No symptoms! frustrating!!

Hi, just an update really, had this bout of ITP since start of September with a count of 10. Only symptom I had then was a 3 hour nose bleed. Since then I've had the standard steroids but wanted off them quick so I've been having weekly blood tests and injections of Nplate as required. Levels really have been up and down had counts up in the 300's 2 weeks in a row then plummet. This weekend I had count of 15. But again, no symptoms!! Its so frustrating. I felt great walking into hospital.

In my first bouts of ITP I had bleeding, bruises and tiredness, now nothing at all!

After discussions with doc we are going for the Nplate solution over a few months. If that fails will try Rituximab again. And if that fails then its spleenectomy for me. I'm preparing for it now by taking my injections and immunisations I need before, just so we don't hold up any operation.

7 Replies

  • Why? Many people seem to be asymptomatic with low counts and don't take meds or have a splenectomy. Do you know if your platelets are being destroyed in your spleen or your liver? If the latter, then a splenectomy won't work. Have you had the Indium test to see where the problem is?

    My count fluctuates between 20 and 40, but until it is consistently under 10, nothing will be done, and maybe not even then, if I'm not bleeding. Another poster on here, Sailor, has a count of about 10, and no meds, travels etc, but knows to keep a watchful eye.

    I know the docs are medically trained and we are not, but if you have no symptoms and feel fine, do you need the meds, given the side effects? Have you tried to see what your count is without them? Sometimes my count is low, but I feel fine, whilst my GP is panicking and tries to pack me off to A&E, which is pointless, as the count has normally changed in the meantime.

  • I agree with scaryteacher. If you are asymptomatic, is there really a need for meds?

    I totally get your frustration. I was diagnosed this August, 18-day hospitalisation, way too many platelet transfusions, steroids and rituximab... none of which seem to have worked. My count has yoyoed between 1 and 130 in the last few months. I changed doctors and the new one has adviced a wait and watch policy. He says he prefers giving treatment by looking at the patient rather than the paper (CBC). According to him, even if the count dips below 30, as long as there are no symptoms, treatment is not required. I've just been adviced to always carry around an SOS strip of tranexa in case of any sudden bleeding.

  • Meant to say also, I've had ITP for 21 years now, and the meds I've had, have been for raising my count for a GA.

  • I think the doc is treating with a mind on my history with ITP, and looking at my levels.

    Before this bout I used to be a 'bleeder', lots of nose bleeds, lots of 'blood blisters' in my mouth, and a fair bit of rash over my body. This time very little rash, and no bleeding until I get to around 10 it seems.

    I think he's looking at my levels too, they've gone from 340 one week to 143 the next to 15 the next (no meds between those, only at 15). so i think he's looking at the trend and thinking he needs to intervene.

    I'm definitely not have a spleenectomy any time soon, I've made that clear!! i am just have to injections so if in the next year or so we decide to have it after trying everything else, we don't hold up the op for no reason.

  • I was on a high dose of steroids for 3 months , they briefly raised my count to 22 but it went down to 7 so they were stopped. Splenectomy was discussed but having your spleen removed is no guarantee that your ITP will be cured as the liver can take over the distruction of your platelets. Also having your spleen removed means having to take an antibiotic every day for the rest of your life. If my count had stayed in the 20's my doctor would probably have just monitored my condition but I was given Eltrombopag and have been on it for 2 years now. My main concern is the long term effects of the drug but have been told it's low risk. For now my count is stabilised in the 80's and 90's . I'm 62 and lead an active life with no side effects. If I was not taking a tablet each night I would probably forget I had this condition. Long may it continue as I know there are some ITP sufferers who are not so fortunate.

  • Exactly try to avoid medications. Because somethings are natural and when you are going to fight with nature made things. result will b bad. So live life. n avoid medicine. Until u have anmy bleeding .

  • My haematologist said treat the symptoms not the platelet count. I've read that elsewhere too.

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