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Silentscream
03-06-2009, 12:26 PM
Anything at all...is there no damn hope at all?
Sorry for posting so much in the last week. Just things keep changing.
My daughters condition has worsened and she has difficulty taking deep breaths plus many other things, kidneys etc. Dr. today even with perfect blood work (I already shared you with all the results)anti DNA all of it. Said she is certain it is Lupus. I was hoping for a miracle, back to being an Atheist. I was hoping it would be a mild case, so much for that. Now I am just looking for hope. Is there no hope on the horizon? What an evil illness. I am full of hate and sadness.
my last post, I'm getting redundant.

mountaindreamer
03-06-2009, 01:02 PM
hi silent

DO NOT GIVE UP. your daughter might be in a bad flare, and they will probably be able to get her out of it. When they get her out of it, she will probably have some very good time, and maybe remission. Mine did for 10 years.

Tell her to ask her dr. about a Medrol injection. I had to get another yesterday, and already feel better. Not my choice for long term treatment, but at least now i can think and function.

You know i am here,
phyllis

Silentscream
03-06-2009, 04:02 PM
They are starting her on plaquenil tuesday.

Faith
03-06-2009, 05:08 PM
Hang in there. Please keep in mind Plaquenil takes 3-6 months to build up in the system. I have been very lucky so far. I have been on Plaquenil for almost 3 years and take Kenalog shots when in a flare. I would rather do this and then be on methotrexate. You had mentioned her kidneys, have they talked about Cellcept at all? Just curious.

God Bless,

Faith

TobyJug
03-07-2009, 05:12 AM
just wanted to give u a chin up.......

there is always hope.....

I always say the worse the bad times are the more we appreciate the good things in life..

Oluwa
03-07-2009, 11:57 PM
Hi Silent...

Yep, there is hope....if there wasn't, where would I, we be. My hopes can be as little as a better day tomorrow. We appreciate the things that most people take for granted.

There is no cure for Lupus...so we, I hope for small things.

I am blessed even when I feel I am not...

Know when your daughter starts dosing with the Plaquenil she may experience headaches and nausea...

What is happening with her kidneys...UTI, spilling protein, Lupus nephritis...have they prescribed anything else beside Plaquenil? Cellcept? Steroids?...

Don't give up, your daughter needs your strength...

Hugs.
Love,
Oluwa

Silentscream
03-08-2009, 05:22 AM
Thank you for the reply.
She has lower back pain she feels is kidney but all her tests are normal. I fear if she losing school she will become very depressed. She has fought the odds to even me in medical school.
So far just Plaquenil and a anti-inflammatory.




Hi Silent...

Yep, there is hope....if there wasn't, where would I, we be. My hopes can be as little as a better day tomorrow. We appreciate the things that most people take for granted.

There is no cure for Lupus...so we, I hope for small things.

I am blessed even when I feel I am not...

Know when your daughter starts dosing with the Plaquenil she may experience headaches and nausea...

What is happening with her kidneys...UTI, spilling protein, Lupus nephritis...have they prescribed anything else beside Plaquenil? Cellcept? Steroids?...

Don't give up, your daughter needs your strength...

Hugs.
Love,
Oluwa

Oluwa
03-08-2009, 06:41 AM
Hi Silent..you're welcome.

I failed to add to my prior post, the headaches and nausea will subside within a week or so when starting Plaquenil....

Please read this article on kidneys and Lupus...symptoms...follow the link. It contains 5 pages...

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=100&zoneid=17

Pass the information to your daughter....

Have you invited your daughter to join this forum too....she may find it a nice addition to her already loving support from you. Where there are people who are living with Lupus and all its symptoms. Might be an added comfort to see how many live full lives...how we cope, and hope...

We have several women who are obtaining degrees, graduating...from college, universities and high school....

Love,
Oluwa

rob
03-08-2009, 07:32 AM
Silentscream,

Plaquenil is well tolerated, and can be quite effective. Many people respond very well to the drug. It may take time, but this drug could very well turn things around for your daughter. Have hope.

Rob

Silentscream
03-08-2009, 09:11 AM
Silentscream,

Plaquenil is well tolerated, and can be quite effective. Many people respond very well to the drug. It may take time, but this drug could very well turn things around for your daughter. Have hope.

Rob

Thank you Rob, I needed that bit of hope

Silentscream
03-08-2009, 09:13 AM
Thank you for the info and link.
I have not told my daughter about this forum. Mostly because I have said things in here I would not want her to read. To be honest. I show a very positive and supportive front for her.


Hi Silent..you're welcome.

I failed to add to my prior post, the headaches and nausea will subside within a week or so when starting Plaquenil....

Please read this article on kidneys and Lupus...symptoms...follow the link. It contains 5 pages...

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=100&zoneid=17

Pass the information to your daughter....

Have you invited your daughter to join this forum too....she may find it a nice addition to her already loving support from you. Where there are people who are living with Lupus and all its symptoms. Might be an added comfort to see how many live full lives...how we cope, and hope...

We have several women who are obtaining degrees, graduating...from college, universities and high school....

Love,
Oluwa

AyahsClan
03-08-2009, 02:41 PM
Never lose hope. Hope is the one thing lupus cannot take away from us, we have to willingly give it up.

Love to you,

Ayah

Believe in tomorrow and appreciate today

sick n tired
03-08-2009, 09:49 PM
Silentscream...if you don't tell your daughter your sign on name then perhaps she might not know it is you...then you can tell her.
I did that last year. I posted many things and my heart as a mother about my, then 18 yr old daughter, Nadia...I didn't want her to get on at first, but one day when she was down and feeling alone, I had her read all the replies that Saysusie, Oluwa, Noodlemom, (my mind fog has taken over on some of the names of the wonderful people.) and very many others had to say and the prayers they were offering up for her...it lifted her spirits greatly.

mountaindreamer
03-09-2009, 07:14 AM
hi silent,

hope your daughter's weekend got better. I too was afraid that my kidney's were involved. First of all, lupus nephritis (lupus of the kidneys) is not painful....I experienced extreme pain in my left flank. My nephrologist ran all sorts of tests, and he decided that the lupus must be attacking the tissue around the kidney, because my kidney checked out fine.

This is so frustrating, i know, but I am afraid that our lives revolve around addressing the various symptoms, and they change on a regular basis.

You know that I wish the best for your daughter.....and you.

phyllis

rosebud
03-09-2009, 06:13 PM
I know it might not be a lot of help, but I was diagnosed with the first of my two autoimmune diseases when I was getting ready to go to college across the country. Despite my parents' hope, I went to school anyway (after three months of treatment). I got pretty sick during the time I was there and even had to come home for another semester of treatment. It was really a challenge, but I actually graduated in 4 years. It was largely due to people who essentially came out of nowhere during my time of need. It is undoubtedly hard not to be there when your daughter is struggling through these times, but I think you can pray that there are people who will be there to take care of her.

A lot of hope comes from perservering through the sticky parts. There will be a brighter side. My best hopes for her.

ashleybaby715
03-10-2009, 04:43 AM
hi there.
i just want to say that you need to have hope for your daughter.
trust me, i know what its like to be young and have lupus. [[because well, i do have lupus]]. and it helps when you have all the support you can get from everyone you know.
try to get her on plaquenil. thats what i take and so far it has worked really well for me.
i also take prednisone, methotrexate, folic acid, vitamin D and zantac [[so the pills dont mess up my stomach, i dont need anymore problems lol]]

it all depends on your daughters progression of the disease.
i also have trouble taking deep breaths, and really just breathing normally. at first it was because i had fluid around my lungs [[along with my heart]] but that fluid is gone now. so now they think that the lupus is attacking my lungs, so i recommend you sending your daughter to a pulmonologist [[lung doctor]] thats who i see, along with my rheumy, my nephrologist [[kindey doctor/urologist]], who your daughter should see if she hasnt already.

i know that was probably alot to take in, but i hope i helped :laugh:

tasha
03-12-2009, 04:27 PM
First of all, do not lose hope! Honestly, the prognosis for those of us with lupus these days is pretty darn good, so there really is no need to fret that much ;)

I have a kidney condiiton along with the lupus myself and I'm taking CellCept for it. I haven't been on it that long so I haven't noticed any change in the labs yet, but fortunately I have no loss in kidney functioning, nor do I have any pain or weird symptoms. Our bodies are strong, we just have to have faith that everything will be okay :)

ashleybaby715
03-13-2009, 05:54 PM
stay strong hun!

i know what your daughter is going through, first hand!
i have trouble taking deep breaths [[i get chest pains]] and i get really short of breath, really easy, like just walking up small flights up steps :( [[i go to a pulmonolgist, yet again this weds]]

but plaqunil [[whoops, my spelling is terrible!]] soo far has been really good for me!
i take 200mg.

and since being on that, along with prednisone and a few other drugs, i went from having a pretty life threatening case of lupus, to a not so bad one :D its definetly tollerable, yet frustrating with the fatigue and such.

but anyways, just stay strong and know that there is hope for you and your daughter!
and know you always have support on here!!!