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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70768

  • momto3boys
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I just started treatment with Fostamatinib/Tavalisse this last week on Tuesday. My blood pressure has been steadily increasing over the last few days and after waking in the middle of the night with a bad headache it's now at 167/120. Ugh. I'm going to try to get a hold of the on-call hematologist in the morning, but I wanted to hear if anyone else who tried the medication ended up with hypertension (common adverse effect), and whether you took blood pressure medication to deal with it.

Deciding now if I'm going to skip the morning pill until I can get a hold of someone. Not much more room for my blood pressure to go higher without danger. I can deal with the funky neck rash and wonky GI effects, but this blood pressure business is a no go.

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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70770

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Mom that is high. Definitely worth seeking medical advice. Elevated blood pressure is a common side effect.
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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70773

  • momto3boys
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mrsb04 wrote: Mom that is high. Definitely worth seeking medical advice. Elevated blood pressure is a common side effect.

Thanks for the confirmation mrsb! That number freaked me out (combined with the headache and woosh woosh in my ears), but I wasn't sure how nervous I should be. Still waiting on a call back, but I did not take the medication this morning and won't until I get lower blood pressure numbers. Makes no sense to go into a hypertensive crisis for an ITP treatment!

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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70774

  • momto3boys
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So, the on-call hematologist was very helpful. He said that if the systolic blood pressure goes above 180, they discontinue fostamatinib/tavalisse. Because I was in the 160s, he prescribed amlodipine to bring the blood pressure down. He was also able to give me my last lab results, and my count was 52k! Now, it's of course too early to tell whether that is in any relation to the new medication or a rebound from my post vaccine dip, but I'm willing to continue with fostamatinib/tavalisse to see if it's helping. Time will tell. I skipped my morning dose and will be skipping my evening dose to give the amlodipine some time to work. This headache from the rapid blood pressure spike is no fun. If my blood pressure improves tomorrow, I'll resume treatment.

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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70776

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Mom.
Glad to hear about Amlodipine. Have just found this on a well respected UK medication website.
Hypertension
Stage 1: systolic between 130-139 or diastolic between 80-89 mmHg
Initiate or increase dose of antihypertensive medication for patients with increased cardiovascular risk, and adjust as needed until blood pressure (BP) is controlled.
If the BP target is not met after 8 weeks, reduce fostamatinib to lower daily dose
Stage 2: systolic at least 140 or diastolic at least 90 mmHg
Initiate or increase dose of antihypertensive medication, and adjust as needed until BP is controlled.
If BP remains 140/90 mmHg or higher for more than 8 weeks, reduce fostamatinib to lower daily dose.
If BP remains 160/100 mmHg or higher for more than 4 weeks despite aggressive antihypertensive therapy, interrupt or discontinue fostamatinib.
Hypertensive crisis: systolic over 180 and/or diastolic over 120 mmHg
Interrupt or discontinue fostamatinib.
Initiate or increase dose of antihypertensive medication, and adjust as needed until BP is controlled. If BP returns to less than the target BP, resume fostamatinib at same daily dose.

If repeat BP is 160/100 mmHg or higher for more than 4 weeks despite aggressive antihypertensive treatment, discontinue fostamatinib.

Seems a logical protocol. Hope it is of use. Fingers crossed for a lower BP.
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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70778

  • MelA
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Mom that med should help lower your bp - keep us posted, yours was way too high!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70779

  • momto3boys
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mrsb04 wrote: Mom.
Glad to hear about Amlodipine. Have just found this on a well respected UK medication website.
<snip>
Seems a logical protocol. Hope it is of use. Fingers crossed for a lower BP.


Thank you so much for sharing that! It makes a lot of sense, and can guide my sense of "how high is too high."
Luckily, it seems the medication is already helping, and I was down to about 140/100 an hour ago, so that's a relief! I'm going to see how it looks in the morning, and if the blood pressure is under control I will be starting up with the fostamatinib again.

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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70780

  • momto3boys
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MelA wrote: Mom that med should help lower your bp - keep us posted, yours was way too high!!


No kidding. The splitting headache was a key indicator. The doctor said that the drastic and sudden change in the blood pressure led to the symptoms. He mentioned that people with severe hypertension are often unaware of it because their numbers increase over time. Luckily it's settling back down now, and I can maybe take some Tylenol for the headache (I had read that Tylenol can increase blood pressure, so I was avoiding it until I got some medication to bring it down)

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Fostamatinib/Tavalisse and Adverse Effects 1 month 2 weeks ago #70782

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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
  • Posts: 1811
  • Karma: 7
  • Thank you received: 516
Mom Please keep us posted.

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