juliannesmom wrote:

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

I agree with you Norma. It seems childish and immature. I don't think it is needed on a discussion group like this. :S

Norma, I agree, especially having seen a few(!) times over the years when things have gotten heated. I don't see the option for polling, but I bet a poll would say let's disable that feature.

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.

Sorry to hear they have dropped again, i'll be praying they go up for him next time he has a count done.

So how come this topic got posted twice?

I noticed there's another post that I replied to that did the same thing.

So how come this topic got posted twice?

I noticed there's another post that I replied to that did the same thing.

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

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.

There ya go...I gave you some Karma...'course, you could give me some too

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.

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?!]

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

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.

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.

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

Tim hardly had any symptoms from the Rituxan...but he didn't respond to it either. It is still possible he will get a response in the future though.

VERY SCARY about the girl who bonked her head. What if it had been Caitlin?! OMGosh! I would freak out! I'm sure you deal with that all the time though.

I hope, as with all our kids, that you find the right meds for Caitlin. I never thought Tim would be refractory. I know his hemonc never did. He still has trouble believing it.

We will either be back on the Promacta (if Tim agrees), or probably try the Imuran/Cyclosporin/Cellcept cocktail for Tim. Splenectomy...I just can't get it out of my head that its permanent, it has lasting negative affects (immune suppression, higher risk of developing cancers, the extreme bleed risk after surgery, etc). I don't know. It just seems so radical and last ditch to me...not something you do cause you don't like your meds.

I'm sorry about Caitlin, too. Its so hard on them, and on us watching whats happening with no power to change it. I agree that its likely the initial phase of coming off the NPlate causing a problem with platet production right now. Maybe she will start making them and then pred will work again.

I am going to take Tim to his pediatrician. Interestingly, today when I came home for a nap I had a dream that his ped was talking to him. He's a real joker and very good with kids(and Tim really like him).In the dream the ped came out and started joking with Tim and saying, 'Boy,why aren't you taking your medicine?" So I asked Tim, "do you feel like a kid or like we treat you like a kid with your meds" and he said no. I told him about the dream and he said, "I've been really wanting to go see Dr. Gunter lately. Lets make an appointment." So, maybe his ped can talk some sense into him. He's the kind of ped that makes paper ties and wears them to work,lol. He's an excellent Doctor too. I told my boys we've given him great training with MS, Congenital Heart Disease, Asthma, and Chronic Refractory ITP.

Anyway, I often have these sorts of dreams that help me make tough decisions. Seems to be God's major way of guiding me directionally.

Thanks, I hope they continue to rise too, i want to start the new year on a good note.

Ann...Caitlin's count went up after stopping Nplate. She started a pulse of steroid immediately after stopping to avoid crashing so quickly from stopping Nplate and her count one week afterwards was 135. Then we did nothing for almost 3 weeks and she had her IVIG last week. She's been off Nplate for a little over 6 weeks now.

Sandi...thanks for that! We will definitely watch for serum sickness. It was just a tough week emotionally for me last week feeling helpless when she was throwing up so much.

I PM'd Joan about this, and she replied back that the in box is now set up, but I can't remember how she told me to access it. I'll print out her PM tomorrow and check it out.

I PM'd Joan about this, and she replied back that the in box is now set up, but I can't remember how she told me to access it. I'll print out her PM tomorrow and check it out.

I PM'd Joan about this, and she replied back that the in box is now set up, but I can't remember how she told me to access it. I'll print out her PM tomorrow and check it out.

Hi Jenuk, This has been planned for a while but it happened all of a sudden. I was surprised. I was only the first person to post on the Social Chat site here. I hope people will like this format and find it easy to use. I am getting used to it. Have a good week-end, Debbie

I think its always been in the back of my hema mind that I have something else going on. My counts were down to 20 today without a drop in the prednisone. So there is definiatly something going on. They both agree it is some kind of connective tissue disease. It does kind of frustate me that for the past 3 years Ive kinda been pushed along. Today the dr had 2 med students with me, they seemed very eager to ask questions and ITP and all my other issues. One of them looked my age and had so many questions. So I guess Ill know more in 2 weeks after all my labs come back and they give me some options for treatment. Sadly they both feel that rituxian is no longer a treatment option for me. The rhema does think it may harder to dx everything since the rituxan may start working.