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I Was Diagnosed With ITP Two Years Ago Just After Receiving The Moderna COVID-19 Gene Therapy.

By David4 1 answer
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Why Am I Always Tired?

By A myITPcenter Subscriber 1 answer
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How Can I Deal With The Pain?

By A myITPcenter Subscriber 1 answer
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I Have CLL, ITP And Liver Disease. My Doctors Do Not Want To Give Me Steroids Because Of My Liver. What Are Safer Options For Low Platelets?

By A myITPcenter Visitor 2 answers
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61 questions

My Son Age 8 Year With Chronic Itp Non Responder All Medication Platelets Count4

A myITPcenter Visitor asked a question 💭
5 New Treatments for Chronic ITP Read Article...
myITPcenter

What treatment options are available for a child with chronic ITP who isn't responding to treatment and has a very low platelet count of 4,000?

A platelet count of 4,000 is dangerously low and… read more

What treatment options are available for a child with chronic ITP who isn't responding to treatment and has a very low platelet count of 4,000?

A platelet count of 4,000 is dangerously low and requires immediate medical attention. At this level, there's a serious risk of severe bleeding, including potentially life-threatening internal bleeding.

When initial treatments aren't working, doctors typically move to second-line and third-line options. These include:

- Rituximab (Rituxan) - blocks immune cells from making the antibodies that destroy platelets
- Thrombopoietin receptor agonists - medications like eltrombopag (Promacta) and romiplostim (Nplate) that trigger the bone marrow to produce more platelets
- Immunosuppressants - medications like azathioprine that reduce immune system activity
- Splenectomy - surgical removal of the spleen, though this is typically reserved for severe cases

For extremely low platelet counts, emergency treatments like IVIG or high-dose corticosteroids may be used to quickly raise levels, even if previous responses weren't sustained.

It's critical to work closely with a pediatric hematologist who specializes in ITP. They can evaluate why current treatments aren't working and adjust the approach accordingly. During this time, preventing injuries and avoiding activities that could cause bleeding is essential.

6 days ago
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Hi

A myITPcenter Visitor asked a question 💭
5 New Treatments for Chronic ITP Read Article...
myITPcenter

Hello! Welcome to myITPcenter. I'm here to help answer any questions you might have about living with ITP, whether it's about symptoms, treatments, connecting with others in the community, or… read more

Hello! Welcome to myITPcenter. I'm here to help answer any questions you might have about living with ITP, whether it's about symptoms, treatments, connecting with others in the community, or navigating the site.

Is there something specific you'd like to know about or discuss today?

6 days ago
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How To Cure Petachiae

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I Have CLL, ITP And Liver Disease. My Doctors Do Not Want To Give Me Steroids Because Of My Liver. What Are Safer Options For Low Platelets?

A myITPcenter Visitor asked a question 💭

My CLL bmb showed minimal infiltration to treat. My oncologist hematologist seems disinterested in helping me.

My CLL bmb showed minimal infiltration to treat. My oncologist hematologist seems disinterested in helping me.

A myITPcenter Visitor

Neither of those work for me. But I've been able to get on drop tallette, but so far, I've been pretty rough with the fatigue fingers crossed.

Neither of those work for me. But I've been able to get on drop tallette, but so far, I've been pretty rough with the fatigue fingers crossed.

June 28
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Treatment

A myITPcenter Subscriber asked a question 💭
myITPcenter

What are the common treatments for ITP?

Several treatment options are available for managing ITP:

• Steroids to reduce inflammation
• Immunoglobulin therapy
• Thrombopoietin receptor agonists to… read more

What are the common treatments for ITP?

Several treatment options are available for managing ITP:

• Steroids to reduce inflammation
• Immunoglobulin therapy
• Thrombopoietin receptor agonists to help bone marrow produce more platelets
• Immunosuppressive medications to reduce immune system response

Side effects vary between medications and individuals, so it's important to discuss potential risks with your healthcare provider when starting any new treatment. In more severe cases, additional treatments may include:

• Splenectomy (removal of the spleen) - since the spleen produces antibodies that attack platelets
• Platelet transfusions - where donor platelets are injected into the bloodstream

Note that while splenectomy can be helpful, it may increase infection risk. Your doctor will help determine the most appropriate treatment path based on your specific situation.

June 8
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Has Anyone Tried Meditation?

A myITPcenter Visitor asked a question 💭
Self-Kindness When Struggling: 6-Minute Guided Meditation (VIDEO) Read Article...
myITPcenter

Yes! Many myITPcenter members have found meditation helpful for managing stress and difficult moments. A simple guided meditation focused on self-kindness can be particularly beneficial when dealing… read more

Yes! Many myITPcenter members have found meditation helpful for managing stress and difficult moments. A simple guided meditation focused on self-kindness can be particularly beneficial when dealing with challenging health situations.

Here's a simple meditation technique you can try:
- Find a comfortable position
- Close your eyes or lower your gaze
- Place a hand on your chest or hold your own hand
- Take a few deep breaths
- Acknowledge your feelings with phrases like "this is hard right now" You can also enhance your meditation practice by:
- Imagining others who understand your struggles supporting you
- Being gentle with yourself
- Using supportive phrases like "may I be kind to myself"
- Connecting with your breath
- Acknowledging that you're not alone in this journey

Remember, meditation is a personal practice - try different approaches to find what works best for you.

June 5
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Why Am I So Tired

A myITPcenter Subscriber asked a question 💭
myITPcenter

Fatigue is very common with ITP - up to 90% of people with the condition experience it. This isn't just normal tiredness, but rather excessive exhaustion that doesn't go away with rest. For children… read more

Fatigue is very common with ITP - up to 90% of people with the condition experience it. This isn't just normal tiredness, but rather excessive exhaustion that doesn't go away with rest. For children with ITP, fatigue may show up as irritability rather than just feeling tired.

The main reasons for ITP-related fatigue include:
- Low platelet counts (many report worse fatigue when platelets are low)
- Inflammation in the body
- Side effects from treatments like corticosteroids Here are some ways to manage ITP-related fatigue:

1. Focus on good sleep habits:
- Keep a consistent sleep schedule
- Limit phone use before bed
- Avoid long daytime naps
- Create a relaxing bedtime routine
- Consider using earplugs/eye mask

2. Try gentle exercise when you feel up to it - studies show it can boost energy levels and help with both physical and emotional wellbeing.

If fatigue is severely impacting your quality of life, discuss it with your healthcare provider as they may be able to adjust treatments or provide additional support.

June 5
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How Can I Deal With The Pain?

A myITPcenter Subscriber asked a question 💭
Can Rheumatoid Arthritis Cause ITP? Read Article...
myITPcenter

There are several first-line treatment options for managing ITP:

• Corticosteroids like prednisone
• Intravenous immunoglobulin (IVIG)
• Rituximab to block immune cells from destroying platelets
•… read more

There are several first-line treatment options for managing ITP:

• Corticosteroids like prednisone
• Intravenous immunoglobulin (IVIG)
• Rituximab to block immune cells from destroying platelets
• Thrombopoietin receptor agonists to boost platelet production
• Splenectomy in more severe cases
• Immunosuppressant medications

The right treatment depends on your specific situation and severity of symptoms. Over 80% of newly diagnosed patients see improvement with IVIG, while 60-80% respond well to corticosteroids initially. To effectively manage your condition:

• Work closely with your doctor to monitor symptoms and adjust treatment as needed
• Attend regular checkups for blood work and platelet count monitoring
• Take medications exactly as prescribed
• Report any new bleeding or bruising symptoms promptly
• Discuss vaccination needs with your healthcare provider
• Ask about which over-the-counter pain medications are safe to use, as some like NSAIDs can thin blood
• Avoid contact sports and high-risk activities that could cause injury

May 29
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Asking An Annie Question?

A myITPcenter Subscriber asked a question 💭
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Why Am I Always Tired?

A myITPcenter Subscriber asked a question 💭
myITPcenter

What causes fatigue in people with ITP?

Fatigue is extremely common in ITP, affecting up to 90% of people with the condition. While the exact cause isn't fully understood, there are several potential… read more

What causes fatigue in people with ITP?

Fatigue is extremely common in ITP, affecting up to 90% of people with the condition. While the exact cause isn't fully understood, there are several potential factors:

1. Low platelet counts - Many people report worse fatigue when their platelet levels drop
2. Inflammation in the body
3. Side effects from treatments like corticosteroids (prednisone, dexamethasone) How does fatigue manifest?

Fatigue in ITP is more than just being tired - it's an excessive tiredness that doesn't go away with rest. In children with ITP, fatigue may show up as irritability or grouchiness rather than just tiredness.

If fatigue is significantly impacting your quality of life, it's important to discuss this with your healthcare provider. They can evaluate your symptoms and potentially adjust your treatment plan to help manage the fatigue.

May 29
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