myGVHDteam

A dry cough with no mucus can be a lung-related symptom of GVHD, sometimes linked to a condition called bronchiolitis obliterans syndrome (BOS), which affects the airways. The good news is that yes… read more

A dry cough with no mucus can be a lung-related symptom of GVHD, sometimes linked to a condition called bronchiolitis obliterans syndrome (BOS), which affects the airways. The good news is that yes, it can be treated, though there's no single standard approach — treatment is tailored to each person.

Steroids like the ones being taken are typically the first line of treatment. However, if symptoms aren't improving, there are additional options a doctor might consider, including:

- Inhaled corticosteroids to target the lungs more directly
- Medications like azithromycin or montelukast combined with inhaled steroids to help prevent worsening
- Systemic treatments such as ruxolitinib (Jakafi), ibrutinib (Imbruvica), or belumosudil (Rezurock)
- Extracorporeal photopheresis (ECP), a non-surgical procedure that helps reduce inflammation It's really important to let the care team know about this dry cough if they aren't already aware, especially since lung involvement in GVHD can progress. Getting on top of it early can help prevent more serious complications down the line.

myGVHDteam

First off, 10 months in — that's no small thing. Navigating chronic GVHD at 20 takes real strength, and it makes complete sense to want to connect with others on the same medication.

Since axatilimab… read more

First off, 10 months in — that's no small thing. Navigating chronic GVHD at 20 takes real strength, and it makes complete sense to want to connect with others on the same medication.

Since axatilimab is relatively new, shared patient experiences are still building up. Based on what's been reported so far, the known side effects include:

- Infections
- Muscle and joint pain
- Diarrhea
- Headache
- Fever
- Nausea Managing these side effects really comes down to open communication with your care team. If any of these feel unmanageable or are getting worse, let them know right away — they can adjust your treatment plan.

It's also worth noting that axatilimab continues until side effects become too severe or GVHD symptoms return, so tracking how you feel between infusions can be really helpful data to share with your doctor.

Other myGVHDteam members taking Niktimvo may have shared their own experiences in the community discussions — that could be a great place to find people in a similar situation to yours.

myGVHDteam

Yes, GVHD can definitely affect the lungs and cause respiratory issues. Lung problems occur in up to 70% of people who've had an allogeneic stem cell transplant, and chronic GVHD is a major… read more

Yes, GVHD can definitely affect the lungs and cause respiratory issues. Lung problems occur in up to 70% of people who've had an allogeneic stem cell transplant, and chronic GVHD is a major contributing factor.

The most common lung complication is a condition called bronchiolitis obliterans syndrome (BOS), which affects about 14% of people with chronic GVHD. It causes inflammation and scarring in the small airways, making breathing harder over time. Symptoms to watch out for include:

- A dry cough lasting more than 2–4 weeks
- Shortness of breath, especially during activity
- Chest tightness or difficulty breathing deeply
- Wheezing

It's worth knowing that about 20% of people with BOS have no symptoms at first, so regular monitoring is really important. Some risk factors for developing lung complications include being older at the time of transplant, having a donor tissue-type mismatch, or having had a respiratory infection within the first 100 days after transplant.

If any new or worsening breathing symptoms are noticed, reaching out to a care team right away is strongly recommended. Early treatment can help prevent further damage and protect quality of life.

myGVHDteam

What a caring grandparent you are for staying on top of this. Given your granddaughter's GVHD history, it's worth reaching out to her healthcare team now — there's no need to wait.

GVHD can affect… read more

What a caring grandparent you are for staying on top of this. Given your granddaughter's GVHD history, it's worth reaching out to her healthcare team now — there's no need to wait.

GVHD can affect hormone production in the ovaries, which may delay or disrupt the start of menstrual cycles. This is sometimes linked to a condition called ovarian insufficiency, where the ovaries don't produce enough hormones to support normal development. Here are some signs that make it especially important to speak with her doctor soon:

- She is 15 and has not yet started her period
- She has a history of BMT and GVHD
- She may be experiencing other symptoms like hot flashes or changes in mood or energy

Her pediatrician and transplant specialists can work together to assess her hormonal development. Some treatments are specifically recommended after puberty, so getting an evaluation now can help determine the right next steps.

Don't hesitate — early support can make a real difference in her long-term health and well-being.

myGVHDteam

How should chronic GVHD be graded when multiple organs are affected?

Based on your symptoms, your GVHD appears more complex than "mild." Chronic GVHD is graded as mild, moderate, or severe based on… read more

How should chronic GVHD be graded when multiple organs are affected?

Based on your symptoms, your GVHD appears more complex than "mild." Chronic GVHD is graded as mild, moderate, or severe based on how many organs are affected and how much it impacts your daily function.

Your situation suggests moderate to severe disease because:

* You have multiple organs involved (eyes, mouth, gut, joints/fascia)
* Severe dry eye causing significant functional impairment
* Unable to return to work due to symptoms
* Need for ongoing immunosuppressive therapy

Mild chronic GVHD typically affects one or two organs without significant functional impairment. Moderate disease involves at least three organs or causes moderate functional issues. Severe disease leads to extensive organ involvement or serious functional impairment that significantly limits daily activities.

The fact that you can't work and have severe eye symptoms that affect your quality of life suggests your overall grade is likely moderate or severe, even though individual organs may vary in staging. Each affected organ gets staged separately from 0-3:

* Stage 0: No symptoms
* Stage 1: Mild symptoms that are noticeable but manageable
* Stage 2: Moderate symptoms affecting daily life
* Stage 3: Severe symptoms causing significant disability

Your individual organ staging might look like:

* Eyes: Stage 3 (severe dry eye with significant disability)
* Mouth: Stage 2 (moderate, improved with Jakafi)
* Gut: Stage 0-1 (controlled with treatment)
* Joints/fascia: Stage 2 (moderate problems requiring physical therapy)

It's frustrating when local expertise is limited. Consider seeking a second opinion from a GVHD specialist, even if it requires telemedicine consultation with centers that have more experience managing complex chronic GVHD cases.