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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Skin and Joints

Radiation can cause long-term discoloration and aging of the skin.35 Chronic GVHD can also affect the skin in a variety of ways, causing blotchy, discolored skin, a dry, itchy rash, poor wound healing, or sometimes a tightening and thickening of the skin, known as sclerosis.^[36] Sclerosis varies in its severity and can remain confined to the skin or it can spread across joints and tendons. This tightening of the joints and tendons can limit your range of motion and can make it difficult to bend and straighten your arms, legs, and other joints.

I can no longer stretch out my arms because of all the skin GVHD, and certain areas of my skin feel slightly numb.

GVHD can also lead to inflammation called lichen planus, which can appear as a rash, lesions, or flat, purplish bumps. This inflammation may or may not be itchy or painful. GVHD can also damage the sweat glands, leading to heat intolerance. Skin injury and scarring may lead to hair loss all over the body and premature graying. Nails may become more brittle or may have ridges or cracks. Skin GVHD should be examined by a specialist and treated promptly to prevent its spread and minimize damage.

My skin GVHD migrates around my body with no rhyme or reason. A few years ago, I had it mostly on my back. Then it moved to my hands and shins where it manifested as painful, itchy blisters. It looked and felt like a bad case of poison oak. Some days I wanted to cut my fingers off to stop the itching. And now my hands are much better, but I have it on my upper arms and shoulders.

Before the transplant, I loved hot weather. Now that my sweat glands no longer function well, I wilt in the slightest heat. I try to avoid going out when it is hotter than 80 degrees.

Caring for Your Skin and Joints

Radiation and skin GVHD, as well as some of the medications to treat GVHD, may make your skin more sensitive to the sun and more susceptible to dryness. Even long after treatment and after the GVHD is resolved, you may continue to experience skin sensitivity. It is therefore important to:

• Regularly use a sunscreen with an SPF of 30 or more
• Avoid prolonged sun exposure and wear long sleeves, pants, and a hat
• Use an oil-based moisturizing lotion regularly, especially after bathing
• Avoid very hot showers and baths
• Use humidifiers to moisten the air in your home or office, particularly in cold winter climates
• Stretch regularly to maintain flexibility.

After spending a day kayaking, my skin GVHD worsened significantly, and I needed to go up on my steroids for months. Much as I love kayaking, it was not worth it. Now I dress like the ultra-orthodox making sure to wear longsleeved shirts and pants and a wide-brimmed hat when I am outdoors in the sun. Luckily, I look good in hats!

Topical Treatments and Systemic Immunosuppressants

Topical steroids are often used for mild skin GVHD. They vary in strength and can cause the skin to become thinner and more fragile. Check with your health care provider about the strength of the steroid cream you are applying and how often and where it can be applied. Strong steroids should not be applied to delicate areas, such as the face, where the skin is more absorbent and fragile. For such areas, steroid sparing creams can be used effectively.

If topical creams are not sufficient, then systemic immunosuppressants such as prednisone, cyclosporine or tacrolimus, or mycophenolate mofetil (MMF) are often used. Although these can be very effective, they also have various side effects and can weaken your immune system’s ability to fight off infection. The medications mentioned are not intended as recommendations. Discuss any questions about medications with your physician.

Extracorporeal Photopheresis (ECP)

Extracorporeal photopheresis (ECP) is a promising therapy for chronic skin GVHD. In this procedure, blood is removed from your body, treated with a chemical and radiation to kill certain white blood cells, and is then returned to your body. The mild side effects of ECP include an intermittent drop in blood cell counts. Surprisingly, this treatment does not seem to cause immunosuppression and has the added benefit of being much less toxic than other treatments, since the exposure to radiation takes place outside of the body. The main drawback of the treatment is that it requires a substantial time commitment and several months of therapy before it can be determined whether or not it is effective. Although ECP is often covered by insurance, the amount you would be expected to pay should be discussed and considered prior to beginning treatment.

I found the benefit of ECP to be marginal. I did not experience much improvement in my eyes, but my blotchy skin cleared up quite a bit.

For a 16-gauge size needle, ECP doesn’t hurt that bad. The nurses apply a numbing cream and, at this point, I hardly feel the needle any more.

The ECP is a slow process, but it has been very effective for me and has really improved my range of motion and my skin in general.

Psoralen Ultraviolet A Radiation (PUVA) Treatment

PUVA treatments are also used to treat chronic skin GVHD. In this treatment, a substance called psoralen (or psoralene) is used to sensitize your skin to ultraviolet radiation. The skin is then exposed directly to UV light. Although PUVA is often effective in treating skin GVHD, it also increases an individual’s risk of developing some forms of skin cancer.

Exercise and Stretching to Maintain Skin and Joint Flexibility

People with sclerosis (thickening and hardening of the skin) can benefit from stretching exercises under the direction of a physical or an occupational therapist to increase their range of motion. Exercising regularly will improve circulation to the affected areas and will help you maintain and possibly increase your range of motion. Discuss your exercise plans with your physician prior to beginning a workout routine.

Massage

Individuals with fascial sclerosis, which is a hardening of the connective tissues, can benefit from a deep tissue massage called myofascial release massage that incorporates stretching and massage of connective tissues (fascia).^[22]

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