Immune Thrombocytopenia Purpura (ITP): What helps?

Posted by naiviv @naiviv, Sep 2, 2022

Has anyone been diagnosed with ITP? Does anyone take supplements for ITP? Food to eat to increase platelets?

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Colleen Young, Connect Director | @colleenyoung | 7 hours ago

In reply to @holly5 "My daughter was diagnosed with ITP after a year of frequent Strep infections, platelets down to..." + (show)

@holly5, I believe other members like @agfromtheuk @johnbowrey @et09 @lfn2124 have experience with avatrombopag (brand name Doptelet)that they may be able to share.

Holly, has your daughter changed medications?

swalex | @swalex | Oct 23 10:14am

In reply to @jimmyb63 "They have not yet used IVGG yet just the IVIG (Immune Globulin). I will ask about..." + (show)

@jimmyb63
A negative bone marrow test for immune thrombocytopenia (ITP) is expected, as the purpose of the test is to rule out other conditions like leukemia or myelodysplastic syndrome, not to diagnose ITP itself.
https://emedicine.medscape.com/article/202158-workup#:~:text=serious%20internal%20bleeding.-,Bone%20Marrow%20Examination,absence%20of%20other%20significant%20abnormalities.

holly5 | @holly5 | Oct 23 7:16am

My daughter was diagnosed with ITP after a year of frequent Strep infections, platelets down to 2000, all other labs normal. Steroids had no effect, IVIG with only temporary improvement. Eltrombopag is working well but she is experiencing a lot of nausea and fatigue. Does anyone have experience with Avatrombopag? No one will touch her tonsils, but we are wondering if they are continuing to stimulate her autoimmune antibodies, regardless of negative swabs.

becca13 | @becca13 | Oct 2 8:42pm

In reply to @docheat72 "I am now going to transition from NPlate to Promacta. I will comment after a few..." + (show)

@docheat72
Thanks for replying I look forward to following your journey…may I ask why did you have to transition?
I hope everything is going well for you. 💜🙏🏼

becca13 | @becca13 | Oct 2 8:34pm

Thanks for responding… I look forward to following your journey..
I really hope I Never have To go off of N Plate it has been a wonderful solution in my case.
It can be so scary I hope everything goes well with you💜🙏🏼

docheat72 | @docheat72 | Oct 2 6:21am

I am now going to transition from NPlate to Promacta. I will comment after a few days about side affects

becca13 | @becca13 | Oct 1 10:59pm

In reply to @docheat72 "Good Afternoon, I am living with MDS and ITP. So far the treatment has been NPLATE..." + (show)

@docheat72
I have been on N Plate since February and this shot has brought my platelets up to near normal- they were at 5…..they do fluctuate but they mostly stay in the low normal range.

stf | @stf | Sep 20 3:37pm

In reply to @britt0220 "When did you start experiencing MS symptoms? Right now I am having a lot of MS..." + (show)

My MS appeared even before my ITP, about 30 years ago. I haven’t had any symptoms worth mentioning since my 2nd bout of optic neuritis 10+ years ago. I am just going to get an MRI with a new neurologist after basically ignoring the diagnosis since pre-covid lockdowns.

britt0220 | @britt0220 | Sep 20 2:06pm

In reply to @stf "What helps: the only research-based answer to this, if you are looking for over the counter,..." + (show)

When did you start experiencing MS symptoms?
Right now I am having a lot of MS symptoms but not test positive for it.

stf | @stf | Sep 20 1:12pm

What helps: the only research-based answer to this, if you are looking for over the counter, is Vitamin D, which has a positive effect on many autoimmune conditions. It is not a magic bullet, but I take it because I have both MS and ITP.

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