Patient Comments: Thrombocytopenia - Describe Your Experience

What�s your biggest challenge with living with Thrombocytopenia?

Comment from: Alicia, 19-24 Female (Patient) Published: September 14

Two days ago a received a flu vaccine. I do not recall if my arm was swabbed first. I immediately had pain, redness, and swelling. I decided to wait it out, figuring it was due to the shot. The next morning I woke up and my upper arm was very rigid, very red, very hot to the touch, and sore. I went to the walk in clinic and was diagnosed with cellulitis. I started antibiotics yesterday. I am still in pain but hopeful the antibiotics will kick in soon and start to relieve some of that pain.

Was this comment helpful?Yes
Comment from: Anti, 55-64 Female (Patient) Published: November 13

In 1991 I had to have a cervical discectomy of C5 to C7. During the surgery the chief resident said for some reason I somehow lost 3 liters of blood (1 pint less than your total blood volume). Prior to making the incision in my neck they removed the bone graft for the fusion. At that time they put my head in a halo to stabilize my neck for the time being. Ironically, they threw my graft away admitting they really were losing me and there was not much sense saving it. Well, thank goodness I did make it. They put me in ICU on Christmas Eve. I was 34 years old then. Last year at the left halo site all my skin fell off the hole and I pulled out a V shaped piece of stitching. This year again on the left side I get large eruptions that are full of thick, white matter. Below is a very tight stitch that is connected very tightly to both ends. My doctor has cut one of them but as of today I have cut 37 stitches all over the left side of my head. My question is why they would stitch in this manner and why it would take 25 years to erupt.

Was this comment helpful?Yes
Comment from: MomandDaughter, 55-64 Female (Caregiver) Published: June 09

My daughter has had a low platelet count since birth and now she is 27 years old with no major problems caused by her thrombocytopenia. They've tried steroids to bump them up and within 48 hours her platelets were back under 10000. She's tried chemotherapy and it didn't work and she's tried platelet transfusion from 10 different donors and with 48 hours those were rejected by her own body. Your body looks at this as a foreign object and destroys platelets. One observation over the last 27 years is that her platelets have been consistently below 10000. She was born with low platelet recognized by pediatrician in hospital, petechia on back, as a young child the highest her platelets ever got were 45000, now today at age 27 they are consistently between 2000 and 8000. Steroids, chemotherapy, transfusion, nothing worked. Bone marrow biopsies determined they are made, she has young plump platelets which is good, but very few.

Was this comment helpful?Yes
Comment from: 55-64 Female (Patient) Published: May 15

Inadvertently I discovered low platelet count (thrombocytopenia) when I went in for a shoulder repair surgery. Count was 82. I have many medical issues, off most medicines for two weeks in preparation for surgery. Surgery canceled now, I am scheduled for a workup with a hematologist.

Was this comment helpful?Yes
Comment from: Ania, 35-44 Female (Patient) Published: December 16

I've always bruised easily but this October 2013, I've noticed the bruises literally would appear out of nowhere, huge and really dark and would stay on for weeks. I began to look like an abused woman so got a CBC (complete blood count) done and discovered my platelet count was 11,000. It later fell to 10,000 when I finally went to the emergency room two days later and by then I had developed the petechiae as well. I did not bleed at all at any time. They've run tests for known infections to determine if that was causing my thrombocytopenia and I guess by elimination I was diagnosed with ITP (idiopathic thrombocytopenic purpura) and put on 90mg of prednisone. I have responded very quickly, going up to 58 in 3 days and 114 within a week, so my doctor has lowered my levels to 60, then 40, 30 and just today (Dec. 10) to 20mg - my platelets have been at around 220-240 the whole time, so we are looking at continuing to take me off it in the next 3-4 weeks. As many of you know, it is imperative to wean off slowly as the natural production of corticosteroids is essentially stopped when on oral steroids and the body needs time to kick back in. Really hoping to be in the 50% that never have remission, because I would hate to be on steroids for extended time. I've also been diagnosed with severe anemia so have been on high dose of iron and not sure if it is the iron or the steroids or both, but it really increased my energy levels and I actually lost weight. I have certainly gained a new appreciation for people who "don't look sick."

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Thrombocytopenia (Low Platelet Count) - Causes Question: What was the cause of your thrombocytopenia?
Thrombocytopenia (Low Platelet Count) - Symptoms Question: What were your symptoms associated with a low platelet count?
Thrombocytopenia (Low Platelet Count) - Diagnosis Question: What changes have you had to make to your routine since being diagnosed with thrombocytopenia?
Thrombocytopenia (Low Platelet Count) - Treatment Question: What kinds of treatment did you receive for thrombocytopenia?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors