Immune Thrombocytopenia Purpura (ITP): What helps?

My platelet count fluctuates from high 60s to low 80s. My Dr. diagnosed me with immune thrombocytopenia ( ITP) but is not sure of what is causing it. Does anyone know.

Hi @hoytm40,
Fellow ITP members like @rojo36 @hi2l @mjpm2406 @melody12 may also join in to share their experiences.

Immune thrombocytopenia (ITP) used to be called "Formerly known as idiopathic thrombocytopenic purpura". Immune thrombocytopenia is a disorder that can lead to easy or excessive bruising and bleeding. The bleeding results from unusually low levels of platelets — the cells that help blood clot.This disease is caused by an immune reaction against one's own platelets.

Naviv, you asked about foods and supplements that might help increase your platelets. Here's an article that might interest you.
- How to Naturally Increase Your Platelet Count https://www.healthline.com/health/how-to-increase-platelet-count

Eating certain foods and taking supplements may help to increase your platelet count. Your care team can help make the right recommendations for you. Be sure to tell your doctor about any ongoing thrombocytopenia symptoms. If you have a very low platelet count, you may need medical treatment to avoid serious complications.

@hoytm40 and @naiviv do either of you have pre-existing autoimmune conditions?

Just diagnosed with ITP, platelets ranging from 2000-5000. So far IGIV, steroids and Rituxan has not helped. Just diagnosed 3 weeks ago. Anyone else with this issue and was there anything that helped get the platelets up? Bone marrow biopsy has ruled out any type of cancer. Any insight sure would be appreciated.

Jimmy, it can take a while for steroids or Rituxan to work, generally 3 weeks or so. Did you see any improvement with intravenous gamma globulin (IVGG)? It tends to show improvement sooner, within 48 hours.

Do you know the underlying cause for your ITP, for example infection or an autoimmune condition, new medication interaction?

They have not yet used IVGG yet just the IVIG (Immune Globulin). I will ask about the IVGG. They are still stating ITP and have ruled out many things. The bone marrow tested was negative for everything. They have run so many blood tests too many to list. The only thing they said was I may develop RA but no symptoms. There have been no new medications. I did ask about amlodipine which they took me off of and put me on lisiniprol. The doctor said even if it was medication related they would drop but not down to 2000. They are going to try NPLate today if they can find some, from another hospital here in town. She also put me on Dapsone. They said they have only ever had one case like mine that didn’t respond to one of the first 3 treatments. This is the reason I’m seeking a doctor/hospital that has dealt with my situation before.

Here's information about requesting an appointment at Mayo Clinic if that is an option for you: http://mayocl.in/1mtmR63

I sure hope you get answers and soon.

I was diagnosed at age 9 with ITP. I took steroids till I was 16. At the age of 32 I had my spleen removed which solved my problem. My spleen would filter all my paletts which caused the drop. This may not be for everyone, but it was my experience with it.

Thank You Colleen, if the platelets were up I would be in the process of getting into Mayo. Do you know if there is a certain location of theirs that specializes in ITP? We are in Illinois but could travel to either one. Since I am a rare case for the hospital hear I did ask if a consult with Mayo could be an option and perhaps they have seen cases like mine. Each oncologist I have seen has asked me about the Covid vaccine. My guess is they think there may be a link?? I also ended up having to get a pacemaker not too long after getting the vaccine and booster. Thank You so much for all your help and support it is greatly appreciated.

Hi I was diagnosed with idiopathic thrombocytopenic purpura ITP at age 8, platlet level was 1 in uk units, I was on steroids for a while but then I had a large dose of immuno globulin I was discharged at age 12 and no signs of it returning but still at risk I am now 32. I hope this experience helps someone.

Went through this after having my daughter.
Bone marrow ruled out cancers, went on high doses of steroids for months, couldn't ween off, platelets would drop severely. I was hitting 10k and lower. Couldn't scratch an itch without busting capillaries and I looked like someone beat me with softballs and nose bleeds were terrifying.
After 8 months, they took my spleen out, and the ITP REVERSED. 27 yrs later, still no bleeding issues