Treatment options and coping with ver... - ITP Support Assoc...

ITP Support Association

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Treatment options and coping with very low platelets

Heacham2017 profile image
16 Replies

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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Heacham2017 profile image
Heacham2017
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16 Replies
Robert1959 profile image
Robert1959

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.

Pollyangel profile image
Pollyangel

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

dede7 profile image
dede7 in reply toPollyangel

I like this forum also

Heacham2017 profile image
Heacham2017 in reply toPollyangel

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

crissy22a profile image
crissy22a

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

Kyriak51 profile image
Kyriak51 in reply tocrissy22a

Patients with ITP can’t take antidepressants as thery WILL drop your counts. Platelets are involved In the transfer mechanism of serotonin, the lower the platelet count the lower the amount of serotonin available in your body. Most antidepressants interfere with platelet function and WILL drop your counts. Check counter indications in package inserts. Bupropion has the least negative effect on platelets. Most doctors know but may not mention because patients don’t ask:kyriak51

ManishJain profile image
ManishJain

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

Juljace profile image
Juljace in reply toManishJain

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.

nicoleeeeeeeeeeeee profile image
nicoleeeeeeeeeeeee in reply toManishJain

Hello! Do use a juicer for wheat grass?

Zaff profile image
Zaff

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

Bellazac1971 profile image
Bellazac1971

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.....🙂

NickyD profile image
NickyD

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.

Lynney11 profile image
Lynney11 in reply toNickyD

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.

NickyD profile image
NickyD in reply toLynney11

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.

Ethelbenny profile image
Ethelbenny

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?

bee798 profile image
bee798

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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