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.