New to forum...

Hi everyone,

I'm new to this forum and from reading a lot of the posts, very new to ITP. I'd like to give my quick background and get your opinions on my current treatment because I'm very confused as to my next steps.

About a year ago a blood test had me at 25k. I was admitted to the hospital with my platelets dropping and after a terrifying and painful week of tests in the hospital (Bone marrow aspiration and biopsy, CAT scans, etc...) I was diagnosed with ITP.

I started treatment with three, daily, 1,000mg Solumedrol treatments and IVIg in the middle. I was then put on 100mg Prednisone daily with a weekly taper. My counts after these treatments jumped to 330k but have consistently fallen. I went up and down on Prednisone for 6 months while trying to keep my count above 50k. I also gained about 50 lbs and was miserable on the Prednisone, so much that I made my doctor take me off.

I'm 37 now, married with 4 children (12 years to 9 months old). I'm fully off Prednisone and have been, at my doctor's recommendation, doing N-Plate injections once a week for the past few months. I've been all over the board with N-Plate but mostly in the 20k to 50k range. He just doubled my N-Plate dosage and I now have horrible back, neck and muscle pains. I thought I just tweaked my neck after a long drive but the pain has lasted over a week and is moving around. Then I re-read the side effects of N-Plate and I have 80% of them.

I know I'm not extremely patient (want to get to a stable point) but my friends and family are not either which is making this so much harder. It's been a tough 11 months of weekly blood tests and shots after. I'm also concerned after reading some posts on here specific to N-Plate and my age. I still consider myself young-er and I'm not very enthusiastic about taking long-term risks. I have a young family and need to be there for them but most of the time it feels the treatment is worse than the illness. I'm either moody or tired or now significantly sore to the point it hurts to play catch with or hold my kids.

I'm ready to just take a month off and see where my count is after that.

Thanks for your time in reading this. Sorry about being whiny, I just needed to vent a little. I appreciate any comments / suggestions / thoughts.

-S

Hi Scott,

It sounds like you have had some pretty aggressive treatment, and I would be sick of it too, if I were you. If I understand correctly, you achieved counts mostly in the 20-50k range before increasing your N-plate, and the side effects didn't show up until the dosage was increased. If this is correct, then is there a reason not to go back to the lower dosage of N-Plate, and tolerate the lower counts? Perhaps you could add a very low dose of prednisone when your counts get too low (below 20k?), without too many side effects. There is a big difference between 1000 mg/day of methylprednisolone and 5 mg/day of prednisone.

As I see it, if the treatment seems worse than the illness, it's not an either/or situation. It's about finding the right balance between all the pluses and minuses, risks and rewards. That is an extremely personal judgment, and I hope your physician is willing to work with you to find the right balance. Is your physician willing to work with a lower target range? A lot of people on this site seem to have a target range of 20-50, and some much lower.

Also, is Rituxan an option?

Rob,

Thanks for the reply. My Hemo initially wanted to treat me if my count was under 100, then 70, and now we're at 50. As my counts got lower, so did his apparent threshold. I finally got him to tell me his bottom most number which is 50.

The reason I don't want to go back to the lower count is I'm not sure it's even doing anything. I want to go to no treatment and see where my count will stabilize. When I went into the hospital, I was at 22-25. If I'm doing that with N-Plate, why should I put anything in my body?

My Hemo doesn't like Rituxan or anything which is a human by-product. He calls it a "dirty" product ans while contamination is extremely highly unlikely, he is still cautious.

He is open to letting me choose my treatments but I'm almost worried that he's doing it too much. I'm an IT guy, not Rx.

-S

I understand your point, if you were only at 22-25 without Tx then why treat? I am interested what others here might reply to that.

I don't understand the "human byproduct" issue. You have had IVIG which is a byproduct of THOUSANDS of humans. Maybe it's the "mouse byproduct" or "rabbit byproduct" concept he has issues with? As far as NPlate vs. Rituxan, I don't really know enough about the difference between monoclonal antibody vs. recombinant DNA to know which is "dirtier"

Hello Scott - welcome. I'm not sure what your doctor means by 'dirty'. IVIG is also a by-product, did he prescribe that?

My question to you is: what are your symptoms at counts around 20k? He seems to be very aggressive. Rob is right, you have to find a balance and most people do at some point. A year is a long time to go being miserable on treatments. Maybe time for a second opinion? While there is no 'hurry up and fix this' trick, most can manage to lead a normal life without too much trouble.

Try not to worry, you will be around for your children.

Thanks Rob and Sandi.

This doc did prescribe the IVIg and admitted it was "dirty" and hoped it would be a one-trick-pony. He offered me the option to do IVIg again but advised against it because it was a human byproduct and thus had more risk over an fully engineered product. It also didn't stick because a week or so after the IVIg treatment, I was back down under 100k.

This was also the same time as the meningitis outbreak in the prednisolone shots so not sure if he was / is being overly sensitive.

The ironic thing is that I do not have any real symptoms that I can identify based on my counts. I don't have any purpura, no significant bleeding episodes, but maybe fatigue. I also have 4 kids with one being an 9 month old and poor sleeping habits so not really sure.

I was initially thinking the outcome from these posts would be that I pushed for Rituxan but maybe I need a second opinion.

-S

Hi Scott, I agree with the second opinion idea because for lots of reasons it is obvious that your doctor isn't an ITP expert. If you can find a doctor who treats ITP and keeps up with new developments then you will get different treatment.

IVIG is never assumed to be a one off treatment. It is only expected to last at most for a few weeks. And I agree that treating at a count of 20 or so is mostly not necessary. It sounds like a good enough count to me.

I'm in the 'get a second opinion' school also.
IVIG is dirty? What are his thoughts on 'fungus' Penicillin? :woohoo:

You say that you have no real symptoms? That is fantastic. Relax and enjoy it...you are fortunate!
So, if you are not having adverse symptoms, aren't bleeding, no petechiae, no giant bruises, and you can maintain 20k-plus without treatment.....then why treat? A lot of us are living just fine under 20k. I stay around 10k-20k with treatment.
Counts are counts. A reference point for some aspects, but platelet counts are not the whole picture.
Monitor counts and symptoms, treat as needed.....rinse and repeat.

The 20k-50k range on Nplate sounds just fine, since that is what it is designed to do. Both Nplate and Promacta (the 2 TPO drugs) are designed to keep one in the '50k range'. There are real dangers in going above their recommendations (clots).
And as Sandi said, "Try not to worry, you will be around for your children.".

OH yes....I forgot to say one thing: Hang onto your spleen! You are normally only issued one per lifetime.
.

Thanks all.. I'm glad to see others feel 20k can be an acceptable level. I'm going to look for second opinion.

-S

I have a couple of questions for you!

When you had that blood test and they found you had a count of 25. Why was the test ordered?

Were you sick? showing symptoms? or was it just a random blood test/ physical?

Winnifred,

It's a long story but I'll try to shorten it while still providing significant details around my health then and now.

I was having chest pains that would happen for 3-5 minutes then re-occur every hour or so. I waited about 6 hours and called my primary doctor. They said go into the ER.

The ER thought the pain may have been gall bladder related but it never happened again and I was never treated for or diagnosed with any gall bladder problems. The ER drew my blood and did other tests that came back normal except my platelets came back at 25k. They thought it was an error and said then will draw it again and I'll likely be out of there in an hour with some pain pills.

They came back an hour later and said it was 23k and that they paged Oncology and I was being admitted (I may have been a lot less worried at that point if they said Hematology)..

The Cardiologist that I now get to see is not concerned at all about anything except the high blood pressure that I got after the IVIg treatment. My BP was fine for the first 4 days I was in the hospital and getting tests, then I received the Solumedrol / IVIg treatment and I've been on daily blood pressure pills for the past 11 months.

-S

Scott,

Many of us here have had an aggressive doctor to start - the 1st time you hear ITP - Bleeding - Counts should be...... it can be VERY scary!

I treated with Prednisone for 18 months straight then Rituxan - My primary care was very concerned with counts under 70K. I got a 2 1/2 year remission with Rituxan and then started the roller coaster again. Prednisone, CBS's weekly - 12 months of that and 85lb over the last 5 1/2 years I decided - 2nd opinion - Now I have a AWSOME Hemo/ITP Specialist and we are in the watch and see form of treatment. I get peticia and bruising but not bad and my counts have ranged 35K - 50K for the last 6 months - NO TREATMENT !!

Long story short - most of us don't die from ITP - we learn to listen to our bodies and decide what risks we are willing to take and LIVE on.

You too will come to decide how YOU want to treat and be your own advocate. I suggest - read, read, read and ask questions all the time, Find a ITP specialist! and know we are all here to help each other!

Cindy Ann,

P.S.
When I want to cheer up I read WierdJack, and Jeffery71 comments :laugh: many people here share their experiences - that is how we get through this.

Sandi, is full of the best knowledge and advise - listen to her!

There is something about that word oncology! the word hematology isn't as scary. When I was diagnosed I think the part I panic over was my family doctor saying you need to get to this hospital now you will be met by this doctor. I had another panic attack over the BMB and aspiration. I found it hurt the worse than having kids (that is because i'm a whimp).


I agree with CindyAnn list to Sandi she is one of the people who helped me get through the start of my journey!