Whill they stop dropping?

Hello everybody!

I went to the doctor yesterday.. And don't really know what to think..

I've been treated with dexamethason for 3 weeks.. (I think you call it decadron in English) I finshed the treatment 2,5 weeks ago.. My counts where 334 when I stopped taking the dex.. Now 2.5 week later my counts dropped to 154.. Wich ofcourse is a great count.. But I'm just scared they will keep on dropping.. My doctor had the same concern.. I have a new appointment friday 2 weeks from now.. To see if they kept on dropping..

If they are low by then I'll probably start Rituxin.. I talked to my hem. about it and told him I really don't want to take Prednisone.. Wich he completly understood after seeing my fat face of the dex. He told me that if my face gets so fat after 3 weeks off dex. I'd probably get even fatter on prednisone.. (Besides from all the other side effects)

I also talked to the hem. about SLE.. My aunt has it and my grandmother died off SLE.. So I'm really concerned I'd might have or get it to.. My hem understood and said he couldn't really say anything about it.. As for now I don't have enough symptoms so even if they would find ANA in my blood they still wouldn't treat me for SLE.. So he didn't want to test for that just yet..

Waiting waiting waiting.. Instead off ITP they should call it WWW, waiting waiting waiting..

Xx
Joya

Joya:

It's impossible to know if your counts will continue to drop. One thing I can tell you though, is that many of us have been surprised at times.

As for SLE, testing your ANA wouldn't be a good idea now anyway because steroids can lower the antibodies and you wouldn't get a true result. I was diagnosed with ITP for 8 years before my Lupus symptoms began. ANA was not positive for the first few years of ITP. Hopefully, you never have to cross that bridge.

Joya,
I started seeing some of your posts and can really relate to a lot of what you're feeling. I was diagnosed just under one year ago at the age of 29, and I continue to have these wonderful people on this site tell me that things get easier and that you'll learn to manage your ITP. It's difficult when most of your life revolves around sports and activity and suddenly your life completely changes. I too have been struggling with staying positive and trying to feel normal by enjoying the intermittent bursts of energy. I'm a runner and have struggled with major fatigue over the past year, but just try to make the most of it. I don't have a ton of advice but I just wanted to say I'm glad you found this discussion forum to help you understand you aren't alone, regardless of how lonely it feels sometimes.

Good luck on your counts this week!
Jess

Jess,
Thank you so much for the post! I know things will get easier.. But atm it just seems as if everything is falling apart.. Not only the ITP thing but my whole life seems to be one big disaster atm.. Oh well.. It can't possibly get much worse, so it should only be getting better from now..

How are your counts doing? And how have you managed all the changes in your life over the last year? For me not being able to do the things I want.. Not being able to sport or dance really makes me depressed.. Dancing is my moment of freedom.. Where I don't have to think.. It gives me peace.. Atm I'm to tired to dance.. And it's frustrating.. I tried to make a choreography a couple of days ago and there's no point in trying.. I just get mad at myself for not being able to do it.. Same goes for going out.. I love to go out and let loose all night.. Just dance dance dance.. My friends just keep on dragging me to clubs and everytime I think oke let's go.. Maybe it'll be fun.. I can use some distraction.. and then when I need to go home at 01.00 cus I'm to tired (eventough I slept 4 hours before going to the club) just makes me soo mad..

Life's unfair..

Hope you are doing well!

Xx

I know it isn't fair Unfortunately I think I feel like I don't always have positive things to say on this forum because I usually only visit it when I'm really down. I apologize in advance So I had a really tough day at work, had to visit the dentist today, and tomorrow is my weekly meeting with my hemo to check my count and get an injection of Nplate.... I feel like I wish everyone would just leave me ALONE!!!

So over the course of the past year, I've tried:
WinRho - no sustained response (May 2009)
IVIG - no sustained response (June 2009)
Dexamethasone - no response (July 2009)
Rituxan (8 doses) - no response (July 2009)

Currently
Plaquneil - response debatable but hopeful so I continue (November 2009)
Nplate - increased dosing over the course of 3.5 months (August 2009) from 1 mcg /kg to now being on 7 mcg / kg

My platelets have been fluctuating since December - but for the first time ever they had been fluctuating in a normal range 150 k - 400 k but we can't seem to make it stop fluctuating, even if we change nothing. It's been really strange. But since I can ride my bike, I have no petichae, or blood blisters in my mouth, it's been really nice. Last week however I dropped to 50k. It's been a really stressful couple weeks for me at work and just in life which I know affects my count, but I just can't help my stress levels! I wish I could!! I started training for a race that I've been determined to participate in, and well I've just had no energy over the past couple weeks. I think I will still participate (April 17th) but I will not push myself to high expectations. Just thinking like that is difficult for me, I love to run and to compete. And now dealing with not having the same body - although it sounds vain, is just not an easy thing to deal with, I understand! Not being able to dance has to be torture, and I think starting to come to terms with a disease when you are so young first of all just isn't fair but is also angering. I feel like I am angry all the time and I a lot of times take it out on my significant other. He is so generous with his love, I am so lucky some days that he even talks to me! I know what you mean about getting mad at yourself for not being able to do some of the things that you used to be able to do. Gosh I all I can do is hope that everyone who says it gets better, is actually right. I think it's different for everyone. I wish I was stronger, and more positive, I truly work on it every day; but not everyone can do that. So, we accept that each of us is different and help each other through the times they are going through the only way we know how. I'm here to listen, if you ever are seeking a response from me and aren't getting it, or just want to vent feel free to email me!
Keep me posted on how your counts go, and I will do the same. Keeping my fingers crossed for tomorrow.

Jess

Hi Jess,

I'm not a very positive person either.. Never been though.. I already suffered from depresion before I was diagnosed with ITP.. But thankfully I can go see the psychiatrist on friday.. I just think I could really use some help dealing with this.. And my familie has been great en my friends en classmates.. Everybody has been great.. but I sort of feel like I should where a mask when I'm around them.. Nobody wants to hear me wine day in and day out.. Me and my boyfriend broke up on saturday after 2.5 years.. Wich sucks.. But life goes on.. it didn't have to do anything with me being sick, but I'm pretty sure that if I wasn't sick we would be able to work it out.. But just as you I take my anger out on the people who are close to me.

I hope you'll be able to participate in April! That would be a great distraction..Please keep me posted on how you're doing!

Xx
Joya

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