Stay positive x

Hi I had itp years ago and after so long thought I was home and dry. It has returned however, I'm trying to be positive. I have debilitating fibromyalgia which is making it a struggle. My antibodies are on a mission destroying my platelets . Predisolone no good, ivig no good , platelets at 9 .so starting rituximab, hopefully it will do the job. I want to get better for myself but more so for my husband and daughter who have been superb support. Anyway kind thoughts to you all and wish you a speedy recovery. X

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  • Hi Olivia. I hope the medication works for you and you will be stronger again.. You are lucky to have a great family to support you, mentally sometimes I find it a struggle, because my friends look at me and say that I look fine and there's nothing wrong with me. I feel like a burden to people, I know I should not be thinking like that.. Best of luck again

  • Hi thank you, my name is Jade , olivia is my daughters name. She's is precious to me, she became a young carer at the age of 6. She helped my husband take care of me so I could be at home when I was bed ridden. Which totally knocked her about. She's 15 now so is coping better with me being unwell. Sorry to hear about you. Yes because we're not rolling round the floor screaming, people don't seem to realise how poorly you are. Hope those people start to understand so that you can get the support you need. Take care. X

    Ps in your case what is causing your platelets to drop ? Is your treatment working ok ?

  • Thank you for your message. I don't know what's causing them to drop and I'm not on any medication as my doctor won't prescribe any,.. I'm eating really healthy and I'm also on a gluten-free diet which helps me to stay strong.. I play as much football with friends (non aggressive) unless my energy is completely gone.. Low energy low platelets, then I don't play in case of injury

  • Your not a burder to people it is unfortunate you are fighting a invisible illness what I tell people with not much information out there : ( just because we fine fine does not mean we are take care and I know it is a cliché keep strong :)

  • Thank you, I just go through phases I guess.. Normally I don't care, it's just when my energy is low it creeps in unnoticed to myself, I snap out of it fairly soon afterwards..

  • I know I too find it the energy levels : (

  • Onwards and upwards, but unless people are in our shoes, I don't think they can possibly understand how difficult it is. At least we know we're not alone. Xxx

  • I believe we're all doing our best to take in our stride x

  • Keep your chin up I find positive attitude helps, there is always someone worse off than us 👍

  • Yes you're absolutely right, there are people who are worse. But also there are many people (including all of us with itp ) Who just don't deserve it. What upsets me is, my husband and daughter are affected . Anyway as you say Esh

  • My ITP has also returned after long time - nearly 9 years. IVIG and prednisone didn't help either but rituximub did! Best of luck, hope it puts you in remission.

  • Thank you, that's really kind. Trying to be positive, not just for my husband and daughter,but myself . It is difficult, because you think treatment will work, then when you're told you're not responding . Anyway taking it in my stride. Ps how are you at the moment ? Take care x

  • Yes, staying positive is of a big help too! I am in remission so far, 3.5 years later, touch wood.

  • Best of luck

  • Thank you!

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