Recovery following your stem cell transplant: Information for people with autoimmune conditions, including multiple sclerosis (MS) and scleroderma

You will have a telephone consultation about two weeks after leaving hospital. A face-to-face appointment will be two to four weeks after that. If you need to see us sooner than this, we will arrange this.

You are likely to be discharged with the following medicines:

If you are using the nebuliser, you will need to come to the Supportive Care Unit every month to have it administered. 

When you run out of any other medicines listed above, your GP can provide you with a repeat prescription.

If you need a blood transfusion in the first two years after your transplant, you will need ‘irradiated blood’. This is blood treated with radiation to prevent transfusion-associated graft-versus-host disease.  

We will explain everything about irradiated blood and answer your questions. We will also give you an alert card to carry with you at all times.

You will need regular blood tests after you leave the hospital. They include: 

1. Full blood count  
2. Tests to check your kidneys, liver and bones 
3. Viral tests for Epstein-Barr virus (EBV), cytomegalovirus (CMV) and adenovirus. 

About the viruses: 

• EBV and CMV are common viruses from the herpes family. You may have been exposed to them if you have ever had a cold sore.  
• Adenovirus often causes respiratory infections.  

These viruses stay in your body for life. Your immune system usually keeps them under control, but they can reactivate when your immune system is weakened. This could be during the transplant and in the months after the transplant. If this happens, the viruses can cause complications such as:  

• Fever  
• Stomach issues  
• Problems with breathing or nervous system.  

These can be serious if not treated. Blood tests help us monitor the viruses and give you treatment early if needed. We will advise you how often you need these tests. This will depend on your health needs at the time and test results. You may need to continue to have the viral tests regularly if there are any signs of reactivation. 

Symptoms to look out for:

• Fever: Two readings over 37.5°C one hour apart or one reading of 38°C  
• Chills or sweats 
• Cough that doesn’t go away 
• Shortness of breath 
• Extreme fatigue or muscle aches 
• Bleeding: From gums or nose, in pee or poo, or small red dots on the skin or skin rash 
• Feeling dizzy or light-headed 
• Feeling sick or being sick 
• Constipation or diarrhoea 
• Pain when peeing 
• Sore throat, enlarged glands in your neck, or runny nose 
• Problems with vision: Such as floaters, blind spots, or blurry vision 

If you notice any of the symptoms listed above, call:  

• Stem cell transplant CNS on 07538 702196 (during office hours)  
• Urgent advice line on 07852 220900 (out of hours) 
• Switchboard on 020 3456 7890 (at any time) and ask for the haematology registrar on call.  

If you are suddenly unwell, go to your nearest Emergency Department (A&E) without delay. If possible, let us know as soon as you can where you are and what the problem is. We will then be able to contact the hospital you are in and organise transfer to UCLH if needed.

Recovery after transplant can take between three and six months. It’s important that you reduce your risk of infection during this period. You will need to shield during the first three months, starting from your Day 0 (when your cells were returned). This means that you should not visit any shops, restaurants, or other homes. 

After the shielding period ends, continue to take extra care and follow the advice below for the next three months:  

• Avoid crowded places and large gatherings 
• Avoid contact with anyone who is unwell especially if they have a cough, cold or flu 
• Avoid gardening
• Avoid handling cat litter 
• Wash hands often and always after touching pets 
• Shower or bathe daily. 

These steps will help to protect you from infection while your immune system recovers.

It’s normal to have a small appetite after your stem cell transplant. You may continue to feel sick or have other stomach problems for a few weeks, which can affect what you feel like eating. Try to remember that food is medicine too, and eating and drinking will help your body to heal and recover.  

While in hospital, we tried to keep your weight loss to a minimum. Once you are home, you can expect to regain any lost weight over the next few months.

How soon you can get back to work will depend on your recovery and the type of work you do. Fatigue will be a big challenge in the first three months after leaving hospital.  

• If you have a desk job and can work from home, you may be able to get back to work sooner.  
• If your job is physically demanding or has a high risk of infection (for example a school), you may need more time off.  
• Part-time working can be a good option until you feel stronger. 

We will provide any sick notes you need.

We advise against travelling abroad for the first three to six months after your transplant. Your immune system will be weak, and it’s important to stay close to a specialist centre in case you need medical care. If you’d like to travel abroad after this time, talk to your doctor before booking your trip.

It is usually safe to start driving once you feel well enough. If you’re unsure, check with your doctor or nurse, and contact DVLA for advice.

Fatigue is common during recovery, and it may take several months for your energy to return. Remember that recovery takes time so be patient with yourself.  

Tips to manage fatigue:

• Listen to your body. Take breaks and pace your activities throughout the day.
• Plan ahead. Try to save your energy for things you enjoy or tasks that must be done.
• Spread out activities that need a lot of energy instead of doing them all at once.
• Keep a fatigue diary. This can help you to see which activities make your fatigue better or worse. It can also help you plan your day.
• Accept offers of help from family and friends.
• Ask for support. If you are struggling to cope with your daily tasks, ask to speak to an occupational therapist. 

Fatigue can also affect your sleep, making it more difficult to manage. Sticking to a consistent bedtime routine can help with sleep problems:  

• Aim to go to bed and get up at the same time each day.
• Avoid drinks and food with caffeine close to bedtime.
• Spend time relaxing and try to avoid screen time before going to bed.
• Limit naps to less than one hour and set an alarm if needed. If you sleep too much during the day, this will affect your sleep at night. Having a good night sleep is more helpful for managing fatigue than daytime naps.

Staying active is one of the best ways to manage fatigue and support your recovery. Light to moderate physical activity or exercise can boost your energy and improve your overall wellbeing. 

We know that being physically active may seem impossible at first. Start small: 

• Avoid long periods of inactivity. For example, try not to sit or lie down for more than an hour at a time during the day.
• Stand up, step on the spot or walk regularly throughout your day.  

Gentle aerobic exercise, such as walking, can be a good way to start building up activity or exercise. Ask a friend or family member to join you while you gain confidence. A pedometer or step-counting app can be a good way to monitor your activity and track your progress. Try to walk further or for a bit longer each week. This can help to motivate you and encourage you to continue being active.

For more advice on physical activity, speak to a physiotherapist during your hospital stay.

• Continue to shower or bathe every day.
• Wash your hands before eating, preparing food and after going to the toilet.
• Keep your mouth clean and use any mouthwashes that have been prescribed for you. It may take a few weeks before your sense of taste returns to normal.
• Before any dental treatment, tell your dentist that you had a stem cell transplant so they can look out for signs of infection.

• Hair growth: Your hair will start to grow back a few weeks after leaving the hospital. The colour and texture may be slightly different, and your hair will be ‘baby fine’ at first. Use a gentle shampoo and massage your scalp during baths. This will help to stimulate your hair follicles.  
• Skin care: Your skin may feel more sensitive or dry after treatment. To help with this, use mild, unperfumed body washes and moisturisers. If you notice a rash, contact us for advice.  
• Sun protection: Your skin will be more sensitive to the sun for several months. To avoid sunburn, use sun cream with at least SPF 30. You should also cover up with clothing if you are out in the sun for long periods.

You can resume sex when you feel ready, as long as you maintain good hygiene and protect against STIs (sexually transmitted infections). Your doctor may advise avoiding certain types of sexual activity (oral, genital or anal) if your blood counts are low. So, check with them before going home. 

It is normal to have a low sex drive after treatment. Changes in your physical appearance and tiredness can affect your sex life. Talk openly with your partner about how you feel and explore other ways to show affection.  

Some of the medicines you have taken during treatment could harm a developing baby. To avoid pregnancy, use effective contraception for the first two years after your transplant. This includes condoms or dental dams, along with other birth control methods.  

If you have any questions about your fertility, please talk to your doctor.

Three months after the transplant you will need the following vaccinations: 

• Covid-19 (you will need to restart the whole course because you are considered to never have been vaccinated against it) 
• Flu  
• Pneumococcal (to protect you against some types of bacterial infections, such as pneumonia and meningitis).

Stem cell transplant CNSs

Tel: 07538 702196 (Monday to Friday, 9am to 5pm) 

Please leave a message if no one is available to answer your call. We will call you back as soon as we can. 

Admin queries

Tel: 020 3447 7359 (Monday to Friday, 9am to 5pm) 

Out of hours for urgent medical advice

Tel: 07852 220900 

MS Society

Tel: 0808 800 8000 

Website: mssociety.org.uk 

Scleroderma and Raynaud’s UK

Tel: 020 3893 5998 

Email: info@sruk.co.uk 

Website: sruk.co.uk 

Anthony Nolan

Tel: 0303 303 0303 

Email: patientinfo@anthonynolan.org 

Website: anthonynolan.org 

University College London Hospitals NHS Foundation Trust cannot accept responsibility for information provided by external organisations.