Crashed with Promacta

Yep, I need a root canal. But, first, I have to get my count up first. I'm starting to feel like another tooth is going to chipped soon. It feels kinda off...love Prednisone for bring up my count, but really hate it with a passion.

Maybe I should have added that the next day I did a platelet count and it was 8. My dentist wasn't one who asked about platelet counts. I have yet to find one who does but I'm glad he didn't.

Urgh...my dentist can't do my root canal since my canal is a bit curved. So, now, I have to see an endodontics.

Update: Currently on 40mg Prednisone, 50mg Promacta
Count: 269K

Last week, 60 mg Prednisone, 50 Promacta
Count: 383k

For the last two weeks, I've been getting IV Iron since I'm anemic again. Since labs were good today, I asked my dr to go down to 20mg Prednisone. I'm starting to get the moon face and of course the weight gain, about 6-7 pounds now. I really hope Promacta at 50mg is working, b/c I don't want to do weekly nplate. One good thing is that I got approved for the financial assistance from Amgen...took about a month or so. I told them I might use it, but I like to have it in handy since they don't reimburse for previous injections.

Glad to hear numbers are up! Hope they stay their!

good news today- my counts are 24K woo hoo! that is a great count for me. I am mostly around 10K- often lower.

I started back on Promacta 25mg just about 3 weeks ago. Also was taking 5mg prednisone.
After 1 week my counts were 3K. bumped up the prednisone to 7.5.
A few days later, platelets at 12K. I figured that was due to increased prednisone. Frustrated that Promacta didn't seem to be working.
Now 18 days later I am down to 6.25mg prednisone and UP to 24K platelets- still 25mg Promacta. yay I will stay at that dose.

It surprised me that Promacta took so long to work. In the past I believe it kicked in after about a week. I had an intense 5 day headache this time after I began taking it. never have had that reaction before. Promacta is now costing me a small fortune, first months copay was $450. but at least its working! I was concerned it wasn't going to work this time. It pains me to have to pay that much money but I just HAVE TO get off prednisone. I want my adrenals back! hopefully with no permanent damage.

Slammed- hows it going? are your counts staying up? Once my counts went way up on 50mg and I was able to reduce dosage to 25mg.

Poseymint,

That's good news that your count is going up. I know it's frustrating being on prednisone and promacta. But, hang in there and know that you're not alone, b/c I'm in the same boat with you!

My hema told me usually it takes about a week for Promacta to kick in too. However, the last time I went from 60mg to 20mg Prednisone, still on Promacta, my count crashed..it went from 140k to 14k in one week. Like others suggested, it's possible that I taper off of prednisone too early since I was just on 60mg for about 6 days. So, this time around, I was on 60mg for about 2 weeks, count went up to 383k, then tapered to 40mg for a week, count went down to 269k, but still a very good number, so now I've been on 20mg of Prednisone since Tuesday, still on 50mg of Promacta. My next CBC is on lab...I'm expecting another drop, but hope that Promacta is going to keep my count safe. If the number good, I will ask for 10mg of Prednisone every other day.

For me, Promacta causes me rashes all of my face..I've been on Promacta from different dosages for 10 months now...never had a problems with rashes before until now. Wished the rashes were somewhere else, other than my face...I'm already breaking out like a teenager with pimples from the Prednisone.

Sorry, that you have to pay so much for Promacta. I've been trying get my RX refill and the insurance/pharmacy always make me go through loops in order to get it...it's a pain with all the paperwork and daily phone calls.

I will post my count when I get them on Monday...keep me posted with yours! Hang in there!

Count update:

278k with 20mg of Prednisone, 50mg of Promacta

I was quite surprised; had to read my nurse's email several times to make sure I got the count correctly. Last week, I was on 40mg of Prednisone, 50mg of Promacta, and my count was 269k. So, I was expecting a slight decrease in my count, not an increase. Thank goodness the increase of Promacta is working.

slammed thats awesome!! will be interesting to see what your counts do as you further taper off prednisone. My bet is that your counts will stay up.. hope so!

Today I tapered prednisone from 6.25mg down to approx 5.75mg. cutting my tiny 2.5mg in half and quarters. seems silly but if I go too fast at these low numbers I feel terrible.

Woke up with a terrible headache that I think might be caused from Promacta.(and work stress) Anyone else have headaches on Promacta?? I had morning headaches for the first 5 days of starting back on Promacta, never had a problem the other times I was taking it. So... will just see how it goes. I do tend to get migraines. I noticed rash is now on the list of side effects. When I took it back in 2011 the side effects list was much shorter.

I take 75mg before bed because of the headaches but it can give you very vivid dreams and sometimes nightmares.

Any weird stuff with Promacta? I see the flyer about the potential liver damage and it concerns me.

Since 2011, platelets have been up and down with steroids and now hematologist has requested Promacta approval from my insurance and it think I'm going to get it.

Thanks. Any stuff to prepare for?

On a humorous note, a friend said to drink it with a glass of wine holding the phone to call 911 with the other.

Thanks.
Lourdes

Hi Lourdes,

I've been on Promacta from 12.5 to 50mg for almost a year. I get my CMP (liver) lab every month and so far, everything is normal. I think liver damage is from long-term use. However, it's a POSSIBLE side effect. It doesn't neccessary mean you're going to get liver damage. My hema is more concerned about the unknown side effect for long term usage. I told him, I'm willing to take that chance, anything over Prednisone. I told my hema that I'm just using Promacta to hope to get me a couple of years of stability b/c it's been almost 4 years since I was disgnosed and there's still many ups and downs with ITP.

But, since I have increase my Promacta from 12.5 to 25mg, then to 50mg, I'm getting huge red rashes on my face (a possible side effect of Promacta). It's weird that a year ago, when I started at 50mg for a couple of weeks, I didn't get rashes.

Also, the insurance. It's a pain getting refills for me...it takes them about 8 business days to process the RX and that's me calling them everyday. I go through this every 3 months and stalking my UPS guy when it's scheduled for delivery.

I've been on Promacta since 12/13 and the last three days I've woken up with mouth blisters. Last week counts 37k, Tuesday I woke u with the wonderful red dots everywhere (chest, legs, bruises) all that is slowly going away. My mouth blisters where going away but then took my Promacta at 11pm the come 1:30am I have a new mouth blister??? On a high does of Pred which is helping but could the Promacta dropping my counts???

I don't think Promacta would make your counts drop unless you are not taking it properly. Skipping doses could cause counts to drop.

I take it close to the same time every night, so that can't be it. It was just weird, I take it and a couple of hours later a mouth blister pops up. Oh, well wanted someone else opinion on it, Thanks Sandi

Amber,

I don't think there's going to be a good explanation. I wanted one from my hema...as you know, I was on Promacta 12.5mg since 5/13, counts were good until 2 months ago. Increased to 25mg and started Prednisone 60mg. When tapering off Predisone, I crashed again. So, my hema increased to 50mg...my count is now good...tapering off of Prednisone. Depending on the labs on Monday, I can stop Predisone. Did you get labs done?

Getting labs on Wednesday and see hemo on Thursday. I feel God bruises ccome easy but red spots are going away. It is just the mouth blisters that confuse me, last time I had them counts low teens to singles. I ran into the couch last night and it isn't that bad no worse than when I did it. I'm n 75mg and 100mg Pred right now.

When I have blood blisters, I'm in the low singles...so getting them is definitely really bad for me. I'm on 10mg of Prednisone and 50mg of Promacta.

But, lately, when my counts are super low, I'm getting symptoms...maybe some petechiae..in the past, I get bruises, blood blisters, nose bleeds, bleeding gums.

Are you sick with a cold?

I don't feel sick, but it may be to much info, i'm on my period and my counts always drop around this time. I was waking up Tuesday/Wednesday with a bloody nose, not bleeding but more like dry. It seems like the pred is starting to work it is just taking time. Red spots, bruises going away, nose is good. Hope they are going up.

Great news, my count is at 336k...it went up, even with me tapering off of Prednisone. My hema let me stopped Prednisone today!

Now, for the million dollar question...why didn't Promacta at 25mg worked for me? And why such a late response with Promacta 50mg? Or is because I got my IV iron? Is there a link between low iron and platelets dropping? This happened to me when I was first diagnosed years ago, I was extremely anemic, once my iron supplements kicked in, my platelet stabilized...

Slammed:

People with Hemolytic Anemia have a problem with platelets and red cells see sawing. They get one up and the other goes down. What is the reason for the anemia?

I'm a runner...I do about 80 miles per a week. My hema says I need to eat more iron enriched foods or more meat, which I try to do...but it's not enough...before a became a runner, I never had this issue...AND I didn't have ITP either.

Hmmm. He never suggested a low dose iron supplement? Seems better than needing IV iron on occasion.

Sandi,

I was on 325mg of ferrous sulfate for years since he prescribed them. Then when my platelet crashed while on Promacta 12.5mg, he believed it was my iron supplement causing my body from absorbing the Promacta, so he made me stopped. It took about 2 months, then I'm anemic again. And that's when I had to do the IV Iron. I rather take the supplement, it's WAY cheaper. 2 rounds of IV iron cost me $700 out of pocket vs the $9 for a 3 months supply of ferrous sulfate.

I think we discussed this before, sorry. The only thing I can think of that would affect both like that is Hemolytic Anemia.

Well, I've had my first big crash since starting Rituxan/Promacta therapy. I had Rituxan on 12/27, 1/3, 1/10 and 1/17 and I don't believe it was successful. I started 50mg/day Promacta on 12/23.

All my platelet counts since January have been between 70,000 and 115,000...until today...37,000. I had some suspicions that something was up because in the last week I've had two unexplained bruises on my legs and last week I was extremely fatigued.

One theory for this decline is that the specialty pharmacy was unable to deliver my Promacta last Friday, so instead I received it this past Tuesday. I called the pharmacy this past Monday at 9am to confirm that the Promacta would definitely come on Tuesday. Since I usually take my Promacta right when I wake up around 7am, I took only one 25mg pill Monday morning in case I needed my last pill for Tuesday. When I received confirmation of the overnight shipment, I took my second 25mg pill around 5:30pm on Monday. Likewise, the Promacta wasn't delivered until 10am on Tuesday and by then I had eaten breakfast, so I waited until after lunch and took my 50mg around 5pm on Tuesday. I am wondering if these schedule changes on Monday and Tuesday could have lowered my counts? Still, the bruising and fatigue began last week, so I don't know.

My doctor wants me to go up to 75mg/day. I don't want to increase my dosage, especially since I was hoping to avoid long-term use of Promacta. Should I increase the dosage or try to ride this crash out?

Aliza:

I think that 37k is a respectable count on Promacta. The goal for the TPO's should be around 50k, and you'll probably see a fluctuation, especially if you missed a dose or took a lower dose.

Riding it out is up to you....when is your next count?

Aliza,

Before my crash with 12.5mg of Promacta, my counts were around 35k-50k for about 9 months until it crashed to 7k. I agree with Sandi, you should wait and see what happens. It's too early to increase to 75mg.

I am scheduled to go back on Tuesday for another blood lab. I'm considering calling my hemo tomorrow and telling her I want to stay at 50mg. I think the concern is that my twin sister is 39 weeks pregnant today, and I am planning to fly up to Boston as soon as I hear that she is in labor, which could be any moment now. I think my hemo wants to avoid a situation where I fly out of town with low counts. Anyway, I noticed a new bruise since my last post so I'm starting to get concerned.

Today count 31k on Promacta 75mg and tappering Pred 60mg at the moment.

WBC high 15.6, MCV high 101, neutrophils high 89, lymphs low 3, myelocytes high 2, neutrophis high 13.9, lymphs low 0.5????

Any thoughts?