immunoglobulin IV?

I've had two days of IVIG and woke up this AM to find that my platelets are the same as yesterday. Day one (before my first dose of ivig) was 5,000. The next day (yesterday) it rose a tiny bit to 7,000. Today it's the same, which was disappointing to me.

I'm hoping that maybe this treatment, which could last 5 days, just takes a while?

Has anyone just not had the ivig work for you? What did you do next, and did it work?

Thanks, I am feeling concerned.

The first time I had IVIG about 6 years ago, the protocol was for 4 daily infusions. A jump in counts was expected at some point. My counts jumped on the 3rd day to about 58, so I didn't need the 4th infusion. I was starting from counts around 1, and I think they were up to 10 the second day, but I also started on prednisone.

I had it again a few years ago, and only had 1 infusion and my counts had jumped quite high 2 days later. I think that they may have spread the amount of IVIG out the first time.

So I think you don't quite have to worry yet. I know that's easy to say.

Here's hoping it works for you,

Lily

This morning, my platelets rose to 49, so that's good. Today's my last day of IVIG so we'll see what's next.

Gotta get them up still. But it's encouraging. I know the road ahead is going to be a long one. But my plans are to try to live a relaxing and maybe a lower-impact lifestyle and try to avoid all of the little things in life that stress me out.

All my life I have been pretty intense - with work, exercise, everything like that. I feel a need to simmer down a bit. So that is the plan.

Any advice moving forward would be much appreciated, thanks.

Hang in there Mark. For now don't concentrate on "normal" (who wants to hang out with the crowd?). The objective is to find a "safe" number for you and the symptoms you display at what ranges. It will take some time for you to find that comfort zone and understand your triggers.

I can have petechiae at higher counts, but if I can explain the reason (lots of walking on cement) and they aren't a full rash, I don't worry about them. I get dry air nosebleeds at any count, but only worry if they are slow to stop, otherwise I've learned to compensate. I never visit my folks at 7,000 feet in Utah with a wood burning stove with out my AYR nasal saline gel now days.

Until I had to start treating last year, mine were in the 50K range for over 15 years. I only saw the hemo every six months, unless I had lots of unexplained petechiae/brusies or nosebleeds that didn't stop relatively quick. Then I'd run in and have a quick CBC and we'd monitor for a week or two. Durring the first 15 years, I spiked as high as 70 and as low as 30 which is usually associated with my triggers like antibotics. Virus's typically make my go up, but once in awhile, they'll cause a drop.

About a year ago, I dropped to 6K and started Winrho which I'm currently doing every 4-6 weeks. The goal is to stretch them out and try to get me stablized back to the 50-60K range.

are you nervous? Do you still have your spleen? Did you get this when you were a child or an adult? Is yours considered Chronic or Acute? How often are you taking meds?

Sorry for all the questions. I have been reading a lot of stuff here, seems like the system eventually gets used to most treatments and things usually stop working. So that's what I am nervous about.

Thanks,

Mark

I'm chronic and I'm not nervous. More just slightly irrated that I have to make time either weekly or bi-weekly for a blood draw and that the infusion has to be worked into my schedule. I'm down to it only taking about an hour, but I've found that I do better if don't plan any activities for the rest of the day and may move a bit slower the next, so I usually schedule on a Friday, but they want to do early afternoon rather than late on Fridays.

Yes, I have my spleen. This hemo has never even suggested taking it especially since I'm over 50. (Note, my old hemo retired, and I fired 2-3 inbetween him and my current one)

The low count was noticed when I scheduled for surgery at 38 with a count of 79. The surgeon didn't even notice it was that low until I was under anhestia and had had a heprin shot as a preventative against blood clots since I'm overwieght. Needless to say I was very bruised after surgery. Was just monitored with periodic CBC's by the PCP for a couple of years. Got the official diagnosis when in combination with Diabetes, my thyroid function was off, so the PCP sent me to the Hemo suspecting autoimmune. Was diagnosised with ITP and Hashimoto's Thyroiditis the same month.

I was one of the very lucky ones who did not treat and stayed above 50 for 15+ years. There are so many more treatment options now than when I was diagnosed and groups like this that are getting awareneess and focus on funding for treatment options. We've come a long way, Baby! It's hard to say what triggered my drop a year ago. I had been doing a strong anti-oxident vitamen containing Grape Seed extract that I had not noticed on the warnings list. I'm female and at that point when hormones begin changing and it's not uncommon for autoimmune flares during that time. Doesn't really matter, it just IS.

In the late fall of 2008, my counts had dropped to the 30K range so the homo moved me from 6 mo to 3 mo schedule of visits and CBC's. But being chronic with no symptoms we didn't treat and pred is not a great option for a diabetic. In late spring of 2009, I was 6 when I went in, but not especially symptomatic for bleeding. The office started the paperwork for insurance approval on Winrho and we went to weekly testing. I started climbing 11, 14, on my own. It took 3-4 weeks for approval and scheduling and they didn't put any restrictions on activities (of course my lifestyle doesn't do extreme sports either). I actually did a busines trip and flight in between it all.

I've only used WinRho and have had 5-6 infusions since I started treating. We aim for 6-8 weeks between them.

You wrote: Sorry for all the questions. I have been reading a lot of stuff here, seems like the system eventually gets used to most treatments and things usually stop working. So that's what I am nervous about. We don't mind answering questions. But an important thing to remember is that people who go into remission, just get on with life and frequently leave the board. When my counts were high, I only checked in once a month or so and seldom posted. You'll find that the overall theme of the discussion is schewed toward those going through issues now and it can appear worse than the true picture of the entire ITP population. In the beginning, I haunted the web for hours every evening and printed reams of information to disucss with the doctors. We've all been where your at, it does get easier and becomes a background thing rather than daily focus.

I just added a couple of qoutes to my signature, because I'm really trying to take them to heart.
"I am an old man and have known a great many troubles, but most of them have never happened." — Mark Twain
"Worry is a misuse of the imagination." — Dan Zadra :woohoo:

Mark:

I have been reading a lot of stuff here, seems like the system eventually gets used to most treatments and things usually stop working. So that's what I am nervous about.

Not necessarily true. I've had ITP since 1998 and still respond to the same meds.

"...most treatmenets and things usually stop working."

I wouldn't say that. But then I've only been on prednisone once [for 4 years], refused it after coming out of a remission [lower than normal counts but no treatment] and my hematologist grabbed her prescription pad - had WinRho and am in another "remission" so haven't had to have it a 2nd time [yet]. I'm fortunate, I have a decent count - not normal but decent [knocking on wood].

Bunnie, I added a new quote to my signature too and I'm trying to live by it this year. Suck it up Cupcake

Thanks Bunnie!

Sounds like the moral of the story is to just deal with it and not let it keep you from living. I can handle that.

At least I can be more aware and shoot over to a hospital if anything out of the ordinary happens.

I think I have been living with this for my whole life, but the sudden drop brought me in. I will probably have more drops and sometimes at scary levels, but I am excited to just keep on living life.

Some people aren't so lucky to have a disorder that constantly reminds you how delicate life can be.

Thanks everyone else. I responded to Bunnie but forgot to click send. By that time a few others have responded.

I appreciate all of the good words.

Tomorrow I am going back to the hospital for my first outpatient draw. And I'm going to ride my bike over there to get it done. I don't want to spend the rest of my life walking on eggshells over this.

But it's a blessing, too. Because I have never really stared death in the face like this. A week in the hospital changed me totally. Suddenly I appreciate the people in my life SO MUCH MORE and realize that I have been working WAY to hard and not living enough.

And now that I know I have ITP all the more motivation to stay on top of my diet and get me some low blood pressure. Last night for dinner, I made some quinoa, shrimp, avocado, serrano peppers and artichoke with a light drizzle of olive oil (and some home made hummus!). WAY better than salty fast food!

It's a little scary, but overall, it's just what you make of it.

It's a little scary, but overall, it's just what you make of it.

Amen!

Yes, chronic illness can be an eye opener. You learn what's really important in life. Your perspective changes. If you can find some positive in it, you're doing well.

I totally agree with you mark! when I was in the ICU I had to deal with my mortality, and I didnt think about my job or my finances or my plans for the future. I thought about my family and friends and what legacy would I be leaving, what would ppl remember about me when i was gone. I love my family and friends so much more. I appreciate life so much more also, another day to spend time with them and love them. It has also given me a new perspective on life. It's like someone lifted a fog. It has in many ways been a blessing.

I just need the platelets to go up a lil' bit though like 28k more lol

last count 19/03/10 2K

I have had IVIG treatments 3 times. The first time was in 2006 prior to some out patient surgery. I had 2 treatments in 2010 (Feb & April) as my platelets dropped to 15-20 and I was having problems. I learned that with my body it takes a couple of days for the platlets to go up. I was disappointed that 1 or 2 days after the first IVIG the platelets had only gone up about 30k. On day 3 & 4 they really jumped to over 200k. The platlets will then slowly drop back to the starting level after 3-5 weeks

My Feb & April treatments showed good response after 3-4 days. The best time to do a platelet count with IVIG for me is 3-4 days rather then the next day. You will be much happier with the results or it will give you more info

I am probably going to go with a splenectomy this summer. I will schedule the IVIG for the platelet boost for the surgery 3-5 days ahead of time

Ive had IVIG so many times I cant count. It works for me, but very temporarliy and it takes a long time anywhere from 8-12 hrs depending on the nurse. Ive found that over the past 3 yrs I dont respond as well to it. When I was first dx with ITP my counts would shoot up really fast even before the infussion was done well into the 300s, now I get up about 100, which is really good for me. I do happen to respond really well to steriods but only at high doses. Everyone responds differenlty to each treatment. The key is to find what works for you.