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Anyone on Promacta get sporadic finger pain?

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7 years 8 months ago #62295 by jonnymo
Anyone on Promacta get sporadic finger pain? was created by jonnymo
Hello all! I've been on Promacta for about 5 months now, and I have noticed a new sporadic pain on the pads of my fingers when I press down on them. The pain doesn't occur and reoccur on the same fingers and doesn't happen on predictable intervals. The pain will last for a day at most and be okay the next.

I do not engage in any activities that would result in pain found well under the surface of my skin, so I believe it may be related to Promacta. Have any of you noticed this yourselves? Thanks!
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7 years 8 months ago #62296 by penlyn63
Replied by penlyn63 on topic Anyone on Promacta get sporadic finger pain?
Hell-a yes!!! It was the first side effect I had when I started Promacta. Ironically, it only happens to me when my counts are high! When I drop lower the pain goes away, (which is one of the ways I know before my CBC where my count may be.) Weirdest feeling. It is actual pain on the pads, not really tingling, right?
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7 years 8 months ago #62297 by jonnymo
Replied by jonnymo on topic Anyone on Promacta get sporadic finger pain?
Yes, it's pain on the pads of my fingers when I put any pressure on them. Not tingling. And yeah, it IS the weirdest feeling! I feel even weirder trying to explain it to my doctor.

"There's pain on the pads of my fingers when I press them. And it happens on different fingers. For different periods of time. I can't really tell what causes it, and no, there's no pain in my fingers right now..."

I feel like I'm giving someone a riddle haha. Anyways, that's interesting how you notice that the pain correlates with how high your platelets are. I'll have to keep an eye out for this!

In regards to the pain, have you just decided to deal with it?
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7 years 8 months ago #62299 by penlyn63
Replied by penlyn63 on topic Anyone on Promacta get sporadic finger pain?
I would have it on all of my fingers at the same time. And, ironically, it would occur at about the same time every day... or feel worse at the same time at least, because that is when I was noticing it. I take the Promacta first thing in the morning and my fingers would really start to hurt around 2:00 - 3:00 in the afternoon. I just kinda dealt with it, thankful that my numbers were up, at least! I've now been steadily falling for about 7 weeks. Last count was 35. I go again Tuesday, but it doesn't look good. Have started bruising again. We keep trying!
The following user(s) said Thank You: jonnymo
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 8 months ago #62300 by Hal9000
Replied by Hal9000 on topic Anyone on Promacta get sporadic finger pain?
penlyn, is switching to Nplate an option?
ITP Types and Treatments by HAL
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7 years 8 months ago #62301 by penlyn63
Replied by penlyn63 on topic Anyone on Promacta get sporadic finger pain?
Hal...I'm sure we'll try it if it gets to that. I had such hope for Promacta! I honestly always feel fine. I can tell when I get below 30 only because I will tend to bruise. But other than that, I have no symptoms. So if I can stay between 30 - 50 on the Promacta I'd like to try!
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 8 months ago #62308 by mrsb04
Replied by mrsb04 on topic Anyone on Promacta get sporadic finger pain?
Can't say I've had any finger pain. The only side effect I've ever noticed is a decreased appetite which isn't the best thing for someone with a history of anorexia. Sometimes I have to force myself to eat
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 8 months ago #62311 by Hal9000
Replied by Hal9000 on topic Anyone on Promacta get sporadic finger pain?
Anne, you're very lucky not to have headaches and such with Promacta. What have you settled into, a 50/25 split dose?

You've mentioned in the past about a slightest hint of a cold dropping counts. I've had some odd sinus things happen to me as my counts creep up with Promacta and Danazol. Let me explain. On some days my nose will be stuffed up, then a few hours later it can be completely clear. Then get stuffed up again, and clear out again, many times during the day. At the same time, the day after I take Promacta my nose will be clear.

If I didn't know any better I'd think that my nose gets stuffy when my platelet count is being reduced by my immune system.
ITP Types and Treatments by HAL
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7 years 8 months ago #62313 by poseymint
Replied by poseymint on topic Anyone on Promacta get sporadic finger pain?
Hal, the stuffy nose could possibly be a side effect of Promacta. Does it only happen on the day you take Promacta and then goes away the next day? when I was taking it I noticed several weird things- pale skin, peeling skin. I knew it was the Promacta because those things cleared up within 24-48 hours after quitting the drug. I started and quit Promacta 4 times so got a good sense of what it was doing. As you know, side effects do come and go. Mayo Clinic lists runny nose as a side effect of Promacta. -

www.mayoclinic.org/drugs-supplements/eltrombopag-oral-route/side-effects/drg-20072443
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7 years 8 months ago #62314 by jonnymo
Replied by jonnymo on topic Anyone on Promacta get sporadic finger pain?
@mrsb04 Interesting how vastly different our experiences are. My appetite is fine, but I get headaches, occasional finger pad pain, and a high risk of clotting as evidenced by my recent DVT. As penlyn63 said, we keep trying!
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 8 months ago #62315 by Hal9000
Replied by Hal9000 on topic Anyone on Promacta get sporadic finger pain?
Posey, it is just the opposite. Taking Promacta clears my nose. Don't tell anyone but I'm skipping four days at a time. It's the third and fourth skipped days when my nose can't figure out what it wants to do next. That is to say, I think if I was just taking Danazol this on/off thing would likely be continuous. But Promacta is interrupting that and is causing clear periods.
ITP Types and Treatments by HAL
The following user(s) said Thank You: poseymint
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