ITP and IVIG treatment my story.

Hello ITP'ers.
I was diagnosed in April of 2011.
This is my story so far. This is NOT to scare anyone. Its just what happened to me.
My first treatment was a cycle of pred 80mg.
this brought my platelets from 7,000 to 200,000 then when they took me off the pred they
Tanked back down to 27,000. So after a month they had me do an IVIG treatment.
I was excited about this because I wanted to get back to "normal" again. I've been active my entire life.
So the new rules of no contact sports or riding my motorcycle were not an easy thing to put aside.
I did my first two treatments of IVIG and that sent my blood platelets through the roof.
The first day home after 2nd treatment I was sick as a dog. Headeach, flu like symptoms, joint pain
throughout my entire body. But the worst was yet to come.
I woke on Sunday morning feeling sick, paid. All over and short of breathe.
Needless to say I went around like this till the following Wednesday.
Early Wednesday morning at 1:30am I woke with anxiety attacks and incredible pain
in my upper body and joints. I happen to have a blood pressure monitor at home so I checked it.
my BP was no kidding 178/108. I was going out of my mind at this point. Called my regular Dr. That
Morning and said I want an EKG done on my heart. If that's ok then I will deal with the joint pain.
So they said come in at 11:am I said I can come now this really hurts. They said 11 is fine.
so I was in the office at 10:45 am. Talked to the nurse, then the Dr. And said I want an EKG!!
She asked me about pain? I said yes all over my body and upper chest. I said it feels like my skeleton wants to explode out if my chest and run! She then asked anything else? And I said yes. In the last hour sense I called I
have this paid. Shooting up my neck and into my lower jaw and back teeth. That's when the Dr. Said sit back
Relax your having a heart attack!!!
I said WHAT??? They did the EKG I wanted. My ST level was off the chart the IVIG treatment had caused
to many to fast new sticky blood platelets that formed a blood clot in my right coronary artery.
so IVIG on Thursday & Friday. Saturday night chest pains kick, Sunday felt lime dying because I was.
went to work Monday & Tuesday while angina was setting in full throttle and Wednesday I was having a heart attack and a blood clot removed and a stainless steel stint put in my RCA. The rest of my heart looks perfect no blockage. Just the one clot. Now they have to keep me on blood thinners so not to have the platelets stick to the stint! First thinner
Works for 3 days. That was the day I got sent home. The thinner needs an enzyme from your body to work. Haha my body does not produce that enzyme. So 5:am the next morning I get up walk to bathroom and BAM!!! all the chest pain came back
with a vengeance! Massive heart attack coming on called 911 took the ride 3 hours getting another blood clot vacuumed out from the same location cause all the new blood platelets where seeing the stint as an invader to my body.
now I'm on a new blood thinner. At the same time I have ITP.
So I have a cardiology DR. That's says THIN BLOOD!!!! and me Hema says THICK BLOOD.
So right now I'm on 60 myself of pred and in 3 weeks I start my first Rituxan treatment. I hear good things about this treatment. Keeping my fingers crossed.
The IVIG had little to no effect on me. I was told 3 - 6 months for any long term results. It didn't last 5 weeks.
I feel fine. I wanna go play football, work out, ride my Harley. But the Doc says NO!
Anyway I will add to this once I start the rituxan.
again I'm sure I'm an isolated case. I just want to share it with all of you. I just found this site and its nice to know we're not Alone.
Lowest count:7,000
Last count 19,000.

WOW Steve! You have had a very rough time! I hope that things get better for you!

There are others who have to navigate the tough waters of needing "thin" blood to avoid clots and "thick" blood for ITP. Hope the Rituxan works for you! Let us know how it goes!

I am sorry to hear your pain Steve and hope you really do have better luck with rituximab.

Since my splenectomy in 1994 I have had IVIG at every platelet drop and yes I did experience shivers at times and anemia at times but always raised my platelet counts to normal levels for 18 month or so.

This year I just had minor shivers on IVIG and started to raise the platelets but didn't keep them up. So just finished a course of rituximab and last count my platelets were healthy 217. and on 10mg pred for one more day then 5mg till my check up on the 19th. This drop started in dec and at first the count went up to whopping 410. But May they crashed to just 7. And since May every time the I nearly got off the pred - the platelets would come be coming down so the rituximab has kept them higher for longer. Normally ITP don't last or treatment don't last 9 month. Normally I only have about a weeks worth of low platelets and about a month of tapering and it be over for another time. For some reason this year its all different.

I really do hope you enjoy riding the harley soon. For now hard though it is, just have to sit tight and wait. Would it help if you planned where you will go on your next trip out? Or would that make it more frustrating for you? Think about the amount of money you saving on the petrol for the harley.

I hope rituximab works for you. My platelets were already up before they started the treatment so I cannot really comment on whether its worked. Besides which am still on pred and though last time was on the pred, the platelets were already down when I was taking 10mg a day so on this level yes it has worked for me. For how long I do not know yet. But immediately - it has worked.

I had a few low blood pressure but nothing where they needed to do anything different or stop it. I felt as though was run down next day. My tongue was a bit tingly this weekend whatever that means. Other than that I been okay with rituximab and when I think of that a few times I had a full blood transfusion on my last day in the past and the shivers last time I was on IVIG rituximab been very plain sailing.

Though my hospital was very good with the shivers and whilst I wasn't allowed paracetamol because it disguise the shivers. I was very quickly dispatched to xray 9pm on a sunday evening and blood culture was taken etc so determine they were shivers due to IVIG and nothing brewing.... They reacted fast for me as was an inpatient for that.

Ps I also have a cardiologist as was born with hole in heart and had surgery etc and under life long observation and have an echo due in Oct so will know if rituximab altered anything there. But I think it been okay... not felt anything and I have been told at times I would know before they do per se....though if the tiny hole only stretched a little it may be too early to know. Or a weakend valve to be a little weakend. But it don't concern me that much because by pure chance the scan is in Oct and if the rituximab was to do any damage there it will be prevailent I am comfortably guessing by then.

Hope the platelets rise for you soooon so you can enjoy going out on the bike. One thing though - Something for you to think about here is that you will enjoy the bike all the more because you have been told "no" for a while. Without this enforced rest you may have never have known/learned how much you really do enjoy it?

Hey there, Steve. Sorry to hear about all of that!

I'm surprised your hemo says IVIG will last a few months. It rarely ever lasts longer than days or weeks, on average. A few people have gotten lucky, not too many.

There are a few people here who struggle with blood thinners and ITP. I have ITP and APS Antibodies (they can cause clots) and for now, just take a daily aspirin. No clots yet. The two can go together more often than we think. Splenectomy can also raise the risk of clots. Hope you get things balanced soon.

I have cardiomyopathy, which means I'm at risk for heart failure, but not a heart attack. The steroids have decreased my heart function by 10% in just two months. They cause high blood pressure and water retention, which is bad for the heart!!

I am in no way qualified to say this, BUT can you move up the rituxan so you can wean off the steroids faster? Most of us can survive just fine with low platelets, but not without our heart.

I wish I had known decreased heart function was a possibility earlier, I never would have agreed to the steroids and would have gone straight to the Rituxan.

If the Rituxan doesn't work for me, I'm going to have to have a splenectomy. STEROIDS ARE THE DEVIL. I'm pretty sure at this point in my life I will never agree to them again unless it is a matter of life or death. Like I said, heart trumps platelets in my book.

Good luck with everything, Steve. I hope you figure it out.

One more thing, Sandi is right, IVIG is very short term (my hema says 2 weeks max). It's something for those who are going to have surgery or whose platelets are fatally low. It is not supposed to be a long term fix.

um, one more thing...the only side effect I've noticed is a dry, scratchy throat and post nasal drip; however, it was 105 degrees here last week and 55 degrees now. I tend to get small colds with the weather changes so it could have nothing to do with the Rituxan.

The reason I think it may be from the Rituxan is because after I woke up from a mini nap while having the infusion, I noticed the sore throat for the first time. For all I know, they're totally unrelated and it is in no way effecting me more than being annoying.

It could have been the infusion. During mine, I got a scratchy, dry throat and coughed a lot. I didn't even think about it being a reaction, so I didn't mention it. I've heard others mention it too, so it's possible. It went away after the infusion stopped.

steve wrote: This is NOT to scare anyone.

...snip....

Cardiologist That's says THIN BLOOD!!!! and me Hema says THICK BLOOD.

Not to scare you....but you must insist that the two doctors talk to each other, frequently. Do not let them put you in the position of a "he said, she said" intermediary. They must talk, and they must agree how your thinner dosages will be modulated based on platelet counts.

What are you on? Coumadin? Plavix?

This is really important. I was on Plavix following a triple bypass, my platelets dropped and we didn't catch it, and the combination of Plavix with low platelets caused my third stroke, which was a doozy. So, not to scare you, but insist that your doctors talk and agree beforehand on treatment levels. If they won't do that, find different doctors.

My scratchy throat has remained. It's better now but I have a little coughing

Hi everyone.
Thanks so much for making this less nerve racking.
You are all fantastic people. And everyone of your messages have been read over and over again.
I guess we are all so very unique in our own way with this ITP.
At this time I'm still on the Pred but been knocked down from 60mg to 40 And thats a good thing. I believe I start my Rituxin a week from this Thursday.
After reading what some of you have had for success I'm very eager to start.
as far as my Hema goes maybe and I'm sure it was the Hema saying that the IVIG lasts about two weeks. And in my mind I heard cure for life. LoL.
Last weeks cbc 121,000 on 60mg of pred.
I go for another cbc tomorrow and I will post what that is as soon as I get the results Wednesday afternoon.
I've been fortunate to live in New Hampshire 40 minutes north of Boston Mass, USA. The medical treetment here as well as Southern New Hampshire Medical Center have been fantastic.
I know some of you have gave your spleen for this. That might be my only option if the rituxin does not work. But I got everything crossed.
Thanks so much for all the info and testimonial you people rock!!!!

PS.
Yes I had the scratchy throat and a rash on the palms oh my hands after the IVIG treatment.

Think long and hard before you give up that spleen. Splenectomies aren't a guarantee of remission. I knew that going in, and 10 weeks after surgery I evidenced petichiae and was back down at 7,000. Dang it. So now I'm headed for Nplate.

We're lucky here in Minneapolis because the Mayo Clinic is so close. I went there last spring and had a full workup - H. pylori test (neg), bone marrow test (neg - and do they do a GREAT job of it there), the works. Just sayin' - don't let 'em take that spleen until you're really sure.

Hi everyone.
Well I've Had two Rituxan treatments so far and all is well. I only had one little set back where it felt like my ears, nose and throat where drying up. So they stopped the treatment. And gave mew shot of steroids . Then after 15 minutes Max I was fine and the treatment went on With out a glitch.
Before the first treatment my plates were 44,000 with a 20mg daily dose of prednisone. Just before the start of the 2nd treatment the plates where at 106,000 Wahoo! So now i am down to 10mg of prednisone a day till my 3rd treatment and then no more for a whilei hope. The pre meds do make you sleep. And whats a few extra hours of sleep?

Sandi, are you online now

Help
2nd or 3rd week with it.
count is or was 5000
Taking 100mg of Pred
Just finished 4 days of Gammaglobulin on thursday, Sat morning and I dont feel like im freezing with the sweats, but my urine is awfull red

I dont know how I have such S#%t luck

If your urine stays red, you might want to get checked out over the weekend.