Immune Thrombocytopenia Purpura (ITP): What helps?

My lowest plate count has been 35 and my highest is 86 dont understand why I'm tired all the time fell sick dizzy and ache all the time help is there anything tha will make me feel better I just keep falling asleep no quality of life the way I feel despessed and anxious all the time please advice

Hello Teresa, It sounds like you’ve had such a horrible year since being diagnosed with Immune Thrombocytopenia Purpura (ITP). It’s awful when you feel like this and have anxiety running the life.

ITP is a blood disease caused by the body’s immune reacting against its platelets. Sometimes the cause isn’t known but there are factors that can trigger the response to happen.
Medications, infections, typically viral infections, including chicken pox, hepatitis C, and AIDS, Covid, Epstein Bar virus can prompt antibodies that cross-react with platelets.
There are Immune disorders, such as rheumatoid arthritis and lupus
Low-grade lymphomas and leukemias may produce abnormal antibodies against platelet proteins.
https://www.mayoclinic.org/diseases-conditions/idiopathic-thrombocytopenic-purpura/diagnosis-treatment/drc-20352330
You may never know the cause of your reduction in platelets. But it’s clear something is going on with your immune system to have you feeling so sick, dizzy and achy all the time.
It sounds as though you’re getting routine blood work run but have you had any other tests run to check for auto immune diseases, a bone marrow biopsy to check the health of the bone marrow…which is the blood manufacturing center of the body?
When your platelets are low, you can have excess bleeding with cuts and bruise easily. Does this happen to you? Has any medication been recommended to help slow the progression of the disease?

Welcome, @merchant700. I sure hope that Doptelet works for you so you can continue traveling internationally without having to make appointments while away from home. Keep putting on those miles! 🙂

I had all the test scans biopsy ect but no under lined condition so I'm confuse had a mini stroke just before christmas and have raynards and arthritis onto type but still no answers

I was diagnosed with ITP nearly 50 years ago. My platelet count when it started was barely 2k. I was in my senior year of highschool and on gymnastics team. The day I was diagnosed I had completed 100 continuous backflips on trampoline, so I was feeling no symptoms. The only symptom that took me to Emergency room that day was rash on my forearm (peteichiae), my mom insisted I get checked out. I landed in Mott's Children's hospital Ann Arbor inpatient over 40 days as they wouldn't release me until platelet count was 40k or better. I was put on high dose Prednisone and Cytoxan. At that time I was told all my symptoms were leukemia but it was not. I had several platelet transfusions, bone marrow aspiration and all pointed to unknown cause (idiopathic). After 4 years of medication high dose Prednisone and Cytoxan hardly any change in counts 60k at best, gained 50 lbs from Prednisone on salt restricted diet and started to effect me without stomach ulcers. Suggestion for spleen removeal, said may cure 50% chance. Had splenectomy 1979. My platelet count within a couple months went to 800K and then leveled to 400K after a few more months. I had no more issues until later in life. I'm now finding the long term medications have taken their toll on my bones and possibly blood clotting. For about the last 15 years platelets have been normal range 250k-350k I have also had a few broken bones in feet and due to accident currently have broken Fibula and Superficial Thombus in a deep calf vein caused by wearing a medical boot. I have been to a few different Hematologists over the years, one told me I'm lucky 1 in 200k to have Platelets in normal range, literally told me go home don't have to worry. Well I get phlebitis in my hands often and last 3 years have had some in feet, until this broken Fibula now more serious in deep vein calf. My platelets still in normal 198k. I have taken a 81mg asprin for about 12 years and it helps me. Also when I received my 2nd COVID vaccine (Moderma) within 10 minutes I got a quarter size blood clot in my wrist. A week later ultrasound confirmed it although by then it was size of a dime.
Reason for my long story, if I had known the long term damage the meds were doing I wouldn't have waited so long to have spleen removeal.
Good luck to you and do seek a second opinion if not being taken care seriously.

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.

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!!

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. ✨

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 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?