Thanks Ali. It did snow, and as it usually does in Charlotte, it froze solid, lol. We got home this morning. We did a cbc this morning instead of last night. As I was expecting his count is much higher than usual. Are you ready for this???? He is at 72k today. Its probably where he usually peaks post his second dose, we just don't usually check the third day. Well, it would be nice if he got a partial remission, but I take it as it comes. Friday we will see what it is (I expect maybe 20k or so), and we'll find out when he starts the Nplate. I think we only have one other kid at our office on it.

How is Dougie doing? Is he any less symptomatic? Keep your chin up

Well, I hope that it snowed after all of that!

The nplate sounds like a good idea - I really hope that it works for him, and doesn't make him tired like the other stuff did.

Lots of luck, Ali

I agree, in the mean time, it would be helpful if people would limit their signatures to 5 lines or less. If they have 20 lines, we're only getting 3 replies per page.

Questions:

We are working to fix some of the reported problems and changes. I need feed back:

Time: I never paid attention to the posted times - did they automatically post according to your own time zones?

E-mail alerts: Do you still have to check the box to not receive e-mail alerts?

Reply: Anyone still having problems when they hit 'reply'?

Wow - that's some big news!

Update:

I stand corrected. According to newer research, IVIg stops destruction by interacting with the receptors on the macrophages (white cells) that destroy platelets. That means that it affects the antiplatelet antibodies, not the platelets themselves.

Kind of interesting...The attached article says that platelets can reproduce in circulation.

www.sciencedaily.com/releases/2010/01/100126133352.htm

As long as we're compiling a wish list for the new forum, I'd like to see the option of listing more than 5 replies before having to turn the page to see more.

If it isn't possible to provide the option, how about letting us see at least 10 replies before having to turn the page?

Yes, you have the right place for this questions.

The time zone (and correct time) issue will be resolved in a few weeks. We'll have to put the date and military time questions on the list to address.

Thanks for mentioning this. Anyone else have input?

Joan

I'd ask about the Coombs.

Yes, many of us have had bone marrow biopsies. Usually they are not necessary to diagnose ITP, but if you have multiple issues, it wouldn't be a bad idea.

That would be nice.

I've got my time zone checked for my time zone - but that doesn't seem to be right either. A few times I've posted and it has the time posted hours before what it is in my time zone.

I'd prefer "normal" time instead of military time.



Just looked - it is 8am and it shows I posted this at 15:00

I was wondering if, instead of having the time of the posting put up, if we could go back to having the date of the posting.
Example: Posted Jan 29 2010 instead of 10hrs 6 mins ago. I get very confused with that.

Good luck with the knee surgery, Caroline! I wish you a speedy recovery.

Have fun visiting your sister in the Azores! I hope you have a good time.

That's a great count, Erica! Hope they continue to climb.

I got diabetes (tablet controlled) 3 years ago after taking a 5 day course of steroids, so now my haemo wont give me steroids. I am surviving on 6 bottles of ivig every month.

Are there any other diabetics, and what medication do you take.

Ted

I would like to hear from anyone who has taken or is taking NPlate. I had my first dose of it Monday. Any information welcomed.

What is the Coombs test? I don't think that my doctor test me but I'm not sure. Have any of your doctors ever done bone marrow asperations? I haven't had one but I heard that sometimes they do them.

Have you ever been tested for Coombs antibodies? The answer to that could make a difference in the treatment decision.

Hope your surgery goes well. I had a full knee reconstruction when I was about 11 years old because my knees dislocate all the time and they are not in the position they should be in and I have been told eventually I will probally need a total knee replacement for both my knees.

I think thats why my doctor lowered it so fast. I would really like to be off the pred but I'm not to happy about the other options.

I agree, it is not something that is gonna be solved overnight, it is a long drawnout process and somedays you will feel like your finally on top of it and then the next day or next week, it all comes crashing down and u feel like your starting all over again. Hang in there and stay strong xox

I don't know if it would be considered normal, but mine dropped from 76 to 47 in a week while still on the same dose of pred. I am currently on 40mg a day when that happened. I'd advise you to not stay on the pred for too long, particulary with the higher doses, the side effects are just not worth it.

That's wonderful news Erica, happy to hear that

My doctor has been excellent with the anemia and since my platelets had dropped in the past he told me that he had always felt I had ITP but my count had never been low enough to treat. I ask him if I should just continue on prednisone for now and he has concerns about the side effects but like you said I feel that the other options ae a bit extreme right now. I'm only 24 and with the anemia my immune system seems to be a little weak already and while they say the risks of serious infection isn't likely I would definately like to keep my spleen! Do you know if its normal to drop so much in a week while still on meds?

I hope so! I'll be semi-bionic!
And I see my profile does have my signature with information.

Sorry to hear that, Caroline. I hope this new surgery does the trick!

Good news, Erica!

Many people have been frustrated, believe me. It can take time to find the right treatment or combination of treatments.

Rituxan can take weeks to work, so hang in there for now. You might get a response from that - there is always that hope.

It is happening too fast. Wow - he's in a rush! Most would slow down the Prednisone taper at this point...in fact, maybe bump it up a bit. You responded very well to it, but the quick drop down was too fast.

Splenectomy is usually a treatment saved for a later date, certainly not two weeks after diagnosis. As for Rituxan, that is also a fast jump considering he didn't really give Prednisone much time.

Have you been happy with his care for the anemia? If you hadn't been seeing him prior to ITP, I'd suggest a second opinion. 76 is still a very good count.

I keep forgetting to check the new forums here so here I am now finally remembering to. In case you probably don't remember (lol), I had a partial knee replacement of my right knee in Sept. 08. Last fall, my left knee started bothering me so I had a series of Supartz shots which did nothing and by mid-DEcember, my knee was killing me. It went downhill ver quickly. Tuesday, I had a 1 year check in for the partial knee with my orthopedist and we/he looked at my left knee and after discussion, I am having a total knee replacement in that knee, scheduled for April 21. I'm waiting until then because I'll be visiting my sister who lives in the Azores for a week in March and need to get ready after that for the surgery (and time to recuperate from my air travel---I hate flying and this time, for the first time, I'll be getting medication to get through the 4 hour flight (and one home) without being scared--am flying alone, with my sister meeting me at the airport and then my brother and SIL arriving a couple of hours later on a flight from Lisbon).

On an ITP note, I will probably be doing an autologous blood donation prior to my surgery. I see my hemo in March and see what platelet count he wants for me. LAst time he said 70, while ortho said 50, both managable generally for me. Can't remember if I set up my signature after asking about here which shows recent counts!

So now I'll try to remember to check in here more often.