Self-Care for Mast Cell Diseases
With luck, you have found some medications that help you manage your mast cell disease, but there may be more you can do on your own to feel better. Your doctors see you for a maximum of several hours a year, but you live with your disease every day. You are in a good position to be a detective to discover what makes you feel worse and what makes you feel better, and you can do a lot to keep yourself safe. Here are some tips we have collected from patients over the years. Remember that not all patients are the same, so some of these suggestions may not be right for you.
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1. EMERGENCY MEDICATIONS
Carry them with you.
Many patients feel less anxious about their disease when they have EpiPens (or other epinephrine auto injector, such as Jext or Emerade) and other rescue medications with them. Carry them in something that is easily identifiable so that helpers can find them in an emergency.
Find a carrier that works for you: a bright zipped case in your handbag, briefcase, or nappy bag; a bum bag or something similar. Keep EpiPens out of the sun. Consider an insulated bag if you know you’ll be out in the heat
Get in the habit of checking that you have them before you leave home. Use Post-It notes to remind yourself when you’re getting in the habit.
Include Rescue Medications.
For some patients an extra dose of Hl blockers (antihistamines like cetirizine, piriton etc.) and HZ blockers (ranitidine, famotidine) can help prevent a more serious attack, so ask your doctor if you should carry those with you alongside the EpiPens.
Two EPI-PENS
Mast cell disease experts generally recommend that patients carry TWO EPI-PENS at all times. If you need one dose of epinephrine you may well need two before you are in hospital. If your GP is hesitant, ask your consultant for support.
Extra care if you’re on a Beta Blocker
If you are on a beta-blocker (a medication used for heart issues) you should ask your doctor about whether you ought to carry a glucagon pen to be used before you use an epi-pen. The beta blocker can make the EpiPens less effective and the glucagon helps circumvent the problem.
2. MEDICAL ID JEWELLERY
A medical alert bracelet speaks for you in a medical emergency when you can’t speak. You will want to find one that’s comfortable and long-wearing. Some companies provide only the jewellery. Medic Alert also provides a phone service where the A&E can ring to get information about your regular medications, your doctors’ contact information etc. Some patients find that a Medic Alert bracelet gives them more credibility in a circumstance where A&E personnel aren’t sure what to do.
3. TAKING REGULAR MEDICATIONS
Consider using a pill organiser with boxes for each day of the week. It is easiest to use one with separate boxes for each time of day you take medications. When mast cell disease patients are reacting, they may be forgetful, so very important that you can see whether you’ve taken your regular medications on schedule. If you take meds while out and about, develop a system of where you’ll put them. Also consider setting a timer on your watch or smartphone so you take them.
Unless instructed by your doctor, DO NOT STOP TAKING YOUR MEDICATIONS just because you’re feeling better. You may well be feeling better because of them!
Some medications work better on an empty stomach and others work better when taken with food. Ask your doctor whether there is information about the best way to take your meds.
4. TRYING NEW MEDICATIONS
If your doctor has advised you to try a new medication to treat your mast cell disease, ask if you should start slowly. Sometimes you can try a single dose, or part of a dose (if allowed-some pills and most capsules must be taken whole because of the coating/capsule helping to deliver the medication to the right part of your GI tract) first. Always have a responsible person nearby when you try a new medication so that if you react you have someone to help you. If you’ve been given epi-pens, keep those to hand as well.
If you are prescribed several new medications at once, ask about starting them one at a time. That way you will know which medications work and which you might have a problem with.
If you are prescribed a medication by someone other than a mast cell expert, it is ideal to check with your mast cell disease consultant before you take it. Many GPs will not know what medications are likely to set off your mast cell disease. Even the experts cannot know for certain how your body will react, so always test new medications when you have a competent adult nearby and when you are not too far from emergency health services. The same applies for getting immunisations, which are best done in a hospital setting rather than a pharmacy clinic or GPs office.
5. PAYING FOR MEDICATIONS
Patients diagnosed with any form of Systemic Mastocytosis qualify for free medications from NHS England because of its status as a neoplastic disease (one that involves the overproduction of cells). If you do not qualify for free medications and you take more than 2 medications a month, you will benefit from getting a pre-payment certificate that allows you to pay one fixed fee for the year. You can apply through NHS website.
6. AT THE DOCTOR
Keep in mind that once you’ve read a few articles about mast cell disease, you have probably read more about it than your GP has. Our diseases are rare and you may be the only patient your GP ever sees with it. If your GP is not too open to your information, try being gentle but firm about what you need and why you need it. Use information from our group, the Guys and St. Thomas’ Clinic or from your consultant to support your requests. Bring along a trusted person with you as an advocate. This can be helpful, especially if you are feeling muddled by ill health or if you feel emotional about your disease or your treatment. Keeping a diary and taking photos of symptoms can help you explain more clearly what you’re experiencing.
7. AT THE DENTIST
Visits to the dentist can be challenging because there are possible triggers in the environment and in the procedures. If you carry Epipens, bring them to your appointment and be sure you’ve taken your regular medications for your mast cell disease.
8. AT THE A&E
If you are a regular visitor to the A&E, talk with your consultant about preparing a protocol for what should be done there for you. If your consultant is willing, take a phone number so that the A&E doctors can be in touch with the consultant if you are in crisis. If you need frequent ambulance trips, you might approach your local paramedics to talk about your condition and give them information about how they can help you in a crisis.
9. STRESS
Emotional stress can trigger mast cells to degranulate (release the chemicals stored inside them) and can be a direct trigger of a mast cell reaction. Learning to be aware of the early signs that you are feeling stressed (Are your shoulders raised? Teeth clenched? Muscles tight?) can help you stop the stress reaction before it gets started. If you notice your signs of stress, take a deep breath through your nose and and blow it through your mouth. Try dropping your shoulders and jaw. Take some long slow breaths. Regular meditation is a way to get better at managing stress over the long term. There are good smartphone apps that teach meditation such as Headspace.
10. FOODS
Not all mast cell disease patients have foods that trigger them, but many do. If you feel worse after meals or after eating particular foods, start by keeping a diary, noting how you feel after each meal or snack. If you’ve narrowed it down to a few things, you can test one at a time by going off it for several days and then trying it again (if your reaction wasn’t severe!). If you react to a prepared food, read the label and see if you can figure out which ingredients cause the trouble. (It may not be wheat, but rather the preservative in your bagged bread that is the culprit, for example). Being a good detective can be worth it, so be persistent in testing and writing down what you eat and how you feel. Some people find that rotating their foods that are ok (eating a given food only after several days have passed) can help prevent reactions to those foods.
Some people find a low histamine diet helpful, while others don’t. You could experiment with one to see if it helps you. There are many lists of low histamine foods on the internet, and the lists vary a bit some some experimentation may be necessary.
11. TEMPERATURE AND SUN CONTROL
Mast cells can be triggered by extreme temperatures and by changes in temperature. Dressing in layers can allow you to maintain your temperature in a comfortable range in the ever-changeable British weather. Pay attention to your body and add or remove a layer when you’re just beginning to feel uncomfortable. Warm but not too warm is often the best temperature for baths and showers.
Some people react not only to heat, but also to exposure to the sun. Floppy hats, umbrellas and loose fitting, light-coloured clothing (or SPF shirts) can be a help.
NOTE: Jumping into cold water can cause anaphylaxis if you have a mast cell disease. It’s more painful in the moment, but easing into water for bathing is a safer strategy.
12. HOUSEHOLD CLEANERS AND PERFUMES
Patients are often triggered by the smell of cleaning chemicals and perfumes. This includes air “fresheners,” essential oil infusers and bathroom sprays. Consider removing as many of these products from your daily life as possible. For cleaning, bicarb and vinegar (if tolerated) can do a good job at many cleaning jobs. Look online for “green cleaning” tips. See if you can find non-perfumed alternatives to laundry soaps and beauty products. Health food stores can be a source of them (but have someone sniff them for you as they aren’t all scent-free). If you are having people over to your house it is ok to ask them not to wear perfume or cologne. You are not just expressing a preference; it’s a health issue. If you have partner you may need to help him or her find scent-free products. You may have to do the legwork and toss a few bottles of things that don’t work (or give them away), but it can be worth it if you feel better every day.
13. ALCOHOL
Some mast cell patients can tolerate drinking alcohol, but many cannot. If alcohol is one of your triggers, think through how to enjoy your social occasions where others will be drinking. Bring along your favourite non-alcoholic drink, or plan outings to places that don’t involve booze.
14. PACING YOURSELF
Mast Cell Disease can be frustrating because it is unpredictable. Planning with family and friends can be difficult if you don’t know how you’re going to be feeling. Consider planning gatherings from which you have an easy escape if needed. Maybe not the whole day away on a coach tour, but a few hours where you can leave by car if needed and where there’s an easily accessible loo. A trip to the seaside where you know you can be out of the sun and heat rather than one where you have no choice etc. Everyone will have to adjust to the new reality, and it can take time.
Remember that taking care of your body by getting enough sleep, eating foods that work for you, and avoiding stress will help you feel better. Try to make these things a priority so that you have stamina to enjoy life.
15. EXERCISE
We all know that exercise helps keep our bodies healthy and strong. With mast cell disease exercise sometimes makes us feel worse, so it can be hard to know what to do.
Some tips: try to manage your temperature while you’re exercising by wearing layers and exercising where you can keep cool. Bring a battery operated clip-on fan to the gym and put it on the treadmill! Bring a spray bottle and mist yourself.
If vigorous aerobic exercise makes you feel unwell, go for gentle exercise, such as walking or swimming. Keeping strong is also important and lifting light weights, doing pilates or yoga can all achieve that goal.
As mastocytosis patients (and maybe MCAS patients) are at risk of osteoporosis, we should all be doing some weight-bearing exercise (walking, running, jumping) to keep our bones healthier. Lifting light weights can also promote bone health.
Keep trying different forms of exercise until you find one that works. Gyms can be troublesome due to cleaning products, temperature control, swimming pool fumes, off-gassing rubber floors and other people’s perfumes. You can exercise at home or outdoors if a gym isn’t right for you. There are many online sources of exercise videos available, so try some until you find one that works.
Be patient with yourself as well, recognizing that some days will be better than others.
And CARRY YOUR EPI-PENS when you’re exercising in a bum bag, Flip Belt, leg holster etc.
16. KEEPING SKIN HAPPY
If you have lesions from mastocytosis, or tend toward hives with your MCD, one thing you can do to minimize irritation and itching is to have good regular skin care. Keeping skin well moisturized with a safe product can help. Loose clothing and natural fibers can also help prevent itching.