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TOPIC: Counts with Promacta

Counts with Promacta 5 years 7 months ago #38543

  • Slammed
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Sandi,

Thanks for the links. Maybe that would explain why there's such an increase in my count. I found it really strange that on Friday, I was at 22k, then on Tuesday, I was at 53k. I had 2 or 3 slices of grapefruit on Sat night, and Sunday morning. I was at Costco on Saturday morning, and for some reason, was craving red grapefruit, so I bought a bag of it. Makes one wonder...I think I'm going to eat like 2 or 3 slices of grapefruit a day then see what happens for my next CBC's....which is 1 month away. Or do you think this is not a good idea?

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Counts with Promacta 5 years 7 months ago #38546

  • Sandi
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I honestly don't know. Grapefruit can make some medications toxic by changing the way it is absorbed by the body, or it can increase the effectiveness of the drug (double to quadruple the dose). Promacta may be too new to be on the list of meds that grapefruit can affect. People have died or had permanent damage due to eating or drinking grapefruit while taking certain medications. I doubt that would happen with Promacta; this mostly occurs with antibiotics, heart meds, etc., but you don't know for sure.

It's also possible that grapefruit has nothing to do with your count increase.

You should probably ask your doctor (although he may not know for sure). If you do eat it, do so in moderation.

This is interesting. I first became aware of this problem when I was diagnosed with ITP. I bought a book called Bitter Pills . It was written by a man whose wife ate grapefruit one morning while taking an antibiotic for a mild UTI. The antibiotic was Floxin. Anyway, she took one pill and began to have visual disturbances, loss of balance, and delirium. It never got better. The book goes into detail about medications and how serious side effects can be. Very interesting book!

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Counts with Promacta 5 years 7 months ago #38551

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Interesting issue...here's another link which explains it better I think:

www.globalrph.com/gfruit.htm

As I understand it, the grapefruit juice reduces the efficacy of a key enzyme in the stomach which typically "digests" chemical compounds, including medications. Once this enzyme's efficacy is reduced, you can get much more of the drug in your blood serum than usual, resulting in greater efficacy--and risk--of the drug's positive and negative effects. In your case Slammed, the use of grapefruit may have allowed your blood level of Promacta to increase beyond your typical 12.5 mg dosage; hence the increased count. I would run this past your MD as the biggest issue I could see is the difficulty of predicting or controlling the effect, and thus an even greater potential of variation in your counts (e.g. if your grapefruit effect were somehow reduced by something else you ate, then your Promacta level could drop and cause a consequent drop in your counts...gets complicated, doesn't it!!!)

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Counts with Promacta 5 years 7 months ago #38553

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There's only one flaw in your thinking.. the manufacturers have said that Promacta is not affected by grapefruit!

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Counts with Promacta 5 years 7 months ago #38556

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I find this topic very interesting. Well, I'm going to see what happens for my next lab...I will be checking my liver too.

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Counts with Promacta 5 years 7 months ago #38562

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Good find, Ann. I wasn't sure if grapefruit affected it or not.

Well, Slammed, looks like your counts did it on their own!

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Counts with Promacta 5 years 7 months ago #38565

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Yay for good counts! I'm pretty convinced stress and illness are the main culprits of lowering counts. Now if we could just get rid of those two things we would be golden!

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Counts with Promacta 5 years 7 months ago #38568

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Well, Sandi, that means that my counts are very much linked to my stress level. Now, if only I can ship the kids off for the next 12 years or so... :P

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Counts with Promacta 5 years 7 months ago #38575

  • Sandi
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Good luck with that! My kids and job were the main reason I decided to stop doing Prednisone after five or six times. Since I couldn't get rid of the kids or the job, I had to get rid of the steroids. One of them had to go!

I've always believed that stress could affect counts, but never thought it would be an instant thing that affected counts on a week to week basis. I don't see how that is possible, but it's interesting to follow you and see how it goes. I found that stress affected my counts overall at times, but it was never drastic and sometimes when stress levels were high, my counts were just fine. They would also drop when I had little stress going on, so there was no rhyme or reason.

How is your daughter doing?

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Counts with Promacta 5 years 7 months ago #38587

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Daughter is doing SO much better. I don't know if it's the counseling or if it's almost Christmas. She's worried that Santa is not going to bring her gifts because she's been "bad". So, stress level is pretty low for me now. I'm enjoying it while it lasts or until my in-laws comes to stay with us for a week and the kids are home for 3 weeks!!!

I don't know why my stress level is so strongly related to my count. And when I'm sick too. I have a journal, and this is a fact in my case. I don't care what my hema says...he says it's not good for the body, but it shouldn't affect my count. Well, I think that's BS!

I do not miss Prednisone at all! However, I'm on it, my skin is really nice. My husband says it glows...but when I'm off, I get pimples...I NEVER get pimples even when I was a teen...and then the hair loss afterwards. I've been Prednisone free since May...I never have take them again. :)

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Counts with Promacta 5 years 7 months ago #38589

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That's weird, most people get pimples while on Prednisone. Hair loss is common though.

I'm glad your daughter is doing better, but poor kid! All worried that Santa won't come! I hope she gets something special, and her Mom too for having a rough year!

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Counts with Promacta 5 years 6 months ago #38758

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Having read all these posts in this section I got to know that promacta work for all. But in my wife's case it dies not seems to be working like others.
When she was diagnosed first time in May'13 it worked for her like magic just 7 tablets of 50mg promacta kept her count high up to 198k for 5 months.
But from last two months she is continousely taking this but count are not going even to 10k and don't think if there is any use of taking this any more but not sure why doctor want her to keep on taking this pill, even no use of increased dose of 75 mg. As per today's CBC her count is 6k with mouth full of blisters.
Looking at the cost of promacta it is very difficult to afford this and specially when there are no positive results.
She is also taking 40 mg predniaolone, now thinking to stop promacta.
She is scheduled for splenectomy on 11th January'14, hope that will help

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Counts with Promacta 5 years 6 months ago #38759

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Yogesh,

Your wife only took a week's worth of Promacta and then stopped? And it kept her numbers for 5 months?! Was she also on steriods during this period?

I agree, if Promacta is not working, there is no point keeping to take it. It's expensive and you don't want the unneeded chances of liver damage when there is nothing to gain.

Has she tried NPlate? I'm still fighting for my spleen. I'm going to talk to my hema in my next dr's appointment about the scan in London. I want to keep my options open.

I hope your wife gets better.

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Counts with Promacta 5 years 6 months ago #38763

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Yogesh; I'm sorry to hear about your wife's situation; those of us newly on Promacta have the same concern. I've been on Promacta since September and my counts have varied from a high of 144K (after 2 weeks) to a low of 39K (on 50 mg.) I am now on the max dose of 75mg and my numbers have been around 65K (for 2 weeks), but like your wife, I'm concerned that the numbers seem to be dropping no matter what the dosage. But I agree with Sandy, you should consider the Nplate injections to see if they might prove more effective in your wife's situation, as I have been advised that the Promacta and Nplate are equally safe treatment options.Also, while my numbers were higher, I took advantage of the opportunity to have the Indium screening test in London, so that if the drugs are no longer effective, I would be in a better position to decide on the splenectomy.(The test indicated that my platelets are indeed being destroyed in my spleen). Still, I will try to exhaust all of the medication options before I have the surgery.

By the way, you asked why your MD is keeping your wife on Promacta when it is ineffective; one possible reason is that there can be a drastic reduction in platelet count when the drug is discontinued (6K is still better than 0). It is probably wise to keep some level of Promacta going until an alternative is found to be working...just my opinion.

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Counts with Promacta 5 years 6 months ago #38764

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She was taking prednisolone 50 mg. with promacta which was then reduced weekly with 10 mg per week and then stopped after 5 mg on alternate day for 10 days in Aug'13.
With 7 tablet of promacta (in India it comes in strip of 7 tablet, that cosy INR 13500/-) her count reached to 460k then doctor asked her to stop this and within a week count reduced to 140k but then started to increase and we were happy thinking it was one off issue that has been resolved, did not have idea how serious it can become.
From Sep'13 to Oct'13 she did not take Any medicine and her count kept increasing in every 15 day CBC and in mid of Oct'13 count was 198k then by end of October she noticed some red spots on her hand and lower legs at that time count was 3k. We were shoked but were in relief by thinking it will be same with ptomacta and life will become smooth again. But it didn't worked this time.
Its been 2.5 month and still struggling with this problem.

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Counts with Promacta 5 years 6 months ago #38765

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It seems to me Yogesh that your wife may be rushing into surgery when there may still be other options to consider. Try reading some of the posts on this site about the various options that people have tried over the past few years; it seems that everyone needs to find what works best for them. For example, you mentioned how effective Promacta was after just 7 tablets, but it looks like you are giving up awfully early on the medication approach. Again, Nplate may buy you both some time while you figure out what is best to do if a steady regimen of Promacta doesn't work. Having a splenectomy is no guarantee that this will cure your wife's problems (that's why some of us have taken the Indium screening test), and then you may be back in the same situation as now if it doesn't work. Have you found a good specialist in ITP or are you dealing with a doctor who is not familiar with this disease? Many people have reported on this site--including me--that many Hematologists are simply unfamiliar with the treatment options for ITP and tend to push surgery as the only solution. If you need some guidance in this area, please ask the readers on this site as they are located all over the US (and some overseas as well).I was scheduled for a splenectomy in November but contacted a specialist in Columbus Ohio who convinced me that I was rushing things; I needed to learn more about the options and try some conservative approaches. Good luck and let us know if and how we can help!
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Counts with Promacta 5 years 6 months ago #38766

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She was taking prednisolone 50 mg. with promacta which was then reduced weekly with 10 mg per week and then stopped after 5 mg on alternate day for 10 days in Aug'13.
With 7 tablet of promacta (in India it comes in strip of 7 tablet, that cost INR 13500/-) her count reached to 460k then doctor asked her to stop this and within a week count reduced to 140k but then started to increase and we were happy thinking it was one off issue that has been resolved, did not have idea how serious it can become.
From Sep'13 to Oct'13 she did not take Any medicine and her count kept increasing in every 15 day CBC and in mid of Oct'13 count was 198k then by end of October she noticed some red spots on her hand and lower legs at that time count was 3k. We were shoked but were in relief by thinking it will be same with ptomacta and life will become smooth again. But it didn't worked this time.
Its been 2.5 month and still struggling with this problem.

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Counts with Promacta 5 years 6 months ago #38767

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Apart from Promacta, she has already tried 4 standard infusion of Rituximab and this is the 6th week since she had the first infusion on 18th Nov'13. But there is no positive effect of Rituxi so far.

I am not sure about Nplate as we met several hematologist in India but no one suggested Nplate the only option we got were- Prednisolone, Dapsone, Anti-D, IVIG, Promacta/Revolade & Splenectomyy.

Prednisolone, Dapsone and Rituxi we already tried, Anti-D and IVIG are very short period and temporary.

Left with Splenectomy.....

Yogesh

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Counts with Promacta 5 years 6 months ago #38768

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Yogesh; it is important to consider all options before surgery. You should read some of the professional articles on management of ITP (see Provan, Stasi, Newland et. al. International consensus report on management of ITP, in Bloodjournal.hematology/library.org)to make sure you've covered all the bases.

It seems to me that 7-8 months is a very short time to be dealing with ITP. Has your wife been screened for an H. Pylori infection, which can cause ITP symptoms? Have you looked into likely allergens or dietary factors that may have initiated the autoimmune response? These are more common with children with ITP, but should be investigated before rushing to surgery. Also, I don't know where you live, but Nplate ( drug name is Romiplostim) is widely available and has been used for ITP treatment for about 5 years. Given that your wife has had such large fluctuations in her counts in a relatively short period of time, it would seem that an external allergen/irritant/chemicals could be triggering her erratic responses. By contrast, some of us--like me--have had a slow steady decline in platelet counts over 2 years, which underscores the likely platelet destruction as an internal and chronic automimmune process. Your wife, on the other hand, has had peaks and troughs over only a few months with and without medications, which makes me think that there is something that she is reacting to in her environment (hence diet, H. pylori, new medications that she had been taking etc.). All of these later examples have been known to cause temporary bouts of Itp that may not necessarily progress to the full blown disease. I know it is scary for her to be dealing with blisters and bleeding, but the more time you give yourselves to investigate your particular case, the more likely you'll find a liveable solution.
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Counts with Promacta 5 years 6 months ago #38771

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I agree with Luca...your wife should try all treatments before giving up her spleen. nPlate is definitely worth trying out.

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Counts with Promacta 5 years 6 months ago #38777

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On the same note Nplate tends to be effective in 87% of patients where as 76% in promacta
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Counts with Promacta 5 years 6 months ago #39322

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32k today down from 82k last week and still on Promacta 75mg. I was on 10mg of Pred when I had my last count done and done with pred. I had a sinus infection going on that is why I was on pred.
diagnosed 4/12

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