2nd opinions and specialists

I'd like to hear from those that got 2nd (or 3rd) opinions for your treatment plan. Did it help to clarify things and make your decisions? And how would one go about finding an ITP specialist? Thanks.

I was at first being treated by my rheumatologist (since my ITP is secondary to lupus). He decided to consult with a hematologist, I was surprised but he said there could be things he didn't know since it wasn't his specialty. Well there was a lot he didn't know! I ended up switching to the hematologist as my primary for ITP. The rheuma had never heard of anything other than prednisone and splenectomy. But he knew enough to go to someone who was more expert. Erica

You'll get different opinions based on experiences. This was mine: I had ITP for about a year and was only treated with Prednisone and Win-Rho (Win-Rho didn't work). I got tired of Prednisone, wasn't much into research, and decided I wanted ITP to go away and my hemo didn't make that happen.

I asked my GP for a referral to an ITP specialist. It was an hour drive. I sat in the waiting room for two hours. I saw the doctor for an hour. An hour drive back home. The specialist's recommendation after all that: use Prednisone when needed. I also had about 15 tubes of blood drawn that didn't tell us anything.

I considered it a waste of time. After that, I started doing my own research and began to suggest things to my current hemo who was 10 minutes away. Surprisingly, he was very open to my suggestions and we tried different things. After researching more, I realized that what was listed on this site is all there is. The specialist couldn't do any more for me than my current doctor.

I would have gotten a second opinion (minus the specialist) or a new doctor if - my hemo would not have been open to suggestions, he refused to listen to my concerns, if he had tried to insist on things I didn't want, or if I didn't like him. We ended up with a great relationship over the years even though I had to be his guinea pig a few times. I was the one to suggest the H. Pylori test, I was his first Rituxan patient for ITP, I was the one who suggested Dapsone, etc.

After saying all of that, it never hurts to get a second opinion.

Sandi, that's kind of what I was thinking, there are only a handful of options and what else can they say. I guess maybe their philosophy on when to treat and the rush to splenectomy could differ. I am just getting more confused and burnt out the more I research.

There is a difference in how doctors treat; they are all different. Most follow protocol, some do not. You're right though, there are only so many options. A specialist does not have a magic pill that makes it go away. For severe cases though, a specialist may be more familiar with combinations of meds that can raise counts.

When you find that you get too burned out researching, take a break. Sometimes it's a lot to take in.

JTX: Sandi's answer in her first sentences sez it all. I went for a 2nd opinion at a prestigious N.C. facility. After a cordial reception, blood sampling and extendened conference time with the specialist, he didn't tell me anything I didn't already know or learned from my Hemo Doc. Fortunately my Hemo Doc is very open to discussions about the info I pickup on web sites.....including this one. I continually receive pressure from my friends to seek out other '2nd opinions' in hopes that one of them has the magic bullet to cure the ITP. Unfortunately my friends don't fully understand the nature of the problem. Their initial comment usually is; "What's a platelet?"

I always think a second opinion is a good idea. I have the best hemo/onco (I'm partial, of course). She is so kind and she really helped me get through the tough parts. When I was first dx and we realized that pred. was not a long term option, SHE took it upon herself to consult with other doctors around the country that she knows through the "circuit." She also presented me with research regarding treatment options. Together, we decided on Rituxan and I have been in remission ever since. She also answers all my crazy questions (which you all know I have plenty) and helps me with my anxiety. I consider myself so incredibly lucky to have been placed with her. Also funny, one of the hema/oncologists that she works with knows a lot about ITP...his daughter has it! How crazy? If you're ever in Charleston, SC, let me know because I can give you her info...she and the RNP that works with her are absolutely amazing!

Natalie

Guess you could say I have had 4 opinions:
1) Hematologist my MD called in at the hospital & I was her patient until we had to switch to an HMO 6 years ago - wonderful woman
2) Hematologist I had in Tokyo - turned out he knew my state-side hematologist and they had gone to school together in Utah for something - he was great
3) The head of the hematology department at CU medical center - my hematologist in Tokyo wanted me to get his opinion - that was one big bust, all he would say is "you WILL have your spleen removed" - 20 years later it is still in my body, so as far as experts go....
4) Hematologist I had in Hong Kong - I knew more than she did about ITP

Hi-

I went to a few Dr's- one thought he was "House" and ordered 6,000 dolars worth of blood tests!!! He said I had hemophilia and all sorts of things I did not have. I was not amused.

Teaching hospitals are always a good bet because they have lots of specialists and take almost all insurance plans.

I would suggest getting a 2nd opinion if you are not happy with your current MD and have concerns that are not being addressed.

My first hema in 2006 I met when I got admitted to the hospital so I stayed with him. When he felt prednisone was not working well enough for me, he wanted to move on to rituxan or splenectomy. I refused and got a 2nd opinion with another hema. I liked the other hema and moved to her. I went on remission in 2006 while under the 2nd hema's care.

My ITP recurred this year and I was again admitted to the hospital and the first hema again was assigned to me during my hospital stay. I reminded him that I was his patient back in 06 and that my ITP resolved itself after 3 months on pred. He insisted I should get a splenectomy this time around hahaha! Talk about stubborn!!!

My first hematologist treated me with constantly changing doses of prednisone, and then told me after a few months that I'd soon be having a splenectomy (this was back in late 2001). Although I believed him, I didn't think it was smart to have "elective" surgery without a second opinion.

My second opinion was at the University hospital clinic, where I heard about Rituxan for the first time (it was a VERY new treatment for ITP then). Second opinion hema and I decided together to try a slow, consistent pred taper as opposed to the wild swings other hema had me on.

Then when the first Anti D study was published during my taper, new hema downloaded and sent it to me, and we slated that for the next option if the slow pred taper didn't work.

Here it is, almost 9 years later, and I still have my spleen and haven't had any treatment for ITP in over 2 years. So....a second opinion was worth it for me.

tamar wrote:

Then when the first Anti D study was published during my taper, new hema downloaded and sent it to me, and we slated that for the next option if the slow pred taper didn't work.

"slated".. tra la la.. <runs off to find an Americanese dictionary> :laugh:

Brilliant! I'm chuffed to have provided a new word for your vocabulary, Ann! :silly:

From Merriam-Webster:

1 : to cover with slate or a slatelike substance <slate a roof>
2 : to designate for a specified purpose or action : schedule <was slated to direct the play>

(I was using definition 2)

Can anyone recommend a good hematologist in NY/Long Island AREA who is expereinced with ITP??

I have a good blood dr but he's more specialized in cancer treatment want a 2nd op.

thx
Julie

Dr. Bussel at Weil Cornell