Treatment

Hello Everyone,

So I was diagnosed with ITP 2.5 years ago. For about 2 years my platelet counts stayed 30k+ so no treatment was needed. Unfortunately this past February they dipped quick to 16k so I was put on prednisone. The effects were there but they weren’t as horrible as some people.I am off it and my platelet count as of last Friday was 32k. My doctor says if it drops to treatment levels again, I will have prednisone one more time and then after that it’s the spleen surgery. I am terrified about the spleen survey. My research says it doesn’t even work half the time and many times it comes back later in life. It’s also a lifetime of worrying about getting sick. What are other treatment options? How is getting your spleen taking out? Also I have had no symptoms at all! The anxiety and the prednisone caused more problems then the actual disease. Help! Thank you!

Hi, welcome!! I’m a bit of a newbie as I was diagnosed this past December, but I wanted to tell you about the treatments I have personally tried!! My ITP was steroid refractory so we don’t really bother with prednisone anymore...I ended up starting Promacta (a pill taken once a day to stimulate the bone marrow to produce more platelets) in January and we’re still trying to figure out my correct dosage as I’ve ventured to a higher dose than is FDA approved...I also did 4 once a week IV treatments called Rituxan that is usually used for RA. That had a low chance of success, but I wanted to give it a chance in case it helped. It did not. Despite having trouble finding something to stabilize me, my two hematologists have never mentioned a splenectomy to me. And if they do in the future, I will swiftly decline. My own research also concludes the chances of success are low, the risks later in life with a compromised immune system and even the chance an accessory spleen grows afterwards sounds like too many cons to me...It’s very surprising to hear they want to do that to you without first trying either Promacta or NPlate(works similar to Promacta but is a once a week injection). I have read lots of people achieve remission being on these agents after some time, although it’s not guaranteed, obviously. There have also been a couple of new drugs recently approved for chronic ITP: Tavalisse and Doptelet. You could always ask your hematologist about these as well. Good luck to you, I hope you’re able to find a better option for treatment!!

Arosetti

Is your doctor actually a haematologist?
Prednisolone is horrendous. There are many medical options available. Rummage around this site and you'll find out all about them.
My personal favourite is Promacta.
You cannot be forced to have a splenectomy. I have had ITP for 5 years and am never parting with my spleen.
I would be looking for a new doctor if mine tried to bully me into unwanted surgery.

Hi, Arosetti, welcome to this site. Wish I had known about it before my splenectomy.

I had a splenectomy about 3-1/2 years after diagnosis--it raised my platelets for about 6 weeks--less than the raise I got after other surgeries! If I had known how poor the chances were for success (and much poorer for older people like me), I would not have been so willing to have a splenectomy. The surgery itself, however, was easy--spinal instead of general anesthetic, a day or two of taking it easy--laproscopic surgery is pretty easy to recover from. AND, I apparently have had no bad after-effects of being spleenless either.

I used relatively small doses of prednisone to control my ITP for 17 years. Then it began working less well, and I developed a reaction to it. I'm still trying to taper off it. But I was the poster child for prednisone for many, many years. I didn't have any of the bothersome symptoms.

I'm on Promacta now, and it's a bother, but it does avoid the side-effects most folks have with pred. And it works. It is horrifyingly expensive without insurance though.