Do you have any supplements you think helped JAK2+ patients?

[livelovelaugh1992]

I’m just curious is there any supplements that is not advised or would help a JAK2+ patient, is Omega 3 and normal multivitamins okay?

I’m just concern that they are other vitamins that conflicts with our condition.

For example, it’s not a vitamins but I heard birth control pills are not advisable for people diagnosed with ET, can anyone attest to that?

Thank you so much in advance! 🙏🏼

[hunter5582]

Some of the Omegas (e.g. fish oil) have the potential to potentiate the blood thinning function of aspirin. This does not necessary mean you cannot take them, but you do need to be aware of the potential durg-supplment interaction. The potentiation of aspirin is a common element in many anti-inflammatory supplements and medications.

Multivitamin are usually OK. Do pay attention to what the forumation is. Some of us need to avoid iron supplements. Note that some people with ET also flag with pseudohyperkalemia (false read on elevated potassium levels).

There is some degree of increased risk of thrombosis in at least some types of birth control pills. This risk needs to be balanced against the risk of an unwanted pregnancy. This is an issue that needs to be reviewed with a MPN Specialist. A regular hematologist or gynecologist may not be able to give you an accurate answer that is based on your individual profile.

Hope you get answers to all your questions.

[livelovelaugh1992 in reply to hunter5582]

Thank you for this hunter5582 🙏🏼

[EPguy]

I have been taking NAC with Dr approval. I hope to post more on it after a while more. A benefit I believe for me has been elimination of tingling in my fingers. It is supposed to have broad anti-inflammatory effects and is being trialed in MPN patients.

Here is a discussion of it on the Voice

healthunlocked.com/mpnvoice...

[Copurnicus in reply to EPguy]

What is NAC?

[EPguy in reply to Copurnicus]

N-acetyl cysteine. There is a good discussion of it in relation to MPNs in the link in my reply above.

[katiewalsh]

The old birth control pill (1970’s) was linked to increased risk of blood clots but I don’t know if that’s still true.

[Mazcd Partner MPNVoice]

hi Livelovelaugh1992, this information on contraception might help youmpnvoice.org.uk/living-with...

[sammpn]

I'm JAK2+ and started out my MPD with a PV diagnosis, but now more ET symptoms. Under control with HU (and aspirin). My hematologist says definitely no iron, and no vitamin-C. I've read that the prohibition on vitamin-C is mostly because it promotes iron absorption when its taken at the same time as food, but my doctor still says no to it. So, I don't take a multivitamin, because they always include C. I haven't heard or read about any to specifically include, but those are ones to avoid or be cautious around.

For others, I've specifically asked about B vitamins (fine with him), and he's open to other herbs and supplements in general.

[Cja1956]

I see a functional medicine doctor and she put me on b12 and methyl folate. I also take magnesium because I read that hydroxyurea depletes it from your body. Oh,, and I also take vitamin D3. Vitamin K contributes to blood clotting so I stay away from that.

Whenever she suggests a new vitamin or supplement, she writes a note to show my hematologist to make sure it’s okay. So far, there have been no issues. In fact, I feel much better since I started taking these supplements.

[Meatloaf9]

Hi, my mpn specialist did recommend taking NAC. I forgot to ask him what dosage, hope I remember next time. Not advice, just what I was told. Best to you.