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Home > Archive > Lupus Support > September 2006 > I'm a newbe
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| acchelle@bigpond.com 2006-09-03, 8:27 am |
| Hi everyone! I'm reaching out for some advice on the different
medications prescribed for Lupus. I've been taking plaquenil - but it
has not helped, so the specialist prescribed me Imuran / Azathioprine
tablets... but unfortunately I have reacted with an incredibly bad
rash, that is as itchy as hell, and nothing seems to soothe it!! I
hate this disease - it is so debilatating, and I don't know of anyone
else with this disease, that I can talk to. Has anybody else had a
similar experience to me, and if so, what medication were you put on
that has helped??? Any advice is very welcome.
cheers Chelle
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| Sherry 2006-09-03, 4:27 pm |
| Chelle,
Just wanted to welcome you to the group. Weekends are always quiet here.
So it might be Monday or Tuesday before you get any answer to your
questions.
How long were you on the plaquenil? Plaquenil takes time to build up in
your system....and it is sometimes a month or two before you start to notice
any "improvements". The improvement can and usually is gradual and not
always "noticed" right away.
I do not have any experience with Imuran so can not answer. Have you
contacted your doctor about the reaction you have had to it?
This is the place to be to "talk" to others that understand what you are
going through and to get the anwsers to any questions you might have or will
have. If someone doesn't know the answer there is always someone who will
search and search and try to find the answer. When you need a shoulder to
cry on or someone to just listen or have info that you want to
share.....Here is the place that you can find advice, care, hugs and even
humor!
Once again, Welcome to the group!
Hugs,
Sherry
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| Hi Chelle,
I did not think there were many choices to treat lupus with.
Hope you can be put on one to help you soon.
I am soon to go on a med when my eyes are examined. There is much to
sort out IMO, for me I do not know what symptoms are from what
condition, even the Rheumy said I have alot of immune dis-eases and he
asked me to be patient while he figures it out, but is going for lupus
first.
I know I am not of much help, I share in the confusion and I know I am
not a dependable poster here.  I mostly lurk.
well wishes,
Zinn
acchelle@bigpond.com wrote:
> Hi everyone! I'm reaching out for some advice on the different
> medications prescribed for Lupus. I've been taking plaquenil - but it
> has not helped, so the specialist prescribed me Imuran / Azathioprine
> tablets... but unfortunately I have reacted with an incredibly bad
> rash, that is as itchy as hell, and nothing seems to soothe it!! I
> hate this disease - it is so debilatating, and I don't know of anyone
> else with this disease, that I can talk to. Has anybody else had a
> similar experience to me, and if so, what medication were you put on
> that has helped??? Any advice is very welcome.
> cheers Chelle
| |
| Chelle 2006-09-04, 2:25 am |
| Hey thanks for the welcome. Yes, i know that Plaquenil takes time to
build up in the system, and my rheumy wanted me to continue taking it
with the new medication that made me flare in an increible nasty rash.
I can't just make an appointment to see the specialist, so will have to
go to my G.P, however, I live at Beerwah... the home of the croc
hunter, and I, aswell, as the town just isn't functioning at the
moment. When, the shock wears off, and things return to somewhat,
normal, I will then go to the doctor then - I can't see the rash
disappearing anytime soon. Thanks for the welcome once again - Life is
good.
cheers Chelle
Sherry wrote:
> Chelle,
> Just wanted to welcome you to the group. Weekends are always quiet here.
> So it might be Monday or Tuesday before you get any answer to your
> questions.
>
> How long were you on the plaquenil? Plaquenil takes time to build up in
> your system....and it is sometimes a month or two before you start to notice
> any "improvements". The improvement can and usually is gradual and not
> always "noticed" right away.
>
> I do not have any experience with Imuran so can not answer. Have you
> contacted your doctor about the reaction you have had to it?
>
> This is the place to be to "talk" to others that understand what you are
> going through and to get the anwsers to any questions you might have or will
> have. If someone doesn't know the answer there is always someone who will
> search and search and try to find the answer. When you need a shoulder to
> cry on or someone to just listen or have info that you want to
> share.....Here is the place that you can find advice, care, hugs and even
> humor!
>
> Once again, Welcome to the group!
>
> Hugs,
> Sherry
| |
|
| Chelle wrote:
> Hey thanks for the welcome. Yes, i know that Plaquenil takes time to
> build up in the system, and my rheumy wanted me to continue taking it
> with the new medication that made me flare in an increible nasty rash.
> I can't just make an appointment to see the specialist, so will have to
> go to my G.P, however, I live at Beerwah... the home of the croc
> hunter, and I, aswell, as the town just isn't functioning at the
> moment. When, the shock wears off, and things return to somewhat,
> normal, I will then go to the doctor then - I can't see the rash
> disappearing anytime soon. Thanks for the welcome once again - Life is
> good.
oh, I heard about him. Very sad accident.
J
| |
|
| acchelle@bigpond.com wrote:
> Hi everyone! I'm reaching out for some advice on the different
> medications prescribed for Lupus. I've been taking plaquenil - but it
> has not helped, so the specialist prescribed me Imuran / Azathioprine
> tablets... but unfortunately I have reacted with an incredibly bad
> rash, that is as itchy as hell, and nothing seems to soothe it!! I
> hate this disease - it is so debilatating, and I don't know of anyone
> else with this disease, that I can talk to. Has anybody else had a
> similar experience to me, and if so, what medication were you put on
> that has helped??? Any advice is very welcome.
> cheers Chelle
on the www. it says "Azathioprine occasionally causes a skin rash. when
used in high doses. .."
So maybe the dose can (or should) be lowered?
BJ was on it, for quite a few years, if I recall correctly, I don't recall
her mentioning a rash, but her liver function had to be monitored, as
well.
Best wishes, Chelle.
J
| |
| Maggie 2006-09-06, 4:28 pm |
| Welcome Chelle!
I am on Imuran and was on it for a few years prior to trying
Methotrexate. I never had a rash, however. They always asked if I had
one on my legs though. I guess the legs are prone to getting little
red spots while taking it. If your doctor wants you to keep taking it,
the rash may be a symptom known to ease up after a bit, so hang in
there for now if you can. On the other hand, it just may not be for
you. If you've never tried Methotrexate, that may be something to
discuss with your doctor. There's another one, but I can't recall the
name though. Mair was on it. I think it starts with a "C." Maybe she
will see this.
Nonetheless, there's other meds they can try you on if the Imuran
doesn't get you to feeling better, hon. Let us know how your doctor's
appt goes. And, again, welcome to the group! We're glad to have you.
:D
Hugs,
Maggie
| |
| Maggie 2006-09-06, 4:28 pm |
|
Maggie wrote:
<snip>
> There's another one, but I can't recall the
> name though. Mair was on it. I think it starts with a "C." Maybe she
> will see this.
<snip>
Cellcept!
........................I think.
| |
| Beverley 2006-09-06, 9:29 pm |
| HI Chelle,
Welcome! I'm useless to answer your question because I take nothing more
than aspirin. I'm not sure where everyone is right now (we've been quiet
lately) but I'm sure someone can help you, somehow.
It is such a shame what happened to Steve Irwin. I'm sure being a small town
you all knew him to some extent. He was a wonderful conservationist. His
death has definitely been felt around the world!
Bev
<acchelle@bigpond.com> wrote in message
news:1157280847.816882.142690@i42g2000cwa.googlegroups.com...
> Hi everyone! I'm reaching out for some advice on the different
> medications prescribed for Lupus. I've been taking plaquenil - but it
> has not helped, so the specialist prescribed me Imuran / Azathioprine
> tablets... but unfortunately I have reacted with an incredibly bad
> rash, that is as itchy as hell, and nothing seems to soothe it!! I
> hate this disease - it is so debilatating, and I don't know of anyone
> else with this disease, that I can talk to. Has anybody else had a
> similar experience to me, and if so, what medication were you put on
> that has helped??? Any advice is very welcome.
> cheers Chelle
>
| |
| Chelle 2006-09-07, 8:25 am |
| Hi everyone,
Thanks to you all for your advice on my medication problem - it's so
nice to finally know that I am not alone, yet, I wish that nobody had
this disease. My rash is still prevalent - nothing on my legs, but all
over my lower abdomen... so bad in some places that it looks like welt
marks that you get after being stung by a blue bottle. Never the less,
I know It's not going to be there forever....(GULP!!, I hope). And,
yes, as for Steve, it is very sad, and yes, Beerwah is a small tight
knit, friendly community - so his death has shocked us all immensley.
We would see Terri and the kids around town, more so than Steve - but
they were just everyday people around here. I spoke to Terri at the
shops only 3 weeks ago, and my daughter has played with Bindi, while I
chatted with Terri at the doctors surgery... no screaming fans here...
so, I am quietly amused, and also thrilled that he touched so many
lives throughout the world, as he was a truly brilliant man. But, to
us locals, he was just Steve-o. Anyway's thanks for all of your
advice, and I will keep you all posted with my progress,
Cheers
Chelle
Beverley wrote:[vbcol=seagreen]
> HI Chelle,
> Welcome! I'm useless to answer your question because I take nothing more
> than aspirin. I'm not sure where everyone is right now (we've been quiet
> lately) but I'm sure someone can help you, somehow.
> It is such a shame what happened to Steve Irwin. I'm sure being a small town
> you all knew him to some extent. He was a wonderful conservationist. His
> death has definitely been felt around the world!
> Bev
>
>
> <acchelle@bigpond.com> wrote in message
> news:1157280847.816882.142690@i42g2000cwa.googlegroups.com...
| |
| sunshine 2006-09-08, 9:28 pm |
| Hello I'm also a newbe and trying to get used to how to view messages.
I've had lupus since 98. I'm on plaqaniul and imuran. I've had no
problems with them. It is a debilitating disease both physically and
emotionaly.It really is bad also when your spouse or partner
Doesn'tHelp with anything. I know you really need a good support
system. Because sometimes People don't understand that you are ill
because we don't always look ill.Also most people don't know about
lupus to realize the way we feel.What i have come tolearn is listen to
your body and if it's telling you your tired, the worse thins for us to
do is not listen. we will pay the price! I have 2 children and I still
do all the work in the house. their 9&12. For the past 2 weeks and
since the beging of school I've been over doing it. Well guess where i
spent lbor day? IN BED HAVING ANXIETY ATTACT AND BODY ACHES TERRIBLT
BAD. I knew better than to keep going when I was exhuasted but I
ignored the signs. My children, especilly the9yr old was worried
because I don't do that. now 5 days later there are dises to be done,
laundry to be folded and so on but I'm not going to stress this
weekend. their father is going to take them. Boy thier gettin off easy
because today they were going to start learning how to clean house. I
just might kep most of it for them exept dishes that would not be a
pretty picture by sunday. So my advice is don,t over do it,get plenty
of rest and have a supprt group.Also the most drug that rhumies use is
prednise. It is a wicked drug with lots of side effects but is also the
best one to make you feel better.Let me know how things are going .
there is alot of support here. sunshine
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| Sherry 2006-09-09, 8:28 am |
| Sunshine,
Welcome to the group! I didn't bother to slow down and listen to my body
when my son was growing up either...and yes, we pay the price for it in the
end.
Hugs,
Sherry
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