TOPIC: High Dose Promacta & High Counts

Carcamoc I personally feel one shouldn't take over the daily value of a vitamin/supplement unless tested and advised to do so. That being said I do take 500mg of Vitamin C a day. However with the B complex I can't take it - plus my B levels are fine. I have neuropathy and my neurologist said don't take any extra B6. Too much of it can make it worse, not to mention B6 has been known to be a cause of neuropathy.

Do you really need a "super" B complex? If not then you are peeing out a lot of money. Be careful of the "super" "mega" etc supplements!

When my D level was way down I had to take 50000 units, think it was once a week - can't recall the duration. Once my level was back in range I was told to take 2000 to 4000 a day.

And by the way my PCP told me not to take a multi-vitamin because of the E in them - this was when I'd get spontaneous bleeds [bruises] in the back of my fingers. Stopped the multi and that rarely happens now. Never did ask my hematologist about taking a multi-vitamin though.

Mel: Yeah, I think it doesn’t necessarily help me with my energy anyway. I still have days even coffee doesn’t help and I’ve been taking it diligently. The only plus I’ve noticed is that mosquitoes don’t bite me as often haha. I live in Houston and mosquitoes are the worst here, but I have only been bitten once this entire summer. I remember reading that taking vitamin B helps you not smell so appetizing to them!

As far as the multivitamin, my hemo was ok with me taking it & so was my PCP. I haven’t had any random bruising that didn’t correlate with low counts, so it doesn’t do that to me but lord help me if I eat even a tiny minuscule amount of turmeric. I get these huge bruises on my legs out of nowhere, the last time that happened to me a couple of months ago, my counts were ok...so I know it was the turmeric I put in a soup that week :0 1/8 of a teaspoon in a big pot of soup, to be exact. Go figure haha

217 twice in a row? Cha-ching. Restarted Promacta at just the right time. Looks like 50mg is dialing in at 217. Ok, NO CRASHING ! New rule, LOL, NO CRASHING ! Oh, and by the way, NO CRASHING !

Interestingly you can overdose vitamin D which then causes tiredness and lack of energy.

Hi all, been meaning to give updates but have been having a tough time. Husband has kidney stones and I’ve taken over caregiver role as he begins a series of surgeries & procedures due to the kidney stones it’s definitely rough, but luckily, I haven’t had any serious platelet issues and have been able to do what needs to get done!

Platelets last week were 358K and I was once again told to stop Promacta and retest this week, which turned out at 488K. I’m continuing to hold off meds and I saw in his notes that my hemo is considering the Rituxan kicked in a bit late. However, as far as I know, we are still going to try the 25mg/day dose and see how I do on it as he said he doesn’t want to take everything away and risk another crash. I hope all of you are well, thanks for reading

50mg is way too much? Nice. Just think. A few weeks ago 75mg wasn't enough. You've gone a long, long way. Plus trying 150mg for the first time around here, AND IT WORKED ! Congrats on this progress.

On Caprylic acid and Probiotics for Candida/fungus that I mentioned earlier. Those didn't affect my counts at all. Oddly or not, it did however affect some mild headaches I was having. If one searches on 'candida' and 'headaches' apparently there is a link. Who knew?
There seems to be more than one theory on why there is a link, but still, I'm happy that sort of headache has now gone away.

Hal: thank you so much, I definitely am grateful to be where I am even though we haven’t landed on a definite conclusion. It’ll be unsurprising to start the 25mg and have to stop again due to high platelets. Obviously, I really don’t want to get ahead of myself but I just have a feeling. Until then I’m still on weekly labs, really supposed to be twice a week at the moment but it’s been crazy here lately

And thanks for the info on the probiotics, I’ll look into it!

My brother has kidney stones. I guess it depends on where it is as to whether one can be broken up with ultrasonics.

Carcamoc, Went from very high dose Revolade to 25mg and being able to stop that occasionally?
Wow, congrats

Lman, thank you! I never would’ve thought with how crazy everything started out that I’d be here right now. Have hope I’ll soon be able to stop meds completely, although even ending up on 25mg or 12.5mg would be a blessing. I know with ITP nothing is promised, but it sure makes me appreciate the good times haha

Hal: husband had a few different stones, a couple that were on their way out which they got rid of when they did his first surgery. Now they’re needing to break up a big stone (1cm+) that’s in his kidney just hanging out. We were told there was no waiting it out, as it could cause a lot of damage if it tries to move so here we are

Quick update: Still holding off of Promacta. Last week was down to 307K and this week at 215K. Had appt with hemo today and he said he feels comfortable leaving me be for the time being, as he has hope my levels will stabilize at a number hopefully around 50K or more. He figured another month of weekly labs and a follow up in a month will be necessary just to make sure my levels stay in a good range. I’m very happy to hear this as I thought for the longest time my platelets would never stabilize...I felt like I was going to be going through monthly crashes for the rest of my life and it was depressing. I really hope by posting my story that it can help in some way to those who have just been diagnosed or are having a hard time finding a treatment!

You must be so pleased. Your haemo sounds very wise. Good luck with counts. Keeping my fingers crossed for you.

Mrsb04 thank you! I’m definitely allowing myself to be excited about it

Yes, that doctor has a really novel treatment method for zebras, errr ahh I mean, those with ITP. Totally unorthodox. Worked wonders on what looked like A(H1N1) Flu virus triggered ITP.

As we have learned from JJ, Rituxan treatment may be a good option for partial to full remission conversion after Nplate/Promacta treatment. And as we might learn from your experience, Rituxan AND Promacta simultaneously may be an equally good option.

Cheers to no more treatments !

Thanks Hal! I’ve enjoyed the entire month of October with counts steady in the 200Ks & no treatments or medications! I’m just waiting on my hemo to slow down labs and follow ups, I can’t wait!

Carcamoc
Great news x