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Home > Archive > Lupus Support > December 2004 > HEY EVERYONE. . .Long Time No Post!
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HEY EVERYONE. . .Long Time No Post!
|
|
|
| Hi Everyone,
I haven't posted in awhile, due to bad flare. . . I am better now (I
think)after having to increase my prednisone for awhile again. . . cutting
down again now (9mg), hopefully "The Blood" will co-operate as I do this. .
.. but I still have my butterfly rash. . . this is the first time I have
actually had the rash over my nose and cheeks. . . I don't see my GP till
the middle of Dec. and dont want to have to if I might be able to try some
things first. . . any ideas of what I might be able to try for the redness
and dryness would be so welcome right now. . . . I have been in a flare for
the past 3 month and it seems to be getting a bit better at this point. . .
with the exception of this rediculous rash. . . all info, experience with
this or comments are more than welcome at this point. . . Hope all are
having a pain/symptom free day! (if it is really possible for any of us! !
!)
Thanks for any ideas or advice you can give me!~HUGS~Aimee
'Be who you are and say what you feel, because those who mind don't
matter, and those who matter don't mind' - Dr. Suess-:¦:--Dream as if you'll
live forever; Live as if you'll die today. - James Dean
-:¦:- * ~HUGS~Aim~
| |
|
| Aimee wrote:
> Hi Everyone,
> I haven't posted in awhile, due to bad flare. . . I am better now (I
> think)after having to increase my prednisone for awhile again. . . cutting
> down again now (9mg), hopefully "The Blood" will co-operate as I do this. .
> . but I still have my butterfly rash. . . this is the first time I have
> actually had the rash over my nose and cheeks. . . I don't see my GP till
> the middle of Dec. and dont want to have to if I might be able to try some
> things first. . . any ideas of what I might be able to try for the redness
> and dryness would be so welcome right now. . . . I have been in a flare for
> the past 3 month and it seems to be getting a bit better at this point. . .
> with the exception of this rediculous rash. . . all info, experience with
> this or comments are more than welcome at this point. . . Hope all are
> having a pain/symptom free day! (if it is really possible for any of us! !
> !)
>
> Thanks for any ideas or advice you can give me!~HUGS~Aimee
Hi Aimee,
It's good to hear that your flare seems better now.
Have a look here and make lists of what they use, then ask your doctor.
http://tinyurl.com/4lv8e
Hugs
J
| |
|
| Thanks so much Janners,
.. . . I can't belive some of the pics there I have this same rash on my
face. . .over cheeks, nose and even my forehead. . . I also have it accross
my chest and down my arms. . .this will be the first time my Dr. gets to see
this rash. .. I have had this once before but it was before I was even DX
with SLE. . . with the Holidays comming I soooo want to see it go away. . .I
have some ideas now for my Dr (GP) when I see him on Wed. I thought I was
doing better with my flare. . .but now I am NOT so sure. . . I do see a
little YELLOW in my eyes the past few days. . .which (for me ) usually means
that there is some "Hemolysis" going on. . .which is part of my AIHA ~Auto
Immune Hemolytic Anemia. . .but I also feel that my Fibro is acting up as
well as the RA the past few weeks. . . and the past 2 days I have been
dealing with allot of HEAD conjestion too. . . I haven't had my flu shot yet
this year. . .but with everything I have been dealing with lately I wonder
if I should even get the darn thing. . . I don't want to have to deal with
any more. . .for sure. . . I know I am glad I can get back here again. . .
it has been a long few months NOT being able to configure my news groups. .
..I changed ISP's and am now hooked up to "Broadband" . . .but for the
longest time I couldn't figure it out. . .I think I got it now. . . but I am
still @ a loss how to find our group on the web. . .the only place I know
how to get to you guys is here thru Outlook. . . .but I think I have it so
NOW I can read everyones helpful info again. . .I hope evryone is doing
well. . . I haven't had allot of time to "Catch up" with all the Posts as of
yet. . .but I am going to try in the next few days. . . Thanks again for
your help. . . ~HUGS~Aimee
~~~~~~~~~~~~~~~~~~~~~~~~~~
'Be who you are and say what you feel, because those who mind don't matter,
and those who matter don't mind' - Dr. Suess
-:¦:-
-Dream as if you'll live forever; Live as if you'll die today. - James Dean
-:¦:- * ~HUGS~Aim~
"J" <totallyf...@emailaddress.com> wrote in message
news:41B97476.3D30E867@execulink.com...
> Aimee wrote:
>
>
> Hi Aimee,
> It's good to hear that your flare seems better now.
> Have a look here and make lists of what they use, then ask your doctor.
> http://tinyurl.com/4lv8e
> Hugs
> J
>
| |
|
| Hi Aimee,
It is good to hear from you again, even though your news isn't good. I am
sorry to hear that you have been ill for so long. I really don't have
anything to suggest that might help the rash. I do hope you get it cleared
up. I have never had it on my face. That must be hard. Maybe a dermatologist
can help you with that.
BJ-Sk. Canada
"Aimee" <furlon@verizon.net> wrote in message
news:Sdeud.2561$sU4.442@trndny01...
> Hi Everyone,
> I haven't posted in awhile, due to bad flare. . . I am better now (I
> think)after having to increase my prednisone for awhile again. . . cutting
> down again now (9mg), hopefully "The Blood" will co-operate as I do this.
..
> . but I still have my butterfly rash. . . this is the first time I have
> actually had the rash over my nose and cheeks. . . I don't see my GP till
> the middle of Dec. and dont want to have to if I might be able to try some
> things first. . . any ideas of what I might be able to try for the redness
> and dryness would be so welcome right now. . . . I have been in a flare
for
> the past 3 month and it seems to be getting a bit better at this point. .
..
> with the exception of this rediculous rash. . . all info, experience with
> this or comments are more than welcome at this point. . . Hope all are
> having a pain/symptom free day! (if it is really possible for any of us! !
> !)
>
>
> Thanks for any ideas or advice you can give me!~HUGS~Aimee
>
>
> 'Be who you are and say what you feel, because those who mind don't
> matter, and those who matter don't mind' - Dr. Suess-:¦:--Dream as if
you'll
> live forever; Live as if you'll die today. - James Dean
> -:¦:- * ~HUGS~Aim~
>
>
>
>
>
>
| |
| Shelagh 2004-12-16, 9:24 am |
|
<snip>"Aimee" wrote in message but I am
still @ a loss how to find our group on the web. . .the only place I know
how to get to you guys is here thru Outlook. . </snip>
Hi Aimee
This link will take you to the online alt.support.lupus newsgroup at google
where you can join or login ONLINE:
http://groups-beta.google.com/group/alt.support.lupus
hugs from Shelagh
| |
|
| In article <0Rfvd.1830$ag6.1704@trndny07>, Aimee <furlon@verizon.net>
wrote
>Thanks so much Janners,
>
>. . . I can't belive some of the pics there I have this same rash on my
>face. . .over cheeks, nose and even my forehead. . . I also have it accross
>my chest and down my arms. . .this will be the first time my Dr. gets to see
>this rash. .. I have had this once before but it was before I was even DX
>with SLE. . . with the Holidays comming I soooo want to see it go away. . .I
>have some ideas now for my Dr (GP) when I see him on Wed.
If it vanishes before then (it can happen!), get a Polaroid camera for
when it comes back.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| Andy
YOu are so right about the photos, thank God for the first time in
years I had my rash while in the rhumey's office. I was just about to
take photos but it decided to hang around long enogh for them to see,
now it can go, thank you.
Nicole C.- Nic
| |
| Shane Furlon 2004-12-16, 7:11 pm |
| Thanks Shelagh,
I got it. . .checked it out and even subscribed thru there so I don't loose
everyone again. . . sometimes Outlook doesn't seem to post my messeges too!
Thanks Again~
--
'Be who you are and say what you feel, because those who mind don't matter,
and those who matter don't mind' - Dr. Suess
-:¦:-
:¦:-Dream as if you'll live forever; Live as if you'll die today. -
James Dean
-:¦:- ~HUGS~Aim~
> Hi Aimee
> This link will take you to the online alt.support.lupus newsgroup at
> google where you can join or login ONLINE:
> http://groups-beta.google.com/group/alt.support.lupus
> hugs from Shelagh
>
| |
| Aishae 2004-12-16, 7:11 pm |
| Hi Bj,
I am glad to be back here let me tell you. . .alwasy such great ideas and
advive here. . .No I am sorry the news isn't better either , my friend. . .
I did post already above but in case you missed it cause I just got the name
thing fixed< computer illiterate @ times> but I told everyone that I went to
see the Dr. (GP) yesterday
<SNIP>
He didn't like the rash. . .or the yellowing going on in my eyes. . .or the
fact the
we both agree that the Plaquanil isn't working . . . actually said "it has
had almost 3 yrs to work if it was going to" so we decided I would need a
new Rheumy cause we both also agreed that we don't know what my current
Rheumy does for me. . . cause he sure doesn't listen to me and it is MY body
.. . .so I told Doc that I am too young @34 to live with that Dr. for the
rest of my life taking care of my Lupus. . .so he will try to figure out who
he wants me to see next for a Rheumy when I see him next month. . . so we
took away the Plaquanil, added methotrexate (2.5mg 1X/week) added B12
(again) along w/ folic acid (again) ordered a bone scan (Jan 6th) and upped
my Prednisone to 40mg again. . . but the nurse called today to tell me my
Riticulit count was very high. . . I am not sure about what that means. . .
its been awhile since my blood has acted up . . .I know my c3 was low the
last bloodwork. . . but I am forgetting what it means when my Riticulit
count goes up. . . but I know it's not a good thing. . .so here we go again.
.. .Bj may know. . . mmmm??? let me know if you read this BJ . .. Please. .
..so There it is. . . I knew before I even saw him yesterday. . .this has
been a long few months and I have been sleeping earlier again and just not
up to alot again. . .even did ALL Christmas shopping online again this year.
.. well everyone. . .you have had to listen to me ramble on long enough.
..Hope everyone is feeling OK and I will try to post again soon. . .
Thanks for listening. . . You are the best group ever!
~HUGS~Aim
I hope you might be able to refresh my mind. . .lol. . . what it means when
the riticulit is High. . . I am totally drawing a blank. . .I just remember
IT IS NOT A GOOD THING. . . lol. . .Thanks for listening!
--
'Be who you are and say what you feel, because those who mind don't matter,
and those who matter don't mind' - Dr. Suess
-:¦:-
:¦:-Dream as if you'll live forever; Live as if you'll die today. -
James Dean
-:¦:- ~HUGS~Aim~
"BJ" <Babs@sk.nojunk.ca> wrote in message
news:10rramvikumoo9f@corp.supernews.com...
> Hi Aimee,
> It is good to hear from you again, even though your news isn't good. I am
> sorry to hear that you have been ill for so long. I really don't have
> anything to suggest that might help the rash. I do hope you get it cleared
> up. I have never had it on my face. That must be hard. Maybe a
> dermatologist
> can help you with that.
> BJ-Sk. Canada
> "Aimee" <furlon@verizon.net> wrote in message
> news:Sdeud.2561$sU4.442@trndny01...
> .
> for
> .
> you'll
>
>
| |
| Aishae 2004-12-16, 7:11 pm |
| Boy. . . I am glad mine didnt decide to go away. . . and I was right. . .THE
Doc DID NOT like the rash @ all. . . so now we will try different meds. . .
.. .Back to square1. . . my life story for the past 3 yrs. . . and just in
time for the Holidays too. . .Yippee. . . lol
--
'Be who you are and say what you feel, because those who mind don't matter,
and those who matter don't mind' - Dr. Suess
-:¦:-
:¦:-Dream as if you'll live forever; Live as if you'll die today. -
James Dean
-:¦:- ~HUGS~Aim~
"N" <nrclifton@sbcglobal.net> wrote in message
news:1103034956.915585.192110@f14g2000cwb.googlegroups.com...
> Andy
>
> YOu are so right about the photos, thank God for the first time in
> years I had my rash while in the rhumey's office. I was just about to
> take photos but it decided to hang around long enogh for them to see,
> now it can go, thank you.
>
> Nicole C.- Nic
>
| |
| Shelagh 2004-12-16, 10:08 pm |
| no problem ! :-P
~shelagh
"Shane Furlon" wrote in message
> Thanks Shelagh,
> I got it. . .checked it out and even subscribed thru there so I don't
> loose everyone again. . . sometimes Outlook doesn't seem to post my
> messeges too! Thanks Again~
| |
|
| Hi Aimee,
I am here. I just haven't been posting much. Overwhelmed by Christmas and
building fatigue. Your high reticulocyte count indicates that the red blood
cells are being destoyed in high numbers. That happens in hemolytic anemia
which, if I remember right, is a problem you already know is present in your
case. That could also explain the yellowing in your eyes. I am glad that you
have been switched to methotrexate. I can't see that Plaquinil would be a
strong enough drug. I have to take Imuran to keep my counts up. I know that
nobody wants to take Prednisone, but an increase in that should really help.
It will take a while for the methotrexate to kick in. In the meantime,
things should improve on the pred. I hope you can find a good rheumy. Some
things are too complicated for a GP. Let's both try not to stress over
Christmas. Easier said than done, right? If you have more info on your past
blood work, post about it. I will check this thread to see if you do. Take
care and get as much rest as you can.
BJ-Sk. Canada
"Aishae" <furlon@verizon.net> wrote in message
news:GZowd.2968$JA4.2786@trndny09...
> Hi Bj,
> I am glad to be back here let me tell you. . .alwasy such great ideas and
> advive here. . .No I am sorry the news isn't better either , my friend. .
..
> I did post already above but in case you missed it cause I just got the
name
> thing fixed< computer illiterate @ times> but I told everyone that I went
to
> see the Dr. (GP) yesterday
> <SNIP>
> He didn't like the rash. . .or the yellowing going on in my eyes. . .or
the
> fact the
> we both agree that the Plaquanil isn't working . . . actually said "it has
> had almost 3 yrs to work if it was going to" so we decided I would need a
> new Rheumy cause we both also agreed that we don't know what my current
> Rheumy does for me. . . cause he sure doesn't listen to me and it is MY
body
> . . .so I told Doc that I am too young @34 to live with that Dr. for the
> rest of my life taking care of my Lupus. . .so he will try to figure out
who
> he wants me to see next for a Rheumy when I see him next month. . . so we
> took away the Plaquanil, added methotrexate (2.5mg 1X/week) added B12
> (again) along w/ folic acid (again) ordered a bone scan (Jan 6th) and
upped
> my Prednisone to 40mg again. . . but the nurse called today to tell me my
> Riticulit count was very high. . . I am not sure about what that means. .
..
> its been awhile since my blood has acted up . . .I know my c3 was low the
> last bloodwork. . . but I am forgetting what it means when my Riticulit
> count goes up. . . but I know it's not a good thing. . .so here we go
again.
> . .Bj may know. . . mmmm??? let me know if you read this BJ . .. Please. .
> .so There it is. . . I knew before I even saw him yesterday. . .this has
> been a long few months and I have been sleeping earlier again and just not
> up to alot again. . .even did ALL Christmas shopping online again this
year.
> . well everyone. . .you have had to listen to me ramble on long enough.
> .Hope everyone is feeling OK and I will try to post again soon. . .
> Thanks for listening. . . You are the best group ever!
> ~HUGS~Aim
> I hope you might be able to refresh my mind. . .lol. . . what it means
when
> the riticulit is High. . . I am totally drawing a blank. . .I just
remember
> IT IS NOT A GOOD THING. . . lol. . .Thanks for listening!
> --
> 'Be who you are and say what you feel, because those who mind don't
matter,
> and those who matter don't mind' - Dr. Suess
> -:¦:-
> :¦:-Dream as if you'll live forever; Live as if you'll die
today. -
> James Dean
> -:¦:- ~HUGS~Aim~
>
> "BJ" <Babs@sk.nojunk.ca> wrote in message
> news:10rramvikumoo9f@corp.supernews.com...
am[vbcol=seagreen]
cleared[vbcol=seagreen]
this.[vbcol=seagreen]
have[vbcol=seagreen]
till[vbcol=seagreen]
..[vbcol=seagreen]
with[vbcol=seagreen]
us![vbcol=seagreen]
>
>
| |
| Aishae 2004-12-19, 7:07 am |
| Hi again Bj,
Yes, I thought I remembered thats what a high reticulocyte count meant. .
..its been awhile since my blood has acted up. . . The Doc told me the last
tome I saw him my C3 was a bit low as well. . . so I expect I will hear from
him first thing monday. . .I guess I will be off to see my Hemyotoligist
sometime soon. . . I am not sure, as I havent gotten the results of the CBC
yet but it is nothing for me to have a Red count of about 4. . . as you know
that is quite low. . .there was a time after being given blood, I actually
dropped that in 1/2 as I was rejecting the blood I had been given. . . of
course they know now, they need to WARM the blood as they are giving it to
me. . .lol. . . so we know that at least now. . .I will hear from the Doc (I
am sure) on Mon. . . and I can give you better #'s. . .Ya know. . .somehow,
before I went to my appt. on Wed. I already knew The Blood was acting up. .
.. it is a bummer with Christmas right around the corner and all.....I am
trying to relax a bit, but it IS very difficult when they raise my Pred to
40mg. . . and I have never taken the Methotrexate , but I think the combo of
the 2 drugs is a bit strange. . . not sure how to explain the feeling. . .
and can't tell which drug is making me feel what. . .lol. . . guess I can
best explain it, as , I kind of feel like Jello. . . well I will check back
soon, and when I get the rest of the blood results I will post them. .
..Thanks for your help Bj. . .I guess I just got a bit comfortable with The
blood problem "taking a nap" (as I call it) and now it is awake again so I
guess I need to get back on the ball, and head it off. . all my hope is , is
that we can stop the destruction before needing another transfusion. . . I
am keeping my fingers crossed. . . Hope you are having a stress - free day.
.. .Relax and enjoy the season. . .LOL ~ That's what everyone is telling me.
.. .lol. . .So I am trying! ! ! only 6 days to go. . .so it's almost
impossible. . . but I will try. . .Talk to you soon. . ~HUGS~Aimee
--
'Be who you are and say what you feel, because those who mind don't matter,
and those who matter don't mind' - Dr. Suess
-:¦:-
:¦:-Dream as if you'll live forever; Live as if you'll die today. -
James Dean
-:¦:- ~HUGS~Aim~
"BJ" <Babs@sk.nojunk.ca> wrote in message
news:10s8lr79v8acl91@corp.supernews.com...
> Hi Aimee,
> I am here. I just haven't been posting much. Overwhelmed by Christmas and
> building fatigue. Your high reticulocyte count indicates that the red
> blood
> cells are being destoyed in high numbers. That happens in hemolytic anemia
> which, if I remember right, is a problem you already know is present in
> your
> case. That could also explain the yellowing in your eyes. I am glad that
> you
> have been switched to methotrexate. I can't see that Plaquinil would be a
> strong enough drug. I have to take Imuran to keep my counts up. I know
> that
> nobody wants to take Prednisone, but an increase in that should really
> help.
> It will take a while for the methotrexate to kick in. In the meantime,
> things should improve on the pred. I hope you can find a good rheumy. Some
> things are too complicated for a GP. Let's both try not to stress over
> Christmas. Easier said than done, right? If you have more info on your
> past
> blood work, post about it. I will check this thread to see if you do. Take
> care and get as much rest as you can.
> BJ-Sk. Canada
> "Aishae" <furlon@verizon.net> wrote in message
> news:GZowd.2968$JA4.2786@trndny09...
> .
> name
> to
> the
> body
> who
> upped
> .
> again.
> year.
> when
> remember
> matter,
> today. -
> am
> cleared
> this.
> have
> till
> .
> with
> us!
>
>
| |
|
| Hi Aimee,
I am sorry that you are finding yourself in the midst of blood problems
again. I have become a bit blase' about mine too. I always pick up a copy of
my monthly blood work and check it myself. It is never normal, but it seems
always to be my "normal abnormals", if you know what I mean. It has been a
while since my blood has acted up too. It is no wonder you feel like jello.
It certainly could be the drug combo, but I would think that a very low RBC
might do that too. My RBC count is always low. My last blood test showed a
3.31 reading. I think the lab here in Saskatchewan may report the results
differently. Nobody has freaked about it, so I assume it isn't bad by our
standard. What does your lab report as being the normal range? Do let me
know when you get your CBC. I will be interested and concerned for you also.
Would you mind starting a new thread at that time? I have admitted this
before, so it is nothing new. I get lost when the threads become too long. I
often miss posts that way and fail to reply. I had to smile when you talked
about them warming the blood before transfusion. I am always cold, so I
would want it warmed based on that alone. <g>
I guess we should both work on relaxing and enjoying the season. So far my
attempts to do that have failed. I have this desire to make everything
perfect for my family. I consider baking all of their favorites as part of
my gift to them. I want the house to sparkle too. Should look into cloning.
I could get things done in half the time. )
Take care and report when you hear from the doctor.
Regards,
BJ-Sk. Canada
"Aishae" <furlon@verizon.net> wrote in message
news:dhexd.3300$152.475@trndny01...
> Hi again Bj,
> Yes, I thought I remembered thats what a high reticulocyte count meant. .
> .its been awhile since my blood has acted up. . . The Doc told me the
last
> tome I saw him my C3 was a bit low as well. . . so I expect I will hear
from
> him first thing monday. . .I guess I will be off to see my Hemyotoligist
> sometime soon. . . I am not sure, as I havent gotten the results of the
CBC
> yet but it is nothing for me to have a Red count of about 4. . . as you
know
> that is quite low. . .there was a time after being given blood, I actually
> dropped that in 1/2 as I was rejecting the blood I had been given. . . of
> course they know now, they need to WARM the blood as they are giving it to
> me. . .lol. . . so we know that at least now. . .I will hear from the Doc
(I
> am sure) on Mon. . . and I can give you better #'s. . .Ya know. .
..somehow,
> before I went to my appt. on Wed. I already knew The Blood was acting up.
..
> . it is a bummer with Christmas right around the corner and all.....I am
> trying to relax a bit, but it IS very difficult when they raise my Pred to
> 40mg. . . and I have never taken the Methotrexate , but I think the combo
of
> the 2 drugs is a bit strange. . . not sure how to explain the feeling. . .
> and can't tell which drug is making me feel what. . .lol. . . guess I can
> best explain it, as , I kind of feel like Jello. . . well I will check
back
> soon, and when I get the rest of the blood results I will post them. .
> .Thanks for your help Bj. . .I guess I just got a bit comfortable with The
> blood problem "taking a nap" (as I call it) and now it is awake again so I
> guess I need to get back on the ball, and head it off. . all my hope is ,
is
> that we can stop the destruction before needing another transfusion. . . I
> am keeping my fingers crossed. . . Hope you are having a stress - free
day.
> . .Relax and enjoy the season. . .LOL ~ That's what everyone is telling
me.
> . .lol. . .So I am trying! ! ! only 6 days to go. . .so it's almost
> impossible. . . but I will try. . .Talk to you soon. . ~HUGS~Aimee
>
> --
> 'Be who you are and say what you feel, because those who mind don't
matter,
> and those who matter don't mind' - Dr. Suess
> -:¦:-
> :¦:-Dream as if you'll live forever; Live as if you'll die
today. -
> James Dean
> -:¦:- ~HUGS~Aim~
>
> "BJ" <Babs@sk.nojunk.ca> wrote in message
> news:10s8lr79v8acl91@corp.supernews.com...
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