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22 Jan 2010 22:53
  • tamar
  • tamar
I see all posts have a "karma meter", or is it all posters? I'm being lazy and don't want to try to find the answer myself, so can someone spoon-feed me an explanation? :S
Category: Social Chat
22 Jan 2010 23:27
  • Sandi
  • Sandi
I'm learning as I go, but it looks to be a popularity rating. I smited you (thumbs down) and you got a negative number (-1). Then I gave you thumbs up and you went back to zero.

Not sure what the purpose is. I'll ask about that.
Category: Social Chat
22 Jan 2010 23:28
  • Sandi
  • Sandi
Okay. I applauded you and gave you some karma. Now you know how to get some.
Category: Social Chat
22 Jan 2010 23:56
  • Stangie11
  • Stangie11
Does anyone have feedback about trying Rituxan after a splenectomy, what effects it had on the body, and whether it was successful? Would a low dose prednisone be better? Does danazol work? Sorry for so many questions. :)
23 Jan 2010 00:04
  • Stangie11
  • Stangie11
I like to pray, so I will add Timothy to my list :) I was wondering if you wouldn't mind answering a few questions for me. I am Angie and I had a splenectomy 8 years ago. It sent the ITP in remission for 8 years and now it is back. Steroids work, but I am questions Rituxan. In your opinion, is Rituxan safe after a splenectomy and do you think a low dose steroid is okay long-term. I realize you don't have ITP, but since you have two family members with it, you are like an expert in my book. Has your Timothy or your mom tried danazol? Do your family members have any other autoimmune disorders? Thank you for your time.
23 Jan 2010 00:15
  • Stangie11
  • Stangie11
Sorry to butt in, but I was curious about what other autoimmune disorders you have going on. I have myasthenia gravis, ITP, and tendencies of lupus and MS, but have not been diagnosed with those. It sounds like you deal with quite a bit and are more knowledgable than me on all this. I have realized quick that we kind of have to learn up on this stuff by ourselves because the combination of disorders throws doctors for a loop. And every person responds differently to different meds. Hope you don't mind. Thanks
Category: Lupus
23 Jan 2010 00:36
  • Melinda
  • Melinda's Avatar
Somebody please click on the Thumbs Up by Tamar's Karma because as I was reading what Sandi wrote I put my cursor up there on the red and accidently clicked it and it took her Karma away and now I can't click on her green one for 6 hours and I'll be sleeping then.

Sorry Tamar.

[Does the Karma seem a bit childish?!]
Category: Social Chat
23 Jan 2010 04:18
  • lucidawn
  • lucidawn
Hi Angie,
All I can share is our experience. Timothy's grandma has been splenectomised for 46 years and about two years ago received Rituxan for her Chronic ITP. She has had no problems with it and is in remission. Not everyone goes into remission through rituxan, but it can happen. She also used steroids her whole life, and so far does not seem to have long term negative affects. There are side effects and bone loss issues if you take it every day for a long time, but short burst to bring up counts is not the same thing. I personally don't like steroids, if we can avoid them, but we've used them alot. Tim has some significant tooth decay, and i think its from the steroids. We have not tried danazol. The hemonc skipped right over that one. We go on the Imuran/Cyclosporin/Cellcept next. We also actually have three family members with Chronic ITP. Rare, and funny that they say its not hereditary. I'm surprised we haven't been approached for a study.

As far as autoimmune diseases, I have hypothyroidism caused by autoimmune disease (hoshimoto's thyroiditis). That's all for me. Tim's dad has type 1 diabetes that he aquired at age 29, which is very, very rare. He is insulin dependent. This was more than likely caused by an autoimmune distruction of his pancreas. Tim's dad's family also has Lupus in the family. My mom is also hypothyroid. Oh, and my other son has Multiple Sclerosis-also an autoimmune disease.

I hope you find the treatment you need. What are your counts like? Are you refractory to treatments? Oh, one other thing. My personal opinion is that Tim's grandma responded so well to the Rituxan partly because of her splenectomy. She only had one infusion and responded immediately. Tim's uncle (professor of hematology at eastern carolina) agrees this may be the case. In fact the hemonc says that being splenectomised sometimes makes refractory itp more treatable, if its not curative.

Hope that helps.
23 Jan 2010 04:25
  • lucidawn
  • lucidawn
There ya go...I gave you some Karma...'course, you could give me some too :cheer:
Category: Social Chat
23 Jan 2010 04:39
  • Ann
  • Ann
Karma is supposed to be given when somebody is particularly helpful or as a mark to say congratulations or something. On another board I'm on people also give it for birthdays but I could see it given here say, when someone has a baby. Whether the whole giving of karma and particularly the ability to take it away, is a good thing or not is debateable.
Category: Social Chat
23 Jan 2010 05:58
  • juliannesmom
  • juliannesmom
Okay, sorry to start off probably getting bad karma, but I think the whole karma thing is a bit stupid and inappropriate to this type site.
Norma
Category: Social Chat
23 Jan 2010 05:58
  • CindyL
  • CindyL
So how come this topic got posted twice? ;)

I noticed there's another post that I replied to that did the same thing.
Category: Social Chat
23 Jan 2010 05:58
  • CindyL
  • CindyL
So how come this topic got posted twice? ;)

I noticed there's another post that I replied to that did the same thing.
Category: Social Chat
23 Jan 2010 06:43
  • Angel85
  • Angel85
Sorry to hear they have dropped again, i'll be praying they go up for him next time he has a count done.
23 Jan 2010 07:28
  • Angel85
  • Angel85
Hi
Hi

I don't mind the new forum too much, just wish they could transfer all the old threads over so that we don't lose all that information that is already there.
Category: Social Chat
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