Sandi,
There also isnt a way to edit your posts.

This damn rash is killing me. Today I was so horrible that I almost took another 10 of prednisone to see if that would help. Today was unually sunny on my way into work and it just went downhill from there. My arms then got blotchy and burned, then my scalp started to burn. I ended up getting some benedryl to try and help and well it didnt really help that much at all other then make me sleepy. I have no idea why this is getting so bad or how to make it better. Sorry guys Im just frustrated and had a bad day :dry:

I agree, 20 should be able to raise your count high enough and not give u too many side-effects. I'm currently on 40 and i am getting quite a few nasty side-effects.

Just thought I'd update you all on my latest weekly blood test. Just as I thought from the bruises and petechia, they have gone down again. They are back down to 47 from 76 last week. I know 47 is still quite good, but i'm just bummed they have gone down again especially when i am still on the 40mg of pred a day. I see the doctor next tuesday and have another count down before i see him. I just hope they haven't dropped down any lower.

What a beautiful eulogy, I'm sure your mother would have approved of that. My thoughts are with you and your family at this sad time

Well it doesn't look like we will have it this week. Caitlin's dr really wants her to see the Rheumatologist before she starts the Rituximab because she doesn't want it to affect her overall plan of care. She doesn't see the Rheumatologist until Feb. 16th. I know that is only 3 weeks away, but in the meantime..."keep her feet on the ground". I almost want to say...YOU come keep her feet on the ground. She doesn't listen to me because she truly seems to be in denial that anything is wrong with her except for when she is feeling the effects of the treatments. Don't get me wrong...she isn't a problem pre-teen. Just a pre-teen that wants to do whatever she wants to do without restrictions when it comes to activities. I've told the doctor before that I truly think Caitlin has a Type A personality (daredevil) and has since the day she crawled out of her crib at 4 months old. (Then took off running by the time she was 9 months old!)

As far as her symptoms right now...she only has a few bruises and some petechaie inside her mouth. Oh, and I meant to ask the other day...is itching a side effect of Prednisone? She made her scalp bleed in several places earlier this week because her head kept itching so bad. I kept checking her over and over for lice, but didn't see anything. (She has been off since last Friday night.)

Jennifer yes you can edit your post - there is a red oblong icon that says Edit, it's next to Quote icon/button I think.

So with the spoiler, which you can get if you do a Reply or Reply To Post, it is next to where you can select a font color - put your cursor on it and click and then the "secret" message that someone put in the spoiler shows.

thanks. Your posts are very helpful. I will be curious to see if 20 mg raises my count, and also to see if I get any bad sad effects. If the answer is yes to the first and no to the second, then short-term lower doses might be a way for me managing the ITP when I am away from home, need dental treatment or whatever. Otherwise I am quite comfortable with watching for symptoms and not treating - tho I am aware that symptoms can evolve with time. I don´t even bruise over 15 or 20, and that wasn´t true at the beginning. It would be good if more research were done on the correlation between count and symptoms, and what the factors that influence this are. It can´t be entirely random, even if it is complex and very variable between people.

Thank you Sandi. Are you experiencing any adverse side effects to the prednisone? I feel that I prednisone might be the best case scenario for me too.

Thanks, Lauren.

My son was just tested by the public school district for learning issues. They feel that he has a processing issue and I should speak with my pediatrician about possibly using meds to help him focus. I have been assured he does not have the "hyper active" ADHD, but possibly the inattentive ADD. Does anyone know if there are meds that are contraindicated w/platelet issues? Thanks in advance for any insights/information! ~LaMonica
Mom to Camden-9yrs diagnosed 6/09

Is there any way we can limit the signature length? I'm finding that people who have 10-40 lines with all their history are causing the discussion to go to multiple pages much sooner than the old forum and it can be annoying, especially if the same person with 20 lines posts multiple times. The time to wait on a new page refresh makes it slower.

Perhaps we can encourage them to share the history in their profile with an option on what they allow others to veiw?

Thanks! We took her in today and she was at 9K. They were thinking about maybe starting rituxan but as she is so young and its only been 3 months we opted instead for some CellCept. Hopefully this will do the trick.

Hi there,

I'd have to say that 20,000 seems to be the magic number for treatment but every specialist seems to be a bit different. We too are doing the watch and wait approach with our son Devyn who is 2 but if he drops below 20,000 or becomes symptomatic then we will then talk about treatment. This is our second bout with ITP but still praying everyday that it too will go away.

I hope that your journey with ITP is not a long one but if by chance it is then this is a great place to get info, ask questions and even vent if you have too!!

Good Luck with everything

Deanna

One of the hospitals in Newcastle near me is starting to do Liver transplants from Live donors. Because the healthy Liver regenerates and grows to the nessesary size it needs to be they are having an evening tonight and encouraging donors to come forward.
Julia

Hi ali,

I have to agree with you...the ups and downs of this disorder are very hard to deal with. When Devyn went up to 101,000 on his own i thought for sure that we were only going to see good numbers from there, but 2 weeks later he went down to 29,000. When he was first diagnoised at age 1, we treated with a dose of IVIG and his counts went up and never dropped any lower then 120,000 for over a year....i'm finding this time around much more stressful because 3 months later we still have low counts. At this point i'm comfortable with the wait and watch approach as long as he does not become symptomatic.
It's nice to be able to talk to someone who is doing the wait and watch approach as well!! I truley hope we never have to treat again and ihope same for you as well.

We actually just got back from the specialist and Devyn's counts were 51,000, i was a bit surprised i really thought it was lower....praying that they continue to go up but happy that they are a bit higher then last time.

I hope Dougies are higher when you take him next!!!

take care
Deanna

Hi there,

For my son's consultant, there is no magic number. His rule is to treat symptoms not counts. If there is no serious bleeding (i.e. not just bad bruising or petichiae) then he wouldn't treat. Says the treatments are all risky in themselves. He is one of the top UK childhood ITP experts so we trust him a lot. My son has been down to 1 on a couple of occasions now and not been treated. We've been going 8 months now with no real problems from this approach.

Having said that, it makes the local hospital and both his grandmas very nervous!!!

Hope your daughter improves soon - she is in the right age range for it to be a temporary problem, so I will keep my fingers crossed for you!

Ali

Don't ever feel bad about being a freaked out mom.....it just shows how much you love your child. I can't say that it ever gets easier ....you just find ways to cope with it.

Good luck,
Deanna

Isn't that amazing!!!!

I just recently found out that this can be done and that the liver regenerates. I learned it on the Grey's Anatomy series.

Amazing!!!!!!

Michelle

I have been on steroids since the day I was diagnosed with ITP in 1983, with a only a few times of remission, or a choice to not use steroids. Once in 1984-86 remission and another 2 years in the mid 90's, when I just made a decision to not treat my ITP. I decided not to treat my ITP and just lived with counts below 10k. After about a year of no treatments, I noticed symptoms of fatigue and joint pain that would come and go and as time went on the symptoms became worse, until I finally saw a hematologist about my ITP and the other symptoms. He ran lupus tests and what had been lupus pretty much in remission, became lupus with a very high ANA and DsDNA. This necessitated a rheumatology follow up and began treatment for lupus and ITP. I've been on steroids pretty much non-stop since then, along with a host of other treatments.

I think by letting my lupus get so bad, I ended up with refractory to treatment lupus and ITP, progressing to APS, blood clots and lupus symptoms that ended up causing disability and I stopped working in 2003 due to the symptoms of fatigue and pain, along with the ITP, I just couldn't handle the stress of work anymore.

I think if I had kept on a low dose of prednisone, or other lupus drug, I might have avoided the higher doses of toxic drugs. I don't know for sure, who knows really. I guess since I developed more severe lupus after stopping all drugs, I think lupus got worse. Although, even after starting back on medications for lupus and ITP, I continued the downward spiral, so it could be I was always on this downward spiral and ITP diagnosed in 1983 was the first symptom. It could be it progressed faster because of the 2 years of no treatment.

Prior to stopping all treatments in the mid 90's, I had intermittent episodes of joint pain and fatigue, but they would last a few months and subside, so it was hard to put everything together. I had times where I'd get a facial rash and other rashes, but they also cleared up, despite sun exposure, so I could never figure out what the rashes were from, until I got the high ANA and DsDNA in the mid 90's. I guess I was just too busy to focus on the intermittent annoyances and ignored them, until they got constant and persistent. I'm not so sure ignoring the symptoms was a good idea and I probably should have been on plaquenil or other drug, such as low dose prednisone to ward off the severe flare I experienced.

I'm currently having a major problem with rashes and itching, which no one can seem to diagnose. My lupus tests are stable, with a negative ANA and DsDNA, but I continue to have a low level of RNP and Sm autoantibodies. I'm in remission, but with some lupus activity, because I still get joint pain and fatigue. 2 months ago I stopped plaquneil, because that can cause itching, I stopped other drugs too, because I was disparate for relief from the itching. It seemed at first I had some relief, but it flared again, so I think what probably happened if a cool down of the rash and itching from a round of higher dose steroids, which just knocked it back for a while. I don't think it was medications, so I've started back on all the medications I was on, along with 3 allergy meds to help manage the itching and rashes. Seems to be working, but I still flare every other day or so, where I'm miserably itching. I see an immunologist currently, because my rheumatologist left, but will follow up with a rheumatologist in a couple of weeks.

I'm not in the sun, as there isn't much sun in N.E. WI in winter and it's too cold to really be out in it when we do get sun. I also get rash and itching on unexposed areas of my skin, so it's some type of systemic autoimmune process, which I'm afraid might be lupus related.

I've started back on plaquenil, because I'm afraid of being off it. I've continued with 5-10mg of prednisone, but seriously thinking about upping it more, although I already have problems with osteoarthritis and bones are shot. I broke my sacral 2 years ago and that was with taking fosomax for 5 years prior. I'd like to avoid as much steroids as possible, but probably because I've been on them for so long and don't see any time soon getting off them completely. I manage them and take as few as possible, but that means I live in pain and with fatigue. Since I don't work, I can manage the stress pain and fatigue causes and I can rest when I need to. If I was working, there is no way I'd be able to manage my days without 10-20, pr even 30mg of prednisone.


My rheumatologist seemed ok with my managing steroids on my own and always wrote a script for prednisone. My hematologist was OK with it, but probably not as sure and understanding as the rheumatologist, so he left that up to me and my rheumatologist to manage.

Hi Deanna

Thats really good news about Devyn's count (I love that name!). When Dougie has been at that level in the past, I've always considered it really safe - in fact when he was at 60 a fortnight ago, I was just thinking that if he could just stay there and not go down, I would be really happy to accept not going up either. Clearly, that wasn't to be!!!

I agree that its good to have someone else to talk to who is doing watching and waiting - it seems a really good approach to me in the short term. Our only problem with it is that Dougie is missing playing sports big time. But then, life isn't perfect is it? I feel very grateful at the moment that ITP isn't causing him any problems beyond this.

When do you have to go back for a new count? - I thought I had it sussed a fortnight ago because he was at 60 and they said 3 months. Now we'll have been once this week and once next week - best laid plans and all that heh!

Ali

I have the same problem but with a PLT 56 (one thing that seems to be true is that the error in finding the PLT could be in the ball park of 10 or more). A conversation is going on between my Gastroenterologist and hematologist with my as the go-between via email. I have yet to hear from my hematologist as to how he will increase my PLT for the operation. I think there are some medications that can be used like: corticosteroids.

www.redorbit.com/news/health/1606504/gsk_reports_promactar_eltrombopag_significantly_increased_platelet_counts_and_reduced/index.html

I had a hydrocelectomy and didn't have any problems with bleeding although that is probably not as serious as having a polyp removed.

I'll keep you informed about the ongoing discussions between the various physicians.

My son is riding at about 1k most of the time. His hemonc is trying to get his count above 10k. With that said, he treats with IVIg any time he has bleeding symptoms, which usually gives him a temporary rise of about 30k for a few days, and then it trickles down to about 9k in about a week, and then 1k a few days later. But it stops the bleeding symptoms for a few weeks. We have had all the first line meds to treat ITP, and have moved on to Rituxan and Promacta, and now we are looking for new options. We will be talking on Friday about our next step. Not sure what we will be doing.

Immunoglobulins is one method of increasing platelet counts.
What I don't understand about that is that I thought a cause
for ITP is that the body is destroying some of the platelets
as if they were foreign bodies.

Never despair Ali. You learn to live with this thing. Its a roller coaster only if you hope in the idea of a cure and complete recovery every time Dougie has a hint of high counts. Just try to ride the highs and lows for what they are, realizing that it is what it is. Dougie will learn to cope with it and he will find ways to cope. We always thought Tim would be the athlete because he was the biggest and is such a natural athlete. But he can't do that. And I have not told him he can't be one, but he knows it. And he has found something else. He has found now that he is a natural musician. He picked up the bass and guitar this past year and plays it by ear. He's very good and sits around playing constantly. He does not even care to play sports or go out and be involved in "adventure camps". Dougie will find other interests and talents. In the meantime, he might also recover from ITP. Don't give up hope-but try not to put all your hopes in a good count each time. Ride the rollercoaster and enjoy each moment.

Hi Donna,

That is a lovely post. You are so much more sanguine about this than I manage to be most of the time.

I think part of the problem is that we have been told until now that Dougie WILL recover, and I guess I have never asked the questions that would have suggested that he wouldn't. I have been wondering if maybe I only hear the things I want to hear when he sees the consultant? It has been clear to me this week however that this will be long term and we have to find ways to live with that happily rather than worrying about the ups and the downs - exactly as you say. Interestingly I have started Dougie at guitar lessons since he was ill too - I figured it was a nice safe thing with some "cool" factor thrown in. He is doing his first exam next month!

The sports thing is much more of an issue for us at the moment, because Dougie's own sense of identity is currently wrapped up in being this kid who is really good at sports, really active, and a bit of a daredevil. Unfortunately he hasn't yet come to that realisation that he might be better off redefining himself - I am working on that!!!! But the consultant says he can play competitive football over 30, and hopefully he will achieve this again. He is still doing training with his team which makes him feel better. And he desperately wants to be the same as his friends at the moment, which is why the school trip is so important to him. I don't think he has been dealing with ITP long enough and he isn't old enough to have gone through that process of accepting that he just IS different!

This week has been made loads worse by the fact that we are under threat of redundancy at work and we are all getting reinterviewed for a reduced number of jobs. Hopefully it will all be done and dusted on Friday and I can get on with next week anew with a more balanced view of life. Whatever Dougie's count is on monday, I am happy that they will take good care of him on the school trip and that he will be ok.

Talking to other parents on this board really helps me by the way. How is Tim this week anyway?

Ali