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  • Angel85
01 Feb 2010 17:53
Replied by Angel85 on topic Timothy new meds, admitted as well
alisonp wrote:

:) :) :)

Dougies count last week - 16
Dougie's count this week - 104

Can breathe a sigh of relief for now and enjoy a bit of worry free time!


Thats fantastic news to hear Dougie's platelets are 104, very happy for you, at least he can go out and enjoy himself without either of you worrying. Lets hope that they stay up that high!! :cheer:
  • liam12
01 Feb 2010 17:51
Replied by liam12 on topic liam is starting school
hi everyone,liam started school ,all went well,he did survive without me! He had a little blood nose this week,and has some petichia which he normally doesnt get,even when his platelet is under 10k he only has a tiny little bit,im not sure weather to take him for his blood tests to check levels and disrupt his school day,or just wait and see hiw he goes. Not knowing gets me so anxious and nervous. it would be great if they came up with a self testing kit for home use,this would relieve alot of anxiety for alot of us!!!! have a great day ,jenny.
  • youngjoan
01 Feb 2010 17:30
Replied by youngjoan on topic Platelets can reproduce in circulation?
I attended a session at ASH where this was presented and wrote a small article about it for the next issue of the platelet news. The platelet multiplication was a surprise to everyone. The researchers are continuing to determine how this happens, what stops it (some drugs), what doesn't interfere (ex. TPO), and how platelets seem to 'know' there are not many of them so they multiply more.
  • youngjoan
01 Feb 2010 17:21
Replied by youngjoan on topic Problems reported
There is no test forum or site. Would be nice, but not available.

  • alisonp
01 Feb 2010 16:09
Replied by alisonp on topic Timothy new meds, admitted as well
Hopefully so. Actually at the moment he is driving me mad - he is bouncing round the house like he is on blue smarties or something. Whatever has been making him exhausted for the last few weeks as disappeared along with the low platelet count and been replaced by a super ninja boy - his words not mine!

Ali :)
  • lucidawn
01 Feb 2010 16:01
Replied by lucidawn on topic Timothy new meds, admitted as well
I suppose its much the same as why they drop so fast. Tim can crash in hours...He can be at 100k today, and by tomorrow morning be at 1k. Its happened. Hopefully Dougie is on the mend.
  • alisonp
01 Feb 2010 15:39
Replied by alisonp on topic Timothy new meds, admitted as well
:unsure: Hey Donna, I'm not making the mistake of going down the "he's cured" route again!!!! But its nice for both him and us to have a period of not worrying about it - and in this case, it will be good for his poor teacher on the school trip too....

What I don't understand is how it can go up and down just like that? He was still knackered on Friday, and still had symptoms, but they had gone by yesterday. How can it vary sooooo very much in just a few days???? Its all very annoying, but I'm not complaining!

Here's hoping that it just happens to all the other kids on this board too.

  • Ann
01 Feb 2010 15:21
Replied by Ann on topic Colchicine treatment
I'm glad you've found something that works for you. Personally, it's not something I'm allowed to try because oddly, it's said to be too toxic. The most recent International guidelines say that the use of Colchicine is not justified. But I hope you have continued success with it.
  • jayner10
01 Feb 2010 15:02
Colchicine treatment was created by jayner10
Hi. I just wanted to let the ITP community know that the use of Colchicine has worked very well for me to control my chronic ITP. I have been suffering from ITP for 20 years now. I had my spleen removed 16 years ago, which did nothing for me, and have taken prednisone ( 125 mg to start then a slooowwww, gradual taper of 5 milligrams per week until my platelets drop to rock bottom again. ) This past 4 years I have only been free from taking prednisone for 11 days before my platelets crashed yet again and I had to begin my slow descent off of the drug from 125 mg. Weaning myself off of prednisone and responding to it generally takes a year for me. I HATE prednisone but have opted to take only this drug to control my ITP because the other drugs seem so toxic, with side effects that are still a bit too unknown for me to feel comfortable taking them. I have taken dexamethasone but that barely even bumped my platelets at all and then I crashed back down to the 1-3 thousand range, which is where I typically run. I take a maintenance dose of 5 milligrams daily to try and ward off the crashes in platelet counts, but this never holds me for very long. In fact, every year I ALWAYS have a platelet crash in the Fall, for some reason. I wish I could explain that, but cannot. Anyway, to get to the point, this November my platelets began to drop again and I had a count of 18. My doctor suggested I try Colchicine ( 1.8 mg ) along with 60 mg of prednisone ( low for me. I NEVER respond to prednisone when my counts are low unless it is at the 120 mg range or higher. And even then, it can take weeks for me to respond and my platelets come up. ) In 4 days my counts jumped from 18 to 252,000. I have NEVER had my platelets come up like this in 20 years. Amazingly, I am now taking 5 mg of prednisone daily with 1.2 mg of Colchicine and 2 months later I have never had a platelet count lower than 184. Usually I am in the 250 - 290 range. i know everybody is different and responds differently to the myriad of drugs now available for ITP treatment, but I would highly suggest discussing with your doctor the possibility of trying this treatment. The only side effects I have had from taking Colchicine are mild stomach discomfort when taking 1.8 mg ( 3 pills a day ) and a small amount of hair loss, which happens with prednisone and whenever my platelets are low. I do not know for how long I will respond like this to this drug combination, but after 20 years of riding the prednisone yo-yo rollercoaster, this seems like a dream come true. I just wanted to share this with everybody, even if just one other person might find this to help it will be worth it to share this suggestion. Good luck to everyone. I truly hope your platelets come up as quickly as mine have if you try this.

Jayne ( Finally, no more moon-face !!! )
  • tortie
01 Feb 2010 14:40
Replied by tortie on topic Platelets can reproduce in circulation?
I'm saving this one on my favorites!!!! I'm trying to hang on for new treatments and this one sounds promising to me.

  • Bunnie
01 Feb 2010 13:59
Replied by Bunnie on topic Problems reported
I'm forced to use IE 6.1 at work because of the corporate policies on updating the software on their time schedule. I have overall site problems with it. Mostly in the display shifting or wrapping. For example, the main menu selection wraps to half a page rather than going completely across the top and therefore the menu selection don't work where they overlap.

If I shift to Firefox, the site seems to work fine. I experimented with Safari at work, but didn't spend enough time to give good feedback.

I'm using IE 8 at home as my primary browser, I've had a few issues with the replies, but not in the last couple of days.

Having a IT background as a career, I know that testing web apps is tough because of all the browsers, and PC setups. Does the new web site have a "test" region or are they moving from the developers PC directly to "production"? Depending on the answer, I might suggest a stronger testing lab environment and test plan.
  • gsh
01 Feb 2010 13:01
Replied by gsh on topic Problems reported
Oops, does the same when I hit "edit". I meant to say "left" (not right) and couldn't fix it because of the shifting.
  • gsh
01 Feb 2010 13:00
Replied by gsh on topic Problems reported
My screen still shifts so half is gone to the right when I hit "reply" or "reply topic" but not "quick reply". I guess this is product of using explorer6 so perhaps no need to address this but more FYI.
  • tacmom
01 Feb 2010 12:59
Replied by tacmom on topic Update on Danica
I'm sorry to hear Danica's nosebleeds are getting worse...that was always a definite sign that Caitlin's count was around 10 or lower. We've been lucky that all she has had for the past two weeks really is bruising and some petechaie, but not enough to really make me want to take her in for a count.

Our dr has never mentioned Decadron as a treatment option for Caitlin. I hope Danica doesn't have alot of side effects from Decadron. All I've heard about this drug is that it is alot stronger than Prednisone. I don't know if that means the side effects are worse. I sure hope not!
  • lucidawn
01 Feb 2010 12:26
Replied by lucidawn on topic Update on Danica
Hope all works out for Danica. What is the difference between prednisone and decradon? I don't get it.
  • lucidawn
01 Feb 2010 12:24
Replied by lucidawn on topic Timothy new meds, admitted as well
ALI!!!! Awesome news!!! He can enjoy his trip now, huh? Maybe a partial remission is in the works? And then on to...well, we'll ride the roller coaster, eh?

Thanks everyone for the encouraging words :cheer:
Its nice to have double digits near 100...but I won't hold my breath you know. We'll just see what the week, and the next few weeks brings. I know he can enjoy at least a week of fairly normal activities, though.

Hoping everyone's immune system modulates soon and the kids can keep their platelets:).
  • ktonooka
01 Feb 2010 11:04
Replied by ktonooka on topic Update on Danica

Good luck with the Decadron with Danica, hope it works for her. It would give you another option if it does work. Is it a short pulse that you will try?

Wow, maybe you can read the signs Dougie has (or doesn't have) better than you thought! A great start to his fun week.

mom to Jordan
01 Feb 2010 10:20
Replied by on topic Problems reported
I do look at the times something is posted. This site saying posted "1 week 3 days ago" or "5 hours 53 minutes ago" is confusing. I'm in the west, my day starts later than everyone elses - I know it is probably knit-picking but to me it is nice to know when a post was made, now it is just guessing.

Time on other site

top right of page
Server Time: 07:05:03 AM Your Local Time: 08:05:06

How it is above a post in a thread
Posted - 31 Jan 2010 : 11:54:28 AM

On Social Chat page with all the threads
11 Aug 2009 4:04:21 PM
by: Sandi

On the main page with all the sections on it
01 Feb 2010
05:00:55 AM
by: Ann
  • alisonp
01 Feb 2010 10:15
Replied by alisonp on topic Update on Danica
Hi Michelle,

Really, really hope that the new medicine works for Danica. It must get very tiresome getting all those IVIg transfusions, for you and for her.

We are clearly having a breather this week - last monday's count 16, today's count 104! Hope it lasts until he comes back from his school trip on Friday!


  • alisonp
01 Feb 2010 10:11
Replied by alisonp on topic Timothy new meds, admitted as well
:) :) :)

Dougies count last week - 16
Dougie's count this week - 104

Can breathe a sigh of relief for now and enjoy a bit of worry free time!

01 Feb 2010 10:07
Replied by on topic No. of replies per page
Yes it would be nice if it was wider - there is a lot of wasted gray space to the left.

Edited to add:

This is what is taking up the left side of the screen - really those 4 things are duplicates and can be found elsewhere.

Web Site Member Menu
Your Profile
Discussion Groups
List of Web Site Members
  • xray001
01 Feb 2010 10:05
Replied by xray001 on topic Update on Danica
Oh, why does my profile NOT show up on the bottom of my posts!!!!

I find that this new site is not really an improvement over the last one.

  • xray001
01 Feb 2010 10:04
Update on Danica was created by xray001
So - we have decided that we are going to try Decadron with Danica. I am really leaning towards the Rituxan, just because I think the side effects will be less, but others seem to think the opposite, so we will try the Decadron.

She has had 25 IVIg infusions, and although it works, it only works for about 10 days, and it is getting very monotonous.

One of the main reasons for us deciding this is that fact that Danica has been getting nosebleeds. At first, it would just be a little bit of blood on the kleenex when she blew her nose, but now it has become worse - full-blown nose bleeds. I will contact her hematologist this afternoon to get the ball rolling.

I hope the side effects are not too bad for her.

I do have my reservations about how well it will work. She never responded to Prednisone at all, so I am not really sure how well she will respond to the Decadron.
  • xray001
01 Feb 2010 09:54
Replied by xray001 on topic Timothy new meds, admitted as well
Darn - I don't think that I really like this site as much as the old one.

The comment above was from me, Michelle (Danica's mom)
  • xray001
01 Feb 2010 09:53
Replied by xray001 on topic Timothy new meds, admitted as well
Wow - I don't think I have ever read Tim having a count like 72. You must be ecstatic!!!!

I hope things get better for Tim - he has been on a really rough ride, and really needs some great news for a long time.

Good luck to you :)
  • julia
01 Feb 2010 05:38
Replied by julia on topic Liver transplants from live donors
When it was on tv i imediatley thought of i think it was MP who was going to need a new liver. Hopefully it can be brought across to help her too.
  • alisonp
01 Feb 2010 05:35
Replied by alisonp on topic Platelet Update

Hope tomorrow goes well for you - whatever the result is!

  • alisonp
01 Feb 2010 05:27
Replied by alisonp on topic Restricting Activities

I had the same issue with my 11 year old. The first 6 months when his count was always under 20 were a doddle, but since then it has been all over the place (124,33,60,16).

I am not sure if this is right, but I work on the basis that he gets on with life as normal if his last count was over 30 or so. If he gets symptoms, I make an appointment for a count. If his count is under 30, I restrict for a week and take him back for another blood test. His consultant says there are no restrictions with a count of 60. I am a lot more insistent that my children ALL take normal sensible safety precautions now - helmets when they are on their bikes for example.

I should add that Dougie has never had any serious bleeding issues, even with a count of 1. I've also found that that his symptoms are a pretty good guide - before last weeks 16 count for example, he had petichiae, some bruising and most of all he was very very tired. He only seems to get symptoms with a count of 20 or under.

Hope this helps, Ali
  • Ann
01 Feb 2010 04:25
Replied by Ann on topic No. of replies per page
I wish it were all a bit wider on the page too. If it was then each reply wouldn't take up so much space and you'd be able to get more to the page.
  • Angel85
01 Feb 2010 04:25
Replied by Angel85 on topic Platelet Update
Well, my platelets didn't stay up too high for long, last week they went back down to 46, i am having another blood test and see the haeomtologist tomorrow and we will be discussing other treatments like the rituximab and i think he has some info on the Nplate as well, i'll update u all when i have seen him tomorrow.
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