Last reply 1 year ago
ITP

Hi, Ive already had lots of advice here so I feel a bit guilty asking for more but Im still weighing up DMTs. Lemtrada is clearly the best option in my opinion but the risk of side effects worries me – I think the majority are controllable but does anyone have any information about how ITP is treated? Googling it hasnt really helped and I wondered if anyone has any first hand knowledge of ITP? Thanks

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vixen
1 year ago

Hi there, are you worried about ITP or do you have it? My daughter has had it for 10 years and has been through 4 London hospitals in the pursuit of effective treatment. She manages her life well now. She is an unusual case in that none of the treatments she had could raise and sustain her levels to a safe level. However, for the last year she takes an oral tablet which is working well. Most people don’t have it as severely as she did however.

In her case, her immune system is so strong that it eats her platelets the second they are created. In others, their body just doesn’t produce platelets effectively. With really low platelets the main concern is that you can bleed heavily following a cut or injury. A blow to the chest, stomach or head means you should go to hospital in case there is internal bleeding you can’t actually see. Airlines don’t like to carry passengers unless their levels are a minimum of 30 although this depends on the airline. Dentists won’t do surgery or heavy fillings unless platelet level is out of the danger zone. My daughter needed an extraction once; she went into hospital for an infusion and her tooth was removed in hospital. She also suffered with some depression as a teenager; her doctor told us that low platelets can affect serotonin .

I’m sorry to give you so a lot of information, and I must reinforce that her case is quite unusual. For most people with ITP, it is a temporary condition and easily treatable. Even with chronic ITP she has gotten through Uni and is now a college teacher. She wears a medical bracelet and always informs her workplace/ friends that she has the condition. As with MS, in the last 10 years, more and more treatments have appeared. A good place to start would be your local healthcare trust or hospital website.

Good luck, and don’t worry, it’s just another fly in the ointment which is easily manageable!


molineux1047
1 year ago

@vixen thank you so much for sharing that and taking the time to reply. I dont have it, it just seemed the only side effect I found where treatment was that clear if a person developed it. Thank you so much for your kind message and good luck to your daughter too – she sounds as if shes done amazingly

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