If you look under the 'About ITP' section of the web site, you'll see a link to diagnosis questions. These can help your doctor make sure you have ITP. PDSA sometimes hears from people who are misdiagnosed,so it is important for your doctor to have as much information as possible. The new ITP Consensus report lists the recommended diagnostic tests (see link in the news section of the home page)

Good luck with this.

Sandi - I don't think 47 is a safe count as mine drastically decreased. I have been reading up though like you suggested and I feel a little more informed.

Cindy - I have yet to see a hematologist yet...waiting for an appoitment. So, no I have not recieved any type of treatment. What scares me is that my count went from 109 to 47 in one month. I has almost been 2 weeks since then and who knows where my count is today.

Hi Pauline,
Just wanted to wish you and Caitlin the best tomorrow with the start of Rituxan. Good luck!

Karen
mom to Jordan
diagnosed April 2009

thanks for the reply! They just called and told me to up my pred to 20mg. Hopefully that works!

If you aren't bleeding and don't have a history of bleeding, well maybe there is no reason for hospitalization? Lots of us go through our daily lives with counts under 20. I worked for months with counts like that and was never hospitalized. Treating is generally a good idea with counts that low, hopefully the pred will send you right back up.
Erica

The hema nurse called last night and said my platelets were 16K and to see if I was actively bleeding, which I'm not. Said she would talk to the hema and call me back. I AM STILL WAITING!!! I am on 10mg of pred 1 day a week. I have been bouncing around the last couple of weeks. But this latest drop I went from 38K to 16K. Do you think I will have to go to the hospital? I hope not! I was admitted when I was first diagnosed back in June 2009. Or will they just up my pred and wait and see? This is the 1st time this has happened and I don't know what the next step is or should be. Curious to see what others experiences are/were with this.

Thanks Kim, that seems to explain some of my stuff too. I was outside midday for ten minutes the other day (winter sun, wearing hat and coat) and I got itchy bumps on my face, the only exposed skin. And different medications are giving me coughs, as well as some foods (chocolate!).
Erica

If he's still on the stroke ward over here im sure he will be knackered! I think a 57hr wk is an easy one for young docs here!
Julia

Great news i hope it levels out nice. Are you feeling any better?
Julia

I dont know but 70-80 sounds like not a bad count to me. Plenty of platelets to stop any bleeding & no cancer. Dang sounds like a good year to me. The tests are scary but it seems to me that so far you are doing well.

However that BP is not a good thing. Get out walk around the block.

Hi Lady with a Crunchy Baby!(?!)

OK, so it was 25 years ago when I was nursing mine, but I was told that having a beer would improve my output--and might even help me relax. However, since I can't stand beer, the doc recommended brewer's yeast tablets.... no help in the relaxation department, but I/we successfully went a whole year! Lots of liquids, of course. And it would have been a big help to have some sort of setup to catch the overspray from side 2 while baby was working on side 1! Ahh, memories---! Ann, Caitlin's Mom

Saw the immunologist yesterday. He's convinced I don't have any allergies to the environment or foods. He ran tests and ruled that out. He said I have antibodies to my mast cells, hypersensitivity reaction.

It doesn't matter what I come in contact with - everything has the potential to cause an over active reaction, even emotions, stress, etc. That explains why I had a flare when my mom was sick and I was worried, explains why I had a flare before going to China. Bad stress and good stress, resulted in a over sensitivity reaction.

Drugs are a huge problem for me, one day it will be ok, the next I'll take the same thing and have a problem. Foods will do the same thing, but not always, it will depend on what else is going on that might trigger an over sensitivity reaction.

He thinks this is probably been going on the last several years of my lupus, prior to transplant. Might have contributed to why I did ok with rituxan, but than had a reaction to it, but did fine when I had it post transplant. Why one platelet infusions caused a problem, but another one didn't. Why it seems plaquenil causes itching and when I stopped it, I thought the itching stopped, but then it came back. Why I have been going absolutely crazy with itching and trying to figure out what a trigger might be and never could.

I'm on 2 antihistamines (Zrytech, Allergra) Zantac, which reduces H1 antihisomine, along with an nasal and an eye antihistamines, steroid nasal and eye drops. He also wants me to stay on the 5mg of prednisone and if I start to flare with itching, despite all the antihistamines and have any lung wheezing, to increase to 10mg and call him. He has me seeing him monthly, because he wants to make sure I'm not degranulating too many mast cells and causing increased lung symptoms.

He said there isn't much he can do about it, except treat the symptoms and it's autoimmune disease, so if the symptoms get severe again, despite the antihistamines, he'll try immune suppressants. Well golly......

I found this information and thought anyone else who has itching or allergy symptoms with their lupus might find it interesting too.

pathmicro.med.sc.edu/ghaffar/hyper00.htm

Does anybody know how our young Dr Simon is doing???

I miss him !

Vanessa

Down another 100 from yesterday to 647 ! Hopefully a trend!

Vanessa

Thanks for the advise Lily, I'll make sure i take it slow when i start to taper under 10mg.
Thanks, i hope it works well for me too, from what i have read, there doesn't seem to be nearly as many nasty side-effects with Nplate as there is with the pred, so i'm happy with that.

My chiropractor also does Accupunture. I find it helpful do a series of treatments when I have insomnia, but it hasn't done anything for my platelets.

Anyone doing this? I used TCM to get pregnant (infertility/PCOS) and now that my son is 6 months old and I was recently diagnosed with ITP, I'm thinking of turning to it again.

Just curious if anyone else was seeing results?

Wow, you've gone through a lot in a few short months. Good news, No Cancer and perfect colon.

If your platelets are hovering in the 70-80K range, other than your own need for answers, you won't have to rush to the next step. Most hemotologist don't treat until your under 30K and each of the treatments bring their own set of issues. You can even have emergency surgery with a count of 50, but they prefer above 100 if possible. You've come to the right place for information. You have time to read and absorb the information posted here and have formed your questions when you do meet the hemotologist in April.

That scholarship is exactly what I had in mind. Even when handling my most severe symptoms as a young high school student, I found that such a scholarship didn't seem to exist. I can remember trying one for a hemophilia organization, but ultimately ITP was just too different a condition. Yes, as a young person with a chronic ITP diagnosis, I can tell you how thrilled I was to see a specific scholarship at last.

Ditto from me.

I just signed up here, but have been looking for support/info. about ITP and breastfeeding. My son just turned 6 months last week and I was diagnosed with ITP about 2 weeks ago now.

My platelet levels have gone from 10 to 19, 27, 67 last Monday and today are back down to 19. I was on Predisone 20 mg 3 x a day, was allowed to go to 2x a day after the 67 count, but now am back to 3x.

I am so concerned about breastfeeding. It seems like I am having huge supply issues, I can only assume to due to the steroids, but nothing I can find online will confirm that....my husband has even found things saying that is boosted supply.

I am worried about me and having ITP of course, but my main concern is continuing to breastfeed my son. He's never had formula or a bottle and after experimenting last week when my supply totally tanked, it was a disaster. he wants nothing to do with it and it flips both of us out. I know the stress isn't helping my supply either.

I've been taking mother's milk tea, and special herbs (fenugreek), but have recently read about that having an ill effect on platelets or causing the steroids not to work, so I'm worried that they are down again this week b/c I've been consuming all that. But I have to keep the supply up. It's a vicious cycle, I guess.

Anyway, just looking for some support and see if anyone else is trying to breastfeed through ITP and what you're finding works/doesn't work. Whatever you can help me out with! Thanks

good to hear! I had one to check for possible causes of my anemia with counts at 40. My GI has the office next door to my hema though so when she had questions that I couldn't answer we literally walked down the hall and asked my hema together. She was completely comfortable after that.

Again, hello. I'm a 21 year old girl who has suffered the symptoms of ITP for the majority of my life. And I can tell you about just the kind of motivation a finding of 19k platelets can do for a person of my age - now that I know the symptoms are here to stay for some time, I am motivated like never before to advocate for students of all different physical abilities / disabilities on my college campus (Santa Clara University). What I've found that's disturbing is specific groups exist to serve people of different ethnicities, sexual orientations, genders, economic backgrounds, religions... the list goes on, but somewhere I found NOTHING offered to help students managing ongoing, chronic illnesses - when it seems we might need the most support of all.
Check out my work on Facebook, I hope to have this novel kind of student group running by the coming quarter. www.facebook.com/group.php?gid=351523597811&ref=mf

Thanks so much for that - I haven't been tested but I'll look into it!

Gilly

Dear Emma

Thats lovely to hear that it worked for you! maybe it'll work for us too

They don't think I have Polycystic Ovarian Syndrome but I seem to have problems in ovulating at the normal time, my periods are very irregular.

My husband hasn't got 100% normal sperm but they're not too bad.. The doc said theyre below average. I've seen them under the microscope and they seemed to be swimming very well an amazing thing to see by the way!

We had a feeling the dr. might be over-reacting, although he wasn't saying that we shouldn't go ahead, just wanted to warn us of the risks. Everyone doing IVF has a 1% chance of hyperstimulated overies apparently, its just that he says if I fall into that 1% and have a reaction then I'll probably die.. whereas non-ITP patients would just suffer illness and need to be in hospital for a week or so on fluids etc.

He is trying to arrange an appointment for us to see the Director of the nearest fertility hospital to get a second opinion.

We'll see how it goes...
Thanks for replying, was really nice of you

Gill

I found eating cooked broccoli and raw or warm spinach everyday helped too. They are naturally high in vitamin k and naturally tasty. Vitamin k is supposed to help with clotting.
Julia

APS has never come up in any coversations......yet, but I will persue the concept. As the clot was diagnosed 7 days ago, it's to early to tell. The earlier 14 week N-Plate regimen produced wild unpredictable results, once with a 200k jump within a week. I did have an episode of periferal thrombosis-left foreare, 3 months ago and during that time I was on N-Plate. There are just no 'black-and-white' answers on these problems..........

N-Plate came up in the discussion as a possible cause, but I've been very active remodeling a house and I sometimes tend to abuse myself in the process. But I will investigate the APS option.