Newly Diagnosed to ITP

Hi all!

My name is Andrea. I'm 30 years old and I live in NJ with my 2 very loving, hardworking, supporting parents and my dog. I have no siblings, I'm the ONLY child. I got Diagnosed with itp on 9/18/15. Totally a life changing experience! NEVER had itp before. It just hit me suddenly. It started via menstrual for me. Mom took me to a Urgent Care that Friday afternoon and had a blood test and my Hemoglobin was a 3. So with that I was in trouble! My skin was very pale and had bruising all on my legs and I had these black scabs on my lips. Totally not normal! I was in the hospital for 2 weeks with TON and TONS of HIGH IVIG meds, HIGH Steroids and I also had to receive 5-6 liters of blood transfusion for the first couple of days in the hospital. Keep in mine I also had a liver transplant in 1985, so this was a very difficult case for the drs and thats why I went to PENN in Pa.

I am home now and doing well. I'm taking it easy and I go to clinic tomorrow for blood work to check how my Platelets are, please pray they are stable! They discharged me with a stable 30,000 count.

I joined this site to learn more and get support. Thank you!!!!

Hi Sadie -- Welcome. I joined about ten months ago. I'm glad you are home from the hospital and hope your counts remain above 30 -- and grow higher! ITP is so different for everyone. Reading posts on this forum helped me understand how uniquely different people respond to various treatments. While it has been frustrating for me when I haven't responded to some treatments, there are other options that others here have had experience with. Don't be shy about asking questions! - Susan

Hi Sadie! Stick with us and read as much as you can. Once you start to learn about ITP, it doesn't seem as scary. I'm glad you are home now and I hope things get better soon.

Hi Sadie

Welcome...I've ITP for about 15 months now. Joining this site has helped me so much. Lots of advice and support

Thanks all! Please call me Andrea!

It's been a heck of a roller coaster ride! I'm trying to remain positive but its hard when you are told by the drs that your NPlate drug is to be shipped and delivered TODAY by the Nplate company or where ever it gets ships from and find out this morning that it was NEVER shipped cause the company is waiting for the dr's approval when the dr's ALREADY approved it when I was in the hospital!!!!!! THANK GOD theres a over-lap in the drug.

But when I was in the hospital and I got the IVIG and stuff, my body had a delay and they were concerned that it wasn't gonna work, but the drs gave it a couple of days and it started to kick in. Everybody's body reacts differently! Mine was slow hahaha!

I'm still trying to get a grasp on how I now have itp and always wondering if this will ever go away, like gone forever or I'll have this for the rest of my life?

Welcome, Andrea. ITP often goes into remission, that is to day your counts return to a normal level and stay there, and you just get monitored. It's important to keep in mind that a normal platelet count for someone with ITP is not the same as it would be for an otherwise healthy person. I just had another platelet check, getting 122 this time, a number sufficiently high that my doctors will simply continue monitoring me.

Why did you have a liver transplant? Are you on immunosuppressants that would affect marrow or immune function as relates to platelets? Each person's course with ITP is different, and other health issues sometimes play a role.

I hope the NPlate keeps your counts rising.

I was born with a liver disease. They think it is Hemochromatosis but wasn't confirmed!! I am indeed immunosuppressants! I'm on anti-rejection meds for the liver. Been like this all whole life. I guess they did the bone marrow biopsy to make sure the bone marrow is still good. My plateltes were always good BEFORE I got itp. My bloodwork from Aug were great. Then one day BAM! my body wasn't the same.

Andrea:

Autoimmune disorders seem to run rampant these days. None of us really have an explanation as to why we acquired ours, but the theory is that people have a genetic propensity towards them and something triggers it along the way, like an illness, medication or vaccine. Many times, autoimmune disorders run in families and family members do not always get the same ones. One family member might have MS and another one might have Lupus or ITP. Also, some people with one autoimmune disorder are more prone to acquiring others. Autoimmune problems can be difficult to treat and there is no 'one size fits all' method. Many times they seem to pop up out of nowhere or, they can take years to fully develop.

The good thing about ITP is that it often does go into remission, unlike many other autoimmune disorders. It is rarely fatal or debilitating and nearly everyone leads a normal life despite having ITP. It can take a while to get used to it and at first, it turns your world upside down. It does get easier and it becomes routine. The more you read about it and understand it, the better you will feel about it. Knowledge is key, and so is patience. It will take time to get stable and as long as your counts are above 20k and you have few symptoms, you're okay. The goal with ITP sometimes is not to have normal counts; safe counts are fine. The goal with N-Plate is to keep counts around 50k, not to normalize them. Most treatments do not work immediately; it can take days or weeks. Patience is needed there too. N-Plate does have a good success rate and hopefully you will get stable soon. If not, hang in there and understand that it takes time. We're here to answer questions and help you any way we can.

Brilliantly put Sandi.

Andrea:

As one who is 15months along this road I whole heartedly agree with Sandi that knowledge and patience are paramount.

I'm an very experienced specialist front line nurse but ITP was way out of my comfort zone. Finding this site was a godsend. So much information & experiences to draw on. Plus the support people offer.

The link below should send you to a booklet produced by a group of European blood specialist nurses as an educational tool for nurses working on general wards. It is extremely well written and not much technical jargon either.

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

It can be a long, bumpy and frustrating at times. I've had to learn to be patient. I have initially responded to 4 previous treatments but been unable to sustain a response on maximum doses.

I've more or less given up thinking about my counts because they are so unstable. The only time I worry is if they go below 10. I know when they are below 30 because I'm always frozen stiff.

I have 2 goals at present get off steroids which I'm gradually doing, and find something that will hold my platelets above 49. I have just started N plate (had 3 injections so far).

I refuse to have my perfectly healthy spleen removed. If nothing works then so be it and I will have to learn to live being constantly frozen stiff.
Kind regards Anne x

I just got my Nplate delivered to the house this morning! Parent took a training at the hospital last week and had a pharmacist train/show my parents how to give me the Nplate at home. Yes, you can get the Nplate at home!!!!! I responded to the first dose very well. When my platelets are at 10,000 I'm told to be in bed, no activity..lol. But if they stay above like 30,000 + then i can walk my dog, ect. I pretty much know when my levels are low, when I check blood sugar and the bleeding stops instantly then I know im good! But if it bleeds for some time, then I know I'm low.

You're told to be in bed? How are your symptoms other than the blood sugar bleeding?

Why don't you do your own injections? It's very easy and best to do it yourself into the abdomen which for me anyway, is a totally painless area to stab. I did my own Nplate injections for three years. I'm now doing subcutaneous immunoglobulin for an immune deficiency with two needles into the abdomen. It's a bit different as it then takes nearly an hour for the stuff to be pushed in through the needles by a pump but I'm still finding the abdomen the best place. You should try it if you haven't already.

Sandi wrote: You're told to be in bed? How are your symptoms other than the blood sugar bleeding?

In the hospital I was given a guide and if my Platelets were below 10,000 I had to be careful really. Im good otherwise!!

Ann wrote: Why don't you do your own injections? It's very easy and best to do it yourself into the abdomen which for me anyway, is a totally painless area to stab. I did my own Nplate injections for three years. I'm now doing subcutaneous immunoglobulin for an immune deficiency with two needles into the abdomen. It's a bit different as it then takes nearly an hour for the stuff to be pushed in through the needles by a pump but I'm still finding the abdomen the best place. You should try it if you haven't already.

I do! My mom is gonna give it to me tonight! I do my own insulin too!!!

Sadie05 wrote:

Sandi wrote: You're told to be in bed? How are your symptoms other than the blood sugar bleeding?

In the hospital I was given a guide and if my Platelets were below 10,000 I had to be careful really. Im good otherwise!!

Hmmmm. That's really odd. I've never heard of anyone being told to stay in bed. That would really disrupt your life. Most of us were still working unless we had a job that was physically dangerous. Some people never get above 10k and I can assure you, they don't live in bed like the Wonka's. Hopefully your counts respond soon and you won't have to do that any more. Symptoms are more important than counts and most doctors advise patients to go by that when deciding daily activities.

I meant why don't you do it instead of your mother doing it? But it doesn't matter, whatever gets it done is good. Good luck.