That must be nice...I have gained about 3 pounds since starting Promacta in May. I'm keeping my same eating/exercising routine. I gained a bit of weight with the lovely Prednisone, managed to lose all of it before starting Promacta.
I went to see my specialist on Monday at Cleveland Clinic. He ok'd me for Promacta. My co-pay is $150 and I am getting it shipped through a specialty pharmacy called Diplomat out of Michigan. I found out my insurance will be changing as of Nov 1. At least I can try it for 2 months at this cost ( expensive, but worth it if it works for me). It is being delivered tomorrow.
I am starting at 50 mg. Because of my history of being very refractory the specialist had me get Nplate today, start Promacta later in week and get a half dose if Nplate next week to ensure I do not crash if Promacta hasn't completely kicked in or does not work. He will adjust dose accordingly, but seemed to feel that I will need the 75 mg. he could not provide specific data but said that some people respond to Nplate but not Promacta. Either way at least I know Nplate works if Promacta doesn't. It would be nice to only go monthly to doctor rather than weekly and go on trips longer than 6 days, but we will see what happens!
I hope Promacta works for you. I saw results within the first week being on it. I have labs tomorrow, I get labs done about every 2-3 weeks and see my dr every 2 months now instead of bi-weekly/monthly . I can't believe it's already been 4 months since I started Promacta.
Is $150 for a month's supply? As I found out from Medco, my insurance coverage can change anytime. It did after the first month I was on Promacta...when I try to get my refill. Medco reject the refill request and stated that I need a preauthorization when I didn't have to before. I just requested my first refill since this incident and the speciality pharmacy, Accredo, is waiting until the last minute...I will be out of Promacta on 10/11, but they refused to process the order until 10/8...then overnight it to me...which I think it's cutting it quite close to my comfort. I just don't understand why they can't ship it sooner.
Good news update; after starting Promacta 3 weeks ago, my counts have gone up weekly, starting with a baseline of 15k before Promacta. Then 27 k, 103K and 144K this week! I'm planning to drop to 25 mg. this week to get down around 70K as this is the recommendation of GSK (i.e. 50K is the target for long term maintenance). Next test is to check that liver enzymes are WNL...fingers crossed.!
luca wrote: Good news update; after starting Promacta 3 weeks ago, my counts have gone up weekly, starting with a baseline of 15k before Promacta. Then 27 k, 103K and 144K this week! I'm planning to drop to 25 mg. this week to get down around 70K as this is the recommendation of GSK (i.e. 50K is the target for long term maintenance). Next test is to check that liver enzymes are WNL...fingers crossed.!
Had my CBC and liver enzyme labs today...liver is doing good. But, platelets dropped quite a bit from 3 weeks ago...I don't know what's going on with my body. I was hoping for the numbers to stabilize by now. I've been Promacta for 4 months now. I know 60k is still a great number, so I will be positive! Now, the nurse is paging my dr...waiting to get a call back.
I think 50 is what Promacta is supposed to achieve, so I think 60 is perfect! It will be interesting to see what your doc says! I'm going to start it tomorrow. My shipment arrived today. It is scary that they can't ship yours sooner. The pharmacy said they can ship mine 5 days out. I do think I need prior authorization on mine so we shall see how it all goes. All I know is because I know Nplate does work for me, I will not be anxious or freaking out like I was with prior treatments such as rituxan.
Just curious, how low did your counts go before Promacta?
Before I started Promacta, I had ITP since 3/2011. I was treated with Prednisone, Dex, and 4 rounds of Rituxan (16 infusions). Before I started Promacta, I crashed while I was in the 2nd week of my Rituxans, with a count of 5k. So, I was put back on 60mg of Prednisone and completed the last 2 Ritixan infusions. I was tapered off Prednisone to see if the last go of Rituxan worked or not...and it didn't. So, back to 60mg of Prednisone, while my count went up to 40k (usually with Prednisone, my highest count is around 115k), I started on Promacta at 50mg. While taking Promacta, I tapered off Prednisone (which was a week later). My dr knows I hate Prednisone...so I wasn't on Prednisone and Promacta for a long time. 5k is the lowest count I ever had...
I got a cold about 2 days ago...for me, I'm unable to tell it bought my count down or maybe stress from work. I'm starting to see how stress causes my count to crash when looking back at my journal.
russp wrote: What are the long-term side effects of Promacta? If it works for you and you tolerate it ok it is something you are able to take for many years?
We don't really know what the long term effects are from Promacta since it's a "fairly" new med. Right now, my dr is mainly worried about my liver and maybe me getting some kind of blood cancer in the future.
Unfortunately with these treatments we have to think risk vs reward. Risk is falling banging my head having a brain gem mirage. I personally would be on the drug with possible Sid effects that keeps me safe.
Vdeutsch85 wrote: Unfortunately with these treatments we have to think risk vs reward. Risk is falling banging my head having a brain gem mirage. I personally would be on the drug with possible Sid effects that keeps me safe.
I second your opinion, plus, I'm not giving up my spleen without a good war!
I second that....I'm not getting my spleen out either without a fight. What scares me is if it doesn't work and I live on immunosupressants the rest of my life plus the immunosupression from the spleen. Plus you know when you have that gut instinct about something, I have the gut instinct it will not be successful for me. However, I may decide to have a baby in the next few years, so I may try it since you can't be on Promacta or Nplate, but we shall see. One day at a time. Tonight I will begin Promacta.
I rather be on immunosupressants, then taking out my spleen. I have lots of doubts in my mind that the spleen route will not work. Why take out the spleen when I still have options like Promacta and NPlate?
Before I went on Promacta, my dr did a pregnancy test even when I told him there's no way I'm pregnant. He wanted it confirmed...while I was on it, he again told me NOT to get pregnant. I'm so glad that my husband and I are done having babies (even though I'm sad that option is gone) since I sometimes want one more baby.
Good luck with Promacta. Hopefully you will be like Luca where you don't have any side effects. Keep us posted.
I agree with you about rather being on immunosupressants. Great minds think alike. I asked my specialist why doctors are so reluctant to put people on them especially after hearing what the panel at the conference said about them. He told me that he sees them as having less risks than steroids.
Actually one of the doctors on panel said that Immuran is safe during pregnancy so maybe that's something to consider eventually if it is effective for me.
I love my specialist and loved the pdsa panel but it shocks and amazes me about what my regular doctor does not know and what other doctors have told people on here. I wish they could just consult an expert or start reading if they have a patient with this. It's very frustrating.
On a better note I'm about to take my 2nd dose of Promacta....so far so good.... No side effects as of yet. It will take a few weeks to know if it's working because I had Nplate wed and will have a 1/2 dose this week.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
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I am trying to take Imuran. It's not easy. I'm supposed to be on 150 mg's, but can only tolerate 50 mg's. I've been on it for months now and can't get to a therapeutic dose. Ann had the same problem at 50 mg's and had to quit. It really makes you feel sick and it's not even helping me at this point. It can also cause liver damage and blood work is needed monthly.
I honestly don't know why it's considered to be safe. I have damage from years of Prednisone, but at least I knew what to expect. Imuran has some scary side effects and is pretty potent and toxic as far as I'm concerned. I really did not want to take it, but it will be the last toxic drug I ever try unless I'm going to die (cancer, nephritis) without one. I've tried way too many and all they have done is cause more problems and did not help the problems that they were prescribed for.
I've been on meds to treat autoimmune issues for the last 15 years (only 3 of those years were med free). I can't even begin to tell you the toll they have taken on my body. I wonder every single day where I'd be if I hadn't taken them. I wonder every single day what I'd look like if I hadn't taken them. I did what I felt I had to do at the time, but if I had it to do over again, I may have done things differently. My mindset was always "I'll worry about that later". Well, it's later and I'm paying. My message is - less is better. Don't treat until you have to. Make a wise and informed choice. Weigh the benefit vs risk.
Sure wish we could see into our future to know long term effects of all of these choices! Sure would make ITP in particular more clear to treat! So much choice and so many things to consider! Though not knowing is also so much easier or we might be scared of what is to come...
Sure is fantastic how educated you are Sandi and how much of your knowledge you share so willingly with everyone. A true gift to so many people on the boards, even the ones who just read and don't post much! But your wealth of knowledge is inspirational, that we should all be that well versed in the diseases and treatments we have!
Slammed: I've been thinking about your drop in count after being on Promacta for a while. Has your MD given you any logical explanation for it? As you know, I'm right behind you--I started in September--and Vdeutsch85 is starting this week, so we're looking at this issue possibly coming up soon as well. The only thing that makes sense is that the body adjusts to the new infusion/creation of platelets by creating more antibodies to kill the new ones off!! Scary thought, but what else can be going on, and has anyone else experience this problem with Promacta??!!
That is a scary thought. I curently have a cold right now and I'm just dragging. When I'm sick or highly stressed (which I have been for the pass 2 weeks), I do a see a crash in my count. My dr has no explanation. I will have my CBC on Thursday again since he wants to closely monitor my count. The bright side of thing is that I'm currenly at 12.5mg, if it drops further, we can always increase to 25mg...
As with any new treatments, we need to be patient and give it time to see how our body is going to react. 60k is still a very good number for me...now, if only I can stay around that number...
I was doing really well on Nplate ( well all over the place count wise but always above 50) from April through August. I got a cold and it dropped my counts to 19. However, they bounced back really quickly and was at 323 the next week ( I think my highest count ever). The doctor said when you are sick your immune system is in overdrive and fighting extra hard. I know it's hard but be patient, your counts may stay the same or like me go up. For now get some rest and try to fight that yucky cold!
As cheesy as it sounds I'm glad you Luca and I are all trying Promacta at around the same time. I do not feel alone trying this drug.
For years now, my dr does not believe that me being sick is a cause for a crash in count. But, looking at my journal, I see that it DOES happen in my case. So, I hope that as I get better, my count will go up.
I hope you have success with Promacta as me and Luca. When is your next CBC? Mine is this Thursday.
It makes sense logically since this is an autoimmune disease so our immune systems are always in overdrive and probably even more so when we have an infection to fight off. I have a feeling your counts will be up. The specialist said that if a TPO is effective, it usually tends to stay effective. ( I freaked out when I had a cold). Sometimes the doseages needs adjusting but it is unlikely that it will stop working.
I hope your doctor didn't also say fatigue is not caused by itp. Another really annoying one.
I'm getting a CBC wed. However I had Nplate last wed and will get a half dose this week, so I probably won't really know if it's working for a few weeks unless I am extremely high. The specialist wanted to slowly ween me from one to the other. He knows how refractory I am so he thinks this will be safer for me.
Good luck with your CBC? I have a feeling that it will be higher.
Fatigue...sighs...how does one tell if it comes with aging or with ITP. I have always been a morning person, full of energy. Now, I'm in bed by 10pm, and struggling to get out of bed in the mornings. There are some nights when I find myself so tired that I'm asleep by 9pm. I never go out anymore...just don't have the energy.
With this cold, I want to take some cold medicine, but scared to...since I don't know how it will interact with Promacta.
The results for the next CBC shall be interesting...I will post the results once I get them. I just want a breather...a couple of years without worrying about my ITP...and I'm so hoping that I can achieve that.
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