Newly Diagnosed and Trying To FInd Answers

About two weeks ago I had a visit to the dermatologist and mentioned some unusual bruising I had been experiencing. He did a CBC and found the platelets really low (12,000) and I was admitted to the hospital just prior to Labor Day weekend. I did a round of 4 day of 40 mgs of dexa...something steroid and by a week ago by platelets were up to 118,000. Not normal but close. A week later, I went in for a blood draw and it had dropped back down to 5,000. Back to the hospital. I received two bags of platelets the first night and a 60mg dose of prednisone. Platelets up to 8,000 the following morning morning with two more bags of platelets and more steroids. So far all tests including bone marrow biopsy has been normal. No one seems to know the cause. Right now it is being called ITP. Thursday morning the doctor who came in mentioned removing the spleen. It was normal (on ultrasound) two weeks ago. Is this routine to be removed? Any ideas on what could cause the continued drop of platelets. One thought from the dermatologist was the singular I take for asthma. I quit taking it two weeks ago. How long would it take to get the singular out of the system and the effects to be reversed, or is that even a possibility? Also anyone know of any natural treatments that work? I've read that papaya leaf extract can make a difference. Any thoughts. This is all new ground for me and I am normally a overall healthy person at 40. Thanks for any input you might have!

Hi Ann, welcome to the "family".

If you've only been diagnosed for two weeks, it's way too early to be talking about a splenectomy. I held off for two years before going that route. And even if you do have one, there is no guarantee it will put you in remission. Go to the treatments page on this site and read about what's out there. You might be one of the lucky ones and have it go away on it's own. With any luck, others will post answers too. If you don't want a splenectomy, you don't have to have one!

Ann, Relatively new to this as well just since the end of June. I am also healthy and 42 years old. All my tests have been normal except for the platelets as well. It is very frustrating because there are no "causes" for my condition. If it is ItP the platelet transfusions won't work because your immune system will just do away with those platelets they give you. Ivig works temporarily to get you out of those dangerous levels but usually wears off after a few weeks. Sometimes the itp is acute and will right itself over time if it persists they call it chronic and other treatments are tried to raise levels and stimulate a remission. It's only been a few months for me but I have not been able to maintain any normal ranges for more than a few days. I am not interested in a splenectomy this early in my diagnosis. Still hoping that the rounds of Rituximab I did a few weeks ago will kick in and put me close to normal or at least out of the dangerous levels. So for now I just watch for bleeding signs and have my levels checked weekly. I have a thread that I started you should be able to search it that I have been updating during my course of treatments. It may be of interest to you to read the other stories on here. I know it was good for me. I am certainly more proactive than I would have been if it wasnt for this site. There is a ton of helpful information and helpful people here. Good luck!

Hello there Ann! Glad you found us.

ITP is autoimmune, just like asthma is. Your body just decides that it doesn't like platelets, sees them as a foreign body, and makes antibodies to remove them. There is no known cause. I know that is hard to accept, but think of it this way. Would you ask what caused MS if you had that? Or what caused your asthma? Sometimes things just happen. If a person has one autoimmune disorder, they can be prone to others.

Singular could have triggered ITP, but stopping a drug does not always reverse ITP.

I think you need to find a hematologist who is familiar with ITP. There are a few things in your story that lead me to believe that your doctor isn't all that up to date.

All treatments are designed to bring counts up, but most of the time, they fall again when the treatment wears off. That is pretty typical. Some treatments can put a person into remission, but that can take time. Counts over 30 are considered safe and although normal counts are the goal, you don't have to be that high to live a normal life. Many people have lots of ups and downs until they find a suitable treatment.

Splenectomy is just another treatment that may or may not work. It normally isn't something that should be considered early in the diagnosis and is actually fading out as a viable ITP treatment. It's pretty old-school, which is why I'd suggest a second opinion.

Hey !!!!
I was diagnosed the same time as you and was put in the hosiptal the same time as well. When my first count was checked, it was at ZERO !! while in the hospital it was brought up to 29,000. 3 days after I got out, it was checked again and had drop to 8,000.... I spend alot of times in the bed to weak to do anything.. I sent all day yesterday in the bed as well. Today I up more but everytime I stand up I get dizzy... Its all new to me as well, I wish you the best with yours....

Welcome Ann. Personally I feel it is way to soon to consider a Splenectomy. A Splenectomy is an "old school" procedure. Once your Spleen is removed, there is no replacing it and there is no guarantee it will put you into remission. Also without the Spleen you are more likely to get a serious or life threatening illness and longer recovery from the common illnesses. There are many other treatment options available, all of which involve a medication. Treatments for ITP is a wait and see game. Not everyone responds the same with these treatments. Initially I was treated with Prednisone, but counts would drop as I tapered off and counts did not increase much. When I was under 5k, I was given 2 Platelet transfusions which did not work. 4 rounds of Rituxan was the next treatment. I was in remission for 16 months. Counts dropped again so another 4 rounds of Rituxan, which has me in remission for almost 3 years!! It is unknown what exactly causes ITP. There are so many possible triggers for it. A medication, chemicals in the food we eat/air we breathe. Personally I feel mine was triggered due to a Virus and triggered ever further due to stress. Treatment options are YOUR decision!! So look around on this site and research ITP/treatments. Just try not to stress out over this. You will be OK!! You are not alone Ann.