Prednisone,IVIG-what next ??????

First of all thak the Lord I found this web site . My wife was hospitalized Jan.15 - Jan.25 with a platelet count of 2. She was given prednisone and bmb right away. She did not respond to Prednisone in the first week she was there so they gave her 2 runs of IVIG .Her platelets went to 124 & she was released on the 11th day.She continued prednisone & her platlet numbers started tanking fast.After two weeks out of hospital hematologist is already pushing slenectomy.Hematologist is also upset that we dont completely trust her.And also doesnt like that we study & learn all we can about itp.She sees it as a lack of trust & faith in her.After 19 days my wifes platelet numbers where 24.Today she started a second round of ivig.She is tapering off of the prednisone. My biggest question is what do we try next?????? Have heard good things about rituxin.Should we try that next? If so what Drug to try & stabalize platelet numbers while waiting on rituxin to take? Please,All opinions welcome.

Hi,
Is your wife having any bleeding symptoms? How did they catch the low count in the first place? The extent of symptoms might drive your decisions a little.

Meanwhile, your wife is responding to IVIG so that can buy you time, lots of people here have used IVIG many times. If the prednisone isn't helping it might be smart to get off it.

Your hema is not good for you! Her ego is a bad thing, good doctors welcome consultation and educated patients. Can you get a second opinion? Get to another doctor!

Rituxan could help, but it can take 4-12 weeks to kick in. There is also nPlate and Promacta. Are you in the U.S.?

Erica

Yes Eklein we are in Texas.My wife had open blood sores in her mouth is what sent us to the hospital.Hema. mentioned promacta.I heard it was crazy expensive . I need to check & see how much insurance will pick up.Should we push to start rituxin right now to get it going?Is it safe to start rituxin right after ivig?

Ask your hema about dexamethsone. its only for 4 days and is cheaper than rituxan, etc. My hema said if it didnt work then it was rituxan next, but ive been in a remission for about a month now, from a 4 day course of dex and ivig the first 2 days of it. Not sure if its going to stay like this but use the ivig to keep counts up until you find a second opinion. Just try different treatments, no need to jump to the heavy guns right away (rituxan, splenectomy)

Dexamethsone,Any other suggestions anybody?

Have you read the latest guidelines with the drugs listed..

bloodjournal.hematologylibrary.org/content/115/2/168.full

I tried IVIG, Anti-D (WinRho), prednisolone, CellCept (mycophenolate), Imuran (azathioprine), dexamethasone and finished up with Nplate (romiplostim) which is keeping me fairly stable but I couldn't get a remission from any of them.

I used prednisone first. It worked for a while and then it mostly didn't. My doctor wanted to do splenectomy next but I wouldn't. He suggested danazol or another old one, forget which. I suggested WinRho and we tried that next. It worked once and then it didn't. I suggested Rituxan and we tried that, I got a 9 month remission and then used it again and three years remission so far.

I would use Imuran next if I come out of remission, I had an allergic reaction to Rituxan at the last treatment.

Erica

Well, I say pick one and flip a coin. Those are your odds. Most people go down the line (in no particular order) until they find one that they can tolerate and one that works.

My order was this: 5 weekly Win-Rho treatments that didn't raise counts a bit. Counts were under 10 the entire time. Then tried Danazol but was allergic to it and had to stop. It didn't work during the week I took it. Then on to Prednisone, which did raise counts to the 200's. That lasted a few months and I was back on Prednisone. After that I was treatment-free for 3 years. Counts were back down, so I was on and off of Prednisone at lower doses (my choice) for about 2 years. When I got tired of that (around 2003), I went on to Rituxan which was fairly new for ITP at that time. Got a year of remission, then used Rituxan again. I've been in remission since (8 years now). However, I have also been on Prednisone since that time for another autoimmune disorder, so that could be helping to keep counts up. I never used IVIG because it's so temporary and takes too long to infuse. Time was always an issue for me. I also refused splenectomy and I am glad that I did because I went on to have other problems that could have made the splenectomy a bad decision.

Everyone has a different story. Everyone makes choices based on what they can afford, what they can tolerate, and what they respond to. It's trial and error.

I agree with Erica..I wouldn't be happy with a doctor like that. Patients need to be their own advocates and there is nothing wrong with research and having knowledge. I have found that most of my doctors are glad that I do my own research - less for them to explain.

Good luck with your decisions!

Thank all of you very much.Your input is a big help.My wife & I are new to this.Hearing your advise & experience is our biggest tool.

My personal experience was Prednisone completely ineffective
IVIg would give me good counts for about three days
WinRho gave me good counts for about a week and a half
After about 5 months of that I suddenly went into remission
Was in remission for 4 years and then had a relapse after a nasty virus
Hemo put me on Prednisone again even though it didn't work last time yet this time I got a significant rise from it
If it holds as I taper off great if not my next course of action personally will be Rituxan. I want the best shot at remission without taking out the spleen.

Well, I say pick one and flip a coin. Those are your odds. Most people go down the line (in no particular order) until they find one that they can tolerate and one that works.

Yep.....I could not have said that better.
One of the first big revelations with ITP is that we are all different and respond to different things.
Start with what makes the most sense to you and work from there. I've gone through several treatment types over the years and currently use Promacta, it has worked for me for over 2 years now. But we are all different.
Personally, I've only used Dexamethasone as a "rescue treatment". Taking one or two 4-day courses of 40mgs/day will usually boost platelets quickly for me. I don't know how anyone can stand being on large doses of the stuff longer than a few days. Although the mild hallucinations can be fun.

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