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.

myGVHDteam

How can GVHD affect the lungs?

GVHD can affect the lungs when donor cells attack healthy lung tissue, triggering chronic inflammation that damages the airways. Over time, this inflammation can lead… read more

How can GVHD affect the lungs?

GVHD can affect the lungs when donor cells attack healthy lung tissue, triggering chronic inflammation that damages the airways. Over time, this inflammation can lead to scarring and narrowing of the small airways, making breathing more difficult.

About 14 percent of people with chronic GVHD develop bronchiolitis obliterans syndrome (BOS), the most common lung complication. Other conditions like organizing pneumonia and interstitial lung disease can also occur.

Common symptoms include:
* Persistent dry cough lasting more than two to four weeks
* Shortness of breath or difficulty breathing
* Chest tightness or trouble breathing deeply
* Wheezing or crackling sounds when breathing

Some people with BOS may not notice symptoms right away—about 20 percent have no symptoms initially. As the condition progresses, symptoms typically worsen and can make physical activity harder, leading to fatigue and reduced stamina.

If you notice any new or worsening breathing problems, contact your healthcare team immediately. Early diagnosis and treatment can help prevent further lung damage and maintain quality of life.

myGVHDteam

What treatments have helped lessen symptoms of ocular GVHD 10 months post-stem cell transplant while using artificial tears and cyclosporine drops?

You're already using two key treatments for ocular… read more

What treatments have helped lessen symptoms of ocular GVHD 10 months post-stem cell transplant while using artificial tears and cyclosporine drops?

You're already using two key treatments for ocular GVHD. Here are additional options that may help lessen your eye symptoms:

Prescription Options:
* Steroid eyedrops like prednisolone to reduce inflammation
* Topical tacrolimus ointment (Protopic) for inflammation control
* Oral medications like pilocarpine (Salagen) or cevimeline (Evoxac) to increase tear production
* Autologous serum eye drops made from your own blood, which contain proteins that help control inflammation

Over-the-Counter and Home Remedies:
Your ophthalmologist can suggest specific approaches to prevent irritation and keep your eyes moist between prescription treatments.

Since you're 10 months post-transplant, it's important to work closely with your ophthalmologist to adjust your treatment plan based on how your symptoms respond. They can determine if adding any of these options would be beneficial for your specific situation.

myGVHDteam

Can coconut oil be used on the face during stage 1 GVHD?

Coconut oil can be a gentle, moisturizing option for facial skin during GVHD, but it's important to check with your dermatologist first. Warm… read more

Can coconut oil be used on the face during stage 1 GVHD?

Coconut oil can be a gentle, moisturizing option for facial skin during GVHD, but it's important to check with your dermatologist first. Warm coconut oil is mentioned as a soothing treatment option for scalp care in GVHD, which suggests it may be gentle enough for sensitive skin.

When choosing products for your face during GVHD, fragrance-free moisturizers are generally recommended. Thicker creams and ointments tend to work better than lotions for locking in moisture, especially when applied to damp skin after washing.

Since GVHD can make your skin more sensitive and prone to irritation, it's best to avoid harsh products and stick with gentle options. Your dermatologist can help you determine if coconut oil is appropriate for your specific situation and recommend the best skin care routine for stage 1 GVHD.

Remember to protect your skin from UV light by wearing sunscreen and protective clothing, as this is essential for managing GVHD symptoms and reducing skin cancer risk.