Newly Diagnosed & New to Site

I was recently diagnosed with ITP in July 2014 when my levels dropped to 2,000. I remember being at work when my doctor called for me to get my levels redrawn because it was a mistake. While looking down at this big bruise on my arm I'm thinking to myself really? Well to make a long story short I walked into work at 6am Thursday morning July 10th and walked out a patient Monday afternoon July 14th my oldest 11th birthday. This is still all new to me in the hospital I was given IVIG, steroids, iron and stool softener. I came home with platelets of 69,000. I have been getting my blood drawn every week or every two weeks since July 2014. I have been off all medication since October 2014 up until recently when my numbers started to drop again. I told my Hematology doctor that I am dropping a lot and what's the next step but she kept saying you are above 50,000 and I told her I understand that but if you look at my numbers I am dropping at least 20K to 30K every two weeks. Of course than I was back to every week I went from 50,000 to 36,000 now this Thursday will be my 4th and last treatment of Rituximab. I unlike the other post that I have read was terrified the side affects alone gave me an anxiety attack. I had to resign from my job as a Paralegal because I was stressed with my health and the attorneys with there crab wasn't helping. By the way being a Paralegal was a bit boring so I am pushing to go back to healthcare where I spent 15 years.

I just want to know is it normal to latch out and just be angry sometimes. I have moments where I just cry because I feel like a burden. My mom came to stay a week with I first started the infusion and she already deals with my step dad who has MS. I have a great support team but they drive me insane sometimes call all day long. My mom drove my car home and I haven't seen it since like okk don't treat me like I cant do anything. I just feel like I am going crazy can't wait to go back to work but some days I am just so tired I don't feel like being a mom or wife. Is this normal? Any advice? I am so glad the Social Worker gave me this website feels good to know I am not alone in this.

Sorry typo Crap not Crab

Daveeda:

It is normal to feel scared and anxious at first. Nearly everyone does. In time, you will find that you can live a full, normal life with ITP.

Most people keep working, so if you are bored, you can go back to work. I am not saying it's easy (I was also a Paralegal with three kids, but my job was far from boring). It's okay and actually better to stay active. It keeps your mind occupied and helps to keep your body toned. The treatments, especially steroids, can do a job on muscles.

It's normal to not treat until counts hit 20k or 30k. Counts above 30k are considered to be safe for daily life, so because of treatment side effects, it's best to stay away from treating until you have to. Many of the treatments have long term side effects.

It is a good idea to get some help for your emotional health; it sounds like you are having a tough time. Counseling is a good idea, and this Forum can help you as well. We've all 'been there done that' and as a group, can help with just about any question that you have.

This forum actually helped me out a lot just to read and know that I'm not alone in this. That feeling is a big relief. Being a Paralegal just doing medical binders and subpoenas was like watching paint dry compared to being in the hospital setting for over 15 years. Don't get me wrong it was busy just expected something more. So who knows maybe I will go back in the hospital or maybe to another firm who knows what God has in store for me. But as a mom I know I have to keep pushing forward. Can't worry about something I can't control. Thank you you reply means alot

You're right, to a large extent you can't control it. That was the hardest part for me...losing control. Once I learned about ITP though and became familiar with the treatment options, I made suggestions to my doctor. At that point, I felt like I gained some control. I could control which treatment I used and we negotiated doses and at which count we would treat. It made a difference.

People go into remission all the time. During those times, you get a break and can stop worrying. Life becomes totally normal. Counts may fall again, but you will be better equipped to handle it. You just take a deep breath and say 'here we go again. I can do this'! And you will. In time it becomes just a pain in the butt and the fear goes away. In the meantime, try not to let it take control of your life. You are stronger than that. If you don't want to be a burden, don't be. I swore I was not going to let it affect my kids and it didn't. I kept things as normal as possible. That can be very hard to do on Prednisone, but I had a few tricks that helped a lot. ITP can be frustrating, but it's not the end of the world.

You are such a blessing thank you so much for sharing and caring. I will push forward and I will not let this tear me down but help lift me higher. Thank you so much. You have no idea how you helped me tonight. Thank you Lord for good people.

That's why we are here. We're a family and you are welcome to be a part of it! Some of us have been on this Forum for many years and we sometimes bicker like brothers and sisters, but we're always here for each other.

Sandi is right. Through education, you can take control of your situation and once you take control you will be less stressed out about it all. And part of that process is not just learning about ITP and its treatments but it's learning how others have coped with it.

I also recommend meditation and relaxation techniques. Audio books are particularly good for those, I've found.

Chin up, it will be better!

I was diagnosed in Jan 2015.I am 61 years. I had blacked out and my daughter called 911 by the time they
got me to the ER. My body was being to shut down.They told her I had ITP. They could tell by just
just looking at my legs I had red spots on them and they were also on my stomach.They
gave me blood and platelets. They put me in me hospital checked my bone morrow and found it had
stopped making platelets. My counts go up and down They have been as low as 1. I see my DR.
every other day.He has me on Nplate I have had 5 shots so far.I am also on prednisone I stay tired
and I am very weak. I can't do anything. I try to fix me something to eat and I can't wait
to finish because my back hurts so bad and my knees start to shake. I have told my Doctor
he is in charge I will do what ever he says. I have been in and out of the hospital and at one
visit I was there for 12 days. I am trying to keep my chin up. But it is hard. I also have
dizzy spells and I have them often.I also have tinitus which is a ringing in the ear.
I don't sleep good I get maybe 2 hours at time.
Has anyone had these problems?

It sounds like you have a very difficult case. I am new to this awful disease but i have been able to stay out of the hospital. I hope that nplate works for you and you are able to get your energy back. Please keep us posted.

Mamabzy2:

It sounds like you are having side effects to the meds. Steroids can cause weakness, fatigue and loss of sleep. Things will get better and easier with time.