Immune Thrombocytopenia Purpura (ITP): What helps?

Andy's diagnosis is Thrombocytopenia

Hi,
No. My Husband has.
We are waiting for the genetic culter results from the bone marrow biopsy before our Hematologist decides on the medication to treat him.
His diagnosis is:
1. Anemia
2. Excessive alcohol consumption.

I suffered Migraine headaches with history of ITP for years taking Migraine RX meds only seemed to help the pain reduce and not eliminate them. Until about 5 yrs. ago I started taking 500 mg Magnesium daily. I went from 4-5 headaches a month to maybe 4-5 a year and not as debilitating. One time I bought 250mg strength and started getting headaches again so I know taking the right mg is also key for me. Might try Magnesium, I am hopeful this may help you. I just buy over counter no specific brand.

A group of Hematologists told my husband that they are seeing patients suffering from lower platelets counts after they got the Covid shots.

I don't know what to say except to make sure you are managing stress levels, eating healthy, well rested, well hydrated, electrolytes not depleted, etc. I don't remember having much problem with headaches when I had AITP except for a couple of times when the IVIG drip was set too fast.

Hi Linda, I'm sorry to hear that your head is killing you with your platelets below 30, but that treatment won't start until you're 20 or lower. I'm tagging fellow members like @georgie2 @jimmyb63 @ggloss @dorisj08 @teresa1holland @merchant700 @naiviv to offer their tips.

How are you doing today? Any updates?

My Dr. also diagnosed me with this my platelets drop to 30 but nothing has worked so the treatment to do is IVIG and they won’t do that tell I’m 20 or lower I find my head killing me is there any suggestions to what I should do

Hi there ~ I joined this group due to other health issues I am dealing with right now, but noticed your post about having ITP. Yours may be a different type than what I once had, but I wanted to share my journey through it with you.

I have been in 15+yrs. remission from AITP (autoimmune related platelet destruction). I do not think it will ever return because root causes were addressed instead of just masking symptoms to "manage" what I was told was an incurable & chronic rare type of AI related blood disorder.

It was a gradual process, but I acheived complete remission after about 6mos. of sticking with the (now permanent) nutritional, dietary and lifestyle changes I made.

I could not tolerate the severity of side effects from prescribed use of rather high doses of Prednisone for too long. (after initial diagnosis when I was in crisis) I chose to go another route without steroid drugs involved once I was weaned and my platelet count was high enough to do so safely.

I chose to continue receiving the prescribed IVIG treatments (as needed & well tolerated) via my hematologist. The IVIG infusions worked well to help keep my platelet count stabilized. While working with my hematologist, I also chose to follow a care plan devised by a certified alternative M.D. (much like what is presently called a
certified functional medicine type of M.D. ) Both doctors were part of my team and informed of what the other was doing.

It all became a multimodal nutritional/dietary and lifestyle change approach, along with my own mind/body/Spirit connection techniques.

Doing all of the above appears to be what helped me to attain remission from AITP - as well as AIHA (autoimmune hemolytic anemia) another AI blood disorder, which appeared subsequently for some reason, years after I had gotten rid of the AITP.

Once brought out of crisis mode by a hematologist regarding my red cell count, I simply repeated the same process prescribed by my previous M.D. for the AITP over again. I had moved, so did not have the same doctors this time. I could find no local doctors willing to prescribe IVIG treatments for the AIHA, so just did without it. Just as with the platelet count, my red cell count gradually improved with my treatment plan approach. I achieved very longterm remission from that 2nd "incurable, chronic" rare AI related blood disorder, too.

We are each unique and different. What works for one may not always work for all. But I have learned that my body has amazing healing capabilities, once root causes are addressed, I find good caregivers, all of my body systems are supported and allowed to work together to do their job! I believe in "whatever works" to solve ANY of Life's many different challenges. 😏👍

I hope that you find my story helpful and it will give you hope, no matter what you are told by others. Best wishes that you will find the healing answers to whatever type of ITP you have, too. ✨

Thank you! We live in Northern Illinois so not too far from Wisconsin. I have made note of her name and will see if my insurance covers her. Thank you again!!

Hello,
I had acute ITP one year ago, was hospitalized with a platelet count of 3000 (3). Initially nothing worked. My platelet count dropped to 1000 (1). I don't know where you are located but I had an amazing hematologist in Appleton, WI, Dr Kathleen Hemauer. ( She is moving to the Milwaukee area in the near future).
IVIG, Dexamethasone, platelet transfusions did nothing. Initially N Plate didn't seem to be working either but eventually had a positive affect. I left the hospital on 80mg of prednisone with a platelet count of 12000 (12). Within about 4 weeks my platelet count was normal and I was off the prednisone in 60 days.
Dr. Hemauer is an intelligent, compassionate and dedicated doctor. I had a positive outcome and I credit her for that.
Best of luck to you, I hope you find the same quality of care that I was fortunate to have.