Crashed with Promacta

Amber- my WBC white blood cells and Neutrophils are always high from being on prednisone. thats what my hemo told me. Not sure but that may be the reason for you too.

I'm taking 25mg Promacta and 5mg prednisone. Found out my platelets just crashed to 2K. argghh I noticed a couple bruises and some petechia, nothing much. I thought the Promacta was working at 25mg dosage, that is disappointing.

I decided w/hemo to increase Promacta to 37.5. so I will be taking a 25mg and a 12.5mg pill. I increased the prednisone to 6.5mg which is just a tiny bit- I just can't bring myself to take a bigger dose! I'm trying to get off of it, plus I'm not too worried about bleeding.

Aliza- I personally would not increase my Promacta if my plates were 37K, thats a great count. But then I don't bruise at 37K, plus I am concerned about counts being too high on TPOs, so we're all different. If you did increase to 75mg it doesn't have to be forever, you could reduce your dosage after your trip. Or you could add a 12.5 pill to just bump it up a bit. Or do 75mg every other day.? - you can tell I play around with these things! :lol:

When I first started taking Promacta in 2011, we were supposed to take it 4 hours after a meal and 4 hours before. So we were taking it in the middle of the night. I still take it around 2:00-3:00am. But now the directions are different. I just wonder if it would make a difference if you went back to the old 4 hours routine.? just a thought- enjoy your sisters birth!

Thank you all for your thoughts! I ended up taking 75mg this morning because the additional bruise I discovered last night had me worried. I'm anxious to see where my count is on Tuesday morning. If my counts rise near 100k I definitely plan to go back to 50mg/day.

I have found the empty stomach rules so confusing and no one has given me a clear answer! I was first told 4 hours after, 4 hours before a meal...then I discovered that it is only 2 hours after, 1 hour before a meal and avoid dairy and high calcium or iron foods or supplements 4 hours after and 4 hours before. It was really hard for me to restrict my breakfast options so I gave up on that, although I do avoid milk. I ended up making up my own rule which is 4 hours after, 2 hours before a meal...I take my promacta around 7am after sleeping all night and eat breakfast around 9am.

Amber - Prednisone can affect white cells and if the doctor isn't concerned, I wouldn't worry about it. I have had very wacky white cells on occasion in the past and they always ended up going back to normal after a few weeks. The past two years, they are always low but I guess that is my new normal.

My white blood count was high on prednisone too. They were at 18,000 for a while on30mg pred. My dr said not to worry, it was from prednisone.

I went through all the materials about Promacta when I started taking it and the 4 hour guidelines are for Calcium and minerals not necessarily meals. The guideline on meals is an empty stomach (1 hour before or 2 after). I take mine with Thyroid meds that have the same resrictions. I take them as soon as I get out of bed and don't do breakfast until an hour later (some times that means breakfast is to go and I do it when I get to the office). I just make breakfast dairy free and take my vitamins and supplements late in the day.

Counts got back today 3k and doctor wanted to re check in house and came back 2k. So back on 60mg of Pred, so no sleep for me......

My last doctor would have sent me straight to the hospital and or infusion center.... I only have a few small mouth blisters.

I cut the crap out of my finger yesterday and wouldn't know that my counts are down (it didn't take too much to stop the bleeding). Scraped my thumb today and no bleeding..

I almost started laughing when my regular doctor called to tell me my 3k count. He was pretty much freaking out, I told him I have an appointment at 1pm today and will see her then. He was like no call them now and see if they want you to come in sooner, I did it just to please him and I already knew they would say just come at 1pm. This was the first time he has seen them that low and I was this low for a whole month last year.

Counts 9k and doctor wants to do IVIG's for 3 days, I have only ever done 2. I'm trying to not worry about the cost but that is the only thing I can think about. I do have some coverage with the program I'm on but it isn't as good as it was. But what are the other oppsions for counts at 9k and been on Pred 80mg since Friday.

Losing hope at this point

Have you tried any of the immunosuppressants like Immuran or cellcept? I remember at the conference the panel discussing combining some of those to see if a combination could possibly help if all else fails.

That will be the next step, after I get better numbers we are going to get me off the Promacta. Since insurance doesn't cover it and once I sign up for insurance I loss the Promacta. So need to get off before November and on something else.

Amber,

I hope your counts rebounds. ITP has been very harsh on you.

3 rounds of IVIG's and counts today 35k on 60mg of pred re count Thursday. Still on Promacta 75mg.

Amber, so sorry you have to go through all of this. You have really been on everything possible!!

Please be careful of Immuran. My friend was on it for her RA and she ended up with some problems with her lungs. Maybe Sandy knows more about Immuran and can let you know.

Hope you get those platelets up.

Dee Dee

We haven't talked about anything else yet. Thank you I will remember that for sure. I haven't really looked at anything else hoping this works. Any information on immune suppressant medication would be great, from real people.

My doctor out me on cyclosporine and Promacta. We figured outfit didn't do much for me. It may be worth it for you. One can suppress the immune system while the other produces platelets.

Mycophenolate, otherwise known as CellCept is the most modern immunosuppressant used for ITP.

I've been on both CellCept and Imuran. I actually have Imuran in my drawer and am supposed to be taking it. I was on it a few months ago but kept getting sick with URI's. I already have lung damage from Methotrexate so didn't want to risk more lung scarring from infections. Those drugs seem to do more harm than good for me, so I really hesitate taking it again.

191k today dropped pred to 50mg from 60mg, re check next week. Everything else is still the same Promacta 75mg

That's good news Amber!

I will take it and deal with tomorrow when it gets here.

So Amber, which treatment is working for you at this point? If I understand correctly, you are on Promacta, IVIG and prednisone? Do you need all three together to get a rise in counts?
Erica

Kind of looks that way, really don't know what is working. I guess we will see where I am at next week.

Amber,
Glad you are doing better!! Just need to figure out which one is working for you.

Dee Dee

Amber,

I hope your counts stays up. Try not to stress too much. I know it's hard not to stress, but one day, it will get better.

Trying to relax and chill this long weekend. First time in a years that I am off from works and not having to get treatments.

So far it has been really nice...

IVIG's is set for Saturday, Sunday, Monday at 8am. Looks like I'll be hanging with the infusion center crew this weekend. 25k down from last week 191k.... Still on pred 50mg I have enough oxygen in my blood, so don't know why I'm winded now i have to watch for cold, cough and temp.

Recount today 145k oh ya... having trouble with re ap for Promacta program (paper work). So I was on 75mg changed to 50mg (had bottle in cabinet) will run out Monday. But will enjoy the counts....

Oh and she dropped the pred dose to 45mg from 50mg.

Waiting on CBC to come back today. 45mg still on Pred and 75mg of Promacta

Amber, Hope your counts come out okay. Will be saying a prayer for your. You really are a strong young girl!! Keep staying strong!! And hope you feel well.

Dee Dee

Here's hoping things are turning around! Sending prayer for lots of platelets!