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Erica - Subtypes

  • Sandi
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  • 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 9 months ago #10436 by Sandi
Erica - Subtypes was created by Sandi
You mentioned subtypes in another thread. I was actually looking at that a few years ago with Kim, Audi and me since we all had Lupus. Kim and I especially were comparing treatments and responses, and she didn't respond to treatments like I did (mainly steroids). That sort of blew my theory out of the water. From what I've seen, most people here with Lupus seem to respond fairly well to Rituxan. Kim didn't though, but she also had more severe Lupus than most of us did....maybe that made a difference.

I've also noticed that those of us with Lupus tend to have more bad reactions to Rituxan that result in not being able to use it again.
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14 years 9 months ago #10445 by eklein
Replied by eklein on topic Re: Erica - Subtypes
Thanks. I thought Kim had a bad reaction to Rituxan when she was really sick? Was there an opportunity to determine it didn't help despite the reaction? Maybe I remember it wrong. I wonder sometimes if lupus too isn't a collection of things and not a root cause thing of its own. It manifests so differently.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
  • Topic Author
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  • 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 9 months ago #10460 by Sandi
Replied by Sandi on topic Re: Erica - Subtypes
Kim had a reaction to Rituxan before the transplant. She had it during the infusion if I recall, and it was serious enough that they didn't want her to have it again. They had to give it to her post-transplant though because of another illness that she acquired that was more serious than the reaction.

Lupus problems depend a lot on which antibodies you have. I know there is much more to it though and what stinks are the many, many symptoms. You name it, it's a symptom.
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14 years 9 months ago #10461 by eklein
Replied by eklein on topic Re: Erica - Subtypes
What's tricky is figuring out when it ISN'T a lupus symptom - like when I was withdrawing (right word?) from pred - I had that muscle pain for months and I was sure it was lupus and it wasn't.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
  • Topic Author
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 9 months ago #10463 by Sandi
Replied by Sandi on topic Re: Erica - Subtypes
Yeah, that's one of my symptoms that is there every day. I hate it. Six years of it.

I came home from work yesterday and found a blood blister on my arm. I hadn't been pinched or bumped or anything. So what the heck was that? Oddly, ITP was not my concern, I was worried that it was Lupus-related. I ended up thinking, oh well, if I don't get any more I won't worry about it. So far, no more have appeared.

But back to the subject, I don't think sub-types are even close to being identified. I haven't read anything about it other than the primary disorders that are most likely to acquire ITP. It was in an article that someone (maybe you or Tamar) posted about a year ago. I wish I had that one....it was great.
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