Pain in the coxis, hips, groins and the whole le... - MPN Voice

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Pain in the coxis, hips, groins and the whole legs. Do you have?

SoledadBarcelona profile image
8 Replies

Do you suffer of it? Is it due to PV? If you take Interferon, Pegasys, do it finish with this pain or not? And Hydroxiurea? What drug is recommended with bones pain? What kind of medical proofs? Any recommendations. It can be confused with arthritis, Hashimoto, or other diseases. How do you know about it?

Thanks

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SoledadBarcelona
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hunter5582 profile image
hunter5582

If the pain is due to the MPN, then PEGylated interferon or Ruxolitinib are supposed to work better than hydroxyurea. Definitely soothing to discuss with a MPN Specialist. If you cannot see one, hopefully a regular hematologist will put the time into looking at the issues and come up with a good plan.

SoledadBarcelona profile image
SoledadBarcelona in reply tohunter5582

This is the question. How I can know if the pain is due to PV or not. Thinking about it.

hunter5582 profile image
hunter5582 in reply toSoledadBarcelona

Thorough evaluation by a doctor who understands MPNs is the best way to figure it out. If you can't access a MPN specialist, then you have to rule things out until the MPN is the only answer left. Bone pain is something you will hear many with MPNs experience. Add to that the role of systemic inflammation that comes from the overproduction of inflammatory cytokines linked to deregulation of the JAK-STAT pathway.

Wish we could tell you the answer, but it is going to take some medical detective work to figure it out. Sometimes we have issues that are not related to the MPN and sometimes thinks are linked in ways that are not well understood. I hope you get answers soon.

Pte82 profile image
Pte82

Research NAC and alpha-glycosyl isoquercitrin

SoledadBarcelona profile image
SoledadBarcelona in reply toPte82

Thanks, Pte82. You mean Isoquercitrin. It exists in the flower of Lidan (Malvaceae), the leaves of kenaf (Apocynacese) and Lithocarpus polystachyus Rehd. It is yellow crystalline powder.Isoquercetin is presently being investigated for prevention of thromboembolism in selected cancer patients.

Or, you are talking about another thing.

I dont know if it is the same you are talking about. Can you explain me it, please?

Regards

SoledadBarcelona profile image
SoledadBarcelona in reply toPte82

NAC is N-Acetyl L-Cysteine.

Two suplements for cellular oxidation. Is it fine? Why do you recommed it? Tell me, please. Interested.

Pte82 profile image
Pte82 in reply toSoledadBarcelona

Soledad, your appeal for relief brought NAC to mind and that's why I suggessted researching it. Controlling inflammation in MPN's offers an approach to slowing progression and buffering pain. Along with two other amino acids — glutamine and glycine — NAC is needed to make and replenish glutathione.

Glutathione is one of the body’s most important antioxidants, which helps neutralize free radicals that can damage cells and tissues in your body. This link may shed a little light on it and I hope you become more knowledgeable about it. Always consult your health care professional before using any supplement.

pvreporter.com/nac-n-acetyl...

tifftriesit profile image
tifftriesit

I have PV and lately my hips and the same you mentioned are killing me. Wonder why? This is recent for me.

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