Here We Go Again

299 Views 3 Replies 4 Participants Last post by helloos, Jul 19, 2008

specialk16

Discussion Starter · Jul 7, 2008

Well it is has been a while since I really been on this site. Not that I didn't need you guys, I just felt like life was getting better for me. But of course all good things usually come to an end when you have LUPUS. I so hate this disease. I began having platelet issues again in January of this year, spent a night in the hospital getting IVIG. Was put back on prednisone for 5 months. Was finally weened off and had a return visit to the hematologist to find out that my platelets were back down again. I had stopped going to my rheumy because her office no longer takes my insurance, so I had ONLY been treated for my blood problems. My hematologist decided that I should be treated again with Rituxan and we scheduled that on June 20th, which was my birthday whoo hoo:worried:! At the same time my old rheumy had gotten word of the pending Rituxan and suggested I find a new rheumy in case I had any flare ups during the treatment. Well than God I found one because after my 2nd treatment I went into a total Lupus flare, swollen and stiff joints, fever, U.T.I infection,,, it was horrible. My rheumy was also let me know the the disease was progressively getting worse. He compared my test results from back in 2004/2005 to today's blood tests and they have gotten worse.

Soooo anyways I am back in the fight, kind of nervous with all the new findings. My Rituxan treatments haven't been all that great. They had to stop my 3rd one because I started convulsing and shaking, blood pressure shot up and accompanied a fever, and then to top it off they had to bring an oxygen tank and hook that up to my nose... fun fun fun..... NOT! I had NEVER experienced anything like this before. Anyways, I have my last treatment on Friday... I pray that it is smooth sailing.

Just wanted to vent a bit... please keep me in your prayers.... I am sooo over this disease..... summers are the worst! (have I been negative enough!

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Maia

· #2 · Jul 7, 2008

Welcome back... although of course I'm sorry your health problems have brought you back. It does sound like you've been through the mill this year and it's barely half over! Many here have reported great improvements after Rituxan so I hope that is the case for you. Some others have reported similar infusion experiences as you too - if you'd like to talk with other Rituxan users you can search through the forums for Rituxan and find a few other threads.

Take care & wishing you better health in the near future.

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lazylegs

· #3 · Jul 7, 2008

Hi Kasha,

So sorry to hear that your infusion didn't go well. That must have been very scary, especially since you haven't had prior problems. I hope the one on Friday goes much smoother.

It is so hard to tell when to redose. So far each time I have gone too long and the disease has progressed. Sounds like the same thing happened to you. The way I look at it though I had a long while where I felt fairly good. If I hadn't had the Rituxan I most likely would have progressed even further.

I hope the Rituxan starts working quickly and lasts as long as the last time.

Take care,
Lazylegs

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helloos

· #4 · Jul 19, 2008

Oh boy you sure have been through quite a lot ...... I hope by this day you are feeling quite better.

First of HAPPY HAPPY BELATED BIRTHDAY to you. I missed it.

Hopefully you got to celebrate sometime, if not, as soon as you get better, time to celebrate that birthday.

Hoping that you are feeling much better and continue to get better each day.

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