Hi Michelle,

Its lovely to hear from you - I've missed you! I hated the site too, and I still don't think it is as handy as the old one, but I am getting used to it. The thing that most annoys me too is that it doesn't keep you signed in, and then unless you sign out, it keeps you logged in pointlessly for hours - I don't get it. Why can't it just remember you like the old one???

Poor Danica, I don't know how either of you are coping with the whole thing. 27 goes at IVIG - honestly I really don't know how you cope. And Danica must get the same variation in counts with IVIG that is annoying me so much with Dougie at the moment - I find the constant up and down nearly as stressful as permanent downs. I need to stop complaining and feeling down about Dougie's count which is only intermittently low.......I think I need to shut up! He's got a sore throat today, so maybe thats whats causing this latest lot of symptoms,

Anyway, I really hope that the Decadron works for Danica without too many side effects and QUICKLY. If it doesn't (fingers and everything else crossed that it does though), I've been reading up on rituxan and whilst I think it looks a bit scary, it does seem to work in producing remissions in a number of cases. My sister has a friend who is a doctor in Spain and he says that is their preferred treatment.

Good luck anyway

Ali

Hi everyone - sorry for not keeping in touch, but I really do not like this site very much. The old one was so much easier. I just stayed logged on to the old one, but this one, I have to log in every time and it drives me crazy.

Pauline - I hpe that Caitlin feels better and that the Rituxan does the trick for her.

Ali- sorry to hear that Dougie is not feeling very well, and not dealing very well with this either.

Donna - I have also been following your posts - even tough I do not respond (sometimes I don't log in, and because of that, I can't leave a response.

Danica had IVIg #27 last Thursday. I have been waiting for one of the nurses from Pediatric Outpatients to call. She was going to talk to our hemo today about starting Danica on the Decadron. Perhaps she did not see him today, or maybe she sent me an email at work, instead of at home. I will check tomorrow.

Does anyone have any experience with the Decadron? I was wondering how long we would try it. IF there is no improvement after the first round, would he try another one in another month? If so, how long do you think that he will continue to try it before giving up?

Oh, I should not be so negative. Perhaps the Decadron WILL work, and she will keep a healthy count. If it does not work, then we will try the Rituxan next.

Michelle (mom to Danica)

Kim,

I understand that it is not the end of the world and that I'm not dying.. But at the moment ITP is making my life impossible.. I just started a new study Lifestyle and Health.. It's a sport studie so I sport 4 days a week.. Next to that I'm a professional dancer and atm I can't do anything.. And even if my counts are ok I don't feel confidend enough to sport becouse in between my appointments at the hospital my counts could drop.. And I don't always know when my counts are low.. I'm in a riskfull invorment every day.. And atm ITP is making me depressed.. Apart from the fact that I'm getting fatter every day, got sits and acne all over my body from the medication.. I just feel like my body is not mine anymore..

Joya

Samantha, Joya,
Get a grip...it's ITP, it's annoying, it interferes with life sometimes, but it's not the end of the world. As tofer said, as long as you're not juggling chainsaws, you're not a sword swallower, you'll live a full life. That is, as long as you let yourself life a full life.

I was diagnosed with ITP at 23 and am now 50. Diagnosed with lupus 20 years ago and a lupus related clotting disorder 10 years ago. I was clotting and bleeding from ITP at the same time. Trust me, I have never let it interfere with my enjoyment of life. Has it interfered with my life? Absolutely. Has it changed me abilities to experience some things I used to experience? Absolutely, but I still get out, I still enjoy friends and a drink form time to time. I travel...just got back from China and am planning the next adventure. There are so many things to do on this planet, I refuse to let one limitation ruin my life, because I can always find something else that is enjoyable. You can always enjoy the company of a good friend, or a good book.

It's hard at first, just grab hold of life and hang on. When initially diagnosed with a chronic illness, it feels as if you've lost control. That feeling should subside a bit, but you'll need to participate in life or you'll risk loosing out completely. So, snap out of it, or if that's not possible, take one step at a time and get out, go to the beauty shop, get a pedicure and start doing the things you did before ITP. You're the same person, just with ITP.


Kim

You may also want to consider Zantac, which is a H2 histamine antagonist. I find combining Zantac, Allegra and Zyrtec, along with an antihistamine nasal spray and flonase, saline eye drops with an antihistamine eye drop is about the best. I'm still taking 10mg of prednisone daily and trying to get that down to 5, alternating 10, 10, 5, 10, 10, 5. I notice on the 5 day I have more symptoms, so I may go back to 10 and decrease the dose to 8 or 9 daily and see how that goes. I don't have 1 or 2 mg tablets, just 5's and 10's, so I'll have to get a script for the smaller dose if I decide to do that. I still itch all over, but at least I can tell myself not to scratch. The rash still flares, but I'm down to once or twice a week, or less if I can manage not to scratch.

I can't seem to manage Benadryl, it keeps me awake, but Zrytec helps me sleep and Allegra is not as sedating as Zrytec. Benadryl is initially sedating, but then I wake up and can't get back to sleep. Zrytec keeps me asleep until I wake up and have to pee. I can get back to sleep quickly while on the Zrytec, but not with Benedryl. I have no idea what the difference is in these medications and I'm to the point I don't even care any more. I'm very frustrated with this and I don't don't like to itch all the time, makes me depressed and I'm not sure if it's the medications or the itching.

I have no idea what's going to happen in the summer, and I'm trying not to think about that. Ha...a Hijab might be the only solution! I know when I'm outside in the cold or wind, I get itchy, when I get too warm, I get itchy. I was getting burning hot feelings, but since the combination of antihistamines, that's cooled down and I'm sleeping. It's absolutely annoying and frustrating.

I also have dermagraphic urticaria and contact urticaria, so pressure causes hives and skin changes. My support hose cause a rash, so I have to worry about wearing them and not wearing them. If I wear them I get a rash on my lower legs, if I don't wear them, my legs swell and hurt. At least the medications help that and I can wear them more now without too much problem, but they do still cause rash and itching, just not as bad. My watch will cause a rash, or itching. I'll smell something one day and it's fine, the next I can't breath and my nose gets stuffed, my eyes run. I have an air fresh plug in, which I've used for years, but now I have to unplug it sometimes.

It's just absolutely insane and sometimes I think I'm going insane and it's all in my head. If I didn't get rashes I'd think I was insane. I've also seen that my eosinophils have gone back to normal range since taking the antihistamines, but now my platelets are down from 250-270 to 148. That has me freaked out, so now I'm back to worrying about platelets. I don't know if antihistamines can cause a decrease in platelets. Anyone know if any of the histamines I'm on can cause a decrease in platelets.

Over the weekend I started with stomach bloating and pain, barely eating. My bowel movings are now completely different, yellow and floating, some formed, some not and urgent. So WTF is that now. Sorry, I'm totally done with this crap. Literally! Lol.. I'll give it another day and if that doesn't change, I guess I'll need to call a doctor and get it evaluated.

It just never ends...I hate autoimmune disease, it has made my life difficult and unproductive, annoying and frustrating.

Sorry, ranting...

I found it by Googling ITP 3yrs ago, after being released from hospital and given a basic leaflet about ITP along with being told we can fix this through a spleenectomy.
Thank god i looked on the PDSA page though, i almost didn't as PDSA in the UK is the Peoples Dispensary for Sick Animals!
The site and the people on it has given me the control i need in life, the doc's over here care about money and cuts so you are not necessarly given the best options. I was badgered for my spleen and thanks to the PDSA i still have it & it aint going nowhere!
Julia

Hi Samantha,

My name is Joya and I am 21 years old and I live in Amsterdam. I've been diagnosed almost 2 months ago with ITP. I feel exaclty how you do! Friends and familiy just don't understand. Every day they keep on asking How are you today? I feel like shit.. and then ten minutes later when I look upset they ask What's wrong? And I'm like :blink: I feel like shit.. didn't i just tell you that?!

I would love to mail with you, share information, stories etc. And maybe chat or something.

My e-mail adres is joya@live.nl.

I'd love to hear from you!

Xx
Joya

I agree - the whole ITP thing gets a little "old" after a while. Zach has been dealing with this since he was 2 years old and he is 17 now. It's been 15 years for us, with a brief remission when he was around 6. We have been lucky in that his counts usually stay around 75k with some dips down to the 30's; but he hasn't needed treatment since the early days, with the exception of prednisone for a couple months when he was in Grade 5. He is very active in sports and in the beginning it was scary. He plays goalie for his high school hockey team and in his PE classes, for him it's all or nothing. When I was working at his school, there was more than a few times I had to go and help him stop a nosebleed during class! But, like you all say, they hate being singled out, being different. Not being able to do what he loves, would probably also lead to depression, and since he was also diagnosed with Ulcerative Colitis when he was 13 I think he has enough to deal with! What really scares me is when he goes away to University, which will be in 1 1/2 years. At least at home I can say it's time for bloodwork; when it's up to him, not sure how often that will happen. And I can see him going to play a pickup football game with friends, not really thinking about where his count is at. Oh well, I guess we will worry about this when the time comes. Anyway, that's my rant for the day...

Shelly

Rosa - I'm with you on seeking more than the general ITP and pregnancy publications and broad generalizations. Although I like that they are encouraging and positive, I want to know if I would be in the small percentage that are complicated and pregnancy goes really bad. I've done the searching (the old forum is great for this but you ahve to take the time to dig) and still feel pretty positive that pregnancy is very possible with ITP.

Here's the most comprehensive study I've found. You can also look for the references:
bloodjournal.hematologylibrary.org/cgi/reprint/102/13/4306

This is one of stories that really struck me. It's basically exactly what I fear but at least we know someone got through it:
discuss.pdsa.org/topic.asp?TOPIC_ID=25728&SearchTerms=CSection

good luck

So Sam sorry to hear that you are having such a hard time. Your last paragraph there sounds like you might be getting depressed. You might try finding a release for your anger. We can all relate to feeling angry about losing time to this very annoying condition. But it seriously should not stop you from caring how you look or going out.

Long as you are avoiding juggling chainsaws or large knives going out might be helpful to your well being. If you have the energy to go i would be out having a good time.
Gotta live each day to its fullest. Seriously while this ITP thing is time consuming & very annoying if you let it take over your life it will.

Many of us here have multiple conditions and still live pretty full lives...

So you are saying that a low count can cause headaches,aching bones and joints and tiredness?My daughters are at 43 now and that is how she is feeling she is 28.She was dx with IPT when she was preg. with her son 8 years ago.

:S My count today is 41, almost back to 19, which is where it was on the day prior to surgery, before this recent wild ride began :silly: :woohoo: I am SO exhausted, and feel like my platelets have dropped even more since the test at lunchtime. Platelet headache, aching bones etc. I have another week with hospital appointments every day :S

Vanessa.

Does anyone have any experience of small (1/4 inch ish) bruises on arms and legs that seem to be symmetrical? There are not loads but enough for me to worry.
The background is that my daughter was diagnosed at 1 1/2 with ITP with a count of 10. It went up and down over the next year with no treatment and now seems to be in remission. Emily is now five. Ever since her diagnosis we have noticed terrible mood swings but could never get a medical person to understand. She still seems to me troubled by this but they no longer do blood tests as she is in remission and it was always very very traumatic for her. The latest down seems quite bad. She was absolutely great after christmas. A normal happy child. Full of energy. Funny and coped well with everything. All of a sudden at the end of last week she is crying at absolutely everything. She is grumpy and tired. She has shadows under her eyes and is just so different to before. This keeps happening but if I take her to the Dr they only see a child that is overall well and thriving and in a 5min appointment don't see what we have to live with that can really affect the whole family. I have given up with the Dr's trying to understand as I feel they just think I am making it up! I have noticed before when she is on a down she gets these small bruises but to be honest I have never really noticed if they were symmetrical. They are this time. She has no purpurra or pettichia and the bruises are not sore.
Does anyone else have any experience of this type of thing? I am at my wits end. When she is on a good spell I forget how awful it is when she is down.
Thanks so much.
Best wishes to you all, Fiona

Hi Samantha,

I have been dealing with ITP for almost all my life. I was diagnosed with it when i was about 5 or 6 years old, i'm just about to start Nplate, hopefully this friday if my platelets are low enough lol. They have to be under 30 for me to start it and last week they were 36. I'd be happy to chat to you through email, my email address is in my profile under the about me section if you want to send me an email.

i live in los angeles , where do you live?

Hello all! My name is Samantha, and I'm 26. I was diagnosed in October, after I went to the ER with a platelet count of 1,000. Since then I've been in the hospital 3 times and had 5 transfusions. I'm currently on NPlate, which (usually) works. My counts go way up, and then way down. A few weeks ago I was at 400,000, and then yesterday I went to the hospital with a count of 3,000 for another transfusion.

Basically, I'm looking for some people who would like to talk back and forth for support, mainly by email. I've discovered that, although I have not been sick for long, my own friends are busy with their own lives and have stopped being overly concerned. It's also difficult to connect with people who don't know exactly what you're going through. Even when people are sympathetic to me, I am dissatisfied with their meager advice. I feel that I would benefit greatly from making some new friends!

I feel like a loser sometimes, because even when my counts are high I'm not confident enough to go out and enjoy life. Most days, I make little to no effort towards my appearance because I feel that it doesn't matter anymore. I've stopped going out on the weekends because I'm afraid to drink, and I get irritated easily with people who complain about mundane things. I want to slap them, and tell them my story to remind them how lucky they are. My patience is running low!

If there's anyone who would like to be my modern-day pen pal, please contact me!

Love and platelets to all!

I began NPlate in December, and am still on it. I get headaches, and I have insomnia, but I've had trouble sleeping before so I'm not sure if that can be attributed to the NPlate. I've had mixed results, and will probably have my spleen removed in the next few months.

I began NPlate in December, and am still on it. I get headaches, and I have insomnia, but I've had trouble sleeping before so I'm not sure if that can be attributed to the NPlate. I've had mixed results, and will probably have my spleen removed in the next few months.

I was out for a half an hour today in the sun, my foster dog had a play date and I was supervising, I was wearing a winter hat and coat but my face and neck were exposed. Now I've got hives all over my jaw line and edges of my face, and my neck. I took a benadryl. I guess I just had to test it again. Am I supposed to start wearing a hijab when I go out? I guess when I have a job it won't be so bad, I'll be indoors working during the day.

So Kim, apparently the only thing to do is the zyrtec, and benadryl, and maybe I should use a litte pred when it flares? I'm seeing my rheuma in about ten days and I am going to ask about this and ask if I should see an immunologist.
Grrr. Erica

VERY SMALL WORLD. I think know where Norton is but I am not a Teessider so I am not sure (only lived there for about 5 years). Gonna ask my husband in the morning cos he has gone to bed. I think it is close to where the road comes off the A19 and goes to Stockton one way and Billingham the other. If you carry on that road to its junction with Durham Road, my mother in law is about 10 houses up in the Durham direction. So yes, not far!

Next time I am up your way I might take you up on that offer of a coffee.....

Ali

wow your mum in law lives less than 5 minutes from us. What a small world. You might know Zacs school it is on Norton Green called Red House so his classes are only small his year is two classes of 16 children and he will stay there until 16 they have been totally supportive. If you are ever visiting and can spare an hour you are more than welcome to pop over for a coffee.

All the best,
Nadia x.

Hi Nadia,

My mother in law lives in Stockton - Durham Road to be precise. When I met my husband I was living in Middlesbrough. If you ever see a medium sized boy covered in bubble wrap at Redcar or North Gare or in the park, you can be pretty sure it will be my son visiting his grandma - she is absolutely paranoid about him getting injured! In fact, I am going to tell her about you and Zac, because she seems to have made it her mission to find someone else with this illness ever since Dougie got diagnosed, and she still hasn't succeeded. And I would prefer to go to Hartlepool rather than South Tees Hospital too!!

Your hospital must apply different criteria to treating than Manchester - Dougie had 6 months of counts less than 20 when this first started, and he went down to 1 on a good few occasions. He did have prednisolone a couple of times, but mostly because our local hospital is so jumpy. The Dr at Manchester just doesn't do treatment based on counts. He is a haemotologist but specialises in ITP. The good thing is that he has a specialist nurse who came out to Dougie's school to explain about the illness.

I am also very refreshed to know that my husband isn't alone in his approach!!!!

Lots of luck, Ali

Hi again,
I have just had a little chuckle to myself new years eve big ben had just chimed the new year in, the champagne had just popped and I burst into tears saying its not fair that Zac has ITP and my cherished other half said its ok Zac will be back to normal soon. I'm not against the male of the species but i could of throttled him. Had he not heard a word I have said for the last 7 months. I'm sooo glad that I am not the only one that has to deal with ITP and daft other halves. We live in Stockton-on-tees about 2 hours from Manchester. Our consultant is a Dr Seerat and we go to Hartlepool for bloods, although there is a closer hospital they saw Zac within a week of his first low platelet count. Zac is used to going there for bloods so I am happy for him to travel. There is a haemo involved but I don't know who that is I just get told that the haemo is happy, not happy etc. If Zac goes under 30 they will treat him but I haven't gone there yet his lowest was 37 so far. Is your consultant a specialist in ITP i'm sure I read that there is one in Manchester.

All the best
Nadia x.