Newly diagnosed, great timing!

Hi there, here's my story. Last friday I woke up having thousands little red dots all over my legs and some bloodblisters in my mouth. I first thought it had to do something with the stress for my wedding on saturday... After a visit to my doctor and a bloodtest I got a call that I had to report to the ER imidiatly, my platelets were down to 6. Luckely the hemo did let me go home with a fair dose of prednison, to get married the next day! I had imagined a slightly different wedding, but it was a great day anyhow!

Now reality kicks in. Our wedding trip is off until my platelets are above 30. Yesterday the count was 8, hopefully it wil get better soon. In the mean time I try to read as much as I can about ITP. This site is really great! It answered all the questions that did come up with me in the last days and more!

I'm from the Netherlands, and my hemo told me that if the prednison doesn't work after a few weeks/months, my spleen should be removed. On this site I read that there are some other treatments possible before spleen removal. Is ITP treated different in Europe than it is in the USA? Something to discuss with my hemo!

Sander:

Hello - sorry you had such a bad experience right before the wedding!

ITP is not necessarily treated any different in Europe than in the US. It all depends on what treatments you have available to you though.

Some doctors are very quick to move to splenectomy and that is either because they are not very familiar with ITP or they still believe that splenectomy is a cure. It is your decision whether or not to have the surgery; a person should never feel pushed into it.

I'm glad you are learning a lot, that is your best defense. Keep reading!

Welcome. Sorry to hear this had to happen right before your wedding!! I believe stress played a role in my ITP. Maybe stress played a role in yours and counts will bounce back. I would not rush into a Splenectomy. Once the Spleen is removed there is no replacing it and with out the Spleen, you are more likely to get a serious or life threatning illness. Counts can increase with a Splenectomy, but usually drop again and other treatments may be needed. The Spleen is generally removed if it is enlarged or ruptured. The treatments you may choose are your choice, so do some reading here and you will learn alot.

hey sander,

i also live in the netherlands and i was diagnosed with itp 4 weeks ago.
when i went to the hospital my platelets count was less than 4 (the machine can only count from 4).
prednisone didnt work, immunoglobine didnt work and i started peeing after a week. right now im getting shots of Nplate and my platelets count is now 5.

the rues in the netherlands dont allow for doctors to remove your spleen before 6 months because you can still be cured.

'Cure' isn't really a term used for ITP. 'Remission' is a bit more accurate. There really is no cure, only treatments that may cause remission.

So, back home from our honeymoon. We just left a week later then planned, but still had a great vacation!

My platelets went up from 8 on sunday to 17 on wednesday and then bounced up to 121 on friday, one week after I started the prednisone treatment! 110 mg a day seems to work just fine for me (male, 2.00 meters/6ft7inch tall, 115kg). Another week later the count was even up to 213, so my hemo decided to lower the prednisone to 70 mg a day. I didn't have a new count since then, but still feel good without any symptomes of a fallback.

I do experience some side effects of the prednisone though. I gained some weight and seem to lose some muscle tissue around my upperarms and torso. It also feels like there is some fluid in my lungs, wich makes me a little short of breath. But as long as the prednisone keeps my platelets up, I think I can live with side effects like these.

So glad your counts are up - great response! Sometimes they drop as a person tapers, so be prepared for that. Sometimes they also stay up, no telling how things will happen for you.

Prednisone can sometimes take a bigger toll as it is tapered. Some people feel fatigue, muscle/joint pain, depression, weakness, etc. It can take some time after stopping the drug to feel normal again. The best thing you can do is limit salt and sugar, eat healthy and try to stay active. It will benefit you in the long run.

It sounds like you are having typical side effects. I had the same ones plus. You don't want to stay on it too long because some of the side effects can be damaging. Good luck - keep us updated!