Recently diagnosed with ITP at 23 years old...

Hi All!!

My name is Trish.. Im from Ontario, Canada.. I was recently diagnosed with having ITP..

Back at the end of June I started getting a weird rash, now I know its call petechiae.. and I noticed that I was getting bruises in spots that I dont even know how they got there.. In the mean time I was in the process of getting sick, which turned into Strep Throat.. I went to a walkin clinic, got meds for the strep throat and asked about the rash. The doctor just told me to go see my family doctor if it didnt go away after the strep meds were done.. Well I was done the meds on the Thursday, and the strep went away but the rash was still there.. But that day we were going camping for the long weekend..

I felt perfectly fine, so we went camping.. On the saturday, my friend noticed this big welt on the side of my leg, which looked like a gross bug bite.. I left it, kept an eye on it, then it started to bruise.. Maybe some kind of spider bite.. whatever.. then after dinner that night I noticed one on my hand starting.. Thats when I said, screw this im going to the hospital.. So I went to the closest hospital to our campsite.. They took me right away, did blood work.. my platelets were at 15K.. The doctor explained that if I had of dropped below 10K I could have started bleeding internally and whatnot and it could have been very serious..

They started me on 50mg of prednisone and he said as soon as I get back to the city to go to the hospital there and get more blood work done.. He told me by monday I should be at 20K.. well I went on monday, and the prednisone had brought me up to 35K.. then on wednesday I went to my family doctor and did more bloodwork and I was at 72K.. I went back up super fast!

My doctor sent me to a hematologist which I am still seeing once a week right now.. 2 Thursday ago I was at 125K.. but then last week they dropped my pred to 40mg, and last Thursday my platelets dropped to 97K.. the Hemo told me that may happen once they try to take me off the pred.. so she dropped me again this week to 30K and I go back on Thursday again for more blood work to see if im still dropping

Im hoping I havent dropped too much again.. They think I got the low platelets in the first place from my strep throat.. My body just decided to start attacking my bloodcells instead of the strep throat infection.. and now this week im being treated for a yeast infection ( which I think was caused by the steroids and meds from the strep throat) so im wondering if I dropped to 97K last week because my body is doing the same thing with the yeast infection, attacking me instead of the infection..

I am a healthy person.. My whole life all ive ever had were ear infections.. I rarely get sick.. i never go to the doctors... I think ive been to the doctors more in the past month than I have in my life.. lol so this ITP crap came out of no where and its kind of a shock to me.. Im a healthy person, how does something like this happen!! the body is a weird thing!!

Ive attached a picture of my bug bite on my leg.. It got blacker then that and bigger.. and I still have it to this day, its slowly fading away but its been almost a month and my bruises are finally starting to taper off!

Hi Trish - I'm glad you found us. Most of us were diagnosed with ITP out of the blue. Some after an illness like you, some after taking a certain medication, some for no reason at all. It just happens.

There are times when adults have acute cases of ITP and it resolves. That could be the case with you, so have hope and hang in there in the meantime.

Trish,

I saw your thread and had to read your story. I am 24 and I was diagnosed when I was 22. Like you, I felt just fine. I had everything going for me and then BAM, out of nowhere this ITP thing crept up. Your story sounds so familiar to mine. Unlike bruising and a rash (I never really had them that bad) I had a terrible nosebleed and had to go to the ER. There, they informed me of my platelet count (17K, I saw that yours was 15K). Like you, I was put on high doses of steroids and my numbers shot right up! Also, like you, I was hospitalized AFTER a strep infection....how weird? My hemo. also thought that the strep. and high doses of antibiotics had triggered my ITP. Although, she believed that I had been living with itp for some time and that the strep bacteria and antibiotics perpetuated things and made my levels drop even more. I was weaned off of pred. and unfortunately, my numbers didn't hold up on their own. Hopefully, that will not be the case with you. After much thinking, I opted for the Rituxan treatment and I have been in remission for over a year now. My last count was 258. In the beginning, I, too, was going to the hemo twice a week and having counts done. Now, I go every 6 months. Don't worry, it will get better! I am glad you found this amazing site. I have made many life long friends here. We help each other through the hard times. I am hoping that your numbers stay high on their own and that you have an acute case of ITP. And know, that either way, you can always come here to talk to us. We know how you feel. Keep your chin up!

Natalie

Trish,

Going along with what Natalie said, your story is similar to mine as well. I was diagnosed in March of 2010 - I'm 24 years old. I felt perfectly fine and then one day life took an interesting turn! I noticed petechiae on my feet first and then woke up one day with my lip all blistered. I never FELT bad during the whole ordeal and like you, I had no major health problems up until my diagnosis with ITP. In fact, I went for a 5 mile run the night that I first noticed the petechiae! My Hema can't figure out why I got ITP - no prior infections, colds, new medications...so I will always wonder!

My count fluctuated up and down for a while too. When I was first diagnosed I was at 4,000 and then dropped to 1,000. For me, my Hema chose to do 60 mg of Prednisone and then 5 days of IVIg and that did the trick! Almost five months later, I am totally off the steriods and only had to do IVIg once. My last count was 244,000. Going to the Hema once a week seems like a lot now but it will eventually get better like Natalie said. I only get a CBC done once a month now and see the Hema every 3 months.

Life will get back to normal! The bruises will fade and you will learn to adapt. It takes time and that is ok. This forum is a great place to share and get feedback.

Best of luck to you! Keep us updated!

Amy

Well I had my specialist appointment today and my platelets are back up to 121K.. I am soo excited!!! Im thinking they dropped last week because of the yeast infection.. or because that was the first time they dropped my prednisone so maybe my body was just getting used to the drop..

She told me to go down to 20mg starting today until next Thursday when I go back again!! Im almost off the prednisone so wish me luck that I can get off and my numbers stay up!! Im leaving for vacation next friday. Road tripping to Newfoundland with my boyfriend to visit his family, so ill be missing one appointment with the specialist, but ill still be on the prednisone.. and since my numbers were up this week, she feels more confident about everything so.. Wish Me Luck for next week!!!

Where are you traveling from to get to Newfoundland? Enjoy your trip; I hear NFLD is a pretty place to visit.

I am traveling from Ontario, from the Toronto area!! Ive never been to Newfoundland. My boyfriend was born there and all his family is there so we are going to visit.. Im pretty excited! Its apparently a totally different kinda lifestyle out there.. lol

Will you be going through NB?

Yes we are staying over night in Moncton I believe.. kind of our half way point.. lol

Are you on a tight schedule? Moncton's only about an hour and a half away from me.

Very tight.. only stopping to sleep then off to catch the Ferry in nova scotia!!