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England and Wales ITP Patient Support Group Meeting January 2024
This is the recording of the England and Wales ITP Support Group Meeting that took place on Thursday 11th January 2024 with Dr Will Lester and Dr Gill Lowe, plus Mervyn Morgan ITPSA CEO and members of the ITPSA Board. You can download a copy of the Shared Decision-Making document for FREE from the ITP Support Association website at https://bit.ly/3lNsdKe Our ITP Discussion Guide is also available to download from https://bit.ly/3RlOiye If you require a hard copy of the above mentioned documents please email firstname.lastname@example.org your details. A few items to be aware off, we have out ITP Scholarship Fund, you can apply for a grant by sending us your ITP story, for details go to: https://bit.ly/3qmyCmg There will be lots going on during ITP Awareness Week (from 25th September), keep checking our Social Media Channels and website for details. For anything else please visit our website at www.itpsupport.org.uk
Here is a selection of some of the key points raised in the meeting chat.
Dr Gill Lowe: My perspective on the Covid situation is that it depends on a number of factors – pattern of ITP presentation and relapse, immunosuppression, and other medical conditions. I have tended to discuss eligibility with our infection control team, and it has helped when I have known patients well and been able to explain the risks.
Patient: There’s a dedicated phone line for anti-viral that i rang. Unless that’s only in Wales. I phoned it when my elderly parents had covid, but they weren’t eligible. They said i might be eligible due to ITP treatments and if i tested positive to report it as positive online then I would be phoned to have the anti-viral couriered to me. I didn’t test positive though so didn’t pursue it.
Dr Gill Lowe: In our own Trust (Will and I work in the same one) we can get clinical advice from a team who look after infection. For my own patients I have discussed things with them.
Patient: Just to put ITP in perspective, it is a rare disease and there are over 6000 rare diseases, it is also an auto immune condition of which there are over 80.
Patient: Has anyone ever taken eltrombopag? For the past few weeks, I have been in and out of A&E with a platelet count of 8,000, even after being on prednisone for 2 weeks. I’ve only started taking eltrombopag but just want to hear something is going to work!
Patient: I’ve been on eltrombopag since Sept. Started on 50 mg but then had crash (which may have been because of Covid) and then increased to 75mg (max dose) daily. No real side effects. Platelets are still fluctuating – sometimes as low as 17 but no bleeding – but my Haem consultant Dr Cooper at Hammersmith – is happy and so I am.
Patient: I took eltrombopag when I had heart bypass and it worked very well but sadly not all medics work for everybody.
Dr Will Lester: A large study looking at millions of patients given AZ showed a small increased risk of ITP. To balance this, COVID infection is also a trigger for ITP.