ITP, Need your help

[Homayoon]

In May 2016, some purpura and Petechia was observed in my legs, to know about it I did CBC.

CBC report showed that Platelets of my blood had reached about 47,000 and by passage of 20 days it decreased and reached to 10,000. Beside this I had heavy bleeding and Epistaxis along with purpura.

I stated to take steroids (prednisolone oral and injectable, from low dose to high dose) which had no positive effect.

According to CBC report I was diagnosed as ITP. As treatment here in Afghanistan was not effective so I traveled to India and was hospitalized for 11 days in Medanta hospital and then refered to Sir Ganga Ram Hospital for additional 25 days. A series of the following (MRI, CT scan, Bone Marrow and some other related lab examinations) were performed and reported no issue. The only issue was the Decrease of Platelets in my blood. I was given IGG, Anti-D, Dapsone and Revolute tablets to cure my disease, but still that was not effective.

The undergo treatment was not fully effective and there were concerns due to which I went back to India a year later. My treatment physician throughout the time prescribed new drug Rituximab 750mg per week for a month which shown absolute positive result and increased my blood platelets and my health became to a state of normal until July 2023.

In July 2023 again purpura and Petechiae was observed in my lets which lead me to once again go for CBC checkup. Once again, on 12 August, 2023 a decrease (125000) of platelets were observed and after a week it decreased to 88,000 on 20 Aug, 2023 and then it decreased to 73,000 after two weeks of checkup on 04 Sep, 2023. It is mentioned that when I got the covid 19 vaccine then about 2 months later my platelets were back down to 73000.

The following examinations (Schistocytes, D-dimers and CRP) resulted normal except the decrease in platelets.

Right now, I am taking no medicine for cure, but the ups and downs in the number of platelets is a tension for me which is much disturbing to me and my family.

Due to political issues in Afghanistan, I cannot go outside of Afghanistan to ensure my health and unfortunately, we do not have specialized health professionals in this field.

I would like to request for your time to study my case and provide me your valuable advice and comments regarding my health issue.

[BeccaUnit]

Over 21 years of ITP experience, the up and down is a reoccurring theme for me.

You seem to be on my same path, bone marrow good, just a very, very angry immune system.

When I first present the warning spots, I am usually down below 10,000. In the past 5 years (2 flare ups) an injection (very important) of 40 - 60mg Dexamethasone is administered on the spot. A following 3-6 day perscripition of 40 mg oral tablets is then taken. I use Promacta to help boost platelet production and then either 4-6 rounds of Rotuxin, or 1 - 2 rounds of IVIG. If I dont start Rotuxin or IVIG durring the week of Dexamethasone, I will relapse. PREDNISONE along with Rotuxin just seems to pause th issue, not completely calm down and stop the problem.

Be prepared to keep anyone away that has any flu, cold, virus - exposure is what sets it off, and you definitely do not want to encourage your immune system any further. Tell your loved ones to mask up and wash hands while you are being treated.

Your going to need an iron infusion, at this point your body is using more resources to produce blood and platelets than what you can eat to cover. TAKE VITAMIN C! Not for it's supposed benifit of preventing getting sick - vitamin C is CRUCIAL for Iron absorption. You really don't want to loose any iron your putting in your body.

Rotuxin and IVIG are extremely hard in your body, study all the side effects - at any time you are light headed, dizzy- get to a hospital immediately.

Your doctor may suggest a spledectimy- I held off for the first 15 years of my ITP and I am still not sure if it was the right decision. There are some serious down side to having it removed, BUT i will say since loosing it, I have rebounded faster with treatment.

Do not be afraid- you can get through this and live a normal life, even with reoccurring flare ups. Wear a mask from now on in public, stay away from sick people and wash your hands constantly.

Taking precautions will reduce the chances of your immune system being exposed to a virus that sets it off.

Take vitamin c, eat everything green, and God be with you!

[Homayoon in reply to BeccaUnit]

Thanks for your comments and instructions!

[BeccaUnit]

Oh, and you are not crazy, the covid vaccine set off my ITP as well.

DISCLAIMER- ANY VACCINE can cause ITP, pneumonia, meningitis, hepatitis c, any and all vaccines can put you in a platelet spiral. Don't avoid taking vaccinations, BUT, stick close to a doctor for roughly 6 weeks post any vaccination for weekly CBC testing of your counts.

Knowledge and awareness are key -

Sincerely, Becca

[Homayoon in reply to BeccaUnit]

Thank you, that was our experience!