Newly diagnosed, Really low platelet count!

It's really shocking to me when I was told by doctor that I got ITP as a healthy guy, who has been working out and paying attention to health and food. I found two big bruises on both of my arms after moving into to a new place one month ago, and it took 2 weeks for them to disappear. During this period, once my nose kept bleeding for about half hour. So I became concerned about it since this had never happened before. My family called me after I did a blood test,and asked me to go to hospital right away. I did another test in hospital and my platelet count was only 10. Doctor gave me 1g/1kg ivig treatment that night, and my platelet count went up to 22 the next day. And then, they said I can go home and start to take prednisone(1mg/1kg) every day. But my platelet count went down to 18 one week later. Doctor told me that the medication seemed not working for me. I may need more treatments of ivig to increase my platelet count to a safe zone first. I got the results of my blood test last friday. It reads that WBC is 9.9(higher than normal), Platelet count is 18, and Platelet (immature) is 28%.

I really need help on this. Any idea if ivig doesn't work this time? What should I do next? Thanks a million.

The latest guidelines are here

bloodjournal.hematologylibrary.org/content/115/2/168.full

See the possible treatments and it's then a matter of choice decided between you and your haematologist.

IVIG didn't work for me either. Steroids did but it did take a few weeks to get a decent count. Personally I wouldn't panic at a count of 18 and would just continue with the steroids and see what happens. Just make sure you have a doctor who is experienced with treating ITP and you'll be fine.

By the way, white cell count goes up when on steroids so don't worry about it being a bit high.

There are other treatment options. IVIG is known to be temporary...you could call it a band-aid. If the steroids don't kick in, and they should work pretty quickly if you are going to respond at all, you should ask to taper off and try something else.

Most of us were healthy prior to being diagnosed with ITP. It can be triggered by many things...an illness, a medication, a supplement, an exposure to a toxin, you may never know. Anyway, you still are healthy, you just have below normal platelets.

As Ann said, hopefully you have a doctor who is informed with ITP. If you find that he isn't, try to find another doctor.

Ann wrote: The latest guidelines are here

bloodjournal.hematologylibrary.org/content/115/2/168.full

See the possible treatments and it's then a matter of choice decided between you and your haematologist.

IVIG didn't work for me either. Steroids did but it did take a few weeks to get a decent count. Personally I wouldn't panic at a count of 18 and would just continue with the steroids and see what happens. Just make sure you have a doctor who is experienced with treating ITP and you'll be fine.

By the way, white cell count goes up when on steroids so don't worry about it being a bit high.

Many thanks to your reply. I had two days of ivig and got the results. The platelet count went up 96 now, but doctor said I am in safe zone, and it may be just temporary. I will see doctor next week and discuss with her about my treatment later on. Right now, I am continuing taking steriods 50mg daily.

Sandi wrote: There are other treatment options. IVIG is known to be temporary...you could call it a band-aid. If the steroids don't kick in, and they should work pretty quickly if you are going to respond at all, you should ask to taper off and try something else.

Most of us were healthy prior to being diagnosed with ITP. It can be triggered by many things...an illness, a medication, a supplement, an exposure to a toxin, you may never know. Anyway, you still are healthy, you just have below normal platelets.

As Ann said, hopefully you have a doctor who is informed with ITP. If you find that he isn't, try to find another doctor.

Thanks Sandy. You are right. I had been depressed for two months since I moved to a new place before I was diagnosed ITP. Anther thing I recalled now is that I was bitten on hand by some animal in sea two months ago when I was swimming. I thought it might jellyfish and didn't pay attention to it. The bruise disappeared in 10 days. Do you think it might be the cause of ITP? It seemed that my doctor, who is hematologiest, is fully aware of ITP. Thanks for you reminding.

As far as I'm concerned, anything out of the ordinary can jump start the immune system and trigger ITP. SO yes, a bite could have been the trigger, although you will never know for sure.

My thinking, after years of researching, is that most people are predisposed to ITP and if it wouldn't have happened now, it would have happened eventually anyway.

Many doctors are aware of ITP, but believe me, many are not up to date on the most current research.

Sandi wrote: As far as I'm concerned, anything out of the ordinary can jump start the immune system and trigger ITP. SO yes, a bite could have been the trigger, although you will never know for sure.

My thinking, after years of researching, is that most people are predisposed to ITP and if it wouldn't have happened now, it would have happened eventually anyway.

Many doctors are aware of ITP, but believe me, many are not up to date on the most current research.

Thanks a lot. Sandy! I just got results today, and platelet count decresed from 96 to 73 as expected. Doctor asked me to take medication to cure the bacteria in my pylorus, and she said there's chance of increasing my platelet number after treatment. Hopefully, it will be the cause of my ITP.

I hope so, but the ITP success rate after treating H. Pylori isn't very high. Good luck and let us know!

Sandi wrote: I hope so, but the ITP success rate after treating H. Pylori isn't very high. Good luck and let us know!

Just got result of this week, and the number decreased from 73 to 45. I am disappointed about this. Don't know what to do next. It seems to that no treatment will make my number stable. Sandy, Do you have any suggestions?

As your'e asking Sandi I won't butt in but I want to wish you good luck anyway.

Ann - I wish you would answer because it's always good to get more than one opinion.

Tocean - ITP is a series of ups and downs. That is typical, especially at first when you are trying to find what works. If you realize that and try to accept it, it will make things much easier. Having a normal count is not necessary; having a safe count is. If you can stay above 20 or 30, you should be okay. Having counts lower than that can be a bit more serious, but most survive and do fine.

Remission is always the goal, but sometimes that isn't possible. It might take some time to get to that point, so patience is required. If you don't get a remission, it is still possible to lead a fairly normal life.

Some hematologists are very familiar with ITP and others are not. If you find that your doctor will only suggest IVIG, steroids and splenectomy, then he is old school and not very up to date. In that case, it's time to find a new one. There are other viable options for you. You could suggest Win-Rho or Rituxan at this point and see what he thinks. Check them out on the treatments page and see what you think.

Hopefully others will chime in and add their thoughts.

tocean22
go through this site, you will find much info on possible treatment options..
best of luck....

tocean, I was also a healthy guy of 36 years before being diagnosed with ITP. Never had a medical record file until ITP. I went through depression and moved. I feel my ITP was trigged due to a virus and stress. After diagnosis I was treated with Prednisone. Prednisone only worked as long as I was on higher doses and when I tapered off, counts dropped. Two Platalet transfussions whicn did not last. Two Rituxan treatments. First round lasted 16 months, second will be 3 years in Oct. ITP can be a Frustrating disorder!!!! It is a wait and see game. Response to treatments varies. My response with Rituxan was slow and at times discouraging. The first few months of this EVIL disorder is horrible, but once yor become familiar with ITP, it does get easier. Patience and a Positive attitude are two treatments you can provide to yourself!! ITP is a "Rollercoaster" ride. Many ups and downs.

Thanks a lot for you guys' encouragement and comments. Actually, I am getting better these days after realizing that depression won't be able to cure ITP. Recently, I had a really bad headache and went to emergency yesterday since I was worried about brain bleeding. Doctor did a CT check on my head, which showed normal. I also saw my hemotologist today, and she suggested me a bone marrow biospy, and imuran for the treatment, whoes function is to surpress my immune system and side-effect is strong. If it doesn't work, she suggested removing my spleen, which I don't want to. I read some articles that Chinese herb medicine has higher successful rate of treating ITP, and the side-effect is small. I may go to China soon after getting another around IVIG to boost my platelet count. Right now, my platelet count is down form 45 to 41. God bless me!

Im new to this as week.. just 2 weeks after being told I had ITP. At the 1st test my count was at zero. but I didnt have any nose bleeds just bruises. I got the IVIG for 8 hours straight along with a 12 hour dosage of RITUXIMAB, as being in the hospital. My count went up to 29,000. after getting out I stayed in bed with bad migraines and puking for days. This past Tues I went for another 5hr treatment in which my count had droped to 8,000. Next week I will be going to my 2nd treatment. I feel tired and weak all the time. How ist it affecting you?? As of being tired and all..?

I've only been diagnosed for three weeks, at age 65, and would like to see if I can live with a range of 30-40 sans what my doctor described as "poisons" to my body. I've had two IVIGs with no problem, one steroid treatment, which I'm still tired from, but no bigee, and taking nothing more. I was identified at 2,000, went in for "freckles" and unusual bruising. Kaiser has your blood tests available by computer, which lead to my discovery that my platelets had been steadily declining to 100,000 (Mar 2012) since 2009, which makes me optimistic that I could live comfortably at lower levels.

Today's 49, had the doctor suggest I consider Retuximab. My question is, am I placing myself in danger by riding this out awhile?

Is there any advantage to starting Retuximab when your platelets are higher to begin with?

Lum:

It depends. Some people can handle low counts with few symptoms, but being newly diagnosed, you don't have much of a past history to look at. How low would you be comfortable with?

Also, the older a person is, the greater the risk of bleeding due to weaker blood vessels. You might want to take that into consideration.

Sandi, It seems like many survive on 30,000-40,000...

The aim of the newer drugs is to maintain a count around 50. So unless there's any major bleeding it does seem a little early to think of treating at a count of 49, especially as the drugs are all fairly major treatments and not to be treated lightly. But maybe your doctor has a reason to want to treat that we don't know about.

Yes, many do fine with counts above 30. That would be a good conversation to have with your doctor - deciding on the level at which you both would prefer to treat, and why.

Ann, and Sandi: Just in case, the doc wants me to get a series of vaccinations in place while my levels are good and I'm drug free, so they will be protectively in place should I need my spleen removed (Something he isn't overly in favor of). Seems like they would be a good idea period. Anyway, I am scarfing down multiple Kryptonite Super K Foods to combat the ninja packmen devouring my platelets and keep my count up so I can get those three, a flu shot and hopefully a shingles one, but not all at the same time! He only wanted me to think about starting Rituximab, so seems willing to see how this all plays out. What should I expect after getting vaccinations, especially multiple? I'm interested in the spacing of them. Also is there such a thing as being too low to take them? Thanks for all of your input!

The only reason I can think of that would be a problem with vaccines and low counts would be intramuscular bleeding. Now that would be with very low counts and probably in an individual with symptoms. I'm sure your doctor would be able to judge what an acceptable count is.

As far as splenectomy for ITP; it is almost never attached to the word "need". It is a treatment like the others and it may or may not work. There is one pro and lots of cons. I'm glad your doctor isn't really pushing so you can really take time to make that decision.

My haematologist who is the primary UK expert doesn't do splenectomy any more. He says so in this talk..

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Doesn't mean you don't have to have one yourself but something to think about.

When I had vaccinations for work last year I waited to see what the occupational nurse would do knowing that I had low platelets but he did nothing. He should have asked me my count and if low done the injections subcutaneously but he just went ahead with the intramuscular. I knew my count was good so I didn't say anything but I was pretty disgusted really. So you really do have to keep your wits about you and look out for yourself.

I can't comment on actually getting the vaccinations. My hep B one resulted in me having an immune neutropenia for 9 months which was fun. A blood test showed that the vaccination hadn't even taken but I won't be doing it again.