Counts with Promacta

dmblank wrote: To all:
When we switched to 50 mg. I had dropped from the 50s to the 30s. The 50 mg. just pumped me up pretty high and I've stayed there. Like I said, I hover around 100-120. Funny how we all start to be able to tell what our bodies are doing without counts sometimes. If I don't have any small dime-size bruises, I'm usually pretty stable.
Slammed, I laughed about the dentist experience. My dentist was diagnosed with ITP after me so we trade stories and now he's seeing my hema!
Best wishes for a great day to all of you!
It's raining here! Yay!

When I was at 50mg, I went from being in the 40's into the 800's within about 10 days! It was crazy.

It's pouring at my house right now...be safe today!

He saw my count of 51 and asked if I was scared and wanting to have another CBC on Friday. I almost asked if he was kidding.

Vdeutsch85

What I want to know is why you did not ask if he was kidding.

My thinking it could of lead to a conversation where the doctor learned something.

Winifred,

I wish that it would, but he's hopeless. I've gone in multiple times with research which he has ignored. I basically should just ignore him because he has no interest in learning anything. That is the reason I started going to Cleveland clinic to see a specialist. He runs all of my treatments but he is 4 hours away so I have to go to local hema for my CBC's every week.

so, I've been on 100mg of Promacta for around 3 weeks now, had a CBC on Friday and my count skyrocketed to 187! I'm taking it upon my self to lower my dose. I will refer my doc to the website. I am seriously thinking of finding a new doc.

server wrote: so, I've been on 100mg of Promacta for around 3 weeks now, had a CBC on Friday and my count skyrocketed to 187! I'm taking it upon my self to lower my dose. I will refer my doc to the website. I am seriously thinking of finding a new doc.

Are you going to lower the dosage to 75mg?

Server,

I would find a new doc before doing that. I was on 50 mg and up to 258 and two weeks later down to 51. I feel that it is important to be closely monitored. However, the right doctor can make all of the difference!

I think that going up and down quickly can be the risky thing. If you have counts in the 50's and drop to single digits the next week, the body can most likely handle it better than dropping from the 200's to single digits. I wouldn't worry much about a crash from a lower starting point as long as you know counts will go back up in the next week or two (which they probably would with Promacta).

The same goes for the rises. A slower rise would be much better than a quick one that skyrockets counts to a high level. That seems to be when the risk of clotting might be higher.

Obviously it takes time to get stable, but there will be drops along the way in some cases and as long as you are monitored and treated, you should be okay. It bothers me to see these dramatic rises and falls that could probably have been avoided with a bit more knowledge on the part of the doctor. These TPO's seem a bit dangerous in the wrong hands.

Scared with a count of 51? I can't believe he'd be serious about that. It's perfect.

It's interesting to see the experiences that you girls are having.

Sandi,

It was over the top scared at 51.... I was the one who had to assure him that I was fine and not freaked out about it. If my counts stay at 51 I would be one happy camper! I will not listen to the local hema this week and just call my specialist at Cleveland clinic. I have a few bruise not overly tired and no petichae so feeling pretty good.

The specialist thought Promacta could be a good fit for me since I was so all over the place on Nplate even on a consistent dose. His theory was that maybe if I have a more stable amount of TPO in my bloodstream at all times I could keep a steadier count. He would be happy with my counts at 51 as long as they don't drop. He's more worried about my symptoms more than anything else since he understands that the worst thing for me is being 28 but on some days feeling like 65.

Oh well, we will just see what the counts are on wed. I'm over the whole I'm going to freak out about counts thing. I enjoyed my weekend and had several laughs at work today. One of my kids said that when he talks his voice is changing to a man. ( he is only 9 so it was pretty hilarious)

I continue to be inspired by people like you on this site who truly just live life to the fullest. I think it's been a good life lesson for me. Take one day at a time and remember to laugh....and when you teach my class there are days where I actually have to fight laughing.

V,

Hey you! You are doing great! Be happy! Remember, YOU are the one in charge of YOU! If you feel well, and are doing what you wish within reason, then I think you are where you need to be! Doctors sometimes forget that "one size does not fit all". I remind mine of that every visit. He is the Consultant, but I am in charge.

You are active, productive, and you sound very happy! Stay that way! I am! I have started dance classes again! LOL I will tell you about that sometime if you wish! LOL


Jeffrey

Jeffrey,

I need to hear about these dance classes. Is it Zumba? I have done Zumba and it is a blast. I should get back into it one of these days.

Valerie,

I'm right with you just enjoying every day. My students keep me laughing too, plus I never gave to go exercise, chasing the preschoolers around is about all the exercise I need. But, it is great to be able to get up everyday and do my best to help them.

Sounds like you are doing well and so far so good with the promacta despite your less than helpful hema.

Vdeutsch85,

Good luck with your CBC's tomorrow!

I'm sure I have stated this before, but I really don't know where I would be without all of your support! I am very thankful to all of you!

Dru,
I can imagine that preschoolers wear you out. I work with 9 year olds. We watched some video about this weird lizard who runs like a dinosaur a few weeks ago and somehow I ended up pretending to be a crazy lizard woman who gobbles up boys for breakfast in the gym. Sadly, I sometimes wear them out by the end. Now it's become a joke with my co-worker. She left a picture of a lizard on my desk and put a note....,have you seen the crazy lizard lazy? Anyways never a dull moment at work.

V!

Good luck with your counts tomorrow! Don't sweat it! If you have "extras" please think of me! It is the giving season you know!

And! If you counts are not what you want, big deal! You are doing fine and feeling fine! Makes me happy!

Jeffrey

Pdsa friends,

My counts were 85 today....so Jeffrey I can def give you some platelets! Thanksgiving and Hanukkah are only a few weeks away!I told the local hema that I will be back in two weeks even though he is freaking out and wants me back next week. I need my sanity back so will be taking a doctor free week next week upon my own decision. I left a message for my doc at Cleveland clinic and that if he disagrees with my choice he can call. I think I know enough to know when my counts are low at this point.

Vdeutsch85,

I think 85k is a great number. Hopefully, you're feeling better. With those numbers, weekly labs, in my opinion is uncalled for.

I can't wait for Thanksgiving! If my counts are good, I'm going to have a glass of red wine!

Slammed,

I have a good feeling you your counts will be high on Thanksgiving! You def deserve a glass of wine! My parents' house is going to be crazy, we will be celebrating Thanksgiving and Hanukkah at the same time....so I'm assuming a lot of wine will be around. I'm really looking forward to it! I def have to get some shopping done soon though!.....maybe I will hit up the mall next wed instead of doc!

Vdeutsch85,

I hope so! I am hosting Thanksgiving dinner at my house for about 20 people, so I'm definitely going to be needing that glass of wine! I'm actually looking forward to eating...lol. I wonder if I can drag my dear husband to the outlet mall...

I have CBC's tomorrow. I'm trying to stay positive, but the past week or so has been very stressful with work and my kids. I have a bruise on my arm and my gums are a bit swollen (usually a sign that my count dropped)..glad there's no petechiae (knock on wood)...that's a BAD sign for me...that means I'm in the 20's and dropping fast!

Four weeks on Promacta Monday 27k and will find out today what the new count is...

Amber,

That's awesome news! Hopefully, it's a steady upward trend from here.

Vdeutsch85 and Slammed,
I've been wondering since I've read your posts about alcohol while on Promacta. I've been worried about my liver every time I go to the hema. She told me not to drink because of the stress that it puts on your liver. So, 3 1/2 years ago I vowed to never drink on Promacta and I haven't. Have you ever seen anything about it from GK ? Seems like I read something about not drinking but maybe I dreamed it!
Donna
I'd like Sandy to remark on this, if possible

Sorry Sandi, spelled your name incorrectly!

>>>"I've been wondering since I've read your posts about alcohol while on Promacta. I've been worried about my liver every time I go to the hema. She told me not to drink because of the stress that it puts on your liver."

I know no one asked me....but.....
In the past 11 years, my hematologist has not once said I should not drink. I asked him right off!
I used Promacta for 3 of those years, back when both my hematologist and I had to be enrolled in the GSK program to use it.
My liver levels were monitored very closely....with absolutely zero change.
Same story with other treatments I've used, zero change in liver function and its levels and zero effect on platelet levels.

Do some folks seem to be affected? Sure they do. That is why we get monitored.
However, ITP and its treatments do not affect everyone the same. There is no one-size-fits-all with this adventure.

As for me? I am absolutely delighted that I can drink a few snifters of a good 2x(3x)IPA, Imperial, mead, or such with dinner and not have to think about ITP or meds, platelets, or enzymes. I quickly got weary of every aspect of life revolving around ITP.

Whoa, now I just might have to swing by my favorite watering hole on the way home from work and pick up a growler of some locally brewed 'Brothers Drake Bergamont Blue' !!!!

Hiccup! ......... errr ..... pardon me ....

.

I like your style, Jack! I also asked similar questions when I first got ITP, and while most MD's don't encourage (any?) drinking,mine have not raised any red flags on any of my treatments, including the current Promacta regimen. Like you Jack, my lifestyle has involved regular alcoholic drinks, although I am a wine guy myself. After two months on Promacta, still no signs of liver issues,but I'll be checking with my Hemo about whether I can return to being a wine judge (someone's got to do it...)!

Luca and Weirdjack,
I guess that it boils down to personal preference. I am concerned about my overall health, as well as my "liver health". Since I don't drink while on Promacta, I also don't have to worry about any additional stress on my liver from alcohol. I also trust my hema but more importantly, I have to trust myself to make the best choices for my health. For me, drinking is no big deal to give up when it comes to my health. No one can tell you what the effect anything has on your body. However, it is true about the effects of alcohol on your liver. Oh, and Weirdjack, my hema has never said that to me until I got on Promacta. I was also enrolled by GSK to receive Promacta. I did ask them about alcohol and they advised against it. I think that you were very lucky to not have any changes. Others may not be so lucky.

Well, bad news today, my count dropped today, it's at 35k. I wasn't expecting a good count...since I'm starting to realized that when I'm highly stressed, my counts drop dramatically. Yesterday, I was so stressed, I just broke down and cried...my husband even remind me before my CBC's today that my count will be low and to expect the worse. But, I was still hopeful for a good count, so it's still upsetting to actually hear it.

So, my hema wants to see me on Monday, signs.

Dmblank, I can understand your concern about the liver. I'm not a drinker myself, but once in the blue moon, I'm just want one. A sip or two is good enough for me. So, I have to agree with you that drinking does stress out the liver and I rather just try to minimize the damage as much as possible.

Slammed,

I can def see how stress can affect counts! Maybe take some time and do something fun and relaxing this weekend if possible. It doesn't help to have that extra stress of low counts weighing you down either. I'm sending some platelet making vibes your way!

When I asked my doc about alcohol and Promacta he wasn't concerned. He was more concerned about drinking if my counts are low. I'm reading the brochure and it does have info about liver problems, but nothing specifically about alcohol. I also do not remember them saying anything at conference.

I have actually only had two drinks since last December. I will probably have a few over holidays if counts are good since my parents enjoy wine with meals. On most days my guilty pleasures are desserts and caramel macchiatos.

Amber,

That's great news! What doseage are you on?

I know that several medications can cause liver damage. I was on methimazole for grave's disease for two years. Like on Promacta I was getting liver tests every month or so. While on meds that have this potential, it's just good sense to get checked. Luckily I did not have any effects from that so hopefully none on Promacta either.

Slammed:

35k isn't bad! It's a safe range. I know this is easy for me to say having normal counts, but I once was where you guys were. Honestly, I was happy with anything over 30k. At 20k I became more watchful because I'd start treatment around 10k or 15k. I didn't have TPO's as a choice back then so the only thing I had was Prednisone. Off on off on off on...that's what I did.

The best thing to do is to try to accept a new normal. I know hearing that stinks. I never wanted to hear it either when I was newly diagnosed with Lupus, but it's about all you can do. I know ITP symptoms get worse when counts are lower, I've been there too. All you can do is live one day at a time and know that things will get better again, could even be next week. ITP is full of ups and downs, that's just the way it is. Stressing won't help.

As for alcohol....I think that drinking alcohol while on any drug that carries the risk of liver damage will increase that risk. Look at Tylenol, the warnings are clear.

I've been on Vicodin, Methotrexate and Imuran in the past few years and was warned by my doctors to never drink while on those meds. As a result, I haven't had a drink in about 5 years. I miss it sometimes, miss being a normal person. But honestly, as awful as I feel most of the time anyway, alcohol would just make it worse. It's not worth it.