Quercetin Phytosome

This isn’t medical advice in any way, but I wanted to report a natural flavonoid which I believe has helped my spouse.

She had been admitted to the hospital in Oct of 2023 with rectal bleeding and a single digit platelet count. 

She has taken in this order:
1) Dexamethasone - raised platelet counts but dropped rather quickly.
2) Prednisone - maintained longer but dropped eventually to single digits and bleeding.
3) IVIg infusions as salvage but effect only lasted approx two weeks.
4) Promacta - no effect and Alt and AST increased beyond threshold.
5) Rituximab - reduced rate of drop but eventually back to single digits and bleeding.
6) IVIG - again as salvage but would wear off quickly…however after Rituximab, the response would last between 3 and 4 weeks.
7) Avatrombopag - no effect, however when salvage therapy with IVIG was taken, platelets would rise into millions and then Avatrombopag discontinued until platelets reduced into 400 k range. Started Avatrombopag again but platelets eventually back to teens whereas this time took 20mg dexamethasone and would jump back up into 200 range and hold for 2-3 weeks.
Doctor has been unsupportive of taking any natural supplements as is unproven, but after 9 months of nothing sustaining we decided to go ahead and try a combination of 500 mg daily of Quercetin phystosome and Turmeric Curcumin phytosome. 

our thinking was that the immuno destructive/ consumption process once suppressed allowed the Avatrombopag to work. Given these two reported antinflammatory properties, we wanted to see if they would help clear the way for the Avatrombopag. Also with some studies suggesting quercetin Anti CD38 and Stat3 inhibition, which seem to be targeted pathways for some drugs in the pipeline, we figured why not give it a try.

Her numbers started decreasing as expected and went from mid hundreds down to 86 from Wednesday to Friday. At that point we discontinued the Turmeric Curcumin Phytosome out of concern of further drops and its blood thinning properties but continued with the Quercetin. She had started the supplements the previous Wednesday and we wanted to really give them 2 weeks to see if any effect. We had blood work scheduled on Monday and were tentatively expecting to start Fostamatinib the following Friday. On Monday her platelets were at 100. We hoped it was the supplements and continued optimistically. On Wednesday her platelets were at 130…the first time we saw a rise without any Steroids or IVIG. Today (Friday July 26, 2024) her platelets are at 180. 

Her doctor was ecstatic and asked what we had done differently and was skeptical that she had taken a steroid.I Advised that all we did was take the Quercetin phytosome and have been praying a whole lot.

Not sure if this is what did the trick for her, and we pray this response continues, but after 9 months of just life altering refractory condition, we will take this win and celebrate.

For my spouse, her condition seems to be very highly mediated by destruction/consumption and not so much production. Our hope is that we continue to see a rise over time that would allow us to follow the Doptelet dosing schedule down. But even if not possible for now, we are so excited and I wanted to share with you all in the event that anyone may be experiencing similar characteristics worth their ITP and wanted to discuss with their Doctor.

Any update on your wife? Has she been stable? I’m very curious about trying this

Hello,

Thank you Miguel for sharing your experience. I would also like to hear if the effects of Avatrombopag and Quercetin have contributed to durable platelet counts. My son's profile of ITP treatment have a similar timeframe for when they wear off.

Also wondering what source plant is the Quercetin derived from? Is it Sophora Japonica?

Hi Everybody. It has now been 3 months since I last wrote. In these three months her platelets have been in the 120 - 160 range.

We are now checking every 2 weeks and perhaps going to once a month soon. We were hoping to drop the Doptelet dosage down, but not consistently high enough to follow down as per the dosing schedule.

Either way, her oncologist agreed that we will take a slower approach and perhaps continue with 40mg daily and just reduce by 20mg one day per week once every few weeks until we get to the minimal dose to hold out.

Her oncologist can’t confirm if the quercetin is what made the effect, but being the only thing that has changed, other than simply time, she now puts it in her notes to continue with it.

The Quercetin we use is Thorne Quercetin phytosome 250mg, once in morning and once at night (generally with food). Once again, it took about two weeks of taking it along with Doptelet for her numbers to rise.

On supplement facts, yes it states

Quercetin Phytosome (Sophora Japonica extract (flower) / phospholipid complex from sunflower 250 mg

Hello,

How is your wife doing? Is she okay? are there anymore supplements/medications that she has been doing to keep her stable?

Thank you

Hi,

Yes she is currently stable with Quercetin and Doptelet alone...Some fluctuation, but never below 140...Just added Egcg and waiting a couple of weeks to see if any improvement. Hope is to lower dosage on Doptelet from 40mg daily as don't really know long term effects.

So it’s been a few months and my Wife’s numbers have increased above 200 and held, so we dropped down to Doptelet 40mg 3x per week and 20mg 4x per week.

She dropped down to lower 100s, but then started rising again to where her last reading was approximately 190. 

It has now been three weeks since that last reading. After that appointment, we decided to start taking Black Raspberey powder to try and attack inflammation from yet another angle.

Hoping to come down on the Doptelet again, but just very grateful to actually have a life again…huge difference from that whole first year.