Counts with Promacta

Vdeutsch85 wrote: I'm at 233 today. They gave me a half dose of Nplate and with counts that high I'm hoping that Promacta is working as well. Probably won't know for a few weeks.

That's great news...hopefully, it's Promacta that is starting to work.

Just got the results for my CBC, it's 52k. I still have my cold, but slowly getting better. My dr is out of town, so my nurse is paging the on-call dr.

Well hopefully it will be like me when I had a cold and my counts dropped and then rose really high. Hopefully you can rest and fight that yucky bug! Keep me updated!

Sighs, my nurse called me. Dr is currently out of town, however, he wants to see me next week when he gets back...you're right, I need to get some rest...life has been really stressful with work, my laptop died on me...then the family van...and this horrible cold...blah!

It's always one thing after another. I don't think stress is the cause of itp, but I don't think it helps it either. I hope you are feeling better!

You're right, it's always one thing or the other. Personally, I do believe that stress plays a factor in my case. Maybe it's just a coincidence that my count crashed when I'm highly stressed.

The cold is getting better. There were days when I was so tempted to take some cold medicine...but the fear that the OTC cold medicines will somehow cause Promacta not to work, stops me to take them.

Slammed and others; do we have any research info that indicates that the efficacy of Promacta (Nplate etc.) can be affected by OTC/cold medicines, colds, stress etc.??? My numbers have been fluctuating on Promacta also, but I can't really tie it to any outside factors. As for my update, after my count went to 144k on 50 mg of Promacta last month, I cut the dose to 25 mg (largely due to cost issues) only to see my count drop to 37K over the next 2 weeks! I met with my MD and he's put me back up to 50 mg, saying my "dose" may be between 25 and 50 mg. But he, nor anyone else has indicated that I (we?) should expect significant fluctuations due to external factors. Are there people out there who have been on Promacta for a long time who have experienced these large fluctuations due to identifiable external conditions??? All three of us (i.e. Slammed, VDeutsch, Luca)have been on Promacta for less than 6 months, so we could use a "veteran's" perspective on this issue, if there are any monitoring this thread!

I used Promacta for 3 years (until my insurance changed). It took 6 months at 75mg just to get my count above 40k. After one year, my highest count was 67k on 75mg. At that point we backed off to 50mg and I dropped to 45k. Stayed in the 45k to 55k range for the next two years on 50mg dosage. That is precisely the range GlaxoSmithKline designed Promacta to maintain.
Honestly, I am not sure why doctors are demanding counts over the 50k range with Promacta and Nplate. They are both 'maintenance' drugs, designed to keep one in the 50k range. It can be dangerous to use them otherwise and 50k is quite safe.

I do not recall having count fluctuations due to cold medications in the past 11 years.
But everyone is different.
Bear in mind that platelet counts fluctuate all the time. People with ITP only notice it because we get monitored.

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Luca:

I'm not sure why you are concerned with fluctuations. I think that is to be expected with ITP. A weekly fluctuation of, for example, 63k to 32k to 54k shouldn't really be cause for concern, as long as you are mostly in the safe zone. If you were going from 50k to 2k to 75k to 5k, it would be more concerning if the single digits kept occurring. Since the goal is to maintain counts around 50k, going 20k or so in either direction will probably happen and I'd consider that treatment a success, even if you did have an occasional drop below 20k. Yes, external factors may affect counts (colds, stress, OTC's), but I don't know of any way to avoid those things...they are part of life.

I don't know of any reason that cold medicines would be contraindicated with Promacta, but you should ask your doctor about it. Of course you'd want to avoid anything with salicylate (aspirin) in it.

From what I can see, I think you're doing quite well. Tell me, what is your expectation of Promacta? What sort of counts do you think you should be seeing? I'm worried that you're stressing over your counts and that just contributes to the problem.

Thanks for the input, Sandy. Actually, though, my comments were more addressed to others who seem to be (overly?) concerned that OTC meds, colds etc. are driving their numbers down on Promacta. I'm simply pointing out that I have not seem any studies or medical statements that say that taking anything with Promacta (be it OTC or Rx meds) has been recorded as a problem, especially with respect to driving counts down. Of course stress and a large number of things can affect platelet production, but I wouldn't want to avoid typical medical aids (like cold medicine) over an unproven fear that they might[u[ interfere with Promacta's efficacy. As for my goals on Promacta, it's too soon to tell, but as long as I'm in the 20's or above, I know I won't have symptoms, so I'm good with that. I'm amazed that people like Jack and Vdeutsch can get into the single digits and not have symptoms; I'm not capable of that, unfortunately or I would do what Jack does and live with just enough medication to get me out of the danger zone...

Luca,

I have my appointment with my dr tomorrow and will ask him about taking OTC cold medicine while on Promacta. I think it's hard to tell since everyone is different and we can't predict on how our bodies will react.

I like to say that my cold is like 95% gone. I'm dying to know what my count is for tomorrow.

BTW...I just got my 3 months supply of Promacta yesterday!!! So it's been 4.5 months since I've been Promacta. The results for my CBC will set the dictate how my appointment will go with my dr. Hopefully, I rebounced so that I don't have to worry about it until the next lab...

luca wrote: Thanks for the input, Sandy. Actually, though, my comments were more addressed to others who seem to be (overly?) concerned that OTC meds, colds etc. are driving their numbers down on Promacta. I'm simply pointing out that I have not seem any studies or medical statements that say that taking anything with Promacta (be it OTC or Rx meds) has been recorded as a problem, especially with respect to driving counts down.

Oh, must have missed something. I've been doing that a lot today!

As to the concerns:

I don't think there would be a problem with cold meds affecting Promata's efficacy per se, but there could be a problem with cold meds affecting ITP. Any medication can affect counts, but there is also a good possibility that it won't.

I did the same thing when I was first diagnosed. Stayed away from everything like it would give me the plague. I didn't take Advil or Motrin, was afraid of antibiotics, etc. Over time and through trial and error, I found out that I was being overly paranoid. I'd sail through a sinus infection with an antibiotic and no change in counts, only to have a drop months later for no apparent reason. I think the mind set changes over time through experiences, and you become calmer about it all. You find out that you can't control your counts with every move that you make so you start to go with the flow. You can be vigilant without making yourself crazy.

I'm hoping for good counts for you tomorrow slammed!

I know from being in Nplate at the beginning my counts never got above 27 at the beginning. The doc was afraid to up the dose. When I saw the specialist, he put me on highest dose possible. That's when my counts began bouncing between 60 and 250. It is normal for someone with ITP. However, the specialist has a theory about me. That if I have a consistent amount of Promacta in my system my counts may be a little more stable and I can have a consistent dose where as Nplate I was all over the place.

As for OTC meds I haven't done much experimenting with. I asked about taking Advil because Tylenol wasn't helping my achiness from Nplate and he said that was fine. I have also taken Zyrtec with no problem either. I do have that OTC fear a little too. Maybe you can ask your doc what you can and cannot take the next time you have a cold?

I had a very strange experience today. As you know, my doc was weening me from Nplate to Promacta. I began Promacta 12 days ago, but since I have been so refractory in past the specialist recommended that I get a half dose of Nplate last week as well until Promacta kicked in. Well today I was at 512. Way too high. I've never had this happen before. He said let's wait a week and see what happens with just Promacta. Only next week's CBC will tell if I need a lower dose. I'm currently on 50 mg. maybe his theory is right that I do better with a consistent level of meds in my body. We shall see. But he was thinking I would need to be on 75 if I reacted similarly to Nplate.

Luca,
My counts definitely dropped when I was sick. I didn't have complete crashes ( I've been down to 4 at times) but during a cold I was at 19 and I rebounded as soon as I got better. As for other external factors I'm not sure. It may be true that you technically need 35 or 40 mg if they could make that. At the conference, one doctor talked about listening to your fatigue. One person might feel fine at a count of 35 and another might be extremely fatigued at 57. How do you feel now versus when your counts are at 144? May be something to consider doseage wise.

I'm amazed that people like Jack and Vdeutsch can get into the single digits and not have symptoms; I'm not capable of that, unfortunately or I would do what Jack does and live with just enough medication to get me out of the danger zone...

Underlined paragraphs are infinitely difficult to read.
You asked who has used Promacta for awhile and of any fluctuations from OTC meds during that usage. I responded.
I don't recall saying that I had no symptoms with low counts. I do have symptoms. Over the years I have worked with my hematologist to learn what mine are, how dangerous mine are, how to live with them, and not to freak out over it all.
I do not "live with just enough medication to get me out of the danger zone" because it's fun or to prove something.
I use generic Cellcept only because it is inexpensive at a $10 a month co-pay and it keeps me above 10k........period.

My point was that many of us are out here living just fine with low counts. Life continues.


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Thanks to all for the replies. (Sorry about the underlines; I tried to underline "might" and got more than I bargained for!) I especially appreciate the "you get more comfortable over time" comments of those of you who have had this for awhile. Jack, when I wrongly stated you don't have symptoms at low counts, I was assuming this was true. As a "newbie" with a primary symptom of bruising at low counts, my greatest fear is that external bruising might be accompanied by internal bruising (ala possible organ or brain bleeding?) and THAT scares me. Hence the willingness to treat when I otherwise would pass and see what happens. At my lowest count to date (13K) I had bruises in two different areas and thus opted for treatment (Rituxan, which didn't work; Dex pulses to get me through my son's and nephews' weddings this summer; and now Promacta, which I started last month and costs a fortune!). In the past, I have been comfortable with 15k-19k counts, but my MD wasn't, and jumped up and down for "treatment" (which to him is the Splenectomy). We've been compromising since, but I would like to know if any of you with counts below 10K have bruising or bleeding issues, and whether your MD's ever indicated what kind of bleeding/bruising symptom can be "dangerous?"

Vdeutsch85,

Just got back from my dr's appointment, my count today is 66k! I'm happy that it went up now that I'm feeling much better from the cold. Stress level is lower...got the van and AC fixed. Now, if only I can get rid of work related stress....

So I found something new today...I've been taking iron at at 370mg per a day...I take this along with my women's multivitamins in the morning. I was severely anemic when I was diagnosed with ITP, but with the irons, my iron levels and red blood cells are back to normal. My dr tells me that even through I take my iron in the morning and Promacta at night, from his experience with his other patients, he notices a drop in count when taking any iron supplements and he wants me to stop taking them ASAP. He said that in a week or so, I will see a raise in my counts. Hmmm....we shall see with the next CBC in 2 weeks.

512 is not that bad...I was at 800k when I was taking 50mg of Promacta for 1.5 weeks. I'm sure after you stopped Nplate, you will be in the normal range.

Luca,

I did ask my dr about taking any OTC cold medicine and Promacta...his reply back is, he refers that I don't take any. But, if I feel like I'm can't tough it out, then give him a call and he will prescribe me something. You know I've been sick with the cold for over 3 weeks, but slowly getting better...and knowing me, I hate taking any additional meds, I shall not be calling him.

Luca,

I am very fortunate in the fact that I have never had any bleeding issues, even at a count of 4. My boyfriend gets bloody noses at least once a week and I have never had one. However, when my counts are below 10 I do get very fatigued. I start bruising probably in the 30's. Looking back on it I probably had itp way before I was diagnosed. I was always tired and bruised easily ( even my mosquito bites bruised). I blamed it on stress and genes ( my dad bruises easily but doesn't have itp. It took me literally having a bruise in the middle of my forehead to go to doctor!

Slammed,
Congrats on your great count today! That is like a perfect TPO count!! I'm glad your car and ac are fixed. I'm sorry about work. I know how that goes. I was so stressed with my job a few months ago that I would come home in tears everyday (it was basically because of issues involved with itp actually.... Like getting written up for missing days due to doctors appointments and me being put with violent kids even though my doctor had written a note saying not to do that for medical reasons....however things have improved since then) I'm hoping my counts normalize and Promacta can give me a little more of a " normal " life.

Jack,
Thank you for your consistent encouragement and positivity! I am worried because I now have Promacta covered by insurance but my company is switching in nov. It's frustrating because I think this drug is actually working.

Vdeutsch85,

I TRY not to let things at work stress me too bad. However, I work in a hospital, sometimes, dealing with demanding (crazy) doctors, their nurses, etc drive me up the wall. I am very blessed that I have great supervisors that very understanding..so I can take extended lunches for labs or dr's appointments.

I'm going to stop my iron supplements starting tomorrow and need to go out and buy B-12, B-6 (dr recommends this)...so until the next CBC, we shall see if it's really the iron that is causing my drop, or me being sick, or both, or either, or just my body trying to stabilize.

I hope your next insurance policy covers Promacta. I get my health insurance through my work, but just in case something happens...I also called up my husband's health insurance, and Promacta is covered, but I will have to pay more, but not much. One thing for sure, my health insurance keeps reminding that that my coverage can change anytime and it doesn't need to be the next enrollment period. I hate how they can do this to us when we need this so bad.

Slammed,

I was instructed to take b12's and folic acid. Maybe I should add in b6 as well? I'm not on iron but did not know there was an effect so thanks for sharing.i was on SSRI meds for 6 months when I went to specialist. He said those are worse than aspirin as far as thinning your blood. I would have stopped immediately if I would have known.

I talked to the Cleveland clinic nurse and she said they will do whatever they can to get my medicine at a reasonable cost when my insurance changes.

Maybe if it turns into an infection, maybe antibiotics?

Vdeutsch85,

Luca is paying about $100 per a 50mg Promacta pill! It should be a crime that we have to pay for so much for medication.

The only time I take antibotics is when I have a cough that takes forever to go away. Winter is coming up and I dread it. I never get the flu shot, just make the kids and the husband get them.

Luca,

I am sorry that you are paying so much for a pill! It should be a crime! The cost you have to go to stay safe these days!

Somewhat good news; I've been investigating the new health plans under Obamacare, and since they can't use your prior medical history/status to set rates, I will be able to sign up for a health care plan that DOES cover Promacta. It does seem the rates are generally higher than currently, but for people like us with expensive drug costs, the increased premiums will be more than offset by the savings in medication expenses. Unfortunately, these new plans do not start until 1/1/14 so there will be a 3 month lag before I can make the switch.

Luca,

That is good news! I have been trying to register on healthcare.gov for the past few weeks without success! I will keep trying!

I can't get on it either. I registered a username and password which didn't work when I tried to login. Then I asked to have my password e-mailed to me and it said I didn't have an account. So I tried to create another account and it told me I already had one with that e-mail address. I'm starting to think it's not worth the hassle.

There was a spot on the radio this week about this and the person being interviewed said to wait several weeks before trying it again. The system got overwhelmed because many more people went on than what was expected.

Ha, that doesn't surprise me. Of course there will be more than they anticipated. People are getting policies cancelled left and right. I'm one of the people who got a letter from my insurance company that my insurance is cancelled as of 12-31. Waiting makes me nervous. I'm not sure whether I should get insurance from my current insurance company or try for the government insurance. Is it only low income that can get it through the Marketplace?

No, it is not for low income. It is supposed to be like what we have in MA where you can go and compare different private health insurance options. Today the Boston Globe had a big article about the problems with the health care portal...sounds like kind of a mess. The article said that the system was 70percent running but could take 2weeks or longer to get up and running. There is supposed to be a mid December sign up deadline for coverage that starts jan 1.

For low income people can still apply through each state system for Medicaid.

Dru,

Thanks for the info. I am signed up with my company since open enrollment ends tomorrow. We are switching to united in November. However, open enrollment for healthcare.gov is open until march and will not start until January anyway. I would like to eventually figure out if it would be worth it for me (since Promacta is so expensive but not sure what it will be with United. I'm glad that Luca said it will be covered under one of the healthcare.gov plans. How have you been? How is your school year going?

Vdeutsch85,

My husband has United HealthCare. I went to his online account and priced out Promacta. The co-pay is $35 per a month. Hopefully, this will be the same for you too.

Hi Valerie

I've been okay, after having to sit out first 2weeks of school am glad to be back. I'm on 10mg prednisone and have some side effects, insomnia, mood swings etc, kind of one day at a time right now. I do fine with my students but have been feeling a little bit of roid rage during long Team meetings

Yes, promacta should be covered by the new healthcare plans, all of them have to have prescription coverage. Then it is not a co-pay but you have to pay a percentage of the cost depending on the level of insurance you buy.

At work human resources gave us a 12 page letter re the new insurance plans. I read it all but it is very confusing!

Dru,

You crack me up! I often feel the same way. I work with a great team now, but I have felt roid rage in the past during team meetings and wasn't on roids lol! Thank you for sharing the info! I would assume I would need the highest level of coverage, but I'm okay with that since Promacta is so costly . I was able to get on healthcare.gov at work today but need to finish my application ( those kiddos were in needy mode today). It does seem confusing but hopefully we will understand it better in the months to come. There is some tool kit on pdsa now that I will check out.

Slammed,
Hopefully I'm on a similar plan to your husband's with United. $35 would be great. However, I would be okay with paying a little more, if it means bi-weekly or monthly appointments rather than weekly and be able to travel for more than 7 days. I have been feeling more like the old Valerie the past few weeks (even went on a hike today) and would like it to continue!