Treatment Options? Torn

Hi,

I am new to this forum, but have checked it out a bit before posting. I was diagnosed with ITP in December 2014 after ending up in the ER with a level of 8. They sent me home later that night with a prescription for Prednisone. I was taking a high level dose of prednisone, multiple tablets a day, that gave me almost every side effect possible. I was absolutely miserable. My levels went up to 333 in January, the highest, and my hematologist started to wean me off it later that month. As she weaned me off, my levels went down with it. I came off it completely in the middle/end of February and had blood tests every few weeks. In April, my levels went below 150, and my hematologist had me come in to discuss whats next.

My levels continued to drop and my most recent check up, last week, showed I was at 40, from 59 two weeks earlier. I fall at a rate of 10-15 every week.

My hematologist gave me the three options, infusion, medication or removal of spleen. She gave me two weeks to think it over and I met with a surgeon in the meantime. After doing lots of research, I was leaning towards surgery, but my last appointment, my father insisted I get a second opinion.

I met with another hematologist today, who gave me the same options, but said he would recommend rituxin over surgery. My primary hematologist said she would recommend surgery in my case and not the medication (I forget what one she would do), because it would be lifelong and she thinks the infusions would only work temporarily.

I am still leaning more towards surgery, for some reason I feel more confident that I will respond better compared to the rituxin. I am doing more research on the options available, and would consider rituxin, but the side effects sound horrendous, and my hematologist would have me take a steroid with it. EVERY medication or treatment I get always results in every side effect. I started a new migraine medication, for example, this week and almost had to leave work due to the side effects it gave me.

I JUST started a new job in March, when my levels were stable and I thought I was in the clear. I am still on a probation period (for 6 months) and they've been understanding for the most part, but I am constantly having to leave work early. I am on salary and have accrued sick/vacation/personal, but not that much and am running out of time with all the doctor appointments I have had to go to. I am also turning 26 next month and am coming off my parents insurance, which I have satisfied the deductible for and they said they would cover whatever treatment, and going onto a new insurance through my new job, which I have no idea what they would cover and at what cost (they cant give me any estimate since I am not a member yet).

I am just wondering if any of you had the rituxin or removed their spleen and how well, or not well, it worked for them. My hematologist said if the surgery did not work, I could still try the infusions. They would also vaccinate me for infections before or two weeks after surgery and would most likely put me on a short dose of prednisone to raise my levels before surgery.

I know my health comes first, but I worked hard to get this job and I really don't want them to let me go because I can't perform my duties reliably. I am also very anxious about the costs of treatments, what insurance will cover or not, on top of student loans I am trying to pay. I just want to make sure I am making the right decision for myself and getting informed on all aspects of treatments.

Thank you so much for any info you can give me! Sorry for the long post!

Marie:

There are pros and cons to both splenectomy and Rituxan. I'll go over that but first I just want to say that there are also other options to consider.

Splenectomy is not a cure. It is a treatment that may or may not work. Some people get a lifetime of remission, but a good bit of the time, splenectomies fail right away or months or years later. It is not a treatment that is recommended much these days because there are other, newer treatments coming out that are taking its place. After having a splenectomy, a patient is susceptible to infection for life, and can also become more prone to blood clots. It is not side effect free. It's a gamble, but some people do get lucky. General protocol states that a patient should wait at least a year after diagnosis to have a splenectomy, because ITP sometimes resolves within that time.

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

www.bloodjournal.org/content/121/23/4782.abstract?sso-checked=true

Rituxan is generally well tolerated, and the list of side effects seems scarier than they are. Most people do well, but there are some patients who have infusion reactions which are immediately dealt with. The average remission is a year. The patients who respond well and have no side effects love it. But, it is a heavy duty treatment that should not be taken lightly.

As far as work and missing time...that slows down in time. I found ways to avoid missing much work such as going for CBC's on my lunch hour, scheduling Dr. appointments late in the day, etc. I hardly missed any work time at all. Most people get remissions, but you just have to try a few treatments to find the one that works best for you. Promacta and N-Plate are two treatments that have great success rates. These are not usually first line treatments, but maybe in time they will be.

Treatment decisions are hard and it is important to do your research and become informed.

Have you had an indium scan Marie?

You won't get an indium scan in America but I'd want to try other treatments before either Rituxan or surgery. Promacta if you can get it on insurance or afford it yourself might be the best or something like CellCept is cheap and works well for many until you get the Promacta. Either way I'd definitely want more options than the two you've been given.

Totally agree Ann. Splenectomy must be the very last option considered.