I'm in Houston also. work downtown and live in the Meyerland area.

I think 75% of the dutch population where glued to their tv during the whole Sven Kramer drama.. I'll admit.. I had to cry.. If it's the medicine or if I'm just an emotional weirdo but it made me cry..

I never really watched the Olympics but this year I watched almost everything!! I thought it was great!!

Sandie, any news on Steve?

It would be too un-Canadian of me not to watch the Olympics right here in my own country! Yes, it would have been nice to be there in person, but I saw so much more here at home. I wasn't totally happy with the coverage, tho, too much chatter and not enough sports. Canada broke 2 records with these games; the most Gold medals won by any home country and I think the most medals of any games for us. But I will admit, I'm glad to have regular tv back!

Congrats to the US for their 36 medals!

I was very disappointed not to see the US men's hockey team say thank you for their Silver medals. No offense meant here, guys! Just an observation. When the Women got their medals, just about everyone of them said thank you.

Chaos
I went to the dentist 6 months ago had 6 teeth removed & some additional work done to shave down my jaw so that a partial would fit correctly. Lots of blood lots of work.
My count was about 35k. Tea Bags helped with any bleeding i thought lasted to long.
Which only happened once and i had panicked after about 10 mins. Bit down on a black tea bag and it clotted in about 3 min.

I didnt even run it past my hemo. Once your body gets used to having a lowered count the platelets seem to work pretty well.

Hi Angel, It is not as big as the drops I was having each day for the past two weeks, it was going down by 150 to 250 overnight. I have started back on the Eltrombopag/Promacta in the past couple of days.

I have a hospital trial visit tomorrow, as I am back to weekly visits, due the drama of the past couple of weeks. I think my count has dropped again, as I have 2 blood blisters and petichiae in my mouth, and I am sooooo tired and achey.

The only thing i am annoyed with is that you have to sign in all the time. I have adapted really well to the new forum, it is quite simple and easy to use i think anyway.

Wow, thats a big drop from 119 to 41, hope they don't go much lower once you are back on the medication

It doesn't change anything, but i think Cindy found that bit of news interesting and wanted to share it with us, in case some people weren't aware, no harm in that is there??

I hope they do stay up for you once you start to taper the dose, my counts always go back down once i taper. I am now down to 5mg and i know they are low because i am getting more unexplained bruising and more petechiae this week. Although we do want them to be lower then 30 this week, so i can start the Nplate this friday.

I don't think you were neccessarily whinging, but if you want to whinge, here is the best place to do it cause we understand what your going through and people were just suggesting what you could do to try to change your situation for the better. It is hard to deal with at first, but you just have to try not to let it control your life. I still do all the same things i always have, i just know when my platelets are low, i need to be a bit more careful with myself.

I know your friends don't understand, but just some friendly advise as well, don't push them away just because they don't understand or don't appear to be sympathetic. My friends are my time away from all my medical issues where i can just be myself and not talk and worry about my medical problems. I love spending time with my friends because When i am with them, I forget I even have all these medical problems and for a while i can pretend i don't have any problems.

You need to realise that while Yes ITP is a serious condition, you don't have to stop living and enjoying your life because of it. It is not a death sentence. Most of us here on this board have had it for quite some time and we are all still here, life is too short to not enjoy yourself and have fun. Worrying and stressing all the time is not going to do you any good.

I have never had a problem with dental procedures, and my platelets are rarely over 40K. I've never had a root canal though--but last year I did have to have new crown and a filling. Maybe both my dentist and hematologist are more relaxed than yours! They've never spoken to each other. Once an oral surgeon removed a cyst in my mouth, and though my platelets were at their regularly low level (probably in the 20K range), he reported very little bleeding. If you don't bleed a lot, I suspect you shouldn't have a problem either.

(I can't take WinRho since I have no spleen. I control my ITP with relatively low doses of prednisone--9 mg/day right now, for example.) Karen R

UPDATE #2:

Went to the hematologist today. Considering CBC from last week showed a count of 24 he put me on 100 mg of prednisone. I have to get bloodwork done twice this week and then f/u with him next Monday. He did discuss other treatment options, but hopefully this works. I see from other posts on here and from the hematologist that the real trick is whether or not my counts stay up once I start to wean my dose.

One thing at a time...today was very overwhelming! I do appreciate all the information and support here!

And if Yasser Arafat really did have ITP it doesn't change a thing for me or you or anyone else

I have been going to a hema for 1.5 years, attempting to hammer out a course of treatment to get me to the dentist. In the beginning, it seemed as if it would be far more complicated (mainly because I thought my wisdom teeth needed to be extracted - which, thankfully, is not the case). As it turns out, I only need a couple root canals and several fillings. No biggie, right? Well...
My first treatment with WinRHo (I wrote a rant about it on the old forum) was horrible. But my platelets went from 58000 - 172000. The hema just wanted to be certain it would raise my counts (I had never before been treated with anything, just keeping an eye on bruising for the last 17 years). So, I booked an appointment with the dentist - he had a look, cleaned my bottom teeth (it had been 5 years since going to the dentist - lots of cleaning required!!), and scheduled me for root canal appointments.
So, last week, I saw the hema again, he announced he was going on holidays, we agreed I would have another winRHo treatment and then 2 days before my dentist appointment, I would have a platelet count done, and as long as I was over 50000, I could go ahead. Because he was going away, however, he left an order that I should be treated if my platelets were low. Today was the day to check my platelets. 45000. Are you kidding me? 45000?? So, they treated me with winRHo, and because the hema is gone & I can't see another one, I can't get blood results to the dentist, the dentist won't do any work without the go-ahead from the Dr. and I continue to endure the toothache that I have had for almost 6 full months (and in the end, the treatment today was unnecessary, because even if my counts are good, I already had to cancel my dentist appt. and probably can't schedule another one for 3-4 weeks...). Sigh. I'm frustrated trying to orchestrate this all myself without enough information, or help from anyone. All anyone seems to be able to do is tell me what cannot happen.
Can anyone speak to dental work + ITP - ? I asked the hema for a recommendation for a dentist, but all he did was throw up his hands and feign idiocy. (I'm also beginning to wonder about this hema anyways - he will not discuss treatment options with me, or ever really fill me in on what the drugs are/what they do/what they are made of/side effects/possible outcomes/etc. etc. - he seems like more of a blood guy than an "I'm-employed-in-a-helping-profession-helping-people" kinda dude. ).
I'm wondering about other people's experiences - does your hema speak to your dentist? How does WinRHO work for other people?

The last time I had such a nightmare treatment, the kind people here really helped me out. Thank you all so much for reading this. Sometimes it just helps to tell your story, right?!

Joya- I'll be emailing you!
To everyone else- I appreciate the (mostly) kind words. I think maybe I came off sounding a bit like a whiner, which I am not. Everyone has problems, medical or otherwise, besides ITP, and I'm no different. This is not the only medical condition I am dealing with. In addition, some people handle crisis better than others. I am merely trying to connect with others in an attempt to deal. I think we can all agree that ITP has changed us in one way or another.

I think a whole lot of people have been glued to their TV's the past few weeks--notice the drop-off in traffic here? The paper says it broke records for Olympic viewership!

Bravo, Canada! And US!

Has anyone been following the Olympics in Vancouver? Canada rocks!!

really tamar, is the "fresh boarder" the only thing that you find annoying with this new layout, page, link, whatever you want to call it. I don't do well with change, so I'm having a hard time even opening up this page and reading or posting anything. I think I might go into hidding after I finish this email. So if you guys don't hear from me, it has nothing to do with my ITP status it has more to do with this bubbly new look. see you all later, maybe I'll invite you all to fb, just so I don't have to come back here right away.

Also, not sure I'd assume even if he had ITP, that's what he died of. The symptoms he had do not sound like any symptom an ITP patient would experience. He might have had an infection and this causes ITP, not that he had chronic ITP. When you hear reports o blood coming out of everywhere, from all over, generally that is not what patients with chronic ITP experience.

Not sluggish...that's my usual stomach symptoms, because I have gastroparesis. Now I'm going more often and they are different then my usual. They are yellow floaters. Yuk! They also reek, as does my flatulence. Could be gallbladder, could be pancreatic cancer, could be celiac. I've been tested or celiac, but who knows, I could develop it, couldn't I?

I don't have too much pain, although I've had so much pain in my life, I'm not sure I'd notice what gallbladder pain is supposed to be, or that it's supposed to be the worse pain someone experiences.

I do have bloating and gassy pain, so maybe that's what it's supposed to be. Maybe when people complain about gallbladder pain, they don't already have lupus pain, so they describe it as the worse pain. That's not consoling to me though, because it makes me depressed to think I'm living with pain worse then someone else's worse pain. Sounds totally stupid, but that's about how I feel today, but I guess if it's gallbladder and I manage the pain, I guess that's a good thing. I certainly don't want it to be liver or pancreas problems.

Hi Michelle,

Its lovely to hear from you - I've missed you! I hated the site too, and I still don't think it is as handy as the old one, but I am getting used to it. The thing that most annoys me too is that it doesn't keep you signed in, and then unless you sign out, it keeps you logged in pointlessly for hours - I don't get it. Why can't it just remember you like the old one???

Poor Danica, I don't know how either of you are coping with the whole thing. 27 goes at IVIG - honestly I really don't know how you cope. And Danica must get the same variation in counts with IVIG that is annoying me so much with Dougie at the moment - I find the constant up and down nearly as stressful as permanent downs. I need to stop complaining and feeling down about Dougie's count which is only intermittently low.......I think I need to shut up! He's got a sore throat today, so maybe thats whats causing this latest lot of symptoms,

Anyway, I really hope that the Decadron works for Danica without too many side effects and QUICKLY. If it doesn't (fingers and everything else crossed that it does though), I've been reading up on rituxan and whilst I think it looks a bit scary, it does seem to work in producing remissions in a number of cases. My sister has a friend who is a doctor in Spain and he says that is their preferred treatment.

Good luck anyway

Ali

Hi everyone - sorry for not keeping in touch, but I really do not like this site very much. The old one was so much easier. I just stayed logged on to the old one, but this one, I have to log in every time and it drives me crazy.

Pauline - I hpe that Caitlin feels better and that the Rituxan does the trick for her.

Ali- sorry to hear that Dougie is not feeling very well, and not dealing very well with this either.

Donna - I have also been following your posts - even tough I do not respond (sometimes I don't log in, and because of that, I can't leave a response.

Danica had IVIg #27 last Thursday. I have been waiting for one of the nurses from Pediatric Outpatients to call. She was going to talk to our hemo today about starting Danica on the Decadron. Perhaps she did not see him today, or maybe she sent me an email at work, instead of at home. I will check tomorrow.

Does anyone have any experience with the Decadron? I was wondering how long we would try it. IF there is no improvement after the first round, would he try another one in another month? If so, how long do you think that he will continue to try it before giving up?

Oh, I should not be so negative. Perhaps the Decadron WILL work, and she will keep a healthy count. If it does not work, then we will try the Rituxan next.

Michelle (mom to Danica)

Kim,

I understand that it is not the end of the world and that I'm not dying.. But at the moment ITP is making my life impossible.. I just started a new study Lifestyle and Health.. It's a sport studie so I sport 4 days a week.. Next to that I'm a professional dancer and atm I can't do anything.. And even if my counts are ok I don't feel confidend enough to sport becouse in between my appointments at the hospital my counts could drop.. And I don't always know when my counts are low.. I'm in a riskfull invorment every day.. And atm ITP is making me depressed.. Apart from the fact that I'm getting fatter every day, got sits and acne all over my body from the medication.. I just feel like my body is not mine anymore..

Joya