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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A myMPNteam Member asked a question 💭
Oklahoma City, OK

ET and lupus

May 18
 · 
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A myMPNteam Member

I know nothing about lupus but should your oncologist and rheumatologist work together on your treatments. . .probably. In my experience different specialists that a patient may have often work in silos and don’t coordinate together. A family doctor may help you navigate between specialties and help identify any contra-indications but they’re limited as they’re not specialists. It’s hard to navigate in my experience.

Becoming knowledgeable about your conditions may help you ask the right questions and assist you in being that conduit between them. We often have to advocate for ourselves. If you have some who can attend appointments with you and be a second set of ears can be very helpful. My sister attends appointments with my mother and takes notes so they both know what is going on and she can tell me too.

May 18
A myMPNteam Member

Would this make the markers for lupus to be positive or just inflammation markers?

May 18
A myMPNteam Member

How should my oncologist help with the rheumatologist?

May 18
myMPNteam

Is there a connection between Essential Thrombocythemia (ET) and autoimmune conditions like lupus? Yes, and it's worth understanding.

People with MPNs, including ET, appear to be more likely to develop autoimmune conditions. This is because inflammation — which plays a big role in autoimmune diseases — can also worsen MPN Show Full Answer

Is there a connection between Essential Thrombocythemia (ET) and autoimmune conditions like lupus? Yes, and it's worth understanding.

People with MPNs, including ET, appear to be more likely to develop autoimmune conditions. This is because inflammation — which plays a big role in autoimmune diseases — can also worsen MPN symptoms and may even speed up disease progression. Lupus is one of the autoimmune conditions most commonly seen alongside MPNs. It can affect many parts of the body, but most often targets the:

- Skin
- Joints
- Kidneys
- Nervous system

Autoimmune conditions like lupus tend to follow a cycle of flares (when symptoms are intense) and remissions (when symptoms ease up). The good news is that most can be managed with medications that help regulate the immune system. It's really important to keep your care team informed about any new or changing symptoms, especially if you suspect an autoimmune flare. Managing both conditions together requires close coordination with your doctor.

May 18

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A myMPNteam Member asked a question 💭
Oklahoma City, OK