How long have you been in remission

Hi all,

I haven't been to this site in a really long time but I thought it was time to check back in. For all the folks out there with ITP, how long have you been in remission? I'm overjoyed to say its been over 3 years for me.

My ITP story: I was diagnosed in Summer 2008. I had experienced a massive weight loss(I thought it was just my hard work but my family said I looked sick). I also started experiencing bleeding gums. I thought it was attributed to the braces I had at the time and lack of proper flossing. I was also extremely tired...so much so that I was notorious for falling asleep during work meetings and I took 3-4 hr naps every day after work. I then started to have nose bleeds and noticed the red splotches on my dark skin. I made an appointment with my doctor and after some research she diagnosed me with ITP and referred me to hematologist who started me on an aggressive predisone regimen. I have a really negative views about steroids because I feel they contributed to my sister's death so I stopped the treatment cold turkey. My doctors reamed me out for abruptly stopping treatment, and I started back. Every time I got to the smaller doses of steroids my platelets would drop so the next course of action was a splenectomy. I had the surgery in Oct 2008 and everything seemed to go well. A week later I was still unable to keep down anything..not even water. I went to see my doctor and they found a massive blood clot in my portal vein (stomach). They never determined if it was result of surgery or birth control. I spent 21 days in the hospital, about 1 week of it in ICU. This was a really stressful time for me because I was in the process of selling a home, buying a home, relocating to a new state and starting a new job. I was in the hospital the day I was supposed to close on my new house. But miraculously I made it through! About 8 months after getting out of hospital, I began to see the red splotches (petechaie) on my skin again. After a trip to my new hematologist it was determined that the splenectomy had failed and I was no longer in remission. I then began a 1/week treatment of Rituxin. I did this weekly for 5 weeks. This treatment was very expensive but I am happy to say that 3 years later, I have no platelet issues. I now only get checked during a yearly physical.

I'm a little concerned now as my husband and I are now trying to get pregnant for the 1st time and I don't want it to come back. Has anyone else experienced issues with low platelets after pregnancy. How was it handled?

My platelets always dropped after delivery. The interesting thing was that they dropped anywhere from 4-6 months after delivery. I had to use steroids and ivig for my first four deliveries. My last delivery was with twins 6/2010 and I still have not recovered. i am on my third round of rituxan and waiting to see if it holds this time. Hope this helped.

16 years! I was diagnosed in 1997, did the Prednisone shuffle for about 6 mo. (rising & falling with dose), had a splenectomy and have been in remission for 16 years now!
I had 2 kids in the mean time, had c-sections with both in case the ITP antibodies crossed the placenta, they didn't. My platelet levels remained at healthy levels during both pregnancies.

I don't visit this site much anymore, but check in now and then. Remissons do happen. The week before my splenectomy I had found a study that said splenectomy was effective in 60% of cases. I asked my doctor (a dead-pan New Yorker) about it and he looked me in the eye and said, "Wadda ya want, a guarantee?" I was relieved, after several years, when I realized that I was in the 60%.

I have strange muscle twitches now, not painful but pretty constant and am looking today on this site to see if there is a correlation with twitches and ITP or ITP/Lupus. My GP referred me to a pretty good neurologist whom I like. He seems to be doing a wait & see with me for the last 6 mo. I had an MRI that found one 3mm T2 lesion in my brain. He says he wouldn't diagnose me with MS based on those two things. I think we are playing count the symptoms for now. I don't think I have MS, I also don't think my twitching is normal.

Go for it! Get pregnant! If ITP is a problem during pregnancy you'll find out. If it's not, you'll find that out too. My kids are 13 and 9 and are two of the greatest blessings in my life. I remember the very dark days after diagnosis – my Platelets were at 12,000, my husband and I had just celebrated our 1st anniversary, 80 mg Prednisone daily made me puffy, sleepless, obsessive, and ravenous. I was mad that God would do this to me with all the plans I had, I wasn't supposed to be chronically ill. I couldn't have imagined then the blessings I've enjoyed for the last 16 years!

1974-ish, had splenectomy in 1973, for me it worked. Of course the occasional cold can knock me flat, but I'm ok.

Hi, I was diagnosed in 2003 after having my second child only 22yr of age. I had the same symptoms as you avcanty01, experienced a massive weight loss(I thought it was due to the breastfeeding). I also started experiencing bleeding gums. I was also extremely tired...so much that I usually fell asleep around 18.00! I did the Prednisone shuffle for about 7 months and like you I was rising & falling with dosage.I had a splenectomy in year-end 2003 and have been in remission for 10 years now
I really want the third child but like you I´m extremely worried the ITP will come back

Well I am happy to update that we have a happy and healthy beautiful 4 month old baby girl. She's the light of my life. Platelets were fine through pregnancy and continue to be good. Prayerfully they will stay that way.

Congratulations wonderful news! I'm in the same place you were just over a year ago, thinking of pregnancy but too scared :S

This is a good story.
I have completed 4 infusions of Rituxin and am on 20mg of steroids hoping to get off these. I was diagnosed in Nov. of 2013. I hope to have a full recovery!
Currently my platelet count is 108,000. I was admitted with a 0 platelet count and was in the hospital for 10 days with trial and error IVIG, steriods decadron and predisone, and then the Rituxin.
I thought the fatigue was in my head but this support group which I have recently discovered has cleared that one up. Thanks for your input!!!

I was diagnosed in August 2013. I tried IVIG and prednisone with a 6 week taper. I was finally off steroids in October, and I've been in remission since... so 3 months.

I did 4 weeks of Rituxan in Sept./Oct. of 2010 and have been in remission since then. Get blood checks every 3 months.

I am not in remission but have been in remission before.

Was given Rhogam/ Winrho (due to count of 3) than followed 1 week later with 4 weekly treatments of Rituxan that was in Nov. of 2007. I came out of remission May of 2013 giving me a grand total of 6 year remssion.

Thanks for input. After 6 years it must be frustrating to have a reoccurrence.

Do you have to take steroids still? I am on 20mg and count is 145K however when they dropped it to 10mg/day my count dropped in 1 week to 108,000

What I find frustrating is after six years my old doctor stopped doing hematology patients and I now have to get used to a new one. When I was first diagnosed I was put on prednisone my counts went back up and the doctor said I was cured a couple of months after that when I hit zero I never heard the word cure or remission till I did Rituximab. My children were in grade school they are adults now.

After a while for me ITP became a pain in the butt. I still did my life went camping, canoeing, rock climbing you name it. I just made sure I knew my count before I went. Once I went camping with a platelete count of 5 the only issue is at one point a bruise/hematoma started to form on my leg. At that point I needed to go and relax with a ice pack on it to slow down the bruising.

Julia
My hema of 14 years is retiring. I'm really sad, she was great. I have to get used to a new one now too.

I've been in remission from ITP since May, so 8 months.

I am so sorry dru it is hard to find a decent doctor but when you are comfortable with the doctor and than having to start over is very frustrating. I hope your new one turns out to be as good if not better than the old one!

mbtpa3 personally I'd take the 108k and 10 mg daily over the 20mg. In fact, I'd try going to 5 mg and if you stay about 50k than just live with that. 5mg of steroids is usually nothing with very little risk for long-term affects.

I think my Hematologist and I will have a chat re. this as my count last week was 156
have one tomorrow and a f/u with him next week
I like the idea of tapering down and seeing what I can hold my own at.
He needs to quit talking splenectocmy its way too soon for that kind of talk
Thanks for the input!!