Promacta treament update

Okay, it's the beginning of Promacta month #5.
Started in January on 50mg/day dosage. Count was 4k.
After 2 weeks, bumped dosage to max of 75mg/day, count in mid/low-teens.
After 7 weeks, count finally made it to 32k.
After 10 weeks, count made it to a whopping and monumental 52k!

17 weeks now.....yesterday my count was 47k on 75mg/day. Looks like I may have topped-out.
In three weeks we are going to try backing off to 50mg/day and see what happens.
Promacta still beats my old average of 20k-30k on immune system suppressants.
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Congrats Jack! I hope your platelets stay up.

Hairball Sez; Thanx for the updates. Now I am getting anxious about starting. However I've had a delay due to my insurance coverage with their preferred Promacta supplier. I'm currently on Prednisone at 20mg and my count runs about 120k. When I drop to 15mg, my count drops to 10k. I'm 68 and could probably live on Pred the rest of my life but the long term side effects could alter my quality of life. As for costs..... the Preds are pennies a day but the Promacta runs about $135/day. Somthin's wrong here.................

the Preds are pennies a day but the Promacta runs about $135/day. Somthin's wrong here.................

We are paying for the research done to bring these 2 drugs to market.
Especially since Promacta and Nplate were both created specifically for the orphan disease ITP. But hey, at least companies are working on better treatments than steroids and such. Although I doubt the cost will ever drop to the level of Prednisone. An ITP-specific drug isn't going to be used as widely as that all-purpose steroid.

BTW: Ever wonder why a lot of doctors treat ITP with Prednisone, then go right to yanking out the spleen? It's CHEAP!

I feel your pain though...it was hard to come to grips with going from a $5 co-pay for generic Cyclosporine to the $60 co-pay for Promacta. Although, $60 ain't bad at all. My 75mg/day dose is about $257 per day...just under $8000 per month for 90 pills.
Good luck with your insurance. Hang in there!
Luckily, my wife is a manager in the Ohio State University Hospital system and my Hematologist is at their James Cancer Hospital, so the OSU Hospital employee's insurance couldn't really refuse Promacta treatment.
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I'm on NPlate and they have an excellent program that pays for ALL of it for me! I am considered low income though, I would guess that's why. I don't know if Promacta has a program like that. It would be worth checking into though.
Jack, you live around Columbus? I'm about an hour and a half away. I was afraid they were going to send me to the James Cancer center, but it turns out that alls I have is ITP! Hallelujah!

I'm on NPlate and they have an excellent program that pays for ALL of it for me! I am considered low income though, I would guess that's why. I don't know if Promacta has a program like that.

Yes, the Promacta Cares program also has low-income assistance.
They really have to...the stuff is so expensive.

Jack, you live around Columbus?

Yes I do.

I was afraid they were going to send me to the James Cancer center, but it turns out that all I have is ITP!

Although The James has that scary word 'cancer' in it's name, I cannot think of a better place to be with ITP.
They have an excellent hemo department and my hematologist is one of the best in the nation. They also have a satellite center (Stoneridge) where I can stop on my way home from work for testing and such.
I spent a few days in The James. Before we all got used to a sub-10k count as not being scary for me, I ended up in the OSU Hospital ER, then was wheeled next-door to The James for treatment. IF I have to be in the hospital, that is a cool place to be. The rooms are like a hotel and the staff is just amazing. That was years ago and I've been down to zero-k so many times since, that it has ceased to be scary....and we know exactly what to do now.
Anyway....it is a wonderful place for those of us with auto-immune disorders.
My twin sister (yes, 'Jill') just started there as well. Not ITP, but another platelet disorder.
Also, my step-father is alive today due to The James.
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Hi my name is Lin. I'm brand new here (and to this disease). I just started Rituxan infusions and my doctor gave me this website address. I thought I would touch base with someone and see if I'm signed in correctly, etc. I desperately wish to speak with people who are going through the same things I am. Any takers? Thank you! Lin

Hello Lin. Good to see you! Your doctor gave you this website? When ever I mention it on my visits everyone is like "Oh, that's nice." Like they've never heard of it! Not that I'm expecting them to, it's good that your doc has suggestions like this site. I'll be a taker to discuss what we're going through. Do share your story.

Lin, This is the best place to be for info on ITP. But you've got to kinda read all the posts for a couple of months to sorta get the feel of what's happen'n. Seems like we all have the problem but there is no medical protocol or standard procedure to treat the ITP. Each Hemo Doc has their own ideas of what to do and when, but as a group, their is no consistency or 'hard and fast' rules for treatment. But we're all in this together.

WeirdJack: Finally started Promacta on Fri. 5/21. Didn't get a CBC as its been predictable using Pred. Only problem is scheduling other meds. I'm still on 20mg Pred and Coumadin. Next visit to Hemo Doc is 5/28. No noticable side effects.............yet. Hairball

After 8 days on Promacta at 50mg, Count went up about 100k. As I was still on 20mg Prednisone, the actual number (221k) is misleading. This week I'm dropping the Pred to 15mg and will revisit the Hemo Doc on 6/3. The 5mg drop in Pred may seem small, but 15mg is below the threshold of effectiveness. More data next week......

hairball - who told you 15mg is below 'effectiveness'? The natural levels of cortisol in the body are around 7.5mg.

The most I ever take of pred nowadays is 15mg as that is plenty for me to see a high count. But if your count has suddenly gone up a 100 then it's going to be the Promacta doing it. Good for you.

gsh: We all respond differently to the same meds. Emperical data from the last 5 months showed my personal reponse is somewhat consistent depending on the dosage of Pred. At 15mg my count runs about 10k. At 20mg the count can be up in the 150k range. 'One size doesn't fit all.'

Wow hairball01....it went up 100k in 8 days?
I want your reaction to Promacta! please!
Mine has been more like 8k in 100 days......okay, not quite THAT bad.

Congrats!

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WierdJack; A little data on the Pred/Promacta transition. Weeks before starting Promacta, my last 3 counts were 188k, 160k and on 5/10, 129k. I started Promacta on 5/21...... while also still taking 20mg Pred. The next CBC was on 5/28 with a count of 221k. The Hemo Doc then dropped the Pred to 15mg. My next visit and CBC will be on 6/3.

Two reactions come into play: The drop in Pred dosage will allow the count to drop. At the same time, the effect of Promacta is expected to sorta max out and force an increase in the count. Thus off-setting each other. At least thats the plan............

WierdJack...... Always expect the unexpected. Saw the Hemo Doc on 6/3 exactly 2 weeks after starting Promacta at the initial 50mg dosage. The count was 411k. It has NEVER been that high. We're following the mfg'r directions and will suspend the Promacta and see what the count is on my June 8th visit. The CBC on June 3rd showed both Red and White blood cells in the normal range. As for Promacta side effects; Nothing yet but sometimes the Pred will minimize some side effect as to be unnoticable. A couple more weeks and I should be totally off the Pred.