New Here, My Story, My Questions

Wow I'm so happy that I found this support group. Its hard sometimes when people can't relate.

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

Hey Savannah, I'm 17 turning 18 soon and I was diagnosed with Chronic ITP a few weeks ago, I can't answer your questions since i'm still new to it. It's good to know that there's someone close to my age at this time going through what I'm going through. I've only had the Prednisone which isn't doing anything to me (I have only a count of 11 as of this moment) and I am equally as confused as you are. I am taking Vitamin D as of this moment so I should keep you updated with how that will go. The doctor gave me the option to remove my spleen, IVIg or Rituxan but she says that the Rituxan is going to damage my immune system for 7 months. The IVIg might not work for me because I am not too young and not considered an adult yet, it works better for kids. and the spleen is a last resort, and that if i do decided to remove my spleen i'll have to take penicillin everyday for the rest of my life and I really don't want to do that.

Hi, my name is Marissa Whittemore, I'm 13 years old, and two weeks ago, my life changed. I was tired for most of my summer, I had headaches, rash, bruises all over from the gentlest bump. My bed each night would be covered in blood stains because my period was out of control. Then, I started throwing up, then had a seizer and passed out for 15 seconds in the shower. My parents rushed me to the hospital and they did blood work on me and said I had ITP. I was there for a week, and in that week, I had 5 blood transfusions and 2 IVIG treatments. The doctors told me that I had just enough blood in me to keep my organs functioning, anymore lost and I wouldn't be alive today. It was hard, and it still is, because I have to take 4 different pills everyday to keep it under control. But it's also easier because there is this. PDSA.org. I now feel that I'm not alone in this anymore, I know there are others out there with either chronic or acute ITP (it's to early for me to tell which group I'm in) and that I can talk about this. Also, some of the symptoms I have/had are:
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.

Hello My name is Destiny three weeks ago i was rushed to the ER with a soar throat thinking i would have strepthroat or somthing like that. I was real sick and bruised all over with a tiny rash in my mouth and allover my body.My local hospital didnt know what i had until three blood drawings not the small vials mind you. After 4 hours they told my family and I that my platelets were a 1. So they sent me to East Tennessee Childrens Hospital.. I was their for almost three weeks. My platelets are back up to 434,00 I started school two days after i got home and i'm still tired.In constant body pain,head ach,still have the tiny rash but its not as bad just on my arms and legs. I am still scared and go to DR. Paic on Monday. I just want to ask "Is this normal for me to still feel like crap?" Or "When will i stop feeling like crap?"

In the same boat cant wait to feel like myself again!!! :woohoo:

Hi Destiny,
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

Yes, many of the treatments make some people feel that way. Are you taking anything, now that you're out of the hospital?
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

No matter what the age, just know that none of you are alone!!! ITP can be very stressful at first. it does get easier once you become familiar with it. Lots of support here!!

I had ITP for 2 years. I have been on sleeping pills ever since it started. I am still on them to this day and it has been more than 3 years. Hearing your story is scarey because you were able to be stable for years at a time then a flare popped up. i only had to have 2 treatments of Winro and a treattment of IVIG. i was also on birth control for 2 years straight to help the bleeding. Having sleep issues is normal because we live in fear of something going wrong in our sleep and we not know about it. I stil fear that my count drops and I want be able to relize it. It turned out that I have been sick for months before ITP hit me full blown. I was only 15 when it started and now that I am 18, I am happpy that I have my health. As I said i still have sleeping issues with 100 mg. of Trazadone. It is just that we live in fear.

Please try not to live in constant fear of ITP. Stressing out over it does not help. Try not to think about counts dropping, that only makes it worse for you mentally, wich can make everything worse physically!! I thought the same at first, but then realized that stressing out over something I have no controll over, was not helping. Alot of people do just fine with low #'s and only treat if they have symptoms. ITP can flare up at anytime no matter how long one has been in remission. There are alot of things that can trigger it again. I have had normal counts for almost 3 years. Do I think about "what if" counts drop again, sure do. But I do not let it worry me. I will cross that bridge if it should present itself again. I have tried several sleeping aids and the best one has been Trazodone. I took the full 150mg tablet the first time because I wanted to sleep so bad!! I slept great but had such a "hangover" for the next 24hrs!!! I do fine with the 50mg. I stopped using it for awhile because it lost it's effectiveness.
So, from someone that has been there, please do not live in fear!!!

Hope this helps my daughter was diagnosed a year ago next month at the age of 13. By the time we knew what was going on her counts were 12 and our first treatment of steriods happened. She had such bad side effects including some you mentioned and her counts only went up to 117 for one week and then just continued to drop. Another steroid was tried same side effects and results. IVIG was next counts were up for 2 weeks and dropped again we had this treatment 4x with side effects only 2x lasting 2 days which were flu like symptoms. We are now trying WinRho it's been 3 weeks first week counts were 77 by the second week 55 and last week 46 with no side effects. She was accepted into a trial pill call Promacta which works by making more bone marrow to make more platelets. It has shown great results in adults.

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

Hi! My name is Angel and I'm new here too. I'm really glad to have found this forum... I had no idea there was a place we could all get together and share stories!

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.
.

I haven't been on in a while so here's a quick update.
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

I would go with Rituxan vs Splenectomy. I have had two rounds of Rituxan. The first lasted 16 months and the second will be 3 years in Nov. In between rounds a Splenectomy was suggested. I refused and went with the Rituxan. A Splenectomy is permanent. Once it is removed there is no replacing it. Plus you are at a greater risk of illness without it. Generally a Splenectomy is done due to a ruptured or enlarged Spleen and some blood disorders. People have had long term remissions with a Splenectomy but then relapse and need further treatment. Prednisone is not a long term treatment for ITP. The side effects of long term use can be permanent. What dose and how long have you been on Pred?
It is your decession on which treatment you decide on. So, do not let the Dr force you into anything.

Good Luck!!

So far i have been on prednisone for about 8 months. I have tried to get off of it 3 times, but every time i try to get off of it my platelets plummet. right now I'm taking 5mg a day. I have been as high as 60mg. I have chosen to do Rituxan, I'll be starting my treatment this December. So I'm keeping my fingers crossed that it will kick ITP in the butt

Glad to hear you chose the Rituxan. I hope it works for you!!

From every thing that I have read no matter what your platelet count is you will feel tired and depression comes with it as well. The lower the count the more fatigue you will be. Last count was 99 the highs I've been is 105 and still have to take a nap when I get off work for about 45 minutes or so. I had 8 rounds of Rituxan and come to find out I should have had only 4. So I have a new doctor that I'm going to next month.

Good luck on the Rituxan. My son just finished 4 rounds and he has had counts well below 10 since last summer and the last 3 months he is steady at about 1K. He does not have any bleeding which is great. But, he is extremely lethargic and has constant headaches and nauseous which keeps him home from school. He has lived with extremely low counts but we will not remove his spleen unless it is so bad I have no choice. I, personally, want to give him the opportunity to make that decision if he choses as an adult. He is refractory to treatments and I don't feel comfortable that he would respond to the chemo type treatments either. Right now he is so low and it is extremely inconvenient but he is not bleeding. His body seems to be working very well with the the few platelets. By giving him chemicals to do what in this system, makes me feel that it will would be more risky and his body would be less capable of dealing with the low platelets (or his case, really none at times). Aaron was dx at age 5 and I believe he had it, either off and on for at least 3-1/2 years before dx and we dealt with it for 6 years until he went into remission for 5 years. Last time was a breeze and this time is a nightmare but we feel if he did it once, we can do it again. We were seeing a homeopath and had tried many times before that had more positive and negative results. Since the body is confused, the key is to try to get it unconfused (simplistic as it sounds, not simplistic in answer). Finding that answer is the hard part and it's trial and error. Right now we put him back on an elimination diet we did before with great results but one slip sent him crashing. He is older now and we are wiser so we will see how it works. It has only been a week and he has been so sick this week for other reasons, can't tell yet anything. Back in the day 20K was the treatment level and now 10K. The hemos back then were easily panicked over numbers but have become more relaxed with lower numbers as long as there is no bleeding. Treat the symptoms and not the counts. Good luck with the Rituxan, I hope it works. But I would recommend homeopathy before going down the spleenectomy or chemotherapy route.