New to ITP

Good day everyone.
I am new to ITP and getting a bit drained with the back and forth with different "specialist". My case started 3 years ago after being vaccinated with Pneumovax23. The day I was vaccinated my platelet count was 180k which was the normal for me. One month later I was at 90k. The PA at the time didnt see a problem and I was started on another vaccine for Hep B. I had been vaccinated for Hep B in California as it is a requirement to go to college. The vaccine process for Hep B is 3 shots. By the 3rd shot my platelets were hovering around 30k. Ive gone to 0 a few times but will usually bottom out around 10k. Never had a bleeding episode and really didn't change my lifestyle until I started treatment. I've gotten cut at 10k platelet count and was fine but then at 50k would get the worst black and blues which I know you all have experienced. Its very weird every time my platelets drop I experience something different. I cant do prednisone, I have a bad allergic reaction. I am on Nplate right now and have been for 10 weeks and it is not doing anything as I have had to have 3 rounds of IVIG during the 10 weeks on NPlate. My doctor is at a loss because nothing is working. I am honestly too tired to do anymore research on the subject as I could probably write a biology book with all I have read. I've decided Im not getting a splenectomy as the success rate is not very good and after the last set of vaccines,Im not getting anymore. I need to tell my doctor to change me off of Octagam and put me back on Privigen as I responded better to that. I cannot do Rituxan as they are now telling me I had Hep B at some point although Ive been vaccinated for it on 3 separate occasions. They want to try Promacta but I have suffered some liver damage due to the high doses of steroids and the anaphylaxis that followed, so that is frowned upon right now, plus its the same mechanism as the NPlate.

I am feeling limited to my treatment options and was wondering about any alternatives that you may have tried that worked. I know we are all different but before I drop another $10k on hokey treatments I figured Id ask. Also, I am sick of getting stuck with needles twice a week, my veins are ready to collapse; is there no other way to check CBC? What ever happened to a finger prick test?
One more thing; I am curious how many people were vaccinated before they were diagnosed with ITP?
Thank you
John

John:

The finger stick is not reliable. The results do not compare with a venous stick. Do they use a butterfly needle? If not, you can ask for it and it does help some. I have one arm that no one can get blood from any more because of scarring. Another option is to stop going twice a week and limit it to one. They really only need to know for the N-Plate injection and if you're not having symptoms, knowing the actual count doesn't matter much.

ITP is listed as a side effect on most vaccine inserts. It's fairly common and most people do not make the connection because if they don't get a CBC, they don't know that the platelets are down unless they get symptoms....it can take weeks or months.

Limitations of Vaccine Effectiveness
Hepatitis B has a long incubation period. ENGERIX
-B may not prevent hepatitis B infection in individuals who had an unrecognized hepatitis B infection at the time of vaccine administration. Additionally, it may not prevent infection in individuals who do not achieve protective antibody titers.

Blood and Lymphatic System Disorders
Thrombocytopenia.

www.gsksource.com/pharma/content/dam/GlaxoSmithKline/US/en/Prescribing_Information/Engerix-B/pdf/ENGERIX-B.PDF

It's odd to me that every vaccine has a disclaimer that it may not work. I wish people would read the inserts; they'd learn a lot.

What dose of N-Plate are you on?

Pneumovax 23:

General disorders and administration site conditions
Cellulitis
Malaise
Fever (>102°F)
Warmth at the injection site
Decreased limb mobility
Peripheral edema in the injected extremity
Digestive System
Nausea
Vomiting
Hematologic/Lymphatic
Lymphadenitis
Lymphadenopathy
Thrombocytopenia in patients with stabilized idiopathic thrombocytopenic purpura{3}
Hemolytic anemia in patients who have had other hematologic disorders
Leukocytosis
Hypersensitivity reactions including
Anaphylactoid reactions
Serum Sickness
Angioneurotic edema
Musculoskeletal System
Arthralgia
Arthritis
Nervous System
Paresthesia
Radiculoneuropathy
Guillain-Barré syndrome
Febrile convulsion
Skin
Rash
Urticaria
Cellulitis-like reactions

Immunogenicity
The levels of antibodies that correlate with protection against pneumococcal disease have not been clearly defined.

www.merck.com/product/usa/pi_circulars/p/pneumovax_23/pneumovax_pi.pdf

There are other immuno suppressants besides steroids. The most common for ITP are Imuran, CellCept, and Cyclosporin. If your doctor hasn't used these before, that would be a problem. In severe ITP cases all three can be used, or just a couple - not knowing which is most appropriate.

www.bloodjournal.org/content/115/1/29.full?sso-checked=true

Hopefully your doctor is using the higher doses of Nplate, like '8'.

Sandi

Are you a doctor? Because you sound far more informed than the doctors I'm currently seeing. If you are, where? You may have just made a new patient. I thank you for the information. I am burnt out on research. I did just see an immunologist that said in no uncertain terms there is nothing that can be done once antibodies are created there is no way of reversing that and as long as i keep making platelets my body will keep creating antibodies. Seems a little doom and gloom but actually it kind of picked me up a bit. I've exhausted myself looking for a "cure" now i feel like i can at least move forward.
Currently I'm on 10mcg of N plate, fingers crossed I'm over 50k on Monday then maybe the higher dose of n plate is working.

Thank you
John

Thank you for the info. I'm going to discuss this with my doctor on Monday. Try some dual therapy options. She has been moving me from one option to another. It annoys me that i have to do so much research on medications as a non medical person. I pay them to know this info and this is the 3rd hematologist I've seen.
Thank you again
John

I just read the warnings on the Engerix. Wow. And no lawyer will touch this case. I'm thousands of dollars in a hole and can't even sue. As a doctor, she should have never started the Engerix after my platelets dropped 90k a month after the pneumovax especialy not knowing my history. And especially after they dropped after the first dose of Engerix. This makes me so mad.

John

John:
No, I'm not a doctor. I just do a lot of research. The past two years I've done a lot of research on vaccines. It's very hard to sue vaccine manufacturers, in fact, they cannot be held liable at all for vaccine injury. In 1986, there were so many lawsuits against the manufacturers that they threatened to stop making vaccines. The government stepped in and created a separate Vaccine Injury Court. It can take years to win a settlement but only if you can prove without a doubt that the vaccine was the cause. Since ITP is listed as a side effect on the inserts, they could say that you should have known and took the risk when you agreed to get the vaccine. That might make sense if you actually had informed consent. Doctors don't tell patients the risks and I consider this a huge problem. Vaccine injury and death .is out of control.

I don't agree that you will always make antibodies. Some people go into remission with no real explanation. Don't give up that hope.

my suggestion john to you about your hemo doctor is track down some of the top doctors that study ITP and email them or call there office and ask if they may know of a hemo in your state. i did something like this and have an appointment with a new hemo who is very knowledgeable.

Jn91669 wrote: ... Currently I'm on 10mcg of N plate, fingers crossed I'm over 50k on Monday then maybe the higher dose of n plate is working.

I sure hope so.
AFAIK, the only time Promacta works and Nplate doesn't is when one has developed antibodies to Nplate - after taking it 10 months or so.

Thank you, Im holding on to hope.

Im talking to her tomorrow. She was looking also for a doctor with more knowledge as she does not know what else to try.

John

Hey John. Are you responding to Nplate yet?