Well next week will be my first week without having to go to the doctor weekly since December! I don't know what I'm gonna do with myself....shop, work out, jump up and down, throw confetti everywhere...any other suggestions? The nurses at the clinic said I probably won't even remember what they look like in 2 weeks.
My counts were 258 today. However, because of my personal history of being all over the place, he's going to keep me on this dose for the next two weeks and then possibly lower it since I'm way above the "50" mark right now. Actually the doctor said I deserved a break for a week as well.
I'm just very grateful to have a drugs that works, because I know others on here that nothing works for. If this continues to work, it will greatly improve my quality of life I feel. And with all of the prescription drug news I am hopeful that I can stay on it!
How are you all? Hope you are well!
As always thank you for your continued support!
Congrats! Are you still on NPlate? It's an awesome feeling when the lab results are great!!! I usually treat myself with a slice of cake... I'm always tempted for a "girly" drink, but still saying no to alcohol.
I had my last 1/2 dose of Nplate 2 weeks ago so it's def the Promacta working!
I was being a little crazy last fri night and had 1 glass of wine after not having any alcohol since diagnosis, but figured hey my counts are good and its fri night. It was a big mistake. It felt like my heart was beating out of my chest and could not fall asleep until 1 am. I doubt it was a Promacta interaction but it did not feel good. I would not recommend it!
I will def have a slice of cake. That sounds better! Maybe I will go to the bakery rather than the doctor! Or maybe workout and then go to bakery!
Yes, I too believe it's Promacta that's working for you! Hopefully, you can drop to 25mg and be in the safe zone.
My next CBC and liver test is next Thursday. It will mark the 5th month since I've been on Promacta. Liver so far is doing fine, hopefully, this will continue.
Hehe...yea, it's a good idea on working out first, then eating a slice of cake. Make sure it's a GOOD slice of cake. I just bought a HUGE chocolate cake from Costco...and it's super moist and chocolatey.
I hope your counts are good as well! I have issues with Costco....as in I'm obsessed with it and live 2 minutes away. I always go in there and think everything is such a good deal and end up spending far too much and buying things not on list. Chocolate cake does sound good. I don't know if they"ll have it yet, but they make pumpkin cheesecake so good. Also I saw a cannoli cake there that looked good as well. You really can't go wrong there. I've heard the red velvet one is good but I'm not really a red velvet fan in general.
Maybe I will be able to drop to 25. I m going to call my specialty tomorrow. I think he will be surprised. He thought I would need 75. He is 4 hours away but my main doc.who is in expert in this field and treats me like an educated woman.
I have a regular hema as well....not the sharpest tool in shed. Really doesn't understand itp...said he hasn't sen Promacta work for
anyone. Well I disproved that theory today. Is it bad that everything I go against him and succeed that I want to say told you so.
Keep me updated with counts. Are they tomorrow or next Thursday?
My labs are next Thursday, not tomorrow. I get a week's break from labs!!! Yea baby!
I live about 15 minutes from 2, yes, 2 Costco's! I am there twice a week. I love their apple, peach, and pumpkin pies. I also, love their caramel tres leches and tiramisu cake. Can you tell I'm a big dessert person??? I like to reward myself often especially since I'm a workout freak. I do about 11 miles everyday.
I have no issues telling my hema how I feel. He's a fairly young dr, around early 40's from Buenos Aires. He cracks me up with our culture differences. I like that he's willing to listen and compromise. My word of advise, I will maybe stay at 50mg for another week, do a CBC, then if the numbers are higher or around the same, reduce to 25mg...you kinda want to give your body time to adjust to Promacta and not make rapid changes, then crash.
Vdeutsch: Let me emphasize what Slammed is saying about not cutting your Promacta dose too quickly. I was at 144K on 50 mg. and cut it myself to 25 mg. only to find my counts dropped to 29K over the next 2 weeks! I'm back on 50 mg. and slowly climbing; now at 58K after one week. Saw my MD and he thinks we may end up at 37.5 mg. but we obviously need to go a little slower on the titration than I was expecting.
Also, to all of the comments about alcohol and Promacta/ITP, I haven't found any medical indications that there is an interaction or problem here (other than the usual "don't overdo it" warnings). I am a winemaker and occasional wine judge and regularly drink wine. I discontinued all alcohol for a couple of months when first diagnosed, but no changes were observed. I also love chocolate cake, and I would hate to think anyone would give up either (i.e. chocolate cake or wine) based on unfounded fears that there might be a connection with ITP! As Jack so wisely puts it, we have to "get on with life" despite our ITP.
"Also, to all of the comments about alcohol and Promacta/ITP, I haven't found any medical indications that there is an interaction or problem here (other than the usual "don't overdo it" warnings).(SNIP for brevity's sake)
As Jack so wisely puts it, we have to "get on with life" despite our ITP."
But Jack is kind of crazy........and he has been known to toast ITP in blatant defiance (a finger gesture is invoked also).
Long ago I discussed it with my hematologist. Then we looked at my numbers over a few months of not drinking any alcohol and saw no real difference. We looked at it all again during the 3 years I used Promacta also...again nothing.
NOTE: As always, work with your hematologist to discover your own safety boundaries.
I like good beer. Usually something in the form of a double-IPA, mead, etc...and usually 9%-15% ABV. I don't drink a case a day, but I will have one or two 12oz snifters of beer with dinner. Probably equal to a six-pack of BudLite or PBR though.
BTW: Snifters enhance the taste of certain beers....good 2xIPAs need the nose involved. . BudLite does not
And for most of my ITP adventure, I've had a third job (in addition to my engineering job and my online business) of singing/banging-on-guitar in crappy biker bars. I drink one beer per set and sweat out two. And yes Virginia, my microphone stand has a beer bottle holder on it. Can't perform without that!
The bottom line is that over the past 11 years I have seen no fluctuation in my own platelet count due to alcohol.
But as always; everyone is different.
Glad to hear that you're count is slowly going up again after the drop. Hopefully, you will find what is the lowest dosage you can take and be in the safe zone.
As far as alcohol, from my experience, it does lower my count..but not as much as barley tea. I know it might be weird...but I noticed that if I drink barley tea (Korean restuarant serves this) for about 3-4 days in row, my count will crash like more than 40k...the first time I thought it was a coincidence...I rebounce afterwards, then months later, had barley tea for a couple of days again, had labs, crashed again when I have been stable for months. So now, I'm also staying away from barley tea...it's supposed to be good for you too...so what a bummer...but lesson learned.
Dnblank; Thanks for the input. Have you had any side effects at all??!! Some of us newbies have MD's who are apparently "newbies" to Promacta also, as my Hematologist still tells me that the Splenectomy is still my only long term choice. People like you have demonstrated that this is not true, and, if you've had no symptoms on Promacta, then it can be safe for long term treatment. Do you agree with this deduction?
Luca, No side effects at all from Promacta. I went to a symposium put on by PDSA in Houston a few years ago and one of the MD's made a comment that there are factors that affect the splenectomy from actually working on a patient. He said age of patient and length of diagnosis makes a difference. I also read a study from the UK that stated that the procedure does not have a great response rate on older patients. There are too many effective drugs out there that you live a great quality of life. I didn't want to take a chance to have my spleen removed on an almost 50-50 chance. Just my opinion, I'm not a doctor. I've have ITP for about 10 years and I can tell you since I take Promacta I don't worry at all. My quality of life is wonderful and stress-free regarding ITP. Do research and read up on everything so that you can speak to your doctor with knowledge about your condition. My hematologist has always appreciated my knowledge and input.
I posted in the other forum as well. Slammed, Luca and I are new to Promacta so you sharing your experience with us is very helpful. I am 28, but the thought of permanent immunosupression from splenectomy scares me to death since I am a teacher and am typically healthy. I would like to have a child possibly someday and for that splenectomy might be a good option since you can't be on TPO's during pregnancy and I don't respond to steroids. I think adoption may be a good choice, since even for a 28 year old to me the statistics of splenectomy aren't that appealing. If there was a 95% success rate I would have mine out tomorrow.
As I stated on other forum I started Promacta 3 weeks ago and my count was 258 last week. The doc may lower my dose, but he thinks I need a one week break away from him since I've been there at least once a week since Dec. I responded well to Nplate as well but was all over the place count wise and tired of weekly appointments. His theory is that since Promacta is consistently in my system my counts may stay more stable.
I was excited to hear that it's improved your quality of life. I already feel a little more hopeful. I might be able to eventually only have to go to doc once a month. That seems much more doable. I would love to travel and not worry about having to come home for a weekly shot.
I am so happy that I can help you. Don't ever think that your life is not going to improve. You are young and a splenectomy is more successful in younger people. I'm 63 and have had ITP for 10 years. I also am a teacher. I retired after 38 years in the public school system here and now teach twice a week at a local college. I am a Christian and have strong faith and have never stopped praying for my health. I always believe that I am being healed! Promacta sure does make you feel that way! I was at a point before Promacta that I was having blood tests once a week. I was in the hospital once with an IVIG. I have always responded to everything that I was given. The splenectomy is a personal choice that you have to make up your own mind. Become an expert on all research on ITP and join hematology sites that publish the newest information on platelets and ITP. I became so knowledgeable that I was able to make my own decisions and did not worry about it. I knew that it was the best thing for me. I also pray alot! I believe that God answers the call of his children. That has been proven in my case many times. I don't want to sound "preachy" but I want to explain to you how I have been able to make decisions and feel good about it. I have a daughter about your age and I would tell her the same thing. I would like to help you anyway that I can. Just message me.
That's great that you taught for so long! Thank you for your advice on joining all of the hematology websites. That is one thing I have not done. I read everything posted on this site. Because of this, my first hematologist wanted my spleen out in march but I knew too much about other options so I ended up seeing a specialist at Cleveland Clinic. I was a frantic stressed out mess because I was so tired of my doctor not "hearing" me and just demanding my spleen out is the only solution. When I went to Cleveland clinic though, the doctor respected me. He even said he thought it was great that I was so up on research. He said I'm not sure what will work but let's try some things. He also assured me that all of my achiness and fatigue were part of this illness which the first hematologist said had nothing to do with ( I was convincing myself I must have something else). Well he ended up putting me on a high dose of Nplate in which I responded to within a few weeks. Life with itp has been much better when you know someone understands the disease and how to treat it. When I went back in sept he recommended Promacta since it would mean less time at doctors.
This year has been full of ups and downs. However, many on here say the first year is the hardest emotionally. I think I am at the point where I understand the disease and know that I'm not going to just suddenly bleed to death spontaneously. The fear is gone. I'm going to continue to research since there is always new into out there. I also went to the pdsa conference in dc, where I learned a lot and met others with itp which was great to learn I wasn't alone.
I think at the end of the day I was given this disorder for a reason, probably to be a stronger person and I will continue to strive to live the best life I can!
Wow, you sound like you are really up on all the latest and great at researching. Just what I would expect from a teacher! Excellent! About 2 or so years into my ITP I decided to check out another hematologist. I went to a well-respected dr. in Houston and ended up running to get out of there. He was so old-school and his ideas were the only ones that he would follow. He made sure that it was the only way he would take me as a patient. That's when I realized that my young hematologist was great because she listened to me and always asked what I thought, never tried to force me. I've been happy with her ever since! I hope that you get stablized with Promacta. I will pray for you tonight and hope that you get rest knowing that tomorrow is another beautiful day!
Don't know where you live but she is at the new North Cypress Hospital on 290 at Huffmeister. Her name is Veena Chandrakar. She is up with all the newest in treatment. She doesn't push and listens to you. I've been going to her the whole time for the past 8-9 years. I referred my friend who is a dentist about my age. He was diagnosed with ITP also. He likes her too. She's in her 40's so hopefully will be in practice for a while!
I have Aetna (for retired TX teachers). We use Medco/Express Scripts and Accredo. I finally got my prescription for 3 months at a time. It's cheaper and you only have to deal with the red tape every three months.
I too use Medco/Express Scripts and Accredo. I have my dr writes a prescription for 3 months supply with 3 refills. Medco approved the prescription for one year. I'm still getting used to the the refill process. Yes, the 3 months supply is slightly cheaper than the monthly, but it saves the process of doing a refill each month.
I will look Dr. Veena Chandrakar. I currently go to Dr. Jorge Darcourt at Methodist in Sugar Land. I live in Richmond, TX, and he's close to my house where I don't need to miss any work for labs and for dr's appointments. Do you know if Dr. Chandrakar have another office location? Dr. Darcourt doesn't believe Promacta is safe for long-term use. He only wants me to use it for a max 2 or so years...I figured I cross that road when I get there.
Dmblank; thanks for all the interesting info! My only other question is how many years have you actually been on Promacta (I thought it has only been out for 3 years)? My Hemo has been telling me that it is not a "long term" solution, in his opinion. Given the recency of the medication's release, he could be right, but of course I haven't seen any data that supports his position.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2339
Why does it have to be a long term solution? And why can't it be a long term solution? I think it's a great solution for buying time. Time for what, you might ask? Time for another solution to come along. Time for a remission to occur. Time not living with unsafe counts.
Many people using Promacta have been able to resume normal lives for a seemingly infinite period of time. Wouldn't that make it worth it? Until someone comes along and proves that it isn't safe long-term, we can only assume that it is. Right now, there are black box warnings on Win-Rho, Rituxan and IVIG, yet those are being used all the time and are also not long-term solutions. No black box warnings for Promacta that I know of. Yet. Also, no other long-term solutions for ITP that I know of. Yet.
Sorry, but that kind of doctor thinking boggles my mind.
I think it's not knowing what is the long term side effects that is scaring my hema. He is extremely worried about my liver. I on the other hand is willing to gamble with Promacta in hope of giving me time in hope for another solution to come...like artificial platelets...
Read this old post of mine....."really would like to keep up this message with periodic updates. I hope that I can help someone else who is thinking about this. Today, 2/25/10, I am at 31,000. I'll try to give updates whenever I can." So your answer is I've been on Promacta for 3 1/2 years. I have my liver checked every month and I'm fine. I did extensive research on Promacta before I asked to be on it. As you know, there is no sure thing in life. Sometimes you have to take a leap of faith.
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