Diagnosed 11.16.2012

Hi Everyone,

My name is Samantha. I am 23 years old and I was diagnosed with ITP on November 16, 2012. I woke up that morning covered in bruises and petechiae. I went to the doctor where they did blood work and was told to go immediately to the hospital as my platelet count was at 2,000. I was in the hospital for 5 days while they treated me with 70mg of prednisone to boost my count. I was sent home once my levels reached 50,000, and I have been on prednisone ever since. While trying to taper off the steroids, I have experienced the rollercoaster of up and down counts. I am currently on 22.5mg of prednisone and will be receiving IVIG treatments next Thursday and Friday.

Being on prednisone has been the most difficult part of all of this. I have experienced horrible side effects: weight gain (35 lbs.), acne, depression, mood swings, joint pain, increased appetite, swelling, etc. etc. etc. It is living hell! I can’t wait to be off of it (no light at the end of the tunnel as of right now).

I graduated from college in May 2012 with a bachelor’s degree and aspirations to go to the police academy this year. Four days after I was discharged from the hospital, I was supposed to take the physical training test to be accepted into the academy. I had been training everyday and working 6 days a week to be physically, financially, and mentally ready for the academy. That rug got pulled out from underneath me awfully fast! I obviously had to put my dream of becoming a police officer on hold. Not only that, but I haven’t been able to work because the steroids mess with my ability to function normally on a daily basis. Ultimately, I went from being in tip-top shape, having a steady income, and living a normal 23 year-old lifestyle and then WHAM! – I am an overweight couch potato that cries and the drop of a hat - with no energy to do anything!

I have a great support system in my family and friends, but I still struggle to express what I am going through to them. This website has brought me a lot of comfort and has validated my feelings. It’s nice to know that I am not going crazy!

I guess I just wanted to get my story out to see if anyone has any advice, hope, or insight on what to expect from the IVIG. I want this to be over so badly. How long does it take to be considered a chronic ITPer?

Thanks in advance and good luck to my fellow ITPers…May your counts be high this week!

Sincerely,
Sam

The pred did the same thing to me and they put me on Xanxa for sleep and the depression. I have an awesome work place, been here for going on 14 years. I work at a vet's office (office manager) it did change a lot around work since I can't do a lot of the thing I use to be able to do. I got diagnosed 4/24/12 topped out at 100mg a day on pred (which didn't help). Then they did 8 rounds of Rituxan in which they should have only did 4 rounds. So I am seeing a new doctor on 2/2/13. The highest count I had was 107 which was 3 months ago then it dropped to 77. When I was in the ER it was at 7, I know its not going up (bruises, sore and that kind of thing). I can always tell when I'm having a low platelet day, the old doctor said that is not possible and it is possible to know your own body. We are all here to talk at anytime...


Amber

I also have no insurance and medical bills topped out to $300,000. The rx company paid for the Rituxan and other programs helped me with the rest. I also wanted to change careers and do something or physical (which with ITP it is not going to happen) always tired and want to sleep all the time now.

Sam, what are your counts now? Are they fairly stable?

Amber, seems like you've had some bad luck with doctors. Must be adding to your frustration. The medical expenses for all these treatments are crazy!

As of this past Tuesday, my counts were at 130. They were at 157 the Tuesday before that and 180 the Tuesday before that. Very little change (down 2.5mg) in prednisone amount in that time period. I've been all the way up to 193 one week and seven days later down to 56. It is a classic rollercoaster ride!

Hi Sam,

First of all, don't give up on your dreams. Most of us live a normal life with ITP. The side effects from prednisone are awful! One of my worst days with ITP came when I told my primary care doc that I was having a terrible time with prednisone and he said "well none of my other patients have trouble with prednisone". I was so mad and changed to a different dr.!

I have been on prednisone many times, have had IVIG and rituxan. I have children your age so maybe "qualified" to give you advice . Let your family and friends help you, it makes them feel less helpless. Maybe you could find something specific for pple to do for you. Like helping you shop for and cook lowfat healthy foods or finding a simple exercise routine you could do. Your counts are good and it sounds like you have lots of self discipline. So maybe you could find some activity, even just taking a daily walk. A daily walk with friend or family member even better.

IVIG can raise your counts but in most people are a temporary fix. I feel fine on the days I have it but terrible for about 3 days after. I get awful debilitating headache and feel like I have the flu.


let us know how you are doing.. I will keep you in my thoughts.

Dru

Prednisone is not our friend. It is the enemy.

Which was why (now that I've tapered down to 10mgs from 100) I was so frustrated when my cancer clinic's psychiatrist told me that he wished he had known I had been on such a high dose of steroids earlier. "There are meds I can give you to help stabilize your mood while on you're on prednisone."
Awesome. Things that could have been brought to my attention yesterday (or last month)!

He said that usually xanax or low doses of select anti-psychotics may be prescribed to help with the bouncing off of the walls. Might want to ask your doctor about it.

The best advice I can give you is GET OFF THE COUCH! I know, it's hard. You're exhausted and your emotions are all over the map and, yes, that ice cream looks INCREDIBLY tasty but you have to stop. You just worked your arse off for your dream. Yes, you've had a minor setback. Yes, it royally SUCKS. But that's all this is. A setback. Not the final nail in the coffin.
So if you're gonna do this, you're gonna have to get up off the mat. Do what you can do each day. If that makes you just take a slow, short walk then do that. If that means you jog (CAREFULLY) for a few miles, do that.
But don't give up. Don't throw in the towel. ITP isn't worth it.

Samantha,

I have ITP. I am training for full Ironman. 140 mile race. I am on Prednisone and I too, hate it. I do P90X and Insanity everyday, back to back, and swim, bike, and run. I am going to be 60 in September.

I will help you with anything that I can, but YOU have to get up and go get it! I have my own little saying about this ITP, "It may get me, but it ain't going to be today!"

We are all here for you! Let me know what I can do to help you!

Jeffrey

Samantha,

I forgot to tell you that I initially gained 45 pounds in about 13 weeks of Prednisone. I have it coming off now with a focused 1600 calorie diet and no sugar!

Hang in there friend!

Jeffrey

Samantha, the highest dose of Pred I was on was 100mg a day for a month or so then taper down. I will not take pred anymore. I gain 30 or 40 lbs on the Pred and I'm still trying to get it off. I guess that is why my doctor gave me 1mg of Xanxa to counter act the Pred. I am eating healthier and just stopped smoking (not going to gain anymore weight). Drinking more water and less or no sweet tea (I'm in the south) no sodas and dinner is at 6-6:30 every night. At some point I will start running again and doing my work out videos. I want to start doing runs like The Zombie Run (things like that, fun runs). Going to see the new doctor on 2/28/13 at 2pm, wish me luck and high counts!!! (last count 77).

Good luck to all

Amber

Amber

Good for you, you are taking control of many things. Keep to your resolve and you will feel much better! Good luck with the new doctor. Hope it goes well.


Dru