Crashed with Promacta

Hi,

It's been a while since I posted. Lately, I've been feeling very fatigued, getting some bruises, petachaie, even had 1 blood blister in my mouth. I called dr, he increased my Promacta to 25mg about 6 days ago. So, now, the blood blister went away about 2 days later, the bruises and petachaie faded, almost gone. Had my monthly labs...and what a surprise! My count is at 7k!!! My hema called me and asked me if I skipped a dosage or what's going on. I have a very mild cold, but other than that, feeling much better than I did 1 week ago.

I'm pretty upset that I'm back to 60mg of Prednisone. I thought I would never take steroids ever again when I started Promacta. And what's shocking is that my hema didn't make me go to the hospital this time. He ALWAYS made me going with any count less than 10k. I told him, I had no bleeding symptoms, so this lab result of 7k is quite a shock to me. In the past, when I'm under 10k, I would have bleeding gums, huge bruises, petachiae. He tells me that I have "super" platelets since my body is getting used to having low platelets. But, whatever platelets I do have, they work much better.

I feel pretty upset. I feel like ITP always throws me a curve ball. So far, none of my treatments last more than a year before we make another change. I know that I was only taking 12.5mg of Promacta before, it was working since May, but why did it all stopped all sudden? I'm so frustrated with my damn immune system.

Have you considered refusing the steroids and just riding out the few crashes? I did that while on Nplate. I found it much simpler knowing that the Nplate was doing without the complication of steroids.

Slammed:

Try not to be too discouraged just yet. You knew that you were on a low dose and might have to raise it at one point. Strange things happen from time to time and I wouldn't quite say that Promacta stopped working. The higher dose might just do the trick.

Many doctors don't hospitalize at low counts. Mine never did. Even the Guidelines say to go by symptoms rather than counts. If you have no symptoms, great!

Ann: How low was your count when you crashed on Nplate? I have crashes around the teens with Promacta and my hema was ok with it. However, he is not ok with any count under 10k. I am on the fence about taking/not taking steroids. I'm worried that it can go lower than 7k and something might happen. I hate steriods...I feel so weird now. I can feel sweaty, my heart rate feels fast. It would nice not having to take it so I know if the increase in Promacta is working or not.

Sandi: It seems like my hema is more relaxed this time around. It helps that I'm not a bleeder and he knows that from the previous 4 years I've been with him. I have many crashes in the past, and I've always been hospitalized.

One thing I miss already is coffee...with the 60mg of prednisone, I try to stay away from caffeine or I think I will never be able to sit still for work.

My Nplate crashes would be down to 1. I'd have nose bleeds and blood blisters all over my mouth and lips. I looked a mess. First time I did take steroids but refused more than 15mg so that I could get off it quickly. Nplate takes 5 days to work and after that first time I didn't see the point for just 5 days and a higher dose of Npalte always worked, for a while at least, until the next crash.

Ann,

I don't know if my family will agree with me not taking prednisone if I'm under 10k. They are too worried about the "what if's". I will talk to my dr next Tues about this when I see him.

Slammed:

I drink decaf and find it pretty darn good since I have to have my morning coffee.

7k is low, but since platelet counts are not an exact science and counts fluctuate, pretty much anything under 10k is about the same and can change many times through the course of a day. If you got tested a few times during the day, you could be at 3k and 11k all in the span of a few hours.

How well do you respond to Prednisone? If you do well, a lower dose would bump you up since you're not comfortable with lower counts. Compromises can be made.

Sandi,

To tell you the truth, I have never tried decaf before! I do love the caffeine buzz I get from a small cup of coffee. I just drink it about 2 days out of the week max.

When I'm on Prednisone, 60 mg, after a week, I will be in the mid 40's. The highest response I received was about 2 wks or so on 60mg, is about in the 90's. The norm is around 60-70's. My hema and I always make sure I always have a bottle at home for emergencies like this. But, today, I just request a month's supply refill.

Well, Prednisone will sure give you your buzz! If you miss the taste, try decaf. It's not so bad. I couldn't tell the difference if given a taste test.

As for the Prednisone, you have to do what you feel you have to do. Treatment decisions can be tough. I must have missed it, but did he raise the Promacta dose?

Sandi,

I started taking 60mg of Prednisone and 25mg of Promacta. My monthly labs have now gone to weekly's now.

Maybe it's for the best I stay away from coffee. I like the sugarly/sweet ones...hehe. White chocolate mocha is my ultimate favorite!

Slammed wrote: My monthly labs have now gone to weekly's now.

It won't last long. You'll be back up in no time!

Thank for the encouragement! I really need it.

Update: Had labs today. My count is now 140k. I have my appt with my hema tomorrow. I can't wait to taper off the Prednisone already! I'm still trying to get my 25mg Promacta. It's been over a week...the insurance company approved my 25mg, only until July. Accredo is taking over a week to process the RX, and now, there's a shipping mistake, so they are trying to track down the shipment.

Great news! Back on the upswing....

Just got back from my appt, I will be on 20mg of Prednisone for 2 more weeks and 25mg Promacta. 2 weeks of Prednisone is quite a long time, I was hoping no more Prednisone with such a high count. I'm kinda ticked off at him.

I have to remind myself that it's a good thing, I'm not on 60mg longer than a week. I'm very lucky that I had such a good rebounce within 6 days from going to 7k to 140k, and no hospital.

The prednisone is driving me nuts. Urgh...all the emotions, I feel like I'm going to explode like the hulk!

Slammed wrote:
The prednisone is driving me nuts. Urgh...all the emotions, I feel like I'm going to explode like the hulk!

Slammed, I know just how you feel....hang in there! It wouldnt be safe to just stop the prednisone anyway, you have to taper off.

It's only 20 mg's! You can do it. You will not be on it long.

Slammed, if the crash happens again, perhaps you could suggest to the doctor that such a high dose of prednisone isn't necessary. I'm lucky in that my doc thinks that 20 is a high dose! I've not been on Promacta, but it sounds as if, in your case, 15 or 20 mg of pred would have done the trick as well as 60--maybe you wouldn't have gone up as high, but you probably would have gone up to a safe level.

Karenr,

I think your suggestion is a very one good. I will keep it in mind. I think my hema kinda of panic whenever I am under 10k...thus being aggressive.

I wonder why I crashed in the first place...I've been on Promacta since late May 2013...and haven't seen such low counts.

I did refuse Steriods and told my doctor I would see him in the hospital..I take Promacata and yes when I am sick with a flu or ill they went down even on promacta but hover in 20K ..25 mg is considered a low dosage to begin with 50mg can me average..I would have either taken a stand about Steroids or increased with dr care the Promacta..Im sorry you fell bad but dont become a victim..its so unattractive ..you need a clear head when dealing with ITP...people who have ITP have choices...and can collaborate with Dr's after all they are hired by us..they are kind of our employees if you will..Steroids destroy alot of other body parts..they also make you look like )((*(__... my doctor knows better...

Krisy,

I don't think myself as a victim. I was given choices...and I would like to give myself a piece of mind trying to upper up with my counts with steriods instead of going to the hospital. I have a busy life with 2 fairly small kids, and going to the hospital each single time my count crashes just doesn't make sense for me. 1) I don't have time to be in the hospital (why go to hospital? For what? A transfusion that will last for 2-3 days..then what? It takes about 7 days or so for Promacta to work 2) money Each time I go to the hospital, I have to pay 20% for my stay.

Yes, my choice is Prednisone, even though I hate it...but sometimes, one gotta do what one feels best. One thing for sure, my dr knows better to ask for my spleen!

Slammed you nailed on the head.


Treatment of ITP is looking at the whole picture. Your job, life, ITP numbers, ITP symptoms, financial. After factoring in everything than it helps you to decide which is the best treatment.

CBC today...it was at 14k...no bleeding symptoms at all...I was pretty suprised again for such a low number. Two weeks ago, with 60mg of Prednisone, 25mg of Promacta, it was at 140k...Currently, taking 20mg of Prednisone, 25 mg of Promacta...sighs...here we go again.

Slammed:

It's okay. If you don't have any symptoms, you're okay. Focus on the symptoms not the numbers. You'll get back up there. One day at a time. Are you going to bump Prednisone back up?

Sandi,

I have an app with my hema tomorrow. I will see what he thinks. Since I don't have any symptoms, I'm going to ask him to play the wait and see game.

BTW...I have a dentist app tomorrow too. I chipped a tooth this weekend. Just wondering I've been on Prednisone on and off for over 3 years now...would it cause my teeth to be weaker? I've been having lots of dental issues lately. I'm going to ask my dentist about it tomorrow.

Oh yeah, Prednisone messes with your teeth. I have so many fillings I don't know how many actual teeth I have left.

Sandi,

Ijust googled it...all I can say is, crap, I guess I need to start saving for dental work. Our dental insurance is crappy to say the least.

I chipped a tooth also last year. ow- I was eating hard candy. And also have been on prednisone long term. At the end of 2011 I decided I would not take any more doses of pred higher than 10mg. So for the most part I've been on 7.5mg or less. I really thought that I wouldn't have bad side effects from that dosage but I've had bone loss. thats a worry. I've been getting a bone density test every year or two. I take calcium, vitD and use toothpaste given to me by my dentist- Sensodyne pro-enamel. don't know if it strengthens the teeth but does help with sensitivity.

Did you lower your prednisone dose quickly, like by 10 or 20mg? in my experience, that can cause a crash. That might not be the reason for your drop, but I have had that happen when I tried to taper in big jumps. Sorry to hear Promacta isn't doing what it did before. ITP, its a mystery. Your numbers with Promacta might come back- hope so!

Poseymint,

I've too been using Sensodyne for about a year now. My teeth is not sensitive, so I guess that means it's working.

I was on 60mg Prednisone for a week with 25mg of Promacta for a week, count went from 7k to 140k. My hema reduced it to 20mg Prednisone. So, yes, that was quite of a reduction.

Definitely ITP/immune system is a black hole. When it wants to, it just sucks you in without any warning. I feel like it's always changing and I'm trying to keep up with it.

I was on steroids and had toothache. Went to the dentist and he did a root canal treatment. He said it was a bit weird because the tooth was okay but when he got into the canal it was full of blood. So he filled the canal but I didn't need a crown or anything because the tooth was fine. He said it was odd and I put it down to steroid use.