Itp treatments : Hi would anyone know... - ITP Support Assoc...

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Itp treatments

caralanmccool1 profile image
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Hi would anyone know if my platelets will go up, there sitting at 1 but I’m currently on rituximab treatment for 4 weeks and I’m currently on avatrombopag tablets for 4 weeks and I’m just so stressed and have no faith at all, just so scared Iv been in hospital for week now and just want home but platlets keep going up 4 and going back down to 1

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caralanmccool1 profile image
caralanmccool1
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11 Replies
Stateofdesign profile image
Stateofdesign

Possibly the most frustrating part of this disease is seeing how treatments affect everyone differently. I know that feeling of wanting to go home from the hospital - it burned inside of me the 3 different weeks I was in the hospital.

Accepting the uncertainty and staying present helped me get through it. As an artist, and tapped into all of the feels, and having been using the creative outlet to not only pass the time in the hospital and infusion chair, but also face my feelings. Here's some of that work I've done since. Maybe you can relate, and maybe it'll inspire you to creatively pass the time.

instagram.com/p/COSn8OMB5sV....

Kazpig1 profile image
Kazpig1

Hi hang on in there, they will find something eventually that will help you. I have had ITP for 7 years now and for the first 5 had platelets of 0 no matter what they gave me, I found this very stressful. Then they put me on a combination of sirolimus and azathioprine and wam platelets up-to normal levels within a couple of months. I did have a very stressful episode during my return to normal levels and my platelets dropped right down, they now hover just around a 100. Which is great for me. I have learned over time that the more stressed I get the worse my platelets become. So I try and be more relaxed about things. (Very difficult). When they find the right combination for you your platelets should go up, just hang on in there you will get there in the end

caralanmccool1 profile image
caralanmccool1 in reply to Kazpig1

Hi there yeah, it’s very stressful I’m on rituximab and avatrombopag tablets and platelets have went to 5 but just a waiting game to make sure they don’t drop back down but it’s very stressful and hurtful …. But I will get there in the end ☺️

caralanmccool1 profile image
caralanmccool1 in reply to caralanmccool1

It’s so good ur platlets have went up to 100 and are stable now am so glad for u

Nicebaps profile image
Nicebaps

Hi Catalan. Unfortunately there is no quick fix for ITP especially at 1. Mine platelets were at zero in 2017 and I ended up staying in hospital for 6+ weeks. Different treatments work differently depending on your medical background, for example I also have CLL. Have faith in your doctor's and in time you will see an increase in your numbers. I know from experience how frustrating it can be but hang on in there and all will become good. My platelets are now anything between 90 - 130 generally and I'm happy with that. Fingers crossed for the coming days that they start to go up and stay up.

caralanmccool1 profile image
caralanmccool1 in reply to Nicebaps

Hi there, aww yeah I understand completely it’s just a wait game and to have faith in the platelets and have faith in myself and hopfully soon they will start to improve its an awful experience but will get there and be strong again🙂 thank you so much

S38abcd profile image
S38abcd

Be hopeful I totally understand ur helplessness and yes different things affect people with itp differently.

It will be fine soon.

Its reassuring to know that people we don't know personally care n share our plight n wish us to be well

caralanmccool1 profile image
caralanmccool1 in reply to S38abcd

I am putting positive mindset on and hoping for the best

HOLCOTT profile image
HOLCOTT

How are they now ? Did they go up? Aim for 30 and be happy with tgat -unless yoy get awful bleeding ? Hope yoy feel better soon x

MaryAnnITP profile image
MaryAnnITP

ive had itp for 28 years. My blood type is O+. I have found stress definitely adversely affects platelets. Eating organic and protein enriched foods protein drinks and TONS of water. my platelets were 10k when i was delivering a baby. gammaglobin and steroids took me up to 48. i have hovered from 48k-72k for the last 25 years. I believe it takes 5 days for platelets to recycle. i have had great luck with blood builder mega food vitamin BUT only once they get over the 10k hurtle. I hope this was helpful. combine medical with homeopathic, yoga & meditation and acupuncture. Youve got this!!

joecirillo profile image
joecirillo

Hang in there. My platelets were are 1. Steroids did not work so went on Imugloblin. That worked and platelets went up to 105 on to drop to 4 again. I was in the hospital 3 week. I am on Promacta and last check they were at 202 so there is hope. They just have to find the right meds that work for you.

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