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Discussion Starter · #1 ·
Hi all,

As you may remember or I'll refresh. My daughter who has CNS Lupus affecting her brain is on Cyclophosamide.
She is on her 6th out of 7th treatment. The week prior she was starting to stumble and balance problems, I have even notice a tad of a issue finding words when she speaks and more joint pain and swelling and headaches. She saw Rhem. first before starting the meds, and they have upt her prednisone and want to see her in 2 weeks.

Now my question, I would have thought she would be allot better, it seem to me the cyclophosamide is just keeping her Lupus from being serious but not getting her into the remission that we had hoped. She has been through so much, what happens when chemo and steroids don't work? What are we to expect?
 

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Hi Samour,

Sorry to hear your daughter is not well. I hope that this treatment works for her soon. I would try to stay positive and hold on a little longer. I was told the cylo takes a while to work.

I to have Lupus affecting my brain. this affects my speech, balance, memory, walking, etc.

I was given cylophosphamide by IV every 2 weeks over the course of one year. Unfortunately this treatment did not help me either. The Drs were continually putting my prednisone to eventually I was taking 70mg orally and 1000mg IV every 2nd week. I finally had rituxan and this is working very well ( I had it just over 2 months ago)

In saying this I have made some great friends in hospital who have had great success wit this treatment. All of their symtoms have nearly gone and they are leading fairly normal lives.

Remember to stay positive and trust your doctors. This is a very difficult type of lupus to treat.

Best wishes to you and your daughter
Let me know how she goes whith the futher treatment.

Peta
 

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Discussion Starter · #3 ·
Thanks Peta,

She seemed to be doing well, and I was so worried that we are going to see her go through the same difficulties as July when she was definitely in serious shape. She was so sick from the Chemo yesterday, she looked so vulnerable. She is a real trouper and doesn't complain. I am trying really hard to be strong for her, it is so hard some days. I would do anything to trade places with her, it's so unfair for a young teenager to go through this.

Sharon
 
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