ITP Rookie

Hi!

For several months I was seen sporadict bruises on my skin maybe like 7 small ones so I go to my doctor and my platelets where in 35,000 the first time and a week later 31,000. All the possible other diseases that cause low plateles where negative in the blood test so the doctor says I have ITP.

Now Im on my second week of Dexamethasone 20 mg for 4 days a week and a weekly blood screen. My platelets go from 31,000 to 84,000 on the first weekly course of Dexa which was awesome! but im a newbie and dont know what to expect in the long journey. I always was a healthy man but im positive and I want to learn.

Im glad I found this place.

:side:

Hello! You are still a healthy man, you just have lower than normal platelets. We can't tell you what to expect because everyone responds differently. Your counts could go up and stay there, or they could repeatedly drop and require additional treatments. The majority of people go down the treatment line until they find a treatment that might cause remission. Sometimes Dex does it, sometimes it doesn't.

You will learn a lot here, so stick with us and yes, stay positive!

Update!

I was diagnose with ITP in the first week of June 2011. My first treatment is Dexamethasone and my platelets went from 30 to 124 in the first 2 weeks but there been decreasing for the last two weeks from 124 to 80 and yesterday 54. Im avoiding the use of another corticosteroid for the moment and try something more natural.All this will be consult with my hematologist first.

I read in the Natural Treatment Method forum about Papaya Leaf Extract. I just ordered mine. I have to try this for sure. I read very good reviews about it on amazon.

Here you have the links of amazon and also the manufacturer who have a bigger bottle that I didn't see in amazon.

www.amazon.com/Papaya-Leaf-Extract-4oz-1...310182837&sr=8-1

stores.iowaselectherbs.com/-strse-9/Papaya-Leaf/Detail.bok


I will give an update of my results later.

+++++ vibes!

The secret is simply "just to go with it".

As Sandi says everyone responds different to different treatments. You may well respond fine to it and not have another drop. I have had my spleen removed and have had about 8 different known drops since 1996. It hard to know when one should ring and sometimes hard when one has to give things up at the drop of the hat. You can wake up okay and yes feel okay. Few hours later the tell tale rash appears and you know you got to ring.... The rest of the day gets put on hold. That is the hardest for me and it is simply questioning whether to ring or not.

Everybody experiences their own 'thing' with ITP and I always feel a little bit of a cheat in a way because I get nothing like what gets reported on here. People who have a cold are more 'ill' than I am with ITP. But things to do with blood kind of worries people don't it?

I wish we all could some how club together and write a book about combied with fiction and non fiction to get it out in the open more.... how about it guys. Any funding could go to this website etc to save arguments about royalties etc.....

But yep for me apart from last year when they questioned brain bleeds, my only real fear is when to ring the hospital because its 16 mile away and its a drop of the hat event when they say come through. an hour for the blood test....

Last count was 32 but that could be up by now? Or back down? I used to have IVIG as well as prednisolone but the present consultant not doing that route easily. Which kind of sucks because it now means I cannot go abroad for at least a year after the last steroid tablet because my travel insurance company now saying no to people on steroids. So much for me gloating about the term remission never being used on me:cheer:

There actually was a book that was published that had multiple stories about people with ITP. I can't find it on the site...it was about six years ago. It was a combination of people mostly from this site.

sounds like time for another one then. Though am more than aware of costs in England though ebooks differ.

Make it a true international book as there are a few of us from around the world here and if luck could have it the book be on sale in our respective countries too....

Hi cacikepr,

Like you I am pretty new to this, getting diagnosed in late May. I know it's hard, especially early on but try and don't get to fixated on the counts each week. I've been fixated on mine and have slowly learned to let go a bit because it was driving me nuts. I was on pred but responding mildy and after 3 weeks only up to 80k so a month ago got put on dex. The next 3 weeks my counts were: 170, 96, 59. Today I had blood test and thought it was going to keep dropping but somehow it was at 125. Looking at my hema incredibly confused today, she said that a lot is still unknown about ITP and numbers can unexpectedly bounce up, though she also cautioned me can crash unexpectedly as well and that while being low isn't ideal, as long as you keep above 30 they tend not to treat but just be careful.

Good luck cacikepr and keep us posted on how the natural methods pan out.

-Andreas

Hi,

Thanks to all for your responses. My blood test today show 77,000 platelets so that's good news. I think this is going to be like a roller coaster but Im coping with it. Next week I will see my hema to see how we are going to proceed but I want to discard the corticosteroids for the moment and see how my platelets behave without treatment. Im doing research on natural treatments besides the one I mention before and also considering to visit a well recommended naturopathic doctor.

+++++ vibes!