This is very interesting. It might explain why some treatments work on some people and not others. I'm looking forward to your article Joan.

Lily

That's a pretty good response. Are you going to stay at that dose or start tapering?

Lily

I think it's because unlike with say, azathioprine and mycophenolate, when it becomes toxic in the body, instead of simply withholding the drug and having the body recover, it tends to result in death. The accidental mixing with other drugs, including some antibiotics is a concern and if that results in death then it's a good reason to avoid using it when possible. It also can become toxic in those who have renal or hepatic problems without knowing it.

"Of the 169 deaths, 117 were not reported as overdoses; i.e., the majority of reported deaths had colchicine doses within the therapeutic range of less than or equal to 2 mg per day."

www.fda.gov/Drugs/DrugSafety/ucm174315.htm

So much nicer - thanks!

Now if we could get rid of the "1 week 23 hours ago" with the posts :laugh:

It's much better now it's wider too. Getting rid of that side menu makes all the difference.

Caitlin is doing ok. Doesn't really "look" good so I think she is about to come down with something. Hard to tell if her count is still real low or not because she doesn't have alot of bruising or petechaie. Just the real dark circles under her eyes and she looks pale. Yes, she is competing even though she isn't supposed to. (Still no flying or dangerous tumbling though!) We head out of town this Friday for a two-day competition this weekend. We still have a couple of injuries on the team so it's hard to tell if we will pull through or not. At least this will be the last competition until April, unless the coaches add another one in between. We are going to try to get the Rituxan infusions done while she is on break from competing. She goes to see the Rheumatologist on Feb. 16th. (Her hematologist doesn't want the Rituxan to interfere with any testing that the Rheumatologist wants to do, which is why we're waiting for 2 or 3 more weeks.)

Well, a week on 20mg/day has raised my count from 11 to 43. I'm happy with that, and my UK doctors are happy. Spanish doctors still want me to increase the dose, but I said no... 43 for me is great.

Hey Donna,

Glad to hear that Tim's count are up to 72.....people always say to me that it must be tought to have a little one with this disorder, I agree it is definitly tough but Devyn is so young and has no clue he has ITP (although i'm sure he is sick of me saying "be careful" LOL) I think it would be tougher if he was older and knew he was missing out on certian things.

Since i'v come to this forum i've seen how strong and positive you have been through this journey with Tim and his ITP, I just wanted to say Thanks....your words of adviice help so much!!

Deanna

Wow Ali...104 that is awsome!!! I hope he has fun on his trip and try not to worry too much!! It's crazy how they can go up so fast....enjoy these high numbers!!

Deanna

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 :woohoo: 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

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.