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

Oh I hope it's just a short term blip Kim from a reaction and its back up in no time. Sounds like your in a lot of pain, hope that gets sorted quick too. Get yourself under the blankies and keep warm. Take care
Julia

Right on!!! Happy Birthday!

Michelle

I'm hoping that this resolves easy and quickly for you Kim.

Do you have a good site that explains autoimmune uticaria? i quickly looked it up and it might explain what happens to me on a regular basis.

Michelle

Oh no Kim - good luck. I've had pleurisy from allergy to ibuprofen. Is it maybe part of the whole allergic reaction you are having to who knows what?
Erica

I'm not complaining, but....My count is down over 100k. I've been holding stead at 250-280 for months, but on Tuesday my count was 146. Kind of freaks me out a little bit.

I've been having problems with itching and rash, which is probably autoimmune uticaria. It's better after several weeks of 3 different antihistamine drugs. With the itching and rash, I've had itchy eyes, nose and burning inf lammed sinus, so I'm also on steroid nasal spray and Zrytech eye drops. At least the itching is better, because that was starting to make me crazy.

On Monday I was working on our taxes, sitting for about 3 hours straight, when all of a sudden I had upper back pain. I thought it was from sitting, because I do get stiff and painful pretty easy, so I figured I was done for the day with sitting and went to get a heating pad and lay down to rest. The pain progressed throughout the day and night, so on Tuesday morning, I was having problems breathing and chest pain. I called the doctor and he ordered me to the ER. I was really in a lot of pain, so of course with my history of PE, they did a PE work up, along with cardiac, because I was having shoulder and arm pain and the EKG was a little off.

The doctor ran all the tests and nothing, so diagnosed pleurisy. I've been having some mild pleurisy, but this was unbelievable and required Oxycotin to manage the pain. I have not had pleurisy like that since transplant and am discouraged and worried about it. I upped my prednisone on Wed to 20mg and have stayed at that dose through today, but tomorrow I'll drop down to 10 and see how it goes. I really didn't get any dose suggestion from the ER doctor and didn't call the rheumatologist, because I lost him last month and have not seen the new guy yet. I do have an appointment with him in early March, because the immunoogist who is treating the uticaria insisted I get an appointment with the rheumatologist. I see the immunologist on Monday, so I'll run it all by him.

I'm concerned because of the increased symptoms of pleurisy, the drop in platelet count, the rash and itching...it all just seems to indicate something autoimmune is going on and I hope it does not mean I'll be back to low platelet counts again, because that will make me worry about APS, ITP, lupus. So far my lupus tests remain negative or very low titers. ANA is negative, DsDNA negative, just a low positive Sm and RNP.

I think I'll have the immunologist run another CBC, so I can see what my platelet count is and hopefully it will be up next week. Wish me luck...

Today's is up again from yesterday to 858!!!

The other thing that is happening over the course of the past week of daily tests, is that my Haemoglobin is dropping, on Monday it was 140 and today it is 118 - not sure what to make of that!!?? :huh:

Sandi, I don't do normal!!!. HIGHLY unusual, I like the play on words :laugh: !!I have spoken to my Haematologist and he has explained what he thinks is going on, when my brain has regained some power/RAM , I'll explain it to you!

Now for more important issues.............Sandi, have you tried a Cadbury Creme Egg??


Vanessa :blink: :silly: :ohmy: :laugh:

Thanks everyone...

The big 50 for me.. Since I wasn't so sure I'd make it to 50, I'm overwhelmed and happy to be celebrating this milestone of a birthday.

We went out to dinner and a play, which was a wonderful way to celebrate with Jim. We went to see Late Night Catechism. Although, it was a newer version -- part 2 I guess. It was Late Night Catechism - Till Death do us Part. A hilarious one person show, as good as the first one I saw years ago in Chicago. This actor travels all over the midwest doing this show and she was fantastic as Sister.

Thanks for keeping us up to date on Steve's progress. It's good he's going to rehab, that will be a long road for him, but a good inpatient rehab center does a bang up job. I know when I was in rehab after the transplant, they were fantastic. I'm sure his rehab team will be great and he'll work to gain as much of his old self back.

mercaptopurine (purithol or 6-mp) is an older drug, although it could be effective.

I used 6-mp from 1993-98 or 98. It worked for me, but I did not get counts above 100. I was at about 70-80, but I've had a really tough time getting my counts above 100 for 24 years. I had minimal initial side effects, such as mild stomach upset, but if I took it with food, I did OK. If I remember correctly, it took more than a month to get my counts to the highest they would eventually end up and I do think the doctor started out with a low dose and increased. I did end up with creeping counts after about 1.5 years of using it, but the doctor increased the dose again and my counts went back up to the 70-80 range, but they did creep down again. Since I was at the maximum dose, my counts just continued to creep down, until eventually they wee only holding around 30k, so I stopped the 6-mp after 5-6 years of using it.

I tried imuran after the 6-mp, but it did nothing for my counts. I went through several immune suppressants and none of them worked as well as the 6-mp did when I started on it.

I hope it works for you.

It is a scary time, but as you learn more about ITP, you'll realize that 47 is a safe count. Information and knowledge will help you be prepared for appointments with your doctor. You'll have a better idea what options are available and be able to discuss them with your doctor.

Cold hands and tingling could be raynauds, which is another autoimmune disease, so be sure to mention this to your doctor.

I have gone from 20mg yesterday to 10mg today, so i'll watch myself carefully tomorrow, so far i haven't felt too bad, i got a really bad migraine last night but other then that i haven't seemed to have any problems. I have been on it for about almost 3 mths now since december and been on the 40mg for about a mth or so, so i don't know if that would be considered long term or not.

Thank you, Melinda! I'll check it out.

Its very unusual for kids to get treated in the UK unless they have significant bleeding (something more than bruising and petechiae). He is unlikely to be in pain, although my son says that the bruises sometimes hurt a bit. So my advice would be to keep calm, remain watchful and careful, keep everything crossed, and wait for an improvement! All the treatments have some sort of risks or side-effects, so if you can manage without, why take that risk, especially as most cases of ITP in children are quite shortlived and resolve themselves?

If however, you are worried about anything, take him to the doctor or the hospital - no point in taking risks unnecessarily or worrying yourself to death. It must be really difficult with a toddler - at least I can tell my son WHY he shouldn't be climbing or playing rough and know that he understands (whether he takes any notice is another issue entirely tho!! LOL). There is another poster (dbishop-Deanna) who is doing wait and watch with her pre-schooler, so she might have some good advice for you.

Good Luck, Ali

I'm no expert but for myself, I notice a lot of brusing when my platelets are low, so when you start to notice them fading and going away, usually they have gone back up a bit.

Prednisone is an immunosuppressant, so when your on it, you are at more of a risk of developing an infection. If he is not on any medication at the moment, then there shouldn't be much worry about keeping him away from public places.

I'm not in any pain when my counts are low, i do get fatigued more easily when they are low, but i don't get pain.

I know it is scary and can be overwhelming at first trying to deal with thats going on, but i find this support group a big help because i am able to talk to other members who are going through the same thing as me and it's good to know all the treatments that are avilable as your doctor might not mention them all to you.

Hope everything goes well and that they go back up themselves. A lot of the time in kids, the ITP resolves itself

Wow!!!

Hope you are both enjoying a bit of stress free time and that Tims count stays somewhere safe for the next while. All the worry must take its toll on Tim even if he seems laid back about it. Its been such a long time.

Ali

P.s. Am thinking that Dougie's platelets might have migrated over the atlantic to you, cos he is back to obvious bruising - haven't seen that since late october. Never mind, I am hoping its just a temporary dip.....

Hi Lauren, every time i tapered i was reduced to a shaking wreck on the sofa, feeling very sorry for myself and generally awful, one thing that helped was jelly sweets but i also put 2 1/2 stone on in weight so i dont think the jelly sweets helped that much! The big tapers were the worst 10mg week and if i remember right the day after the taper was the worst. Good luck you might not feel it as bad if you haven't been on the pred long.
Julia