PDSA has a very nice booklet on ITP and Pregnancy. You can find it under the Products and Publications section/Free publications.

Hey Everybody,

Thank you so much for the quick and sweet responses! It feels great being able to talk to people who are going of have goon threw the same things as I am at the moment.

At the moment I am on my last two days of dexamethason and I have a new check up in 2.5 weeks. If my counts are still up by then I'll have to do regular checks to make sure they stay up but if they fall again the doctor wants me to try Prednison. I'm defenitly going to read more about Rituxan. It is a little bit difficult for me to read the iformation in English. My English is pretty good but I am to familiar with all the medical terms so I'm going to try to find the information in Dutch..

My biggest concern with having ITP is the waiting. Not knowing how what my counts are. I know it is possible that after this term of dex I'll be able to keep my counts up without medication. The thing is nobody knows for how long. I just do not know how to life with that uncertainty.. My counts have proven to be able to drop from a very good level to none in a week time and I am so concerned that my counts will drop in between two check ups. And I am the kind of person, ting always happen to me! I always fall during practise of get kicked or get a ball to my head. And i do sports 5 days a week. All kind of sports basketball, volleybal, football, dancing, american football.. This is al included in my study.. And apart from that I work in a gym teach aerobic classes and dance 10 hours a week next to school.. (at the moment I had to give up dancing because it was impossible to do with the medication)..

The ITP is constantly in my head.. Don't fall you do not know how high your counts are.. Watch out for that ball.. Don't pump into somebody.. It's making me paranoid and I just do not know how to get my mind to stop thinking about it 24/7..

My doctor agreed with me that this is not something I can really fit in my lifestyle and he is very open to my thoughts wich is great. Ofcourse he told me he would not get my spleen out any time soon.. He really wants me to try the Prednison first if my counts drop again.. (Wich I am really not looking forward to..) I know maybe I'm thinking to far ahead.. Maybe my counts will be fine for the next few months.. But I just can not stop thinking about it..

I talked to my mom about the different treatment options and we decided that I will try the perdnison at least ones.. And if this does not work I will get a second opinion to get the prespective of an other doctor.. I know it might not help to get my spleen out but if it does it would give me a much safer feeling to life my life and do the things I want.. Maybe it is just a mental thing.. Living my life knowing my counts might be low.. I just do not see how I can do that..

I just wished there was a way of messuring my counts at home.. That would make it all so much easier for us all.. If we could just messure our counts when ever we felt like it we could life our lifes being sure we are not taking any risks with our lifes!

Thank you all so much for the support it is really making me feel so much better knowing there are people out there that are willing to help me dealing with all of this!! I can not tell you enough how much better it makes me feel reading all your responses!!

Joya

nothing up in there

Is a beta blocker the same thing as blood pressure medicine? I've been on that since I was 25 as well. Will have to take that the rest of my life but I find that it helps with headaches too. I've taken myself off a few times when I ran out. The dr told me this is dangerous to do so I've been faithful at taking it for 3 years now. Mine are classified as an ace inhibitor though. Glad your daughter does ok with them! Three more days until Caitlin does the Rituximab! I hope she has no bad side effects!

well it started when i went to dentist in may of 09. dentist now screen before giving pain killers. my bp was 255/155 so dentist sent me down to the er. of course they did a blood test. first my potasium level was very low. so i get this all taken care of and im sent to a reg doc for montoring. doc takes blood and my white count is high and my platelets low so he said wait and see, same thing happened in july august and sept tests allso this time ive been showing doc my unexplained bruises. so in nov my values changed again and he finely says im sending you to a blood doc. on dec 18th i go to a hematologist oncologist. he does a blood test this time i get results on paper to read. my whites are high and my red cells and my platelets 81. so i go in for a bone marrow biopsy and no cancer. then i see the doc jan 4th and he says you may have itp. my platelets run 70 to 80 . he says i gotta get a carbon monoxide detector for high red count or its the smokes so i get the tester and quit smoking. i allso go in for a sonogram on liver and spleen. spleen fine but a hemangoma on liver so im in for an mri its only a birth defect. so i had to go get a colonoscopy for screening too and my female parts. the doctors agree for the colonoscopy a platelet transfusion. no cancer there either perfect colon. now its feb 21th and i dont go back to hematologist till april and no word if i got itp or anything

Well be going in to the office for injections. Tim has a way of avoiding meds, and going in to the office makes sure he gets his injection. He isn't experiencing any side effects so far, so its looking good. Hopefully, as you say, he will hold at this dose. I think Tim is his hemonc's first Nplate patient. He doesn't have alot of experience with it, it seems. But my boys tend to provide their healthcare providers with new and unusual training and experience all the time,lol. One with CHD and MS, and the other with ITP. My boys just don't fit in to the usual curve.

Wow! He is responding great to Nplate! With his history earlier this year, I was thinking he would be going up quite a few doses before he saw a good jump. I hope he remains at 50 or higher at the same dose. With Nplate, they only go up .01 mcg each week if counts are below 50 so it sounds like he is at .02 mcg now. We were able to inject her at home at .05 mcg. I think the general rule to self injection is that the count must remain at 50 or higher for 3 or more consecutive weeks at the same dose. Do you know if Tim qualifies ever for self- injection or will it always be given by a nurse? I hope he is still not experiencing any side effects.

Often, they give a big dose of steroids with surgery, to reduce inflammation and speed healing. Did they do this? Could it have caused the huge jump?

Marcus

Joya,
Don't jump to have your spleen removed just yet. You started on a treatment that does have nasty side effects, but can be very effective for some. Some folks here take dex five days a month and enjoy the rest of the month with good counts. (It didn't work for my teen, as it raised the counts nicely, but they dramatically crashed upon ending the med.) Some folks like prednisone better than dex, because the side effects, while nasty, can be less dramatic than with dex.

My teen was diagnosed just before her 13th birthday. The first few months of counts were low except when treated, and we really felt we were on a roller coaster. She was admitted to the hospital four times in one year. Twice was for low counts, and she had IV immunoglobulin gamma (IVIG); once was for a nonstop nosebleed, treated with IVIG; and once was for side effects of the IVIG. We like IVIG as a "rescue" treatment for severely low platelets, because she got several weeks of good counts, and usually plateaued after at a safer level.

Remission does occur, even in adolescent and adult females. About fifteen months after diagnosis, my daughter had a really good count with no treatment. After that, her counts stayed in a safe, but not as high as normal, range. Then, about two years after diagnosis, she had a perfectly normal count, and her counts have been normal or near normal ever since.

You don't have to have a normal count to be safe, but the count and symptoms do affect what you can do physically, and the risks you can take in sports. When Julianne's counts were in the twenties and thirties, she was limited to mild tennis, and walking or running on a paved smooth track. When her counts were over 75, she was allowed to resume volleyball (with a risk of a ball to the head) and basketball (which is very physical). She now does anything she wants.

If you get a splenectomy, you may find it doesn't work. (Many here have had a futile splenectomy.) Then, your treatment options for ITP are limited, and you have set up a lifetime risk of infection. (Antibiotics every time you have your teeth done, or minor procedures, and some have to take antibiotics daily for life, all because they have no spleen.) You have a spleen for a reason. If you can manage ITP and still keep your spleen, you need to try to do that. This WILL get more manageable and tolerable as you learn your body's way of dealing with ITP. The body often compensates on its own. We found that my teen soon tolerated low counts better than she did initially, and didn't bruise and bleed even at low counts. Also, vitamin C did not help her counts, but did seem to help with vessel integrity (meaning less bruising, less petechiae, less bleeding) when her counts were low. If you are prone to nosebleeds, keep nosebleed supplies (water, nasal spray, tissues) on hand, especially when you are in sports.

Hang in there.
Norma

Hi Vanessa, im sure it was Lib who had counts way up like yours for a while after the same treatment, I think it lasted a couple of weeks before getting down to a normal count range. Im not sure if shes travelling the world now, that was her plan. So, think of all the places you would like to see! I know what you mean about cadburys creme eggs, have you tried a walnut whip? i throw away the walnut on the top though-its too healthy :ohmy:
Julia

Hi Lauren, My Haematologist has prescribed asprin, it doesn't stop the production of platelets, but it does coat the platelets, and help to prevent clotting.

Has anyone else experienced a extreme increase in platelets after surgery? Anyone???!!!!

Vanessa :silly: :blink: :blush:

Up again from yesterday, but only slightly, not the big jumps of 100 plus a day like last week.......867!

Vanessa

Thanks everyone. Feeling a little better,although I'm on 20mg of prednisone. I see the immunologist on Monday, so we'll see how it goes with that and with tapering of prednisone. My upper back, shoulder and sternum still hurt but better with the pred. The headaches are better too. I just hate all the drugs. I thought that maybe one of the new meds was causing my platelets to be down, but none list that as a side effect, so I don't think that's it, although you never know with new drugs.

My sister threw me a 50th birthday party -- surprise! All the usual "over the hill" birthday stuff. It was fun, but I'm beat.

Tamar,
I'm a tax accountant, so I like taxes, although we owe this year, so could be that's the problem. If I asked Jim to do the taxes, we'd end up in jail.

Michelle,
I'm at my sisters, so I don't have a link available, but when I get home, I'll send you one.

and what is the treatment of evans syndrom

I'm surprised they haven't tried IVIG or Anti D as your counts were very low. They could have given you the dex or pred with these. It might be good to find out how you respond to these and how long they work for. They don't normally last longer than a month though. There is also Rituxan and it can give better, more long term results.

You're right to wonder how much to give of your lifestyle to this. It is a personal decision and a tough one. Don't let the steroids decide for you. They are the worst treatment for all your side effects.

Maybe think about trying Rituxan. Some of us here have tried many treatments and they didn't work and some have tried splenectomy and it didn't work.

Just make sure you're 100% comfortable with your choice.


I hope you find your answers.

Michelle

Hi Joya

Sorry you are going through this. I think you need to just take a couple of deep breaths and try to relax.

I don't like steroids either, but there are other treatments as well, there is a lot of information on this site about treatments, so have a read up of them. I wouldn't be considering a spleenectomy as quickly as you are, my doctor has advised me that would be a very last option for me, so i'd look at all the options and take my time deciding what is the best treatment for youself, removing your spleen isn't always the best option.

Hope everything goes well.

Hi Joya,
Glad you found this forum, read up on the ITP, relax and you will be fine. Steroids mess with your eating, sleep, emotions, body & mind. Just remeber these are side effects and you will get through it! Dont hit yourself if you can't do all your sports at the min it will get better. Docs seem to be amazed at people walking around with low platelet counts. You will become more experienced with ITP than a lot of doctors, you know your body and listen to it.
I was admitted 3yrs ago with a count of 9k steroids stopped working so i tried Azathioprine (Imuran) and my last count was 275k i refused a spleenectomy.
Take it easy
Julia

Welcome, Joya. Sorry you are going through all this, and sorry to hear about your Grandfather.

I waited 2 years to have my spleen out, and I am in the same boat as I was before I had it taken out. Being as young as you are, you might have a better chance of remission, but like Tamar says, there are other treatments to consider. What did your doctor say when you asked him/her about removing your spleen?

Take a deep breath and relax, believe it or not, it does/will get better!

Hello Joya,

I'm glad you posted. You will get a lot of good information from people here. I'm sorry you're having to go through this, and sorry to hear about your grandfather.

The most important thing to know is that you can get your platelets up--and if one treatment works, others might, too. Each has positive and negative things to consider. Steroids like dexamethasone can cause weight gain and depression. Dexamethasone also might push you into remission, so you might be almost done with ITP for a long time (or even forever). I'd say it's worth waiting and seeing what happens.

Yes, you can have your spleen removed, but most people do not choose to do that as quickly as you are considering. Why lose a part of your body when it might not be necessary?

I was on prednisone for 6 months, and it was awful. Then I used Anti-D for several years, just a few times a year. Then I tried a low dose of rituxan in February 2008. In September 2008, my platelets went above 100K, and I've only had one count down in the 80s since.

I chose not to have my spleen out, and now I am glad since my platelets are very close to normal. If I had not been able to get them there, I might've tried a splenectomy. I would not have made a quick decision about it though.

Hello Everyone..

My name is Joya, I'm 21 years old and life in the Netherlands.. Since we don't really have very active fora's on ITP in Dutch I decided to sign op here.. So sorry for the grammer faults etc.

This is my story:
I'm a first year student Lifestyle & Health (This is a study where we learn how to make different groups of people healthier with sport) I'm a dancer, and danced as a cheerleader for a few years. Overall I'm a very active person, I sport 5 times a week all kinds of sports and I hate to sit still.

During one of the sport lessons at school I god kicked. My enckle was very swollen and I decided to go to the docter since I was going snowboarden 1.5 week later and I didn't want to go snowboarding with an injury. I always used to have a lot of bruises but never really thought anything of them.. I am a very simple person and I don't like to go to the docter. In my dancing carreer I always learnt that when you're not dying you can still dance or sport.. So that's how I always lived my life..

So I went to the docter. For the first time in about 8 years. I never ever thought I would have anything. I just thought maybe she'll tape my enckle. When the doctor saw the bruise on my enckle and some other bruises she got worried and had me run some bloodtests..

I went to the lab for the bloodtests on friday around 12. After that I went to the hospital to visit my grandfather. When me and my boyfriend letteraly walked out of the hospital the doctor called and told me I emmediatly had to go the ER to get my blood testet again. She told me they could not messure my blood platlets and that they had to run the tests again because they actually could not believe my counts where so low and I wasn't sick or anything.

So I went to the ER and found out they could not messure my blood platlets at all.. In one test I had only 3k (I think that's how you say it in English) and in an other I had none.. SHOCKING I'm never sick not even a cold or anything and now there were interns comming to see if I was really sitting there with those counts.. They could not believe it.. So they started me on dexamethason for 5 days..

The dexamethason got me really sick.. Thank god for my sweet loving boyfriend how took care of me becouse I couldn't even walk the stairs on my own.. after 5 days my counts where back up to 92 and after a week I was up to 131. So I was allowed to stop with the medication and celibrate it in de snow on my holiday.. I did have a lot of withdrawls on my vacation but was still able to enjoy it. Snowboarding went fine I just had to take a nap every day and wasn't able to carry my own luggage or grossery etc.

When i came back from my holiday I felt perfectly fine! I was confidend my counts were great since I fell a lot the whole vacation and didn't even have one bruise! 2 days after I came back I had to go back to the hospital for a new blood test.. And my counts where back down to 23.. Again SHOKING.. the docter wanted to wait another 3 days to see if they would drop any further.. That wednesday my grandfather died very suddenly wich was another big shock..!! On firday my counts dropped to 13.. So back on the dexamethason.. This time for 3 weeks.. 4 days on medication and 3 days off..

This time I have different side effects but still they have so much influence on my life.. I am hungry all day!! Wich is new for me because I never really cared for food.. I already gained 2 kg because I can not control my eating.. I am also unable to sport since I almost vaint after running one round.. I feel like my life is passing by and I'm standing still watching from the side line.. I can not really have a normal conversation since I can not come up with words.. It's impossible for me to follow conversations with several people because it is to much for my brain..
I just feel like my life is on hold..

Now I'm on my last week of dexamethason and I have a new docters appointment over 2.5 week.. On my last check up my counts where back up over 300k wich is great!!! But we already new this would happen with the dexamethason..The only thing is.. how long whil they stay up for..

I really really don't have the time to be sick! I'm in my first year of school.. I have a very active life and now everything is falling apart and all I can do is wait and wait and wait.. Im also very scared.. even when my counts are back up.. I don't know when they are back down and they've already proven to be able to drop very fast.. with in a week they can almost disappear.. I now I'll be check very regulary but this can always come back.. I do a lot of team sports and quitting is NO option! Because that is my life.. I don't have anything to life for if I can't dance and play sports!

I talked to my docter about removing my spleen.. I just feel like this whole medical treatment thing is great for people who life a normal life.. People who do not sport several times a week and try to make a living with sport. My whole life is filled with sports.. and now I have nothing.. I already had a problem with depressions and now I feel like I'm in this black whole with np light at the end of the tunnel..

What do you think? Shouldn't I just het a splenectomy? I know it only helps in 70% of the casus but I'm willing to take that risk.. To me the impact of having to go on prednison of the dexamethason doesn't work for a long time (wich I don't tink it will) is way to big! It is ruining my life.. If they just take my spleen out I don't have to be scared all the time.. If I fall of get kicked or bumb into anything..

I don't see how I can life with this.. Please help me..

Kim, so sorry to hear you're having problems. I hope the lower platelet count (which is still great--you know that) is just a blip. Maybe you are alergic to taxes?? Can Jim do them?

I hope it all gets sorted out quickly and i hope you can get your pain under control quickly as well, take care of yourself try not to stress too much, good luck with it all and let us know how you get on.

Congrats on the big 50, It was my dad's 50th last monday and we just had his party tonight.

Wow, i can't believe they have gone up again, is there anything they are doing to try to get them down or just watching and waiting at the moment?

I have noticed that i am sure i have been logged on for more then 5 hours and i haven't had to log back in yet, so maybe they have done something about that

thats ok chick take care and like ya self oranyone feel free to leave message its good toknow that we are notall alone xxxxx much love x