Patient Comments: Thrombocytopenia - Describe Your Experience

Question:

What’s your biggest challenge with living with Thrombocytopenia? Submit Your Comment

Comment from: sarah, 35-44 Female (Patient) Published: September 22

Nobody wants to try and fix the problem of thrombocytopenia, they only give me drugs for the symptoms. Steroids are addictive and withdrawal was horrific. Transfusion was like having flu for a month and was only a short term fix for a C-section. I am constantly exhausted and yet have no outward symptoms, which makes me feel alone and isolated as everyone sees you as fine. I have been offered eltrombopag but with no long term use data I am afraid my body will have worse repercussions in later life due to wearing out of production system to combat the immune destruction. Living with exhaustion is taking its toll on me and my family so I am considering it as I am so fed up of feeling so awful.

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.

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.

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.

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.

Comment from: NORM, 65-74 Male (Patient) Published: September 27

Thrombocytopenia was diagnosed in September 2014, and doctor told me to get 2 blood tests a year. My platelet level in 2014 was 115, as of 9/15/17 it is 90.

Comment from: M. Davis, 45-54 Male (Patient) Published: May 18

Yellow in the whites of my eyes was the first symptom of liver disease I experienced. I had a liver transplant on March 19, 1986, over 30 years now and still going. I turned 26 while I waited for my liver. I had a disease attack my liver when I was about 21 years old, primary sclerosis cholangitis (PSC). I have been very fortunate. I have had a donor liver over half my life. Since the transplant I have had 3 awesome kids all in college now and an angel for a wife. A year after the surgery, I was able to go back and finish dental school. There have been a few rough times, but never rejection. PSC is the closing down of the bile ducts.

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."

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Comment from: 13-18 Female (Caregiver) Published: October 18

My daughter was just diagnosed with low platelets (thrombocytopenia). She had this for the first time a year ago, just by way of a physical and CBC done. No sickness, bleeding, spots or anything and her count was 14. They did a transfusion immediately and her count rose a little and they started her on a low dose of prednisone. Months later her platelet levels began to rise. So no treatment was further needed. Eleven months later, two weeks ago, she had a nose bleed for about 4 hours which led us up in the emergency room, her platelet count was down to a 9, they did a transfusion, a week later the count was up to 69, and now today two weeks after the transfusion her levels have dropped to a 49. She has no symptoms, no sickness, no real noticeable tiredness. This is really strange. She played a weekend of basketball and that Monday found out her platelets were 14. This is scary that she has no signs. They have given her no medicine, no nothing, just keeping track of her levels weekly.

Comment from: MGV, 25-34 Female (Caregiver) Published: August 25

My wife (28 years old) is affected by thrombocytopenia. Before 12 days she had only 22000 platelets and the Hb was 3 gm. After the 5 days treatment she had Hb 10.4 gm and 64000 platelets. She need to increase the platelets level to above 150000.

Comment from: Mingo, 65-74 Male (Patient) Published: December 16

I am a 69 years old male. ITP (Idiopathic thrombocytopenic purpura) for at least 8 years. I didn't find out till 2 weeks ago when I developed petechia and purple skin all over body, headache fatigue, loss of appetite, chills and jaundice. Except for purple skin and petechia, other symptoms have been since springtime gradually increasing and also I do not drink much liquids. I went to the emergency room. Platelets 102 and nothing was given. CT and chest x-ray good. I also get night sweats sometimes and it's enough to warrant a change of shirt. I have no fever. Three years ago had 2 episodes of urinary bleed. Everything checked out okay.

Comment from: Lilly, 19-24 Female (Patient) Published: May 14

So I just took a fbe or cbc. The doctor found I have mild thrombocytopenia. My count from what I know is 139,000. I feel fortunate it isn't lower as many others I read off here. I took another test. Now awaiting results and going to a hematologist next up on my list. I've been reading about all the things that can be happening to me in the next few months like tests and such. Just getting prepared and I'm hoping I can get it fixed up but I'm a bit nervous if I ever have to remove my spleen. I'd feel some grief having a piece in my body gone!

Comment from: genna, 75 or over Female (Patient) Published: May 09

I discovered I had Amegakaryocytic thrombocytopenia almost two years ago. My platelets have gone down to as low as 2. Been hospitalized quite a few times. Been on Cyclasporin which affected my kidneys another 5 day intense treatment, sorry can't remember the name, had to be hospitalized for two weeks for that. Needless to say nothing has worked. Hospitals are trying to get another drug to try but so far aren't having much luck. I'm surviving on platelets 5 times a fortnight and blood transfusion once a fortnight. Would be a lot easier if I could get medication!

Comment from: carriewaleisky, 0-2 Female (Caregiver) Published: March 20

My 2year old son went in for a regular physical, where they heard a heart murmur for the first time, the week before his appt. he had developed a severe stutter that came and went after a week, he had 2 nose bleeds. They had a cbc done and resulted in a platelet count of 37,000, doctors followed up with another cbc 2 days later and resulted in a platelet of 45,000. They advised me that he had ITP caused by a viral infection (even though he has not been sick ever, but has had enlarged lymph nodes since he was a baby) they told me he was fine, not to worry and to give him a multivitamin with iron (I did) and to have labs drawn in 2 weeks, they said they should be back to normal by then. 2 weeks later his levels dropped back to 40,000. They want me to wait a week and have labs done again. I don't know what to do, or how to feel about this. I'm not confident in the doctors and the procedures they are following.

Comment from: ghie, 45-54 Female (Patient) Published: November 16

I was diagnosed as ITP with anemia thru bone marrow biopsy. I was on steroid for 2 years and off medication for the last 4 years, but, my hemoglobin level down to 9.2 so i decided to take iron supplement twice a day. After a month i checked my CBC my Hgb dramatically increased to 13 but my platelet down to 65 from previous result of 175.there was a time that my Hematologist suggested spleenectomy when my platelet dropped to 26 after weaning from steroids but i didn't buy the idea. I'm working in a shift. I'm a nurse.

Comment from: susanML4650, 55-64 Female (Patient) Published: January 25

I have had Thrombocytopenia since 2001. Four years ago I went to a Hematologist-Oncologist and all he did was check my platelets and tell me if I started to bleed, get to an ER. I switched to another Doctor back in July of 2009. He was supposed to be "The Best" for Thrombocytopenia. After four months my platelets dropped to 19. I felt fine, just a little more tired then usual. The doctor decided to put me on 80mg. of Prednisone daily for three months. After 6 weeks, my lips, tongue, and esophagus were burning. It was also starting to burn my stomach. The only way I could stop the burn a bit was drink milk. LOTS of milk.(1/2 gallon per day-skim). When I went to my PCP Doctor, he said to start weaning myself off of the Prednisone because it appears I had developed an allergy to the meds. When I called The Hematologist, he was angry that I was weaning off of it. My platelets had risen to 81 and that was the best they had been in 5 years. When I went to see the Hematologist again, he said I went off of the Prednisone too soon. (4 Weeks of weaning). He pretty much wrote me off and said he would see me in two months. I had been going in every 3 weeks. My platelets slipped down to 61 and I now have Diabetes, High Blood Pressure and high Cholesterol and Triglycerides, that I never had before the Prednisone treatment. From what I have read, there is no cure for this.

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Comment from: Rachel, 65-74 Female (Patient) Published: August 18

I feel like a guinea pig. I have blood draws regularly, but limited treatment. One hospitalization with high dosages of prednisone, then immune globulin, and suggested experimental drug with harmful side effects. Over a three year period my platelets hovered in the 70-90 range. Now they are 36 and I am on a short-term dexamethasone treatment with a possible consideration of another highly experimental therapy. My liver is starting to show some elevations, I recently had a lot of X rays and I think the x-rays may have lowered my platelets. Not enough research in this area. More needs to be done. Causal factors need to be found and treatments that are safe need to be found. Cortizone is not the answer either.

Comment from: Hopeful, 35-44 Female Published: June 08

I asked my doctor if I could have a blood test to check my vitamin levels. I was feeling tired, loved to eat ice. The results appeared to show that I had a severe case of anemia. I started taking Iron Supplement. Followed by another blood test all areas related to anemia appeared to look normal but my platelet counts went down to 14. Following another blood test 4 days later platelet count went down to 10. I wasn't experiencing any bleeding except for a strange (something) looks like plantar warts on one of my foot. I was advised to go into ER. ER doctor suggested optional platelet transfusion. A Hematologist speculated ITP or TTP. So I've started taking prednisone. I've been feeling perfectly fine. I'm just concern with 5 weeks of taking prednisone the side effects that I my experience.

Comment from: hillbillyway, 55-64 Female (Patient) Published: June 16

With thrombocytopenia my platelet count goes down to 16 or 18.

Comment from: David C, 35-44 Male (Caregiver) Published: July 19

I was home for the weekend and had been feeling tired an it felt like the flu. So I told my girlfriend that I was going to go wash my truck-get out of the house and maybe feel better.Well I was washing it and my right arm went numb so I kept washing for a minute then my whole right side of body went numb.I said oh shit so I jumped in my truck and hauled ass as fast as I could to the hospital.w hen I got Their I couldn't feel my legs of feet so I made it in the hospital and couldn't even speak. I was having a stroke. They careflighted me to wichita falls,Tx, I was there about hour receiving blood transfusions,The doctor that saved my life was Dr chalagala she put through 34 fresh frozen plasma treatments an was in hospital 44 days as of now no problems yet.If anyone that helped me through that horrible experience thank u very much.

Comment from: ITP_patient, 25-34 Female (Patient) Published: June 25

I am diagnosed with low blood platelet count in month of JUL12. number of platelet were 75K, however one year before it was 298K. since after I am having regular blood check ups and platelet count is approximately 100, with no symptoms. Just I was having heavy menses. but perfectly healthy with no other symptom. Problem arises when I get pregnant. In first trimester, my platelet count drops to 50K but stable. one day, I have severe gastroenteritis infection, which led to drop my platelet level 25K, and then with in few days 9K. I was on transfusion once. but after that I started taking care of my diet very closely. now it is 70 and in 5th month of pregnancy. and taking 5mg of prednisolone. now i am feeling much better and energetic. those people with ITP are need to mange their lives closely. take care of your diet rich of folic acid and vitamin B12. take lean meat in their meal. do not just go on numbers. if you have no symptoms, generally it safe. but avoid any other medication which reduce blood platelet level.

Comment from: Coach, 45-54 Male (Patient) Published: April 08

I am a 49-year-old male and was first diagnosed with ITP in 1994. I became sick less than a month after the flu. After months of prednisone and intravenous immunoglobulin (IVIG), it went into remission. I had no more symptoms until 2012. In September of 2012 I went for my annual flu shot. A week later, I was covered with red dots. IVIG didn't work this time around. Rituxan has worked so far, but unlike the 1994 bout, my counts are low. I'd say worry about getting to 50k and then live the life you have been given. You could have a million things far more sinister. If they put you in oncology, you will understand.

Comment from: GammiSherry, 55-64 Female (Patient) Published: January 03

I was diagnosed with immune Thrombocytopenia many years ago. My platelet count averages in the 35,000 range. I do not experience bleeding, but usually have many bruises on my arms, legs, and body. I need gall bladder surgery and was sent to a hematologist. He will give me N-plate shots to increase my platelet levels before surgery. I teach school, but am feeling so fatigued, weak, and have muscle aches. The hematologist does not believe these symptoms are related to my ITP. He said, "You don't feel platelets." I disagree because once I was given platelets through an IV, and for several days, I had so much energy and felt so good. I am 55 years old and live a normal life. I just do not like the bruising and wish I felt better.

Comment from: Fabulana, 25-34 Female (Patient) Published: September 07

I was diagnosed in 2000 at the age of 17. I was fatigued and had blue marks all over. My platelet count was 2 000 and I was hospitalized. I was on 60 mg prednisone for 6 months but didn't see much of an improvement, I then had a splenectomy and was weaned off the prednisone. my platelets were fine but dipped during my pregnancies, but not lower than 80 000. It has been stable at over 300 000 for a while.

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Comment from: Neets, 35-44 Female (Patient) Published: January 11

I was in the shower when I felt hot burning sensations across specific areas of my body. I looked to find severe bruising and pooling of blood across my arms and legs, with heavy blood pin-prick rashes. These were developing as I was getting dry. I was rushed into hospital by my doctor and my platelet count was under ten thousand. My gums and nose were bleeding at this stage and bruising and bleeding were happening all over my body, including my head. I was given an immediate platelet transfusion but my body attacked the platelets. After three transfusions, on three consecutive days, we managed to get my count up to 100,000. I do worry it could happen again. But for now I am back fighting fit and riding my horse.

Comment from: Cheryl, 7-12 Female (Caregiver) Published: October 07

My 8 yr. old grandaughter has had ITP for over a year now. She has gone through alot of testing and poking from one blood test, infusion, chemo, and now they want to try something else because none of them have worked for her. It breaks my heart everytime we take her for check ups or infusions. She is tiring from the poking and infusions. Next may be CELLCEPT with Vincristine.

Comment from: chuchie, 55-64 Male (Caregiver) Published: October 07

My husband has hepatitis C. He has been living with this for 10 yrs. now. Only in the past 2 to 3 yrs. have symptoms begun to effect his life drastically, such as severe fluid retention, dangerously low platlets, bruises easly, and medications effect him in different ways too. Somehow our whole life changed, making what we thought would be a lifetime together into hoping he wakes everyday.

Comment from: 25-34 Female (Patient) Published: January 04

I am a 28 year old female. I discovered thrombocytopenia accidently during my first pregnancy where my platelet count falls to 48,000 and thus induced abruptio placenta and I lost my baby which was 23 weeks. I followed up and my platelets count returned normal after one week. Then I got pregnant again after one month and I investigated the cause of thrombocytopenia which was unknown then I experienced abruptio placenta again at 33 weeks and my platelets was 33,000 and I have a premature baby.

Comment from: Andre, 45-54 Male (Patient) Published: June 14

I was diagnosed with low platelets (thrombocytopenia purpura) of 1 and hospitalized for 10 days. My doctor treated me with one treatment of rituxan and my platelets went up from 1 to 388. The average range is 142 to 425. He suggested that I should have at least 4 treatments of rituxan. I had the second treatment last Wednesday and I feel I didn't need it since my platelets are good now. He wants me to do the other 2 treatments and I'm reluctant to do them. My doctor says that I almost died and my insurance approved 4 treatments.

Comment from: stacey, 25-34 Female (Caregiver) Published: December 07

I have a friend who is presently hospitalized with thrombocytopenia. She has ITP. Red patches suddenly started appearing on her body, her gums and she had profuse bleeding. She had platelet transfusion and has been on steroids. Though her platelet count has risen considerably now, the prolonged steroid therapy has induced diabetes and her blood-glucose level is high. I am happy she will be out of hospital soon and her sugar level is well handled. I sure do hope it doesn't reoccur.

Comment from: libs, 25-34 Female (Patient) Published: November 12

I was treated for thrombocytopenia 12 years ago and have never looked back. First I was put on a prescription of steroids and every time I came off of them my platelet count would drop to its lowest 16, after three relapses I went into the hospital to have my spleen removed and I have never looked back for the past two years I have not needed any check-ups. It's great I would recommend you look into this as a way to treat ITP. You never know it could also work for you.

Comment from: sha, 65-74 Female (Patient) Published: November 13

I have lung cancer and have been taking chemotherapy. I still need chemo but my platelets always are below 100 and the doctor said they have to be 100 or more. He put me on steroids for one week and the platelets improved.

Comment from: Bev, 45-54 Female (Patient) Published: March 26

My family has a history of Thrombocytopenia. Me, my oldest son, and his two children were all born without the ability to make platelets. After the age of two months we seem to be able to produce them, except my grandson. His turned into aplastic anemia and he needed a bone marrow transplant. He is doing fine now, but we have no explanation into why or how this even happened. I have a cousin whose son died as an infant from this condition. If anyone has information I would love to hear it.

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