Need some advice , newly do itp

I am 47 yrs old healthy and never been sick and on medicine and came down with some petechiae rash and self diagnosed my self by getting by cbc check on 2/1 /2016 and surprised , by PLT was 1000 an everything else was normal and headed to see hemo/onc. I got started on predict 70 mg after 2 dose of IVIG and hospitalized for 3 days and PLT came up to 34 and discharge on pred. 70mg , but 3-4 days it drop back to 24 then 8 and I got another IVIG , 2-3 days it was still at 8 and then drop to 2 and I was given 2 more doses of IVIG and changed pred to dexamethasone 40mg for 3 days but when I cam back 3 days, PLT was down again to 2 and it was stop and back to weaning pred. And decision to start Rituxan . Got first dose of Rituxan 2/24 with PLT of 8 and next check was 2 and received high dose IVIG x 3 doses and PLT when up to 86 . My next dose of Rituxan due 3/3/2016 PLT back down to 8 and pred now 50mg. Got 1 unit IVIG with Rituxan for PLT 8. Have not had any other test so far and he is planning to test for hep c etc and consider splenectomy , bone biopsy if no response with Rituxan, for steroid is not responding, any suggestions, I am trying to keep a positive mind,

Hi Zack. I'm glad you found us.

It can take time to find the right treatment. Everyone is different and does not respond to every treatment. IVIG is usually a pretty temporary treatment and doesn't normally last more than a few days or weeks. Some people do not respond to steroids at all or if they do, counts can crash as soon as the dose is tapered or stopped. Rituxan does not work right away and the normal response time is 4 to 12 weeks after the first infusion. You'll need to give that ore time to see if it will work for you.

You've only had this for about 5 weeks, so you're only at the beginning here. With ITP, you'll need to have patience; there is no quick fix. It can take some people up to a year to get to a good point of maintaining counts with a treatment that you respond to and can tolerate. I wouldn't rush into splenectomy this quick. It does not always work, can fail at any time even if it works initially, and is not as benign as doctors make it out to be. There are a few downsides to splenectomy that you can learn about as you go along. It is not recommended any more by the top ITP doctors since there are some newer treatments that are fairly successful. You might want to get a second opinion if those options have not been offered to you (N-Plate or Promacta).

ITP is usually manageable, but it can take time. It is scary at first, but that gets better as you learn more about it. How are your symptoms when counts are low? Any bleeding or mouth blisters? Symptoms can be more important than actual counts.

Read as much as you can so you can be a part of the treatment decisions. You have to advocate for yourself. It will really help in the long run.

Thanks sandi,
That helps , for It helps to know people like u can make us feel a little better and have hope
Well, I have been lucky, so far ,for I don,t have any serious symptoms except the facial fullness with steroid and usually knows it's low when I see one or two oral rash, so far no bruising externally. Mostly oral when it drops below 5.
I had a discussion with my hemo/onc today after the level drop to 7 today from 9 which I got 1 IVIG last nite and he proposed to have another IVIG today and Sunday I too if PLT <20 and proposed that we think about promacta trial after the 4 the dose of Rituxan or splenectomy base on my choices. Will be getting IVIG Sunday and Thursday next 2 weeks base on PLT if < 20 while waiting for Rituxan to kick in. Thanks again and all input helps a lot, looking forward Reading on

Zack

Think very seriously about a splenectomy and insist on an indium scan before even considering it

Zack:

Many people go into remission, but it can take time. I had up and down counts for 8 years and was on and off of treatments (steroids and Rituxan), then I finally hit remission. That was 11 years ago and platelets have been fine since. It is not always a life-long struggle. I responded to Prednisone and Rituxan. Neither N-Plate nor Promacta were available back then and Rituxan was fairly new at the time. I was never hospitalized, even with counts under 5, but I did respond to Prednisone. I had petechiae and bruising, but did not have any bleeding. My counts during my Rituxan infusions went something like this: 8k - first infusion, 3k, second infusion, 11k, third infusion, 150k, last infusion. Counts then stayed above treatment level for 13 months, then I used Rituxan again. After that, I went into a long remission.

Promacta may be a good option to try next. It has a pretty good success rate. Some have gone into remission while taking it, but it can take months or years. Very few people have side effects.

What oral symptoms do you have under 5k?

Counts of 5 and 9 are pretty much the same. Counts fluctuate constantly and the analyzers used to count platelets are not 100% accurate. It's a sample. One woman here used to compare it to a spoonful of alphabet soup; you won't get the exact same amount of letters every time.

Thanks sandi,
You right , I get same oral symptoms for PLT < 8 , just that I might see one or more oral mucosa non- bleeding petechiae if in the 2 ranges, or if bite my gum ,some petechiae and still non bleeding , when it drops to 2 I will see few spots petechiae rash on my left forearm. Also , it's safe to keep my daily work habit, for I work in healthcare and come in contact with sick people on daily bases as well as exposure to radiations like x-ray, ct.

Yeah, you'll need to be careful around sick people while on steroids and Rituxan. Taking precautions should help (hand washing, don't touch face, etc). Most people find that they didn't get sick more often on steroids or Rituxan, but of course it can happen. Being in the hospital can be risky too; there are a lot of germs there too!

You're exposed to radiation on the job? That doesn't sound good. Constant radiation exposure could be a possible trigger for autoimmune disorders.

Zack
Welcome. I was diagnosed last january. I did the prednisone and rituxan and IVIg. Finally got to try promacta, an oral pill and four days later platelets platelets reacted. I started on 50 mg a day and now on 12.5 three days a week. I wish they just started me with the promacta. The emotional and physical trauma of prednisone was awful. Six months of awful. Good luck on your jourmey. Feel free to read my journal...my journey, crazy emily.
Keep reading.
Emily

Thanks Emily , the journey is tough, Glad to know you are doing great.

Update, got IVIG on Wednesday nite and Thursday nite without solution me drool and my PLT drop from 9 to 7 and 3 today and now in for another IVIG , had some mucosa petechiae x3 spots this am.
Anybody have situation where IVIG not responding?,
Also, do anybody gets this light headache symptoms with IVIG infusion that goes away.

IVIG is known to cause headaches, both slight and extreme. I wonder if it's even worth getting IVIG since it doesn't seem to be doing much.

You should discuss N-Plate or Promacta. Either of those have a good shot at working since nothing else is.