Immune Thrombocytopenia Purpura (ITP): What helps?

Thank You for your well wishes. Have you had any adverse side-effects from NPlate?

Nplate < romiplostim > is a weekly injection that helped me when all else
failed , dxed three years ago with ITP and have had platelet count as low as 1.
Wishing you a good outcome.
Geno.

Hi @michey. Oh those stubborn husbands! You’re right to lovingly push him to up on that latest blood test which showed a further drop in platelets and and his red blood cells. It may be nothing more than something to raise an eyebrow but the fact that he is seeing some changes means it’s time to take a closer look.

No lectures from me…we’re all guilty of checking out Dr Google. The good “doctor” is all knowing, but unfortunately sometimes all that information leads us down a rabbit hole filled with twists and turns that aren’t even relevant. So, from experience, the best thing to do is wait until you hear what the doctor has to say. And yes, you should go with your husband if he relents, to take notes! All of my doctors/oncologist/hematologists welcomed my husband to appointments. As patients we’re trying to listen to everything with information flying at us 100 mph. So having a spouse or good friend along to grab some notes & give support is an excellent idea.

One note, depending on how low his platelets are your husband might need to avoid knife juggling until he gets in for his visit. But keep up those amazing hikes and good life style. That’s worked well for him (and you) for 80 years with no meds. That was always my goal too…then Mother Nature had a surprise for me…😏. But my medical teams have all said my previous lifestyle is what had me recovering so quickly. Our healthy diets, exercise and positivity most definitely impacts our quality of life.

I know it’s human nature to worry but try not to read too much into these blood tests right now. You also found out you have MGUS, one of a number of watchful waiting conditions that often require no immediate treatments. 🙃Let me know what you find out next week, ok?

I originally came to connect.mayoclinic.org to learn more about my own MGUS condition.
However, I am now here for my husband. For 2 months, my husband has had red itchy bumps on his legs and lower torso for which his dermatologist and allergist did not have an answer and prescribed a light steroid cream. The itch and pain from the bumps is disturbing his relaxation periods and sleep.
After much nagging from me, my husband finally got his CBC and CMP tests done last week. The tests revealed LOW platelets (which were low last year too but his doctor said don't worry and then his doctor passed away 2 weeks later). He also now has LOW RBC, Hemoglobin, and Hematocrit.
Then, I continued my loving nagging for him to either see his new primary care doctor sooner or at least, call her to get his iron and ferritin tests done OR immediately get an appointment with a hematologist/oncologist.
All fell upon his deaf ears and I think he is now scared.
Anyway, he will finally seeing his primary care doctor next week and I am in the process of seeking his OK to come with him to listen and take notes.
My husband is an extremely fit 80 year old and is out hiking in Jockey Hollow National Park (Morristown, NJ) for his usual 5 mile hike and we eat a largely plant based organic diet. We are both fortunate to not be on any medications.
Anyway, I have since done my own googling which finds me here for ITP/TTP. (Please no lectures about googling!) Of course, I hope I am wrong.
TMI (too much information) I am sure so please accept my apologies in advance. Please know that I am grateful for your posts above and thank you all. I will try to report back again.

I was just diagnosed 2 weeks ago. B12 supplements are what was suggested to me. Exercise, no sugar, dairy products and bleached flour, rice.

My 24 year old son developed severe liver dysfunction mere weeks after booster shot. He now also has ITP and platelet levels are 8 - white blood cell count is 1. He has had 4 platelet transfusions but counts drop the next day. They won't do bone marrow biopsy because his platelets are too low. Steroids have decreased high liver enzyme levels and his Bilirubin which was 13 is now 2.8. Any success with medications that boost platelets available?

Twenty plus years ago, I was dxed with autoimmune related ITP. When standard Rx protocols of traditional medicine caused me more harm than good due to Rx side-effects, I worked with an M.D. who was certified in alternative medicine (I believe the field is now called functional medicine).

She put me through a 10 day detox and I followed a customized nutritional program consisting of foods to which I had no or little immune response. Immune response levels can be different from one person to the next. Also over time, my immune responses changed as I learned to eat clean foods, free from synthetic chemicals, etc. -preferably organic or at least, GMO free.

I received a customized dietary plan to follow after my blood was tested for immune response levels to 150 different foods & substances. Such tests have probably changed due to new technologies developed since then.

What I did may not work for everyone. IMHO, there is no one-size-fits-all when it comes to healing. But within 6mos. of using a nutritional approach, along with IVIG infusions (to help stabilize my platelet count at first, they soon became unnecessary), my platelet count gradually climbed back up into a normal healthy range.

I am on my own regarding nutrition now. My foods are is much less strict and diverse. I learned to read labels on everything (even toiletries, household products, etc.) I just stay away from foods which contain ingredients I can't pronounce and use natural, nontoxic, chemical-free products, My platelets have stayed within a normal healthy range ever since. (approx. 20yrs. so far)

If you aren't able to turn to a functional medicine doctor, you could try the route of a certified Nutritional Therapist, who uses a functional medicine approach. I would however advise that whoever is the PCP is aware of and supportive of your plans to encorporate a nutritional approach to your son's wellness plan.

I hope my story has been helpful as you look into ways to increase your son's platelet count. However, it may be different for patients whose ITP has not been determined as autoimmune related destruction of healthy platelets.

@cathy77, how is he doing with this diagnosis? How are you doing?

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.