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TOPIC: hating the side efftcts

hating the side efftcts 2 years 6 months ago #56608

  • anamika
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hi.i am 14.i was diagonosed with acute ITP 2 months ago.when we got to know my platelet counts was 10k.my parents immediately brought me to the hospital.i was given IVIG.then the doctor started steroids.i am having blood tests every week to check the platelet count.i am hating the side effects of steroids.it has ruined my life.my face was in so much perfect shape before and now it has swollen so badly.some children in my class asked me how i became fat.i didnt know what to say.i cant tell them that these are the side effects of steroids.i am sometimes so much afraid to go to school.i dont even like taking a selfie or photo of mine.i posted a photo of mine on instagram with swollen cheeks n no one liked it so i had to delete that photo.everyday when i wake up,the first thing i do in the morning is see myself in the mirror.i dont know what to do anymore.i cant live with this face.my mom said that its side effcts will go when the steroids r tapered,but when??everytime i taper steroids my platelets get low.it has happened two times.docotor started giving me dapzone with steroids 3 weeks ago.n now i am facing the side effects of dapzone too n i have heard that dapzone is a very safe medicine.ninety percent people dont have its sideffects.but now i am having jaundice because of dapzone.i am not taking any supportive medicine with steroids right now.but i have shifted from alopathic to homeopathic.i am stil taking steroids n a homeopathic medicine along with it.my platelets countes were 62k day before yesterday.i dont know that its working or not.i will have my blood test day after tomorrow.lets see what the report will say.i just hope homeopathic works.

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hating the side efftcts 2 years 6 months ago #56611

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hi Ana. I know you hate the side effects of the steroids, but your mom is right, this is just temporary. The puffy face will go away as the dose is tapered.

There are other treatment options besides Prednisone and since you hate it, tell your doctor that you will not take it again and tell him to suggest another treatment. Patients have rights; it's your body.

Other treatment options are:

Rituxan
Promacta
N-Plate
Win-Rho

Also, keep in mind that platelet counts do not have to be in the normal range. Having counts around 30k is still safe for daily living.
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hating the side efftcts 2 years 6 months ago #56619

  • momto3boys
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Hi Ana,

I struggled with some of those same issues when I was a teenager. I have had ITP since I was 8 years old and I'm now in my 40s! When I was your age the only medication option available to me was Prednisone. I can look back at photo albums and very clearly see the times when I was on higher doses and had my moon face. It was a struggle at the time for sure, but you are fortunate to have some other treatment options available to you that weren't around when I was a teenager.

If you are feeling lots of anxiety and depression as a result of your treatment, please talk to your doctor about some of the other options. I'm trying Promacta now after bursts of prednisone lost their effectiveness when I got older. Things are going fairly well and I have no noticeable side effects.

Don't feel that you lack other options and please talk with your doctor and let him/her know that you are having trouble being on the steroid. I hope you can find something that works better for you.

And as Sandi so rightly pointed out, you just want to have safe platelet counts, not normal platelet counts. I've lived most of my life under 70,000 platelets and as long as my counts weren't especially low I've been able to enjoy a normal quality of life. Don't shoot for 150,000 :lol:
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