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New Here, My Story, My Questions
- savvyj19
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I'm Savannah Johnson, I was 5 when diagnosed with ITP & now I'm 19.
I just want my story out there so others cannot feel as alone, and maybe y'all can give me advice, etc.
I was five years old, when I first got sick. I remember getting a terrible virus, I remember going to a t-ball practice, a ground ball is lightly hit towards me and I lightly pick it up off the ground. The next day i was black & blue with bruises. The bruises didn't match the level of injury. The next night my mom comes to check on me my whole bed is engulfed with blood from a nosebleed. My platelets were at 3,000. That's when doctors figured out I had ITP. I had IVIG as a kid & did high doses of prednisone. Doctors told me that most people only have one episode their entire life, thats not me. I have had ITP episodes when I was 5, 7, 9, 13. And now I am dealing with another episode. This episode started during my junior year of high school (17) and is still going on right now. My platelets dropped to 12,000 in the middle of school. So I was put on high doses of prednisone for 3 months, my platelets got better (temporarily) but as soon as i got off of it my platelets declined from 119,000 down to 42,000 in a little over a week. so not even been off prednisone for a month I'm back on it again. I hate all the side effects, the weight gain, insomnia, headaches, mood-swings, food cravings, being on a low sodium diet, etc.
So now my hematologist is talking about different treatment options. She has talked about Rituxan, Chemo, Immune Suppressive Therapy Drugs (transplant patient like meds), Spleen removal, IVIG, WinRho, N Plate & Promecta. I'm not sure what I should do, my doc said "chemo, immune suppressive therapy, & spleen would be her last resort" My mom is freaked out about all the side effects she has read about that come from these drugs. So have any of these helped y'all? Are side effects as bad as my mother has read? My mom wants to go the natural route, but I'm not sure about that either. She read that a doctor in Canada cured a lady with ITP with high doses of vitamin d, but that's only one case study that she has seen. Has anyone else seen positive effects from vitamin d? Has the natural route worked for anyone? Also has anyone had sleep issues? Every night I have to take benadryl otherwise I don't get a good night sleep. Is there another way to get good sleep without having to take benadryl?
I would really like for this two year fiasco to end! I'm starting off at community college because of ITP. I would like to hear other stories too. I would like to hear treatments that have succeeded. I know this year I felt like no one could relate, until i found this website & before i found this website i found out one of my teachers was a hemophiliac so it made me feel better that this teacher could relate.
From,
Savannah
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- Wwfbader
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- MarissaWhit
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Tiredness
Headaches/Mirgranes
Dizzyness opon standing
Nausea
Vomiting
Trouble sleeping
Mood swings
I hope that I could help by telling my symptoms to you. I hope that this ITP will go away for all of us.
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- Destiny
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- Destiny
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- eklein
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What treatments did you have over those three weeks at the hospital? It is very possible the treatments are what make you feel like crap! Especially since your platelets are back up.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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Did you have any significant blood loss? That can make you feel bad, too.
It sounds like when you initially were diagnosed, that you had some sort of virus or infection going on, too. A really sore throat is not a symptom of low platelets in of itself. Is it possible you had something like Mononucleosis or Strep Throat? The after affects can take awhile to get over.
Also wondering if you might have had a flu shot, a DPT booster for whooping cough or the Gardasil vaccine in the last few months?
Each of these has history of causing many unpleasant symptoms and side effects, one of which happens to be ITP. Unfortunately, some of those side effects are much, much worse than ITP.
To help recover quicker, you might want to take some Vitamin D3, which is actually a hormone, not a vitamin. I like Carleson's D3 drops, as they are of high quality and quickly absorbed since they're taken under the tongue in oil drops. They're nearly tasteless, but can help with your energy level and mood almost instantly. Most of us are woefully deficient. It's best to get a base level done thru labwork., first, as being a fat soluble vitamin, you don't want to have TOO much. But , don't think I've ever met anyone yet who does. Optimal level is 50-70. If you're below that, you might feel bad. When you're clearly run down like that, 6,000-10,000 IU per day is not too excessive, until you are feeling better
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- Dean
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- ilovelucy407
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- it has been 3 years alreay since my knowledge of my ITP. it took a year but everything is back to normal and on 10-29-12 i gave blood so that i can help somone in the same condition i was in or worse. it is just a good deed that paid off in the short run.
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- Dean
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So, from someone that has been there, please do not live in fear!!!
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- cksk356
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My daughters hematologist has had she has had patients that have responded after the first or second dosage to IVIG or WinRho but everyone is different. It was scary having to decide the best treatment option because they can all be scary but side effects can go away. It's the quality of her life I decide which would be the best. If you ever need to talk or have other questions you can email me at cksk356@yahoo.com.
By the way they usually try IVIG first before WinRho and I can give you instructions on the best way to transfus if you should need it.
Chrystine
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- violetchild
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I feel like I've been pretty lucky compared to a lot of the people on here. 10,000 was the lowest count I had, when I was first diagnosed in August of 2007, when I was 14. Since I was a kid, I was always kind of pale and fragile and I bruised easily. But over the summer of 2007 I began to notice huge, dark and spotted bruises all over my legs. I was almost worried that I had leukemia, but more worried about how awful my legs looked in a miniskirt. So, I went to see my pediatrician and she did some tests and referred me to a hematologist. The hematologist told me I had ITP and gave me Win Rho, which put my count up to 99,000. But then it slowly started going down again and remained hovering between 25-30,000.
Then I received another treatment of the Win Rho the following August, which brought my platelets up to to 110,000 and the number continued to grow. They stayed between 130-170,000 until this summer. I went into the lab to get another blood test done and they took a vial for the standing order CBC that was still on my file. This test revealed that my platelet count was at 40,000. Since I am now 19, my doctor referred me to an adult hematologist, who said we would wait to see what happened. My count went from 40,000 to 45,000 to 70,000, then fell back down to 56,000 to 51,000 and my most current count is 38,000 (but I have another test on Sunday).
My new hematologist initially told me that she doesn't like to treat unless counts consistently stay under 30,000, but she prescribed me Prednisone two days ago and I picked it up from the pharmacy yesterday. I haven't taken it yet, since I'm a little confused by the "take as directed" part, when I have received no direction. I also worry that 60mg a day is a pretty high dosage for my case, which isn't severe enough to warrant the undesirable side effects of the Prednisone, in my opinion.
I remember being scared the first time I went into the Pediatric Oncology Department. I was scared when the hematologist explained for the first time that we won't know if I'll have ITP for my whole life or just for a few months. I lived my life normally and when I was in remission, I felt great. I thought for sure I would be done for good. Now that it's back, I just feel dread. I try to think positively, but I just can't picture a lifetime of getting treatment for, what I consider when I'm angry, a stupid disease that doesn't even really matter. But I know it does. I know that if I got into an accident with my friends, I'd probably be the first to bleed out. I know I can get nosebleeds at really awkward times and well, going hiking might is the equivalent to beating myself with a baseball bat. I just feel that, for the moment, I don't want to be on any treatment.
For sleep, I take 10mg Ambien every night. I've had problems sleeping for years, but Ambien has really helped me sleep well through the night. I know it would just be a replacement drug for Benadryl and I don't necessarily recommend them, but they truly have helped me be a more productive person, instead of the miserable, exhausted person I used to be.
Anyway, sorry that rant was so long. If you figure out any new natural treatment methods, definitely post about it! I'd be interested in learning any natural remedies that people know of. I'll try the Vitamin D idea, that sounds like it could go somewhere and I have a Vitamin D deficiency anyway. Other than that, good luck with your treatment, I hope all goes well.
.
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- savvyj19
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My platelets are going down (this week there @ 56,000)
My hematologists wants me & my family to make a decision.
My appointment is tomorrow
I honestly have no idea what to do! Its honestly between Rituxan & Spleen removal.
I've researched all the pros and cons, but I'm still not 100% convinced of which one to do.
Are there side-effects i should be very concerned about or perspectives I haven't thought of yet.
Has anyone had a spleen removal & it NOT be successful? if so how has itp & no spleen affected your life?
The only thing that I am for sure about is I am sick and tired of being on prednisone.
I need other perspectives/opinions maybe that will shed a whole new light on one of the treatments that i hadn't thought about
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- Dean
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It is your decession on which treatment you decide on. So, do not let the Dr force you into anything.
Good Luck!!
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- savvyj19
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- Dean
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- amberyard
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- Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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- pegstirling
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- My son, Aaron, dx at age 5 (5/2001), though he was in remission for 5 years after a vaccine, came out of remission and lives at 3k. Did 5 years of treatment with but then stopped working, back at 3k. He is basically non responsive to all regular treatmen
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