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View Full Version : New to site, currently dealing with a flare-up



Beccaj
04-30-2011, 01:46 PM
Hello all! My name is Becca and I just found this site last night while researching a few drugs they are wanting to put me on. I was diagnosed with SLE in early 2006 during my first year of college (I was 18). Took them awhile to figure out exactly what was going on since I had so many different symptoms (kidney failure, seizures, anemia, thrombocytopoenia etc.). I fought hard and went into remission. I am now in my last year of college (hopefully graduating in May) and all hell broke loose in lat March. Put me in the hospital for 4 weeks. This time it attacked the kidneys and the blood mainly. I ended up having seizures in the hospital. My platelets keep fluctuating and my H&H keeps dropping so I keep needing to get blood and platelet transfusions as an outpatient. I am also doing Plasmapheresis three days a week and I have my last infusion of the chemotherapy drug Rituxan next week. Has anyone had experience with these treatments? I am really hoping that they will help me to bounce back. My kidneys are close to normal range now so it's the blood that they are focusing on. Any comments will be greatly appreciated, thank you!

lacey50
04-30-2011, 02:25 PM
Becca,
I have not had any experience with those treatments. I am so sorry that you have had to deal with it all. There may be others who have had the same treatments and will be able to share their experience with you. I do want to welcome you and let you know that the people here are great and give lots of support. Hang in there and lots of ((((((((HUGS))))))))))
Sue

Peridot20_Gem
04-30-2011, 03:16 PM
Hi Becca,
Welcome to WHL and nice to have you with us, i've also not had the drugs your taking but in due course someone will answer you.

I'm so sorry to hear what's you've been going through i also have SLE, two forms of seizure's and also anaemia and i'm on B12 Jabs besides folic acid tablets for life. With everything you've got going on i just hope your seizure's are'nt to bad because they're enough on their own besides everything else you've got going on.

~Hugs Terri ~ xxx

tgal
04-30-2011, 08:00 PM
Hello all! My name is Becca and I just found this site last night while researching a few drugs they are wanting to put me on. I was diagnosed with SLE in early 2006 during my first year of college (I was 18). Took them awhile to figure out exactly what was going on since I had so many different symptoms (kidney failure, seizures, anemia, thrombocytopoenia etc.). I fought hard and went into remission. I am now in my last year of college (hopefully graduating in May) and all hell broke loose in lat March. Put me in the hospital for 4 weeks. This time it attacked the kidneys and the blood mainly. I ended up having seizures in the hospital. My platelets keep fluctuating and my H&H keeps dropping so I keep needing to get blood and platelet transfusions as an outpatient. I am also doing Plasmapheresis three days a week and I have my last infusion of the chemotherapy drug Rituxan next week. Has anyone had experience with these treatments? I am really hoping that they will help me to bounce back. My kidneys are close to normal range now so it's the blood that they are focusing on. Any comments will be greatly appreciated, thank you!

Hi Becca! Welcome to WHL. I am so glad that you found us! Thankfully I haven't had any kidney issues but like you I have seizures and several of your others. I just started on oral Chemo now so I am not going to be of much help on that one. Some here (I think it is bunny) was considering Plasmapneresis but I am not sure if she started them or not. I will blame that on the brain fog!

I hope everything clears up for you soon and until then just know that we are here for you!

Linda From Australia
05-01-2011, 03:47 AM
It is good news that you fought hard and managed to go into remission for a few years. That is such wonderful news. What sort of things did you do that brought about the remission?

It is also pleasing that you are again starting to get back to normal after such a horrendous recent flare. Take care, hopefully you can enjoy the end of your studies very soon.

Beccaj
05-01-2011, 03:42 PM
Thank you everyone for the kind thoughts, I'm pretty excited to have found a place to go to vent when times get tough with my SLE! Linda, I honestly don't know what brought me into remission the first time. I was pretty healthy before I got sick and was training for a powerlifting competition. They told me that had I not been so healthy beforehand, things would have been much worse. Also, a positive attitude definitely helps when times get tough. Hang in there!

Peridot20_Gem
05-02-2011, 12:27 AM
Hi Becca,

Your welcome from all of us and it's nice when you have people close to you in the same situation, so vent away when you need to.

I bet you did some training for a power lifter, good one mate but sorry this came about to stop it.

Terri xxx