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and a half years with pn, you exhausted all options, found out what works a bit for you and stay with it. Until there's a cure, what choice?

August 1, 2025
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Answer Summary

Members rallied around someone navigating the exhausting reality of living with prurigo nodularis at 82, offering fierce validation that... Read more

Members rallied around someone navigating the exhausting reality of living with prurigo nodularis at 82, offering fierce validation that managing a chronic condition without a cure is not being in a rut but rather survival and self-advocacy. Several members shared practical wisdom from their own journeys, including the importance of finding a personalized treatment plan through trial and error, bringing a trusted advocate to medical appointments when feeling overwhelmed, and setting boundaries with providers who don't acknowledge the daily limitations chronic illness imposes. A recurring theme was the delicate balance between staying proactive with medical care and honoring one's own capacity, with members emphasizing that age, fatigue, and complexity of conditions all deserve compassion from both doctors and oneself.

A MyPrurigoTeam Member

I am fine with suggestions. I just need to keep you more informed on what I'm doing. Ready, I guess, for my first dupixent. I can't believe I missed that on the iron tablets. The label says ferrous sulfate! I am finding I have really messed up some things this past months. I'm sorry about your family. I'm going for more counseling about mine what is left because I have found I haven't dealt with the anger and fear. Best to you!

August 4, 2025
A MyPrurigoTeam Member

I am going one step at a time with my dermatologist. We will see what dupixent does. Next step, nemluvio. Topical? So far not much but mucipron(sp) and Vaseline helps a lot to soften sores Please don't take my name. I just don't elaborate alot and this is a support group.

August 2, 2025
A MyPrurigoTeam Member

Faith, thank you for suggesting that very approach. I feel very bad that Georgia has been receiving that treatment. I think it is a great idea to take someone along to hear what the physician has to say and what their recommendations are.

August 1, 2025
A MyPrurigoTeam Member

Hi Georgia - it definitely wasn’t me that said you were in a rut! Recheck - I would never say that as it’s a useless/unhelpful comment.

August 1, 2025
A MyPrurigoTeam Member

Georgia, I don't need to be kept informed about anything. I have enough to deal with on my own. It's totally up to you what you share or don't share. I just don't want words put out as mine when I didn't say them in the first place. It's best to do what works for you and gives you peace.

August 4, 2025

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