole
<me@hotmail.com> wrote
[
>A lot of rheumatologist will put you on steroids for joint pain. I refuse
>to go this route since pain meds are safer and I don't have to worry about
>the short/long term affects of the steroids.
Agreed, (almost) anything else is better. However I recall my wife's
conversation with her doctor about steroid nose sprays. He: We don't
want those nasty steroids, do we? She: It would be nice if I could
breathe from time to time.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| yes, many trees down, big ones too.
2 tornado's came from Millwaki Wisconsin, straight down the middle of
lake Michigan and hit hard, I am about 15 miles from the shoreline, I
do beleive that never has tornado's taken this path.
We do get tornado's but they usually come from the southwest.
The experts still studing to see if it really was a tornado, duh, it
was seen but not by the right people I guess.
Zinn
Beverley wrote:[vbcol=seagreen]
> Wow, I didn't know you guys had tornadoes too. I guess swirling air can
> happen anywhere but I don't think I've ever thought about it happening much
> elsewhere.
>
> Did it do a lot of damage aside from knocking out power lines?
> Bev
>
>
> "Zinn" <zinn_ponders@yahoo.com> wrote in message
> news:1156691809.420472.40640@i3g2000cwc.googlegroups.com...
| |
|
| Pulmonary doc said no steriods, but I would take a short round in a
crisis, need it for poison ivy.
Pharmacist said something of Quinine, I know that is awful and would
change food and taste.
I used to take Symmetral, but was told they stopped making it, was an
antiviral.
I have so many things I do not know where symptoms are from, I will
look up the meds you wrote, thank you.
Zinn
Nicole wrote:[vbcol=seagreen]
> a.. chloroquine (Aralen)
> a.. quinacrine (Atabrine)
> a.. are both anti-malarials that can be used in lupus.
> http://www.lupus.org/education/broc...alarials01.html
>
>
> Are you taking any NSAIDS for the joint pain? If that doesn't work, I
> suggest you find a pain management doctor.
> A lot of rheumatologist will put you on steroids for joint pain. I refuse
> to go this route since pain meds are safer and I don't have to worry about
> the short/long term affects of the steroids.
> HTH
> Nicole
> crimsonshedemon at hotmail.com
> <zinn_ponders@yahoo.com> wrote in message
> news:1156619536.441954.275950@p79g2000cwp.googlegroups.com...
| |
|
| Shortie, yes, it does help... gives me hope, I am glad you found
relief.
Zinn
Shortie wrote:
> zinn_ponders@yahoo.com wrote:
>
> Hey Zinn, For my joint pain I take Prednisone, I started on high dose
> and now 5mg controls it and I have hardly any pain. Hope this helps.
> Feel better
> Maureen
| |
| Beverley 2006-08-27, 4:33 pm |
| Oh, do I feel stupid. I was thinking you were in the UK for some reason.
Still you do seem very north for tornadoes. We get one once in a while
around here but not often and they usually only hit a neighborhood and do a
little damage, power lines, roof shingles, sheds, and a few trees - once in
a blue moon they really stir some damage.
Bev
"Zinn" <zinn_ponders@yahoo.com> wrote in message
news:1156701973.410647.9050@b28g2000cwb.googlegroups.com...
> yes, many trees down, big ones too.
>
> 2 tornado's came from Millwaki Wisconsin, straight down the middle of
> lake Michigan and hit hard, I am about 15 miles from the shoreline, I
> do beleive that never has tornado's taken this path.
>
> We do get tornado's but they usually come from the southwest.
>
> The experts still studing to see if it really was a tornado, duh, it
> was seen but not by the right people I guess.
> Zinn
>
>
> Beverley wrote:
much[vbcol=seagreen]
wants[vbcol=seagreen]
problems.[vbcol=seagreen]
>
| |
|
| In article <YXmIg.33756$NF3.21131@trnddc05>, Beverley
<beverly.brown28@verizon.net> wrote
>Oh, do I feel stupid. I was thinking you were in the UK for some reason.
We get tornados too. Unusual, though getting less unusual.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| Don't feel bad, I have to get my map out alot to see where things are,
even in my own area!
Zinn
Andy wrote:
> In article <YXmIg.33756$NF3.21131@trnddc05>, Beverley
> <beverly.brown28@verizon.net> wrote
>
> We get tornados too. Unusual, though getting less unusual.
> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
| |
| mombalooey 2006-08-27, 9:25 pm |
| I started plaquenil in June and have done the first eye exam. According
to my opthamologist, The dosage I am on which is 200 mg twice a day, it
is very UNLIKELY for there to be any eye damage. The dosages used to be
higher but the rheumys have now found that the lower dose works just as
well in most cases but without the risk of eye damage. Just thought I
would share the info I had learned.
Janice in BC
zinn_ponders@yahoo.com wrote:
> Hi everyone,
> I don't post much, try to read but I've been absent long time.
>
>
> My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
> me to go for eye exam first because he said it could cause problems.
>
> I have seen the thread on this med, and I looked it up and it has
> sulfites in it, I am very reactive to sulfa so doubt I can take it, I
> am not wanting to add so many new symptoms to my long list <lupus is
> not my only dx>.
>
> My question is, do you know of something else that would help the joint
> pain?
>
> Thanks,
> Zinn
| |
|
| Thats great, what does the med do for you, what symptom does it
releive?
The Rhumey did say he would start me out with very very small dose,
like maybe just 2 times a week to begin, I was glad he understood my
system reacts to meds when I start them. I am not comfortable though.
My eyes are so bad already <sigh>
At this point I have more questions than anything helpful, I have never
been able to be a asset in this group as lupus is a mystery to me even
though I have read much about it since my first confirmation of having
it in 1999, mostly I just have forgotten about it, strange isn't it,
then I get re 'validated' and forced to think about it again.
Zinn
mombalooey wrote:[vbcol=seagreen]
> I started plaquenil in June and have done the first eye exam. According
> to my opthamologist, The dosage I am on which is 200 mg twice a day, it
> is very UNLIKELY for there to be any eye damage. The dosages used to be
> higher but the rheumys have now found that the lower dose works just as
> well in most cases but without the risk of eye damage. Just thought I
> would share the info I had learned.
> Janice in BC
> zinn_ponders@yahoo.com wrote:
| |
| moonlightonly 2006-08-27, 9:25 pm |
| Hi again Zinn, the plaq. works with the pred. to I think keep the
flares down and from the Lupus from attacting u inside, that is the
best that I can explain,it from my point of view, it does help with the
tireness as it starts to works and with the flares.As far as pain meds
I take Ultram and valium for my legs and reqip for my legs too,Tina
zinn_ponders@yahoo.com wrote:[vbcol=seagreen]
> hi moonlightonly,
> I am glad it works for you, can you tell me what symptom of lupus it
> releives for you?
>
> I think the fatigue and joint pain is becoming more than I can bear
> anymore, but now to add 2 more doc's to my schedule is overwhelming,
> we/I need less not more... I know all must relate to that one, this is
> a full time job.
> Thanks for responding, gives me more to work on.
> Zinn
>
>
> moonlightonly wrote:
>
| |
| moonlightonly 2006-08-27, 9:25 pm |
| My rhem went to pred route for my pain and I now take 7.5 mgs a day and
get a shot of it every 2-3 months. I know the risks and the side
effects r not pretty, but it keeps me pain free and moving most days to
do what I have to do,Tina
Zinn wrote:[vbcol=seagreen]
> Pulmonary doc said no steriods, but I would take a short round in a
> crisis, need it for poison ivy.
>
> Pharmacist said something of Quinine, I know that is awful and would
> change food and taste.
>
> I used to take Symmetral, but was told they stopped making it, was an
> antiviral.
>
> I have so many things I do not know where symptoms are from, I will
> look up the meds you wrote, thank you.
> Zinn
>
>
> Nicole wrote:
| |
|
| I take Requip too for Parkinson's, can't take ultram, do take xanex,
aleve and tylenol <other things also>. Perhaps I do not have the type
of lupus you do, Rheumy said it is the joint and skin involvement, and
extream fatigue, so not sure of my insides unless a worsening happens,
perhaps trying to avoid it, he was one of the nicest doc's I've been
to, but did not take time for questions or show me test results, just
told them to me.
I will let you know tuesday evening what my PCP does.
I am getting confused in this google format, posts do not appear like
in the outlook forum.
thanks for your patience and info,
Zinn
moonlightonly wrote:[vbcol=seagreen]
> Hi again Zinn, the plaq. works with the pred. to I think keep the
> flares down and from the Lupus from attacting u inside, that is the
> best that I can explain,it from my point of view, it does help with the
> tireness as it starts to works and with the flares.As far as pain meds
> I take Ultram and valium for my legs and reqip for my legs too,Tina
> zinn_ponders@yahoo.com wrote:
| |
| Nicole 2006-08-28, 2:25 am |
| I was 20 yo when diagnosed so there was no way.... if I started steroids
then plus a shot every couple months, I'd have diabetes, need a hip
replacement, etc. When my other drs found out what the rheumy wanted to do,
they threw the fit of all fits. They're the ones that have to deal with all
those lovely side effects (at least here)
That's why I take pain medications so I can be pain and moving.... all
without the side effects
"moonlightonly" <moonlightonly2@gmail.com> wrote in message
news:1156728408.248425.285500@i3g2000cwc.googlegroups.com...
> My rhem went to pred route for my pain and I now take 7.5 mgs a day and
> get a shot of it every 2-3 months. I know the risks and the side
> effects r not pretty, but it keeps me pain free and moving most days to
> do what I have to do,Tina
> Zinn wrote:
>
| |
| Nancy F 2006-08-28, 8:27 am |
| Zinn,
I have had sulfa allergy since 1950, almost died from not enougn air,
swelling in face, etc. I have taken Plaq safely with no signs of allergic
reaction for years. I think the sulphites in the Plaq are different enough
that they don't harm us.
O, and I know that my sulfa allergy is still active. In 2000 I had a
reactin to Lasix, a diuretic related to sulfa.
Plaq is an important tool and really helps many symptoms of SjS.
It's JMHO, but I would look at Plaq as worth trying at least.
--
Nancy F , SoCal, USA
Christ, Chorus, Cats, Computers
: I have seen the thread on this med, and I looked it up and it has
: sulfites in it, I am very reactive to sulfa so doubt I can take it,
: Thanks,
: Zinn
:
| |
| John Turner 2006-08-28, 4:30 pm |
| Has anyone here researched "lupus like syndrome" which can be caused by
statin and some hypertension drugs? It also can cause peripheral
neuropathy and rashes and joint pain. Just thought I would throw that
out there.
zinn_ponders@yahoo.com wrote:
>Hi everyone,
>I don't post much, try to read but I've been absent long time.
>
>
>My PCP found me a wonderful Rheumy, he wants me on Plaquenil but wants
>me to go for eye exam first because he said it could cause problems.
>
>I have seen the thread on this med, and I looked it up and it has
>sulfites in it, I am very reactive to sulfa so doubt I can take it, I
>am not wanting to add so many new symptoms to my long list <lupus is
>not my only dx>.
>
>My question is, do you know of something else that would help the joint
>pain?
>
>Thanks,
>Zinn
>
>
>
| |
|
| In article <qiFIg.7$qI2.0@southeast.rr.com>, John Turner
<jturner24@triad.rr.com> wrote
>Has anyone here researched "lupus like syndrome" which can be caused by
>statin and some hypertension drugs? It also can cause peripheral
>neuropathy and rashes and joint pain. Just thought I would throw that
>out there.
>
This sounds like "drug-induced lupus"; at the last count there were over
200 drugs alleged to cause this! Nearly always, the symptoms disappear
within 3-4 months after stopping the drug.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| Here is a abstract from the National Institute of Health, it always
seems to get no notice, but really needs to be out in the public for
all to see, every doctor I have given it to was extreamly interested.
http://ehpnet1.niehs.nih.gov/docs/1...n/abstract.html
Again, I thank everyone for the wonderful list of helpful information.
Tomorrow I will know more about how my other meds and health problems
will affect lupus treatment.
Zinn
Andy wrote:
> In article <qiFIg.7$qI2.0@southeast.rr.com>, John Turner
> <jturner24@triad.rr.com> wrote
> This sounds like "drug-induced lupus"; at the last count there were over
> 200 drugs alleged to cause this! Nearly always, the symptoms disappear
> within 3-4 months after stopping the drug.
> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
| |
|
| I can't do lasix either, is Sjs a type O or is it for Sjogrene's? I
have that too. Me thinks the majority of the people are encouraging me
try the Plaqinel, thanks for input, gotta wonder though, I am 60 years
old and I think most of you be younger, yes!
good thoughts to all,
Zinn
Nancy F wrote:
> Zinn,
> I have had sulfa allergy since 1950, almost died from not enougn air,
> swelling in face, etc. I have taken Plaq safely with no signs of allergic
> reaction for years. I think the sulphites in the Plaq are different enough
> that they don't harm us.
> O, and I know that my sulfa allergy is still active. In 2000 I had a
> reactin to Lasix, a diuretic related to sulfa.
> Plaq is an important tool and really helps many symptoms of SjS.
> It's JMHO, but I would look at Plaq as worth trying at least.
> --
> Nancy F , SoCal, USA
> Christ, Chorus, Cats, Computers
>
> : I have seen the thread on this med, and I looked it up and it has
> : sulfites in it, I am very reactive to sulfa so doubt I can take it,
> : Thanks,
> : Zinn
> :
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