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Have You Experienced Nail Changes Due To Chronic GVHD? What Was The First Symptom You Noticed?

By myGVHDteam β€’ 2 answers
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For Those Living With Chronic GVHD, What Strategies Have Helped You Manage Your Symptoms Day-to-day?

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Can I Receive ONLY E Mail That Concerns CLL?

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I've Getting Itchy Bumpy Rash For 6 Months I'll Get Itchy , Scratch ,and Then It Gets Red And Hot And Then Goes Away

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14 questions

I've Getting Itchy Bumpy Rash For 6 Months I'll Get Itchy , Scratch ,and Then It Gets Red And Hot And Then Goes Away

A myGVHDteam Visitor asked a question πŸ’­

It moves after the scratching and hot red skin and bumps just move to a another area of my body wakes me up and from scratching starts to bleed . Now tongue gets ulcerated and tongue also gets larger and maje it hard to to talk ? Any ideas anyone so out of answers

It moves after the scratching and hot red skin and bumps just move to a another area of my body wakes me up and from scratching starts to bleed . Now tongue gets ulcerated and tongue also gets larger and maje it hard to to talk ? Any ideas anyone so out of answers

myGVHDteam

What could cause an itchy, bumpy rash that moves around the body along with tongue ulcers and swelling after a stem cell transplant?

The symptoms you're describing sound consistent with GVHD… read more

What could cause an itchy, bumpy rash that moves around the body along with tongue ulcers and swelling after a stem cell transplant?

The symptoms you're describing sound consistent with GVHD affecting both your skin and mouth. The itchy, moving rash that gets red and hot is a common feature of GVHD skin involvement. The fact that it's been persistent for 6 months and causes bleeding from scratching suggests this needs medical attention.

Your tongue symptoms are particularly concerning. GVHD can cause:
- Painful ulcers on the tongue
- Swelling that makes talking difficult
- Increased sensitivity

These oral symptoms appear in 45-83% of people with chronic GVHD and are often among the first signs. It's really important to contact your transplant team or doctor right away about these symptoms, especially since:
- The rash is severe enough to bleed
- Your tongue swelling is affecting your ability to speak
- Symptoms have persisted for 6 months

Treatment typically starts with topical steroids for skin GVHD. For mouth symptoms, doctors may prescribe special mouth rinses, medications, or saliva substitutes to help with healing and pain relief.

Don't try to manage this alone - your medical team needs to evaluate whether this is GVHD flaring or something else requiring immediate treatment.

5 days ago
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Can Autologous Stem Transplants Develop This?

A myGVHDteam Visitor asked a question πŸ’­
myGVHDteam

No, GVHD only occurs with allogeneic stem cell transplants (transplants using donor cells from another person). GVHD develops when the donated immune cells (the graft) identify the recipient's healthy… read more

No, GVHD only occurs with allogeneic stem cell transplants (transplants using donor cells from another person). GVHD develops when the donated immune cells (the graft) identify the recipient's healthy cells (the host) as foreign invaders and attack them.

Since autologous transplants use your own stem cells, there is no risk of GVHD because your immune cells recognize your own tissues as "self" rather than foreign.

October 11
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What About A Bone Graft For A Dental Implant?

A myGVHDteam Visitor asked a question πŸ’­

Several years later I developed Multiple Myeloma. I also have been battling necrotic bone abscesses in the same area.

Several years later I developed Multiple Myeloma. I also have been battling necrotic bone abscesses in the same area.

8 Conditions Related to Graft-Versus-Host Disease: Possible Complications and Comorbidities Read Article...
A myGVHDteam Visitor

What I'm asking is: did I develop GVHD by getting a dental bone graft, and then getting MM?

What I'm asking is: did I develop GVHD by getting a dental bone graft, and then getting MM?

October 11
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Can I Receive ONLY E Mail That Concerns CLL?

A myGVHDteam Visitor asked a question πŸ’­
8 Conditions Related to Graft-Versus-Host Disease: Possible Complications and Comorbidities Read Article...
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What If You Have Celiac In Addition To Multiple Myeloma?

A myGVHDteam Visitor asked a question πŸ’­
GVHD Diet: 5 Foods To Eat and 4 To Avoid Read Article...
myGVHDteam

Based on the provided search results and instructions, I cannot provide specific guidance about celiac disease or multiple myeloma. Since you have GVHD, it would be best to focus your questions on… read more

Based on the provided search results and instructions, I cannot provide specific guidance about celiac disease or multiple myeloma. Since you have GVHD, it would be best to focus your questions on managing GVHD symptoms and treatment. Please consult with your healthcare team about managing any additional health conditions alongside your GVHD.

The most important thing is to keep your healthcare team informed about all of your medical conditions so they can develop an appropriate treatment plan that takes everything into account.

August 9
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What Is Gvhd

A myGVHDteam Visitor asked a question πŸ’­
myGVHDteam

GVHD (Graft-Versus-Host Disease) is a condition that can affect multiple organs in the body following a transplant. It can be acute or chronic, and in some cases may become life-threatening. While… read more

GVHD (Graft-Versus-Host Disease) is a condition that can affect multiple organs in the body following a transplant. It can be acute or chronic, and in some cases may become life-threatening. While doctors previously classified GVHD based on timing after transplant, current guidelines focus more on the type and severity of symptoms. Common symptoms of GVHD include:

β€’ Skin issues - rashes, color changes, blistering
β€’ Eye problems - dryness, irritation
β€’ Mouth symptoms - sores, ulcers
β€’ Liver problems - jaundice
β€’ Gastrointestinal issues - diarrhea, abdominal pain
β€’ Lung problems - shortness of breath, dry cough
β€’ Joint/muscle symptoms - pain, swelling, stiffness
β€’ Genital area changes - discomfort, changes in function

The severity can range from mild to severe depending on how many organs are affected and the intensity of symptoms.

July 12
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My Numbers For My Tumor Markers 4 Weeks Ago Was 12.2, No Chemo(Revilimid) For 3 Weeks, Eye Surgery. Numbers Are 7.7 Now. Has Anybody Had T

A myGVHDteam Visitor asked a question πŸ’­
A myGVHDteam Visitor

The information is so helpful,but would like it to be elaborated further for students doing Research.
Regards.

The information is so helpful,but would like it to be elaborated further for students doing Research.
Regards.

June 11
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What Is GVHD?

A myGVHDteam Subscriber asked a question πŸ’­
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Will Rezurock Reduce The Damage From GVHD Or Stop It?

A myGVHDteam Subscriber asked a question πŸ’­
How GVHD Affects the Lungs: What You Need To Know Read Article...
A myGVHDteam Subscriber

Yes, Rezurock (belumosudil) can help reduce GVHD damage! It works by blocking specific inflammatory pathways that cause GVHD symptoms. In clinical trials, about 75% of patients saw improvement in… read more

Yes, Rezurock (belumosudil) can help reduce GVHD damage! It works by blocking specific inflammatory pathways that cause GVHD symptoms. In clinical trials, about 75% of patients saw improvement in their symptoms within 6 months. While it may not completely stop GVHD, it can significantly improve quality of life. Always take it exactly as prescribed and keep regular check-ups with your doctor to monitor progress.

April 24
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For Those Living With Chronic GVHD, What Strategies Have Helped You Manage Your Symptoms Day-to-day?

myGVHDteam asked a question πŸ’­
GVHD Diagnosis: Symptoms, Testing, and Confirmation Steps Read Article...
A myGVHDteam Subscriber

Here are some practical day-to-day management strategies for chronic GVHD:

1. Stay hydrated and maintain good skincare routines for skin GVHD
2. Use artificial tears and avoid dry/windy conditions… read more

Here are some practical day-to-day management strategies for chronic GVHD:

1. Stay hydrated and maintain good skincare routines for skin GVHD
2. Use artificial tears and avoid dry/windy conditions for eye symptoms
3. Practice good oral hygiene and use prescribed mouth rinses
4. Keep a symptom diary to track flares and triggers
5. Follow medication schedules carefully
6. Stay active within your limits
7. Join support groups to connect with others

Always work closely with your transplant team, as they can adjust your treatment plan based on your specific symptoms.

April 24
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