My update on my visit with my haemotologist today, my platelet count has dropped again to 21, not sure what is happening there, but he doesn't seem to concerned with that. He thinks he can get the Nplate approved.There is a program where the drug company will pay for the treatment as long as you meet certain criteria, and the doctor believes i meet all of those and he thinks we should get an answer back within 2 weeks if it has been approved or not. I am staying on the prednisone until we know if we can get the nplate approved and then we will start that and start tapering the pred down if the nplate works.

its great to hear that he is doing well, my fingers are crossed for you that it stays that way,,,,jenny (liamsmum)

Good to hear he is still making good progress.

Hi, Ann.

In what ways ( symptoms ) was Colchicine considered toxic? At what dosage? I am interested because I have avoided other methods of treatment due to the long-term effects of these treatments. So little time has been invested in the new drugs and treatments available currently, and I do not wish to add this drug to that list. It is working so well for me presently. My mother is in her late 70's and is a retired registered nurse. She says she has known of people taking maintenance doses of Colchicine for Gout their entire lives with no contradictions. My dosage of 1.2 mg is considered a maintenance dose. However, you have brought up a good point and I shall be discussing my treatment with my doctor again at my next blood drawing. I did see the Blood Journal article prior to you sending me the link but also noticed that Vitamin C was on that list, as well. Vitamin C has never helped me either. I have tried that before. Could the lack of justification for treatment be due to the variable response to treatment that seems to be so prevalent in the treatment for ITP? Everyone is so different in their response to treatment. I also wonder if the toxicity reported involved possible other patient conditions/illnesses/drugs combined with the usage of Colchicine that could be a factor in toxicity? As patients, we are so at the mercy of our doctors and their knowledge of this disease. Any information you might have regarding Colchicine that is medically supported would be very helpful and welcome. It is just such discussions as these that help everyone to explore their options and become acive participants in the handling of this disease. I have had such low times with ITP. At times I have felt so alone and completely unable to control its' onset in my life. For 5 years I even chose simply to ignore the petichaea and bruising I was experiencing and chose to not treat it. I had no complications at all, but always heard that little voice in the back of my head whispering " What if...? " I am sure any and all of us with this condition may have been there before. So if anyone has insights, journals, information, etc. regarding Colchicine please send it along. And Ann ~ thank you for responding to my post. i had thought I had researched this drug pretty well, but I may just need to do some further investigation!

Jayne

New update from Steve's brother:


Steve is doing well. He continues to make progress on the stroke issues. He can't speak, he has trouble swallowing, and he can't control his right side. They are starting the neuro rehab process to address those issues. They expect that to be a 4-6 month process, perhaps longer.

In the Parent's Section, there is a posted article about Sports and ITP that you might use as a guide.

I would have thought multiplication was due to fragmenting, but apparently not.

Well, I guess we'll just have to live with the time situation. It doesn't bother me, I never really looked at time, just dates.

Anything else?

There are now more replies on the page.

Donna - I am not really sure what the difference is, I just know that there are about 9 or 10 different "corticosteroids".

Ali - glad to hear that Dougie has a decent count. He will have lots of fun this week, and for you, maybe you do not need to worry as much as you would if he had a low count.

Caitlin's mom (sorry, you first name has slipped my mind) How is she doing? Is she still competing?

Michelle

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!

Ali

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!!

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.

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.

There is no test forum or site. Would be nice, but not available.

Joan

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

Ali,
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.

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.

Ali

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.

bloodjournal.hematologylibrary.org/cgi/content/full/115/2/168

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 !!! )

I'm saving this one on my favorites!!!! I'm trying to hang on for new treatments and this one sounds promising to me.

Michelle

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.

Oops, does the same when I hit "edit". I meant to say "left" (not right) and couldn't fix it because of the shifting.

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.
Giselle

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!

Hope all works out for Danica. What is the difference between prednisone and decradon? I don't get it.

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
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:).

Michelle,

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?

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

Karen
mom to Jordan

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

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!

Ali

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!

Ali