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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sralston | @sralston | Sep 4 1:32am

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

NPLATE only boosts platelet production and requires regular shots. Good treatment until the doctor can figure out the root cause of low platelets.

britt0220 | @britt0220 | Sep 4 1:58am

I had ITP about 15 years ago and unfortunately for myself after 6 months of every treatment possible my platelets couldn’t rebound. I ended up having to have my spleen removed. After the removal I have been fine. I did find out that I have a genetic bleeding disorder Von Willebrand after the ITP.

gwilli | @gwilli | Sep 4 5:37am

In reply to @britt0220 "I had ITP about 15 years ago and unfortunately for myself after 6 months of every..." + (show)

I have been dealing with an ITP diagnosis for 1 1/2 years….platelets on a seesaw the whole time. Can you tell me how they finally diagnosed Von Willebrand for you?

britt0220 | @britt0220 | Sep 4 8:57pm

In reply to @gwilli "I have been dealing with an ITP diagnosis for 1 1/2 years….platelets on a seesaw the..." + (show)

I found a hematologist that was very knowledgeable on Von Willebrand disease!

The normal Von Willebrand panel I wouldn’t test positive for due to having my spleen removed so, these were the blood test he did>
•Chromogenic Factor VIII Activity Assay, Plasma
•Von Willebrand Factor Activity, P
•Von Willebrand Factor Ag, P

stf | @stf | Sep 20 1:05pm

In reply to @britt0220 "I found a hematologist that was very knowledgeable on Von Willebrand disease! The normal Von Willebrand..." + (show)

I’ve had ITP for 25 years. When I was first diagnosed there were 3 main options: prednisone, Ivig, or splenectomy. After about 6 horrible months on prednisone, AntiD research showed good results and I switched to that treatment for several years. (Edit: antiD is no longer available).

I’ve also tried rituxan, which didn’t do much for my counts. Since 2015, I’ve just not treated and counts have stayed between 40-80k.

I’m a candidate for Promacta, but other than when I need surgery my current counts are safe and I don’t treat.

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.

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 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.

becca13 | @becca13 | 3 days ago

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.

docheat72 | @docheat72 | 3 days ago

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

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