Treatment options and coping with very low platelets

My daughter has been diagnosed for about 2 years. Her platelets plummeted following immunisation & starting college. She is not coping with everyday life at all. People don't seem to understand. Don't know if she'll be able to continue to cope at college. The hospital have suggested we go in for discussions about treatment options. We are worried. Steriods- do they work for very long?

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  • Steroids can work for some people but often they are just a short term rescue treatment. They can have serious side effects if taken long term and most people find them unpleasant with weight gain, sleeplessness, moon face some of the short term issues that you have to deal.

    They are quite a lot of new treatment options these days such as (NPlate/Romiplostim, Promacta, IVIG, etc) so speak to your specialist about these. The general consensus though is not to consider a splenectomy as this is often not successful and cannot be reversed.

    Once this is under control your daughter will be able to cope with college so do not let her abandon this dream.

  • Hi... Ive just had my 2 year anniversary for my ITP diagnosis too.

    I only found this forum last year and it was a god send. ITP isn't well known.. it's difficult to get what seems to be a straight answer about what is going to fix it and when is it going away. I gained a wealth of information from people here... other people in the same boat. It's reassuring to know your not alone... or a freak. Reading the advice from others gave me a perspective on the condition... that has helped me start to manage ITP rather than it managing me.

    Does your daughter use this forum herself?... if she doesn't... tell her to come on and ask the questions that are running through her head... it'll help her hear advice from the community here xx

  • I like this forum also

  • Thank you. Yes I will get her to come on . Thank for the advice.

  • First of all get her on deloxitine. And look at depression and itp. When you dont have platelets you have no where for the seratonine in your body to bank . So if you take replacement seratonine. Otherwise she will never cope with this illness. Then get her on N.plate. that is theonly thing that worked for me . If you possibly can . Depression is one of the side effects with itp. Go on line and reach t honestly you will be shocked. None of the doctors mentioned it. I found it out myself. Good luck . It saved my life .x

  • Wheat grass juice along with aloe vera will help.Green shots with fresh fruits.

  • Manishjain....I do the same. Shots of wheat grass and drink aloe vera. I started taking magnesium before bed to help me sleep as well. Taking a nap in the afternoon helps too.

  • Hello! Do use a juicer for wheat grass?

  • Steriods were a disaster for me, they made me so ill and I had horrible symptoms for months after coming off them, my haematologist said they could only be used for a few months at a time and both times I came off them the ITP returned very quickly. I have had treatment with Ritubimax (about 11 months ago) and my platelets have risen from 2 to over 200 in 11 months, I know its only remission but apart from side effects during the 4 weeks I was having the treatment I have had no problems since apart for being a bit more susceptible to colds and infections

  • Hi Heacham2017

    We have a daughter in the same circumstances although possibly a little younger than your daughter.

    We never know from one day to the next as to whether she can get to school.

    She has tried steroids. An incredible climb in the first week only to be followed by a crash the week after. If you look back at some of my older posts you'll see the ups and downs of her life as a 13 year old.

    She is currently being weaned off Prednisoline but has started a weekly antibody infusion using rituximab, next one is tomorrow.

    Please feel able to message me as it might help both our daughters and us to talk to someone in the same position.....🙂

  • Never underestimate the fatigue you get from having ITP. It can be quite crippling. But if you find the right treatment then it does get better.

  • I have been quite surprised at the number of ways Itp can affect different people. I have never heard of the fatigue aspect as I have never suffered from it even tho , with treatment my counts varied from between 30-100. Also I am surprised at the number who do not receive any treatment although their counts are below 30; this was the stage that treatment began for me. I suppose it all depends on which country you are living in and the specialist who is treating you.

  • Some people can manage a healthy lifestyle on counts as low as 10. Some dentists wont treat you if your count is too low. I have had a count of zero and was told not to brush my teeth in case my gums started to bleed. Rather scary. Take care.

  • Definitely get the serotonin replacement. It is a side effect my son suffered from too. He did two years of nplate shots and then went into remission. Hopefully it will work for your daughter too. Does she have a hemonc close to her school?

  • She will have various options to go thru. She will be starting with the corticosteroid method. It is safe and have sideeffects, however, staying positive throughout the modalities are the vital part of the treatment

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