Taking supplements with ET

That's interesting. I have ET and am on Hydroxyurea, 500 mg 2x a day 4 days a week. I was taking a hair/skin/nails supplement that included Biotin but it did not appear to affect my platelet levels (which have dropped from 792 to 233 in the 5 months I have been on it). I recently stopped the supplement due to also dealing with collagenous colitis, to see if eliminating the supplement would help and will see if/how this affects my platelet levels when I have my next blood test on May 13.

I use a Redken hair cream product to help with hair growth.
It hasn’t helped but I’m hoping. Hair is still thinning.

Please don’t take any supplements without approval from your doc.

Hi,
Thankyou for your posting. Could you share what your dosing amounts were for the Biotin and Cranberry supplements?
Best of luck with your journey.
Joe

How much are they increasing your platelets?

ET CALR+ for 15 years, on HU, age 70. Mine fluctuate as much as 50 points either side of an average of 450 regardless of supplements. Also taking biotin for 6 months and no weird fluctuation. I started taking a daily multivit four years ago, and no weird spikes or drops. Ditto with all the covid vaxxes and flu shots.

The cranberry tablets were 650 mgs. and the biotin was whatever dosage recommended. I discontinued the biotin several years ago so I don't remember the dosage. Since I had 2 different experiences with the biotin with trying 2 different times gave me a reason to wonder if there was some correlation with the rise of my platelets. That's why I reached out to see if anyone else had them same issue.

They went from low 300's up to mid to 500's. I had no other changes with supplements or meds so was wandering if it was related to the biotin. This happened 2 different times, therefore was more apt to think it was so I reached out to others.
Thank you for your reply

Thanks. I appreciate the numbers.

Interesting topic. I've not been posting for a while. My MF, MDS made a major turn for the better several months back, and I've just been enjoying life to the fullest while it last. My Dermatologist has been pushing me to use something called METANX. Tells me that it has no bad effects and will help with the tingling in my feet. Humm? I've not even taken the samples she gave me. First off, I'm afraid to "Rock the Boat" by taking anything not specifically prescribed by my Oncologist, and the other reason is that even though it requires a prescription, it is not covered by either my BCBS or Medicare. I'll of course ask at my next appointment, but my appointments went from once a week to about every 6 weeks. Yep... things are really looking good. My numbers are better than they have been in 10 years. It all started when they stopped the Dacogen treatments because all CBS counts has fallen so low. With a couple weeks things started going up and they have not stopped. Yeah! Any how... is ANYONE taking this METANX stuff?

Glad you are feeling so well! It's great to get a stretch of good days, isn't it?

As I understand it, Metanx is a mega-dose of B vitamin used for diabetics. My husband has prediabetes, and he looked into it.

I don't know if MPN neuropathy works the same as diabetic. Probably good to ask the oncologist.

I use hydrocortisone cream from the drug store on my feet when I get prickles. I have ET, and I know discomfort from MF is worse and more constant.

An online search said this “Metanx Adverse Reactions Acne, skin reactions, allergic reactions, photosensitivity, nausea, vomiting, abdominal pain, loss of appetite, increased LFTs, ...”

Yea, good idea to check with your oncologist before rocking the boat!