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  • Sandi
02 Feb 2010 20:42
Replied by Sandi on topic Logging in
I'll bring that up.
  • xray001
02 Feb 2010 18:59
Replied by xray001 on topic Update on Danica
I talked to our hemo today, and he is going away for a month, so we will start the Decardron in March. I guess we will just have to do a couple more IVIg's until then.

Hopefully her nosebleeds won't get any worse. She has not had a problem the last couple of days, but that is because she had IVIg on Friday. Her count is 125 today. :)

Thanks for all your replies.

02 Feb 2010 17:31
He's got a long road ahead of him.

Thanks for the update Sandi!
  • Ann
02 Feb 2010 17:30
Logging in was created by Ann
It'd be really good not to find ourselves on the front page when we log in. It'd actually be better if we could stay logged in like on the other forum so that every time we come we are still logged in.
  • tigereyes
02 Feb 2010 17:29
Replied by tigereyes on topic Donating Blood
I used to donate blood on a regular basis prior to being dx with ITP. The way it was explained to me was that although her platelets are stable she may still have the antibodies in her system and when its given to another person it can cause temp ITP in them. Like if her blood was given to someone who was in a car accident you wouldnt want them to have a low platelet count. If that makes sense to you.
  • norita
02 Feb 2010 16:07
Replied by norita on topic differing thresholds for being alarmed
Am going to stay at that dose until I see my UK doctors next week (back home for a few days). I think they would like to reduce it then. But the Spanish doctors are very insistent on my getting higher counts, and they are telling me to have very frequent blood tests and up the dose. I'm impressed that they are taking a keen interest in me - they're ready to give me whatever treatment I want here (I guess it would all be repaid by the NHS, but that's not for certain and there is no mention of cost). Seems like a great health system from that point of view - very good, dedicated doctors doing whatever they think is necessary regardless of who the person is and where they come from. But it's making it a bit awkward, telling them my doctors back home are averse to treatment, where possible, and that I want to wait!

The doctor today told me that the treatment of choice here is Rituximab (after trying steroids and anti-d), and that they have very, very good results with it, around 80% (off the top of her head) not needing any more treatment for a long, long time.
  • Angel85
02 Feb 2010 15:14
Replied by Angel85 on topic Donating Blood
Sorry to hear that. I have also read something somewhere to say if u have ITP u can't donate blood.
  • sandpit
02 Feb 2010 12:07
Replied by sandpit on topic Restricting Activities
You might learn to read your son, see clues that are related to his platelet counts. My teenager really droops, grouches and becomes uncooperative when her platelets are crashing, before we even know it. Then she sleeps until she bounces back. And teenagers aren't that different from preschoolers!

I always made all my kids wear helmets on bikes, elbow pads, wrist guards on skates, etc. We tried to get the soccer teams to wear head gear against concussions cause they should but we were the only paranoid/informed ones. Lots of it is common sense for all so the ITP kid is not singled out. (like seat belts in a car).
  • Bunnie
02 Feb 2010 11:56
Replied by Bunnie on topic No. of replies per page
I actually like the day & hour ago feature. I know when I last logged on and can quickly scan down to catch the most current posts.

I also don't have to play the 'what time zone" game and does the server reside in a state that does or doesn't do day light savings since my state (Arizona) never does.
  • sandpit
02 Feb 2010 11:23
Donating Blood was created by sandpit
My 17 yr daughter has what I call "recurrent acute" ITP, ie her platelets plummet when she's sick but she bounces back without treatment most of the time. She's received IViG twice, once just over a year ago, once 5 years ago. Her platelets have been stable the last two months, since flu shot episode.

Today she was turned down for donating blood because she has had over one ITP episode and is considered chronic.

I had read mixed things about blood donations on the old discussion boards, but this is one more episode in the "no" column.

The sad thing is that she was really looking forward to it, probably since she realizes she's benefited from donors via IViG.

Guess I'll try to donate twice as much. . . .
  • youngjoan
02 Feb 2010 10:56
Replied by youngjoan on topic Platelets can reproduce in circulation?
In the pictures, the platelets stretch into the typical dumbbell shape that is usually seen in cell division, then split. Dr. Weyrich is sending a picture for PDSA to publish in the next issue of The Platelet News.

This finding must make it really difficult for the manufacturers of the platelet counting machines since it is one more shape to consider. It might also help explain why the counters can be inaccurate at low numbers.

Dr. Weyrich found that when he had fewer platelets in his cultures the platelets divided more rapidly then when there were more platelets.
  • lili
02 Feb 2010 10:55
Replied by lili on topic Platelets can reproduce in circulation?
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.

  • lili
02 Feb 2010 10:52
Replied by lili on topic differing thresholds for being alarmed
That's a pretty good response. Are you going to stay at that dose or start tapering?

  • Ann
02 Feb 2010 10:43
Replied by Ann on topic Colchicine treatment
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."
02 Feb 2010 10:27
Replied by on topic No. of replies per page
So much nicer - thanks!

Now if we could get rid of the "1 week 23 hours ago" with the posts :laugh:
  • Ann
02 Feb 2010 09:58
Replied by Ann on topic No. of replies per page
It's much better now it's wider too. Getting rid of that side menu makes all the difference.
  • tacmom
02 Feb 2010 09:54
Replied by tacmom on topic Update on Danica
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.)
  • norita
02 Feb 2010 09:17
Replied by norita on topic differing thresholds for being alarmed
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.
  • dbishop
02 Feb 2010 09:01
Replied by dbishop on topic Timothy new meds, admitted as well
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!!

  • dbishop
02 Feb 2010 08:51
Replied by dbishop on topic Timothy new meds, admitted as well
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!!

  • Angel85
02 Feb 2010 04:10
Replied by Angel85 on topic Update on my platelet count
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.
  • liam12
02 Feb 2010 03:33
Replied by liam12 on topic Timothy new meds, admitted as well
its great to hear that he is doing well, my fingers are crossed for you that :woohoo: it stays that way,,,,jenny (liamsmum)
  • Angel85
02 Feb 2010 03:08
Replied by Angel85 on topic Steve a/k/a Gort (moved from old Forum)
Good to hear he is still making good progress.
  • jayner10
02 Feb 2010 02:12
Replied by jayner10 on topic Colchicine treatment
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!

  • Sandi
01 Feb 2010 20:33
Replied by Sandi on topic Steve a/k/a Gort (moved from old Forum)
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.
  • Sandi
01 Feb 2010 19:30
Replied by Sandi on topic Restricting Activities
In the Parent's Section, there is a posted article about Sports and ITP that you might use as a guide.
  • Sandi
01 Feb 2010 19:27
Replied by Sandi on topic Platelets can reproduce in circulation?
I would have thought multiplication was due to fragmenting, but apparently not.
  • Sandi
01 Feb 2010 19:24
Replied by Sandi on topic Problems reported
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?
  • Sandi
01 Feb 2010 19:20
Replied by Sandi on topic No. of replies per page
There are now more replies on the page.
  • xray001
01 Feb 2010 18:42
Replied by xray001 on topic Update on Danica
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?

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