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Other Platelet Disorders

I think its time to go back to the rhema

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14 years 3 months ago #16320 by tigereyes
I think its time to go back to the rhema was created by tigereyes
Well I havent seen my rhema in almost a year. She didnt want to see me until after the baby was born. I was feeling really good. Well I now have the wonderful rash on my cheeks and nose and the joint pain is starting agagin. Now I have shooting pain into my hands. I know I really should make an appt but I was hoping all this would go away. My hema keeps pushing me to make the appt so I really should. Just not much in the mood to be poked and proded all over again.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 months ago #16329 by Sandi
Replied by Sandi on topic Re: I think its time to go back to the rhema
Jen - I can't believe she didn't want to see you during the pregnancy! What's up with that? Women can have severe flares during pregnancy.

Yes, girl, go - for the sake of the baby. (If you don't, I will come and find you).

How is Aaden?
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14 years 3 months ago #16361 by tigereyes
Replied by tigereyes on topic Re: I think its time to go back to the rhema
Hes doing great. Getting big. We go tomorrow for shots. he will be 12 weeks already and is close to 16lbs.

I know I really need to go back I was just hoping that I was better--yeah I know good wishing right?
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 3 months ago #16367 by Sandi
Replied by Sandi on topic Re: I think its time to go back to the rhema
Jen:

Lupus is life-long. There are remissions, but most people have to stay on the meds to keep the remission. It's not like ITP in that regard. I understand that you went off because of the pregnancy, but you should get back on them now. Things will only get worse if you don't.

Promise me you'll make the appointment?
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14 years 3 months ago #16435 by tigereyes
Replied by tigereyes on topic Re: I think its time to go back to the rhema
I promise. I just really wanted to avoid them. I hate the way the plaqunil makes me feel.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 3 months ago #16443 by Sandi
Replied by Sandi on topic Re: I think its time to go back to the rhema
But if you don't take it, you're going to hate the way Lupus feels even more.

Did you call?
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14 years 2 months ago #16786 by tigereyes
Replied by tigereyes on topic Re: I think its time to go back to the rhema
I called. I really dont want to go but think I should. Ive got this pain in my hip now and its really bothersome. Ugh joint pain the joys of autoimmune disorders.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 2 months ago #16800 by Sandi
Replied by Sandi on topic Re: I think its time to go back to the rhema
When is the appointment? Good job!

Aaden is adorable! Love those cheeks!
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14 years 2 months ago #16857 by tigereyes
Replied by tigereyes on topic Re: I think its time to go back to the rhema
July 21st. SHe only sees pt once a week and that was the first available appt.

Thanks Sandy, he loves the camera. He laughed for the first time yesterday. Hes getting so big 16lbs and 25in. He looks way older then he is.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
14 years 2 months ago #16859 by
Replied by on topic Re: I think its time to go back to the rhema
Jen your Aaden is darling - he looks so bright eyed and those cheeks of his are great! Know you are enjoying the heck out of him!

Sorry you are having problems - take care!
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14 years 2 months ago #17317 by tigereyes
Replied by tigereyes on topic Re: I think its time to go back to the rhema
Got a call a from the dr all my blood tests are normal aside from my sed rate being elevated and high white count. Shes thinking some sort of infection.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 2 months ago #17324 by Sandi
Replied by Sandi on topic Re: I think its time to go back to the rhema
Well that's good news! Are you back on Plaquenil?
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14 years 2 months ago #17338 by tigereyes
Replied by tigereyes on topic Re: I think its time to go back to the rhema
no just the imuran. She wants to go from here. She will retest in 6 mo unless something comes up and if at that time anything changes she will then start me on plaqunil.
Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 1 month ago #17363 by Sandi
Replied by Sandi on topic Re: I think its time to go back to the rhema
Ok, keep up the monitoring!
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