TOPIC: Excellent Advice for newly diagnosed

We tried Vitamin K. So Far so Good ! weather it raised platelets or just stopped the bleeding naturally........Im not a scientist. But if it works dont fix it. I wish i saw more people pass this on. Maybe its " Contempt prior to investigation" that keeps people from doing this. Its just a vitamin that Occurs in Vegetables etc...
Doctors scoffed at us. & now we havent seen one in Months.

I have been fighting this mess for going on four years and still havent gotten anymore answers than what I had when I started. I am ready to throw in the towel. My hematologist keeps saying come back next month for more blood tests. My platelet count is stable between 74 and 77. Is that ok? Should I be having more evasive tests done? I have been on countless "runs" of prednisone and it stays the same. HELP!!

I wouldn't take any meds if my count was above 70.
Erica

Thanks, I am at the end of my rope. The Dr wont do my back surgery but keeps prescribing pain killers and I am tired of being a walking pharmacy.
Sarah

Julia (Winnifred) posted this in another thread and it's an interesting point to think about the next time someone feels upset or depressed about ITP:

"Someone asked me the other day if I am happy! I've been pondering that question. What is happy! Can I be happy?

Was I happy when I was in remission because I'm out does this mean I must be sad? I don't think I fully appreciated my remission and maybe that is why I need to travel down this road again. An odd familiar road deja vu not really scared sorta comforting to know I've been down this road and survived so this time it will be easier."

Hello

My name is Lizbeth Hernandez, I live in Puerto Rico and was recently diagnosed with ITP. I lived my life in a normal way, without symptoms. In a routine appointment on CBC realized that my platelet count was at 30. It was when they decided to hospitalize. The first treatment I had was of Solu-Medrol which helped in any way to climb the platelets to 120, then began to drop, even with the Solumedrol in 60. Gammaglobuline tried as the 2nd option and this made ​​my body started creating Macroplaquets after 3 days again began to fall. I was discharged after 19 days in hospital and had to be hospitalized again week since my platelets dropped to 15 again. Once hospitalized me two apheresis platelets transfused (RH negative) and my platelets carry 5 days over 100. Similarly I have Solumedrol 60 and am awaiting me extirpate the spleen.

Later I give more information.

Thank you for this post, it's coming at a lifesaving time. I'm 24 years old and was diagnosed last Thursday with a platlet count of 4000. I did the prednisone and got them to 12,000 but they dropped back down to 6,000 within 5 days. I did the IGg thing and have a doctors appointment tomorrow. I just have irrational fears that nothing will make them come back up again :/
I really appreciate the understanding and your advice. It has made me feel better than I have in over a week.
Erin

Well said, thank you!

So glad I found this post I was diagnosed with Itp this week with a platelet count of 13 and I was freaking out. Bad. To say the least. Lol but that's just me a giant worry wart. I'm so glad I found this resource and people who are going through the same things. This post has uplifted my spirits and gives me more hope and faith that I will get through this and be able to lead a normal life.

10 Important Lessons Learned in 10 Years with ITP
- By Kristin Hunt

On June 25th, 10 years ago, I was given a diagnosis that would soon change my life in ways I could have never imagined. At just 12 years old, I was baffled to learn what a platelet was and had to wrap my head around what it meant to not have enough of them. Living with Immune Thrombocytopenia as a kid, a teenager and now a 22 year old adult, has taught me so much about myself and the rollercoaster ride that is life. On this 10 year anniversary, I thought I would share with my fellow ITPers, as well as my family and friends, the top 10 things I have learned on my journey with ITP…

1. Always put your health first
They say you don’t know what you got till it’s gone. Well ‘they’ were exactly right. Most people do not give a second thought to the idea that their perfect health could easily be taken away from them in an instant. I used to be one of those people. Not a day goes by that I am not grateful for my overall health, despite having lower platelets than normal. From a young age I learned that without good health, I have nothing. If your wellbeing is not your number one priority, at some point it will prevent you from accomplishing your goals and not allow you to fully be there for the ones you love. When you put your health first, everything else naturally follows.

2. Know your body and do your research
Over the years I have learned that the only person that can distinguish between what is normal and not normal concerning my body, is me. It is important to take note of your symptoms, and pay attention to any warning signs your body may be telling you. Your doctor can see physical signs, but if you cannot describe or recognize how you feel, this will hinder their ability to help you. It is your responsibility to know your body inside and out. Not only this, but it is important to do some of your own research about your disease, understand how your body works and what treatment options are available. Go to your doctor’s appointments with questions ready. Never rely purely on someone else to tell you what to do. Only you know what is best for you and in order to make that decision, you must exhaust all of your resources.

3. Focus on what you can do, not what you can’t do
When I was first diagnosed, it seemed like there was this long list of activities I could no longer do with low platelets. As a kid, being told you cannot go to amusement parks, waterslides or even participate in most gym class contact sports, at first seemed like the end of the world. As I got older, I began to explore all of the things I CAN DO even with lower platelets. The one sport I latched onto was cross country running. I started running from a young age, and although I loved playing other sports, I came to love running more. Over 10 years later, running is still a huge part of my life. Not only does it keep me healthier and in shape, but it is something that nothing can stop me from doing. So although your diagnosis may feel like an obstacle preventing you from doing certain things, it really does not have to be. There are always ways to overcome limitations. With an open and creative mind, you may find yourself involved in activities you might have never even thought to try.

4. Let go of what you cannot control and turn your efforts onto what you can control
Every patient goes through the same draining list of questions when first diagnosed: “How did I get this? Why did I get this? Was it something I did? Why me?” I used to let some of these questions consume me, until one day I realized that the answer to these questions were no longer relevant, and not in my control. Instead, I started asking questions like: how can I optimize my health even with lower platelets? How can I help other patients or spread awareness so that more people know about ITP? These are the types of things that are in my power to change and worth pondering about. Re-focusing my efforts onto these realistic goals allowed me to actually feel like I was accomplishing something productive and that is a much more rewarding sentiment.

5. Don’t let ITP define you, let it inspire you!
Having to live your life around a single number (your platelet count) can often feel like this disease has come to define who you are. This is not true. What is true however is that having ITP will make you a stronger person and will help you deal with life’s challenges with a greater sense of confidence in yourself. I use my ITP every day as my purest form of motivation to be the best person I can be and to live my life to the fullest. ITP has inspired me to help others first by organizing fundraising events, and spreading awareness, and eventually into studying immunology and pursuing a career in the medical field. These things have turned into my greatest passions. There are so many ways that you can use your diagnosis and personal experiences as your own source of inspiration to do something significant, no matter how big or small.

6. Sometimes no medicine is the best medicine
This lesson unfortunately may not apply to everyone. When I was first diagnosed I was getting IVIG treatments every three weeks and blood tests every week, forcing me to miss a lot of school. Although my platelets would go up for a while, they soon fell again. After a few years of this rollercoaster ride, I decided I had enough. I was lucky to not be very symptomatic even when my platelets were quite low, so after about 4 years I made the decision to stop treating. Taking a watch and wait approach, for me, was the best decision I ever made. The side effects of most treatments for ITP tend to be worse than the disease itself. With few symptoms, it seemed logical to me that living a safe, healthy, risk-free life-style would be a small sacrifice to avoid so many hospital stays. Over the years my platelets have managed to stabilize in a safe enough range (25-45,000) allowing me to live my busy life as a university student with minimal treatments or blood tests. So when people ask me how I’m so motivated to eat well, regularly exercise, and stay away from anything that could compromise my health, my answer is very simple. Sadly, not every patient has the option to safely stop treating which is why research into new ITP treatments is still critical.

7. Be your own advocate
This lesson has two meanings. As an individual patient, you are the number one person who is going to look out for you, so make sure you become your own best supporter. Do your research, become an expert of your own health and make sure to form a good relationship with your hematologist so they can help you make the best choices. As part of a much larger community of ITP patients, we also have the responsibility to be our own advocates as a group. Instead of sitting around wondering why nobody knows about ITP, and why few resources exist, why not strive to change that? Spread awareness, distribute important information, or get involved with an organization like PDSA. There are so many ways to support your own cause and join forces with a community of people that are looking to accomplish the same goals as you!

8. Surround yourself with people who love and support you
This is probably one of the most important points, especially when first going through your diagnosis. The best way to ease the struggle is to have family and friends by your side that you can rely on for support. Unfortunately, throughout this process you may also come to realize who your real friends and supporters are. But that is okay, because you do not have time for anyone in your life that does not put a smile on your face and make you feel loved no matter what. However, it is also important to give your loved ones some slack, because the reality is that they will never experience exactly what you are going through. However, if you help them understand and they are there for you when you need them, then that should be enough. Seeking support in others who have ITP had a huge impact on my ability to not feel alone in my battle. Attending PDSA’s annual conferences has been where I have made some incredible friends who fully understand some of the personal experiences I have gone through.

9. Don’t be afraid to be different, embrace your uniqueness
When you have a disease, there is always that lingering fear that if you tell people about it, they may treat or think of you differently. I definitely experienced this throughout my high school years. I went through my phase of denial and trying to avoid talking about my ITP, but if anything this made me feel more isolated. Once I finally accepted it as just another part of my life, and embraced it as something that made me more unique, I started to willingly tell my story. I realized that the more I talked about it, the easier it became to deal with because I did not feel like I had to hide it anymore. I’ve stopped worrying about what others may or may not think. The positive and negative experiences I’ve had because of ITP have shaped me into the person I am today, and I am proud to tell the story of that person. At the same time, I am able to spread more awareness of ITP which will only have greater benefits in the fight against this platelet disorder.

10. Stay positive, have hope and just enjoy your life!
Lastly, the greatest lesson of all is that attitude is everything. The day I finally decided to turn my negative attitude about my health into a more positive outlook, was the day I started living my life again. It is so easy to just feel sorry for yourself and become consumed in negative thoughts. However, I can assure you that if you can find the strength to climb out of that dark hole, you will never want to go back. I truly believe that we all have the power to choose to be happy. Be thankful for all of the good things in your life and keep those at the forefront. Also remember that no matter how bad things might seem to be at the moment, know that it cannot last forever. So always have hope that your life and health can change for the better. As the saying goes in the ITP community, you may have ITP, but ITP does not have you! So remember to take the time to put your worries aside, if only for a moment, and simply enjoy your life!

www.facebook.com/plateletdisorder/posts/699377886782316

Congratulations Kristin on such a well written piece. I relate with all your lessons & found it very inspirational & encouraging, especially coming from a young person's perspective.
Best wishes for your career & I'm sure we'll hear much more from you.
mj

Has anyone heard from Gort lately? I hope he's doing well!

No. I think about him all the time. I should try to e-mail him.

I've been wondering the same thing as Tamar. Hope he's ok.

i recently found out i have this. my docter sent me a letter that was posted to him by the blood transfusion service. the letter was really confusing so i rang and the receptionist told me i didnt need to make an appointment as it wasn't serious. so i brushed it off - i have 2 babies so time is limited really. but recently im gettin nosebleeds and if i cut myself it wont stop bleeding for ages. basically im freaking out and so much so im ACTUALLY scared to visit my gp. am i just freakin out over nothing?

kelbelle you mean you recently found out you have ITP? What was your platelet count?

My opinion - get someone to watch the babies and get in to talk with your doctor and find out what actually is going on. No point in freaking out, that doesn't help you at all and your little ones will pick up on it and that's not good for them. But you do need to get in and see him/her and maybe a hematologist.

Up near the top of this page you can click on About ITP - and on Treatments -- do that and read, learn all you can. And make that appointment to see the doctor!

Good luck and keep us posted!

It all depends on what your platelet count is, and that can go up and down all the time. If it's low, you might need treatment. If it's above 30,000, you might just have to monitor. Please don't freak out! It's not that horrible!

I agree with Melinda, get an appointment and go. It doesn't take that long.

The doctors where I am are not able to tell me anything I have been in this hospital twice first on 9/9/14 out on 9/13/14 and back in on 9/17/14 still here. When I first went in my count was 1 by the time they released me I was at 19, the next day I was down to 18. Within 2 day my count was down to 12 they gave me a platelet transfusion that went to 45 right after but the next morning I was down to 7 then 12 now I am at 4. I don't want the surgury and they are really not talking about any other medicine. Am I wrong for wanting to leave this hospital to see another doctor? And they did the bone marrow biospy and told me the next day that everything looks good, when I was told that it should take 3 day for the final results. Excuse me if I seem to be all aver the page I just don't know what to do.



Thanks for the overview.

You need to speak to a doctor who can answer some questions. There are quite a few treatments available and you do not have to have surgery. Have they given you steroids or IVIG? If you are not receiving treatment, there isn't much point to being in the hospital.

Hi jbazemore05,

Find a doctor that really talks to you. The transfusion is only a short term solution. Your immun system will kill those pallets quickly - like in your case.

Most doctors in Europe will start the treatment with steroids. Ask yours about it.

Thanks
Jorg

Hi, My name is Adam. Im 31 and was diagnosed a couple of weeks ago. My count started at 5 and they gave me a strong dose of prednisone which boosted my count to 17 the next day. I am still on the high dose of prednisone even though my count quickly started to fall again. After 4 days it was back down to 9. The Hemo decided IVIG would be best since my count was so low. I just finished a 2 day treatment and my count was at 72 after the first day. I have a lab tomorrow to see where I am at now. What I am wondering is what is the point of continuing with the prednisone seeing as it had a very small effect and the numbers are still dropping. I am also wondering what treatment i should push for next based on the numbers that come in tomorrow. Any advise would be greatly appreciated.

Hi Adam - what does of Prednisone are you on? Have you started to taper at all? Since you just and IVIG, it will be hard to know if you are also getting some Prednisone response. Sometimes it can take a few weeks to see if there is any benefit to taking it and if not, it could be time to start the taper (you can't just stop taking it).

IVIG is usually a very temporary treatment which lasts a week or so. Other treatments to look into if counts do not get into a safe range would be Rituxan, Win-Rho, N-Plate, or Promacta.

They have me on 80mg a day. i have not started to taper. it has been 12 days on the prednisone. Is there one treatment to choose next based on the number i get or based on my response to the treatments i have received already?

No, unfortunately, treatments don't work that way. Usually in the beginning, the patient relies on the doctor to tell them what to do since you have no idea being new to this. Doctors choose based on the experiences of past patients and based on their knowledge of ITP. Some doctors are not as up to speed as others. If a doctor pushes splenectomy early in the diagnosis, they are usually not as well-versed as they could be. Prednisone and IVIG are first line treatments and when they don't cause remission, you move to second-line treatments. No one knows ahead of time which treatments will work and which ones won't. It's basically trial and error.

Yes steroids and IVIG was the first thing they gave me. I have went for that second opinion and they are given me this medicine called Nplate and they to say I need to remove my spleen. Since the 13 of September my count has been below 10000. Right now as of today my count is 5 it has been there for two days. Now being New to this my question is, if a second doctor says to have the surgery, should I or just try the different medicine? Thanks

They have started me on 110 mg of steroids a day, IVIG, platelet transfusion, and now Nplate I am told by a second doctor surgery is next. The doctor has even told that some people go on with no more problems and some don't. THANK YOU

They have tried those now it is Nplate

N-Plate can take a while to work. It seems really soon to have a splenectomy since you are newly diagnosed. Some people go into remission within a few months of diagnosis without having the surgery. If the splenectomy doesn't work, you are right back where you started with the same treatments you're trying now.

pdsa.org/treatments.html

Do your reading.
Good Luck!

Thank you believe I have not signed anything yet. What you said is basically how I was thinking just need a second mind on that. With the input from all of you guys and reading everything up has really helped me. I thank God and the creators for PDSA.




Thank you all