Sad to report my platelets have not been behaving well lately. As a refresher, I started Promacta on May 22, 2015, I tapered off of it on May 30, 2016 and platelets were staying around 50,000. I had some odd bruising on the bottom of my finger (which was my first symptom when this started in January, 2015), last week. Testing showed me at 41,000. Went for a run on Thursday, as I always do on Thursdays, and at the one mile mark, my nose spontaneously started to pour out blood. It took the whole walk back to my car, pressing my nose with my bloody shirt, to finally stop. Back to the Hemo for a CBC and down to 30,000. Started back on 12.5 of Promacta for a week and we will see what happens. I know I won't die, but it sure was disappointing to have symptoms again. I am not on predisone this time, so at least my mental health is less at risk! Thanks for listening.
Thanks sandi. I have not seen any posts that promacta does not work the second time around so I am trying to stay optimistic. I appreciate the support. I am still try trying to get over the fact that I have a life long illness.
Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
Quite the nuisance. It is the fact that bleeding is so unpredictable. I dread the thought of being in a meeting and my nose lets loose! If I did not have a job I might have waited to start treating again.
Sorry to hear Emily. A few of questions come to mind, LOL
Noticing the timeline, do you suppose your counts go down during colder weather / winter?
For the year you were taking Promacta, was the dose normally 12.5 mg?
Is there a theory about why one can go into (temp) remission when tapering off (with a count of 50) of Promacta?
Do you suppose staying with Promacta until one is forced off, from higher counts, might lead to a more durable remission?
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2352
Emily - never think of it as lifelong. Remissions happen all the time. I thought I would have ITP forever too after 7 years of it, but I have since had a 10 year remission. You do well with a low dose of Promacta so controlling it at this time is not difficult. When you take your pill, it's not much different than someone who has to take a pill for high blood pressure or cholesterol. Many people take daily pills to control something.
It is entirely possible that it is some how sensitive to a seasonal change, but I have not figured how to make that change anything for me. Plus I live in arizona so it is not like there is a major temperature change! ITP seems quite unexplainable. I have not changed anything during this process. I use the same shampoo, moisturizer etc. I have been tested for food and environmental allergies. Nothing has come back that helps me change the course of the disease. I started on 50 mg of promacta and slowly tapered down to 12.5 once a week and then none at all. I could be wrong but I see no rhyme or reason to remissions or relapse. Hopefully some day some will figure it out.
I remain hopeful that I will get a lasting remission or if not, that promacta will continue to keep me in a safe range. I am fine taking a pill everyday. It is only disconcerting to have such an unpredictible disease and unpredictible symptoms. Went for a lovely early morning run with a friend and felt so fortunate that I am able to do so. I feel fine and that is pretty great.
Ok. Just thinking out loud here. Perhaps you do less or more running/jogging during winter months?
Seems like the stable dosing level after restarting again could be informative to what happened. If 12.5 mg works fine then that would suggest the 'stickiness' of Promacta just wore off. If a higher dose works then that might suggest some kind of reduction of platelet production - more/less running or age related? What do you think?
LOL, classic runner's high (addiction) description. I used to jog too, many years ago. Back couldn't take it anymore. Now walk everyday.
Well I trained for and ran two half marathons a few years back and both were in the winter so I would find it hard to believe it has to do with the distance of my runs since I was fine then. I have seen anything on this list or in anything I have read that suggests exercise influences ITP or platelet function. Thanks for trying to think outside the box.
I'm sorry to hear that you have to go back on the promacta. Hopefully your body will be able to wean back off after a short bout with the medication.
I think those of you with the nosebleeds during low counts have it the worst. I can't imagine dealing with a nosebleed for days and nothing much that you can do to make it stop. Ugh! Hang in there and I hope the promacta does its thing for you again. You are one of my happy data points to aspire to as I slog along at 75mg
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