ITP suffering

[TM05]

Hello , 

I am 31 and I am suffering from ITP since 2014!

It's going to be nearly 2 years .

I took steroids ( predisole ) and now I am taking revolade . But still my platlets are on 20-40.

I am not sure why ? Could someone help me , I am suffering a lot and it does effect my life style .

I am kind of loosing my hope in this . I would much appreciate if someone maybe could give me advice what else I can do ? 

Many thanks

My email : [e-mail]

[Mal1]

Good morning,  I am so sorry you are suffering too. My husband has had ITP since 10/2015 and has gone through so many treatments that has made him totally miserable, only to see with each his platetes count drop back to 3,000. We try to remember that everyone is working to help and support us. The pdsa.org is a great place for not only information, but to find support. Last week as the caregiver I got so down I posted on a group and the outpouring was so strengthening. It was the Facebook group purple people for itp. I know this ITP is not one to be easy to deal with. Hang in there. Hugs to you

[TM05 in reply to Mal1]

hello Mal1, thank you for the message, sorry to hear that.

Did your husband did a special diet or any herbal medication?

[Mal1 in reply to TM05]

Yes we tried herbal and diet to no avail. What keeps bruising away is Nplate injections weekly.

[TM05 in reply to Mal1]

which herbal diet did you do?

[dede7 in reply to Mal1]

I have been using pomegranate extract and I think that has been helpful for bruising

[dede7 in reply to Mal1]

I use PDSA website for support too

[sailor]

Hi. You do not say how the ITP is affecting your life style and why you are suffering. I have lived a normal life style for over 10 years with a steady count of 10 and no medication except when I have had surgery like my heart by pass 2 years back. If you do not bleed, don't get hung up on the count. It is only a number, many people like me live happily with a low count. I have an annual check with my haematologist and get on with my life.

As to the medications, it is down to finding one that works for you, but the last thing you want is to take steroids for a prolonged length of time.

[alice_sportyauthor in reply to sailor]

Me too, thy spent three years trying to 'fix' me. But apart from some ugly bruises and tiredness I was fine. It was only when I was medicated that I felt rubbish. So I negotiated and they agreed to leave me alone. To begin with I had to have my bloods done at the GP every six months (might even have been 3) but even that gradually declined to only if I was worried as me and the GP got used to what to worry about and what not to worry with.

[palash199 in reply to sailor]

Hi sailor my sister surface itp. She is now 22year old. We know its her 20week pregnancy her count 2. Then doc started steroid but not work. 32 week doc withdraw her baby boy give ivig but one month later her count drop 3but b

[Billmox]

Hello,

My last blood platet count was 19, and the one before that 4 months ago it was 20. It has been 20 to 25 for the last 36 years.  I am on no medication at all for my chronic ITP, my hematologist has said that IF I start bruising or bleeding I can contact him.   All I am saying is that unless you are bruising or bleeding and apart form avoiding contact sports and being aware of what might be a risk, you can lead a normal life.  Just as Sailor has advised do not worry on the number.

Regards 

Bill

[Milane]

check out pdsa.org website. it's for all itp patients. all of the topic you need to know are there.

[NickyD]

Hang on in there.  It is only by trying all the different treatments that you will find the one that works for you.  I tried six before the seventh worked for me.  it is a roller coaster but we have been there and want to wish you all the best.  Nicky

[Zaff]

I was diagnosed last November, steroids didnt help much and after I suffered severe internal bleeding early this year with a platelet count of just 2 my consultant suggested a course of IV Ritubumax, the side effects were awful for the 4 weeks I was on it but my latest platelet count was 95, and if my next count is OK it will assume its worked, fingers crossed

[mahin456]

Hello I am also on Revolade for 3 yrs now. Just have to manage a safe count. You can email me on my Gmail.                 Mahinder.Ranawat @gmail.com

[TM05 in reply to mahin456]

hello mahin thank you so much for ur message.

Revolade are not helping me much, I am always under 50, did u tried any other herbal medication or any special diet?

did u also take prednisone?

[ellaco]

Hi I know how you feel, I was diagnosed last july , just after landing my dream job, nothing they have tried has helped and i have had to give up work, because my count is so very low, I went for 6 weeks with not registerable count.

 I am a postive person most of the time,and I keep trying to look for the good in each day. some times it is so hard, he you ever want a chat and we can support each other just send me a message.

[TM05 in reply to ellaco]

sorry to hear this...

which tablets are you on ?

[ellaco]

I am on Urssdedxycholic acid three.times a day