Info on Experience with different treaments please

Hi Everyone,
Im 36 and have itp for around 12 years and i would like to hear the treatment and effects others have had please. Ive really been left alone by the doctors and have my count done every 8 weeks, i sit between 30,000 and 40,000 and have been on and off steroids at times when my count drops to 10,000 or so at times and my oncologist says remove the spleen but im not keen for several reasons and the big one being im so very scared to have any operation due to the low platlets. I am new to itp groups as i havent been able to find anyone and we dont have any support groups here in Australia that i can find and ive been reading here (which has been great as my docs cant even help with a lot of info) about your stories and issues so i was hoping you guys and gals can tell me about your treatments good and bad. All i can say is honestly itp has changed my life for the worst as i have to be more careful and surgery isnt an easy thing to consider, im so scared to have my dental surgery due to itp its really horrible and the things ive had to give up is hard to accept. Thank you in advance to all who share their stories.

Hi Debb,
You couldn't have come to a better place than here. What a terrific group of people on here. I was diagnosed with ITP this past February. The only treatments that I had was prednisone and Rituxan. I was on prednisone for a total of 2 weeks and it did nothing. The next treatment was the Rituxan. I had 4 weeks of this and handled the treatment well. No side effects. I responded to the treatment and since my last treatment on 4/20/12 my platelets are now in the normal range. My doctor did mention the spleenectomy once but he knows how I feel about it. I plan on keeping my spleen. For me it was a blessing I found this group.

Hi debb:

I've was on predisone for 4.5 months in 2010. Platelets went up but dropped down to 6k. Tried Retuxin 4 times, which did not help at all. Took IVIG during 18 months 15 times. It would go up for a few weeks and bottom out by 4th or 5th week. Nothing I have tried so far has kept my platelets up. At the moment, my platelets are between 6k and 10k. Last check was 6k.

Would love to find something to get platelets to hold above 50k. Actually, I would be pleased if they were above 20k.

debb:

I hope you find a treatment that will work for you.

I was diagnosed with ITP in January and have done just about every treatment during that time. When I was diagnosed my count was zero and was immediately put in the hospital and had steroids and IVIG. I responded to the IVIG for a couple weeks and then stopped responding. I was put on steroids again for a weekend and then revisited the doctor and was put on Nplate. The Nplate worked for a couple weeks and then stopped working. My hematologist then put me on Promacta which worked the longest (both 50mg and 75mg). I am now on Rituxan treatments and have completed 2 of 4. I'm waiting on my counts to get high enough to have my spleen removed. I'm nervous about having surgery but I have researched and gotten a second opinion and everyone is saying the same thing which means surgery is really the next step.

Hi Deb.
I was diagnosed in 2004. Started with Prednisone which only sustained counts as long as I was on higher doses. Counts dropped as I tapered off. Received two Platelet transfusions which did not last. Tried Prednisone again which has less affect than before. 2 Rituxian treatments. First lasted 16 months, second is going on 3 years!! Counts have stabilized, 160-200k. I refused a Splenectomy between the two rounds. I had to see another Dr as my regular was on vacation. The first thing he asked me was when we were going to schedule a Splenectomy. I said it is not an option. Glad I decided not to do it.
Not all treatments work the same for everyone. Treatments for ITP is a wait and see game. Please try to relax. You will be OK. We are here for you!!
Good Luck!!!

Hi Debb,

I was diagnose with ITP about a year ago with platelet of 1and bruises on my legs and hands. Was unsuccessful with Dexa and was put on high dose prednisone. Counts stayed up for a while but when tapered to 10mg a day, counts dropped. Went back to 20mg around last Christmas and started on Danazol 15mg and Eltrombopag 25mg a day. Counts went up very quickly and there were concerns about clots. Cut down Eltrombopag to alternate days and counts stayed between 200-400. Decreased Danazol to 10mg a day and 25mg Eltrombopag to once a week. Noticed that I am very responsive to Eltrombopag (Counts could go up to 700) and also study have shown that asians need lower dose, I am now on 25mg every 16 days. I was also very careful with the tapering of Prednisone because I was told that a slow taper works better. Therefore, I am now still at 15mg 5 days a week and 10mg two days a week. My counts have been very good between 200-400 since March although my weight has been going up due to quite high dose of Prednisone. I will be cutting the Pred further and hope that counts will be stabalize. Hope this is of help to you and that your condition will be stabalized soon.I was doing my blood count every week for the past 10 months but now that it seems to have stabalized , I only do it once in 2 to 3 weeks. All the best.

Hello Debb,
We have a few people from Australia here. My story: I was diagnosed in 2006. I was given prednisone that didn't do too much. I got IVIG that lasted 3 months. I tried Dexamethisone which did nothing but make me miserable. Finally went with Rituxan that put me into remission for 4.5 years. I had normal counts and forgot I even had ITP. Last year I noticed bruises again and woke up with blood in my mouth. Back to the hema. We decided to do Rituxan again. My counts went up right away and have been in remission ever since. I am expecting it to last another 4 years, or more!

Hope you find something that works!

Chasty: If you get a good response from Rituxan, you might be able to keep your spleen!

chasty wrote: I was diagnosed with ITP in January and have done just about every treatment during that time. When I was diagnosed my count was zero and was immediately put in the hospital and had steroids and IVIG. I responded to the IVIG for a couple weeks and then stopped responding. I was put on steroids again for a weekend and then revisited the doctor and was put on Nplate. The Nplate worked for a couple weeks and then stopped working. My hematologist then put me on Promacta which worked the longest (both 50mg and 75mg). I am now on Rituxan treatments and have completed 2 of 4. I'm waiting on my counts to get high enough to have my spleen removed. I'm nervous about having surgery but I have researched and gotten a second opinion and everyone is saying the same thing which means surgery is really the next step.

If you have a good response to Rituxian, why have a Splenectomy?! There is no guarantee that a Splenectomy will put you into remission. Once the Spleen is removed there is no replacing it!! Wait and see how you respond to Rituxian. You have well over a month to see how you will respond.

Hi Debb - welcome!

Question - do you have any symptoms of bleeding? Because if no, your doctor may be ok with you doing nothing at 30-40k. When you first get diagnosed, 30k sounds so scary. But if your body can handle it, many people just prefer to let 30k sit.

The longer you have ITP, the more comfortable you will be with your diagnosis, and what the numbers mean for YOU, which is different for every person. My current doctor doesn't make me treat until 10k, but that's my personal cutoff number. Yours may be higher. Or not.

You have the right instincts on your spleen - hold onto it if you can. There's lots of other treatments you can try first:

Prednisone
Dexamethasone
Winrho
Rituxan
N plate
Promacta

And there are lots of natural options as well, though no scientific studies on those, lots of people give them a try as well.

Good luck on your journey!

I've had ITP for 29 years now and when I was first diagnosed they tried prednisone, but it wouldn't sustain my count. I had a speenectomy and was in remission for 5 years! I might have been in remission longer if I knew I was supposed to get a flu short every year and the pneumovac every five years.. I got the flu and came out of remission:( over the years it's always been predinsone or a combo or prednisone and danazol(danocrine). I did go into remission one other time on the combo, but I got pregnant and came out of remission in my 3rd trimester, about 16 years ago, and haven't been back in remission. I am currently off danazol, and my Hemo is reducing my prednisone 1mg every 10 days(started at 5mg, now at 4mg) to get me off it. He's looking at treating me with Nplate if my count drops to low. I'm nervous, but I am so ready to be off prednisone-it's destroying my body! Good Luck