Keeping Medications Cold While Traveling

rp_Medication-Travel-Cooler-Bag-300x300.jpgSome medications commonly used for systemic autoinflammatory diseases, not only must be refrigerated, but kept at a very specific temperature range. Although traveling with your medications does add an extra thing to plan for, it should not prevent you from traveling.

Check your medication’s information sheet to determine the optimal temperature range. If you do not have this information, ask your pharmacy, or call the patient assistance number that is listed on the medication box. Biological medications usually have a very specific and narrow temperature range they need to be maintained at. Write this temperature range down and carry it with you so you don’t forget.

medicine cooler bagUse a Cooler or Insulated Medication Travel Bag

Keep the medication in a cooler filled with ice packs or gel packs. Ice packs or gel packs you pre-freeze are better than using just ice because they won’t turn to water and get into your medication. However, you can also use ice when needed. Put the packs into sealed freezer bags just in case they do leak. If you must use ice, also put that into freezer bags. In some cases, you may not have access to ice or a freezer to refreeze your gel packs. A good backup solution is to buy frozen fruits or vegetables at the store to use in your cooler, if you cannot get ice.

You can buy the insulated medication bag like the one pictured here on Amazon, but some prefer to use regular travel coolers or insulated lunch bags. Click here to see cooler recommendations from patients in the Autoinflammatory Alliance community.

keep Medications Cold While TravelingGet a Refrigerator Thermometer

Having a thermometer will help you monitor your medication’s temperature. Medical coolers or insulated packs may come with a thermometer built in. If yours does not, buy a freezer/refrigerator thermometer to keep in the cooler. This digital thermometer has a remote sensor so you can keep an eye on the temperature without opening the bag.

Keep in Mind the Location of the Cooler

Be conscious of where you set your cooler with the medication down. Do not leave it in a hot car or direct sun. Even the best of coolers will heat up in the car or in direct sunlight. Keep it in cool dark locations or with you at all times.

Hotels

Do reserve hotel rooms that have a refrigerator in the room. You may have to call individual hotels before you travel to ensure you get a room with a refrigerator. Check the temperature of the refrigerator when you get there and read how it operates. Many hotel room refrigerators do not cool down enough for biological medications and some have an energy saving mode where they shut of after several hours. It’s bet to also bring a cooler with you or be prepared with bags to use ice to keep your medications cool as a back up plan.

camping with medicationsCamping Tips

Camping presents it’s own set of challenges, but it’s not impossible to camp with your medication. If you have the means, get a refrigerator for your camping trailer. This is the easiest solution.

You can also buy coolers that plug into your vehicle’s 12-volt plug. However, many only cool to a maximum temperature difference compared to the outside temperature and this may not keep your biological medication at a proper stable temperature. For example, a plug-in cooler that cools to 40 degrees F below the outside temperature will not be cold enough for Kineret if the outside temperature is 100 degrees F. If camping in the winter or cool locations, one of these plug-in coolers may work well.

If you do not have a refrigerator available to you, then you will need to keep your mediation in a cooler and be vigilant about replacing the ice and monitoring the temperature. If you are unfamiliar with the area you plan to camp, call ahead to determine what is available for ice. Some campgrounds may have ice to sell, while at others you may need to drive into town to buy ice.

We use the this medication cooler bag for camping. We pack our anakinra with the gel pack that the bag comes with and put the entire bag in large Ziploc bags to keep it dry. We then place it in the cooler at the top and this has worked well for many week-long camping trips. If you are a seasoned camper, then you are already used to monitoring the food cooler temperature and replacing the ice as needed, so just continue to do this for the medication also.

Also when camping, be aware of where you store the medication throughout the day and how the sun travels over your campsite. What was a shaded cool location in the morning, may be bright and sunny in the afternoon. Place the medication cooler in a location that will remain shaded and as cool as long as possible throughout the day. You may want to create a spot that is shaded all day long by hanging a tarp or erecting a shade canopy. Keep in mind, unless it’s air conditioned all day, inside your trailer or tent may get very hot during the day. Also, make sure that it is in a safe place where wild animals cannot get at it, especially if the cooler you are using has ever stored food, since they may be attracted to the smell of the bag.


Packing the Medication

Keep the medication in it’s box with the prescription label, and place that into a freezer bag. This will protect your medication from getting damp or wet inside the cooler. Pack enough medication and supplies to last the trip plus a few extra days just in case you are delayed in your travels.

Pack Extra Freezer Bags

Bring some extra freezer bags with you. If you are traveling for several hours or several days without access to a refrigerator, then you can use the freezer bags to fill with ice. In a pinch, you can fill up the bag with ice from a restaurant.

If you would like more tips for travel, or how to help your child with injections, take a look at our new “Healthier Ever After” book, available now as a download, and in print in April 2014.

*Campsite photo by BLMOregon, Flickr

How Inflammation Affects Mood and Behavior in Systemic Autoinflammatory Diseases

inflammation and behaviorMany questions have been asked about behavior issues, and if there is a connection with autoinflammatory syndromes, especially with younger kids who can get moody and even aggressive in a flare and have a hard time explaining their emotions. There is research on how inflammation causes “sickness behavior syndrome.” While the research is not specific to autoinflammatory illnesses, the inflammatory cytokines studied are the same ones that are involved in the various autoinflammatory diseases.

The “gist” of the studies are that pro-inflammatory cytokine markers get into the brain and do affect behavior and mood. And it’s not just humans who experience sickness behavior. These mood changes and behaviors can be found in all mammals and birds reports the authors of Twenty Years of Research on Cytokine-Induced Sickness Behavior published in the journal Brain Behavior and Immunity. This behavioral adaptation is thought to protect other members of the community from disease by making the sick members feel the need to separate from the group.

These are symptoms noted in a variety of conditions in general. It would be good to have more research on this specifically for autoinflammatory diseases.

Sickness Behavior Symptoms:

  • Anhedonia (emotional numbness)
  • Depressed Mood
  • Cognitive Dysfunction
  • Loss of Social Interest
  • Fatigue
  • Low Libido
  • Poor Appetite
  • Somnolence
  • Sensitivity to Pain (Patients tell us these syndromes are very painful – read more here.)
  • Malaise
  • Anxiety
  • Inability to Concentrate

Targeting Inflammation to Treat Depression

In this video, Dr. Miller of Emory University discusses how inflammation can affect the brain and cause depression. He also discusses how a study led by researchers at Emory University showed that in patients who had depression and high inflammatory markers, using a biologic medication that targeted tumor necrosis factor (TNF), improved the depression symptoms. TNF is also involved in many autoinflammatory diseases, and for some the treatment is a biologic that targets this inflammatory cytokine.

CBSM Effects on Sickness Behavior and Pro-Inflammatory Cytokine Mechanisms in Breast Cancer Survivors

This dissertation, written by Orit Birnbaum-Weitzman of the University of Miami, looked at sickness behavior in breast cancer patients. It was determined that sickness behavior symptoms were associated with IL-6 and TNF-alpha. It was also found that the higher the levels of TNF-alpha, the longer it took the physical sickness symptoms to disappear.

Interestingly, these are some of the same inflammatory cytokines that are also known to be overproduced in several periodic fever syndromes, including Tumor Necrosis Factor Receptor-Associated Periodic Syndrome (TRAPS) and Familial Mediterranean Fever (FMF).

How Inflammatory Disease Causes Fatigue

This 2009 study published in The Journal of Neuroscience reports that, “behavioral changes suffered by those with chronic inflammatory diseases are caused by the infiltration of immune cells into the brain.” The study looked at mice with inflamed livers. In these mice, monocytes, a type of white blood cell, were found in the brain. When researchers blocked chemicals in the brain that were allowing the monocytes into the brain, sickness behavior was reduced in the mice.  Leukocytosis, a condition where the total white blood count (WBC), including monocytes are elevated, is a common finding in many systemic autoinflammatory diseases.

fever syndrome behaviorIs Your Immune System Making You Cranky? UA Studies Inflammation, Behavior – University of Arizona Report

While it has been known for decades that chronically ill patients tend to suffer from sickness behaviors such as depression, it’s becoming more recognized that it’s not just the stress of the illness that is the cause. Dr. Charles Raison of the University of Arizona College of Medicine reports that,When the body is sick, it produces inflammatory chemicals, called cytokines, as part of the natural immune response to illness. Those chemicals can essentially “commandeer the brain” and make a person feel depressed…”

Mood as a Symptom of Autoinflammatory Diseases

With autoinflammatory conditions in particular, the sickness behavior can seem to make a person, especially young kids, appear moody and unpredictable. This especially true in the conditions that have distinct periods of illness, or flares, and then periods of health where the person has few if any symptoms of their disease. As the fever, rash, and mouth ulcers fade away, often so does the sickness behavior. The sickness behavior can also follow the same course as the disease, coming and going unpredictably for some patients.

Understand that mood changes can be part of the autoinflammatory condition your loved one battles. Not only does the systemic inflammation cause mood changes, these diseases are extremely painful as patients describe here. Just as anyone would not be in the best of moods with a bad flu or severe painful injury, patients whose symptoms are flaring will have mood changes, especially young kids. For young kids who know no other way to communicate their pain and feelings of illness than with frustration or anger, it can be beneficial to consult with a therapist on how to best help your child learn to better communicate how they feel during a flare.

It is important to note behavior or mood changes that you notice in yourself, or a loved one that may be having these issues, along with any autoinflamatory disease symptoms on a daily log or calendar.  Take this information to your doctor, and ask them for advice on how to have these symptoms evaluated and managed.

Ideally, with good treatment of the disease that reduces the systemic inflammation, the sickness behavior should decrease, just as you may see other symptoms, such as rash, fever, and joint pain decrease with successful treatment.

Seek immediate professional help if there are serious concerns, such as any alterations in cognitive abilities, speech,  motor functioning, instability, or signs that the patient wants to harm themselves, or others.


 The Autoinflammatory Alliance is a nonprofit organization dedicated to helping those with autoinflammatory diseases.

Donate now to help with awareness, education, and research for these rare diseases.


References

  1. Scholarly Repository: CBSM Effects on Sickness Behavior and Pro-Inflammatory Cytokine Mechanisms in Breast Cancer Survivors
  2. Science Daily: How Inflammatory Disease Causes Fatigue
  3. UA News: Is Your Immune System Making You Cranky? UA Studies Inflammation, Behavior
  4. NIH.gov: Profile of blood cells and inflammatory mediators in periodic fever, aphthous stomatitis, pharyngitis and adenitis (PFAPA) syndrome
  5. Periodic Fever Syndromes, Paul R. School, MD
  6. Brain Behavior and Immunity: Twenty Years of Research on Cytokine-Induced Sickness Behavior
  7. NIH: Cytokine, Sickness Behavior, and Depression
  8. BMC Medicine: Depression and sickness behavior are Janus-faced responses to shared inflammatory pathways
  9. FJPsych Advances: Inflammation and its relevance to psychiatry
  10. Emory: Targeting inflammatory to treat depression

 

*Top photo by Martha Tousseau

*Bat photo by Zeusandhera, Flickr

Updated 10/2017

How to Reduce the Pain of a Kineret (Anakinra) Injection

reduce injection anxiety

Many kids in our patient community say the ShotBlocker helps with the pain of a Kineret shot.

Kineret® (anakinra), is FDA-approved to treat the NOMID (Neonatal-Onset Multisystem Inflammatory Disease) form of CAPS (Cryopyrin-Associated Periodic Syndromes), and approved to treat all forms of CAPS in the European Union. Kineret is also approved for treating rheumatoid arthritis. However, it is also often prescribed for off-label use for other diseases, and is being studied in clinical trials for several other autoinflammatory conditions.

This medication works very well in helping to control inflammation related to Interleukin-1ß, that is often elevated or involved in a number of autoinflammatory diseases, but especially in patients with CAPS.  Anakinra is an interleukin-1 receptor antagonist, so it blocks the cellular uptake of Il-1ß. This drug helps many individuals to live a more normal healthy life if they are able to get their inflammation under control.

The challenge is that this medication is given as a subcutaneous injection, in most once a day, and there’s no denying that this shot is painful.  This is because the medication is preserved with sodium citrate, a form of citric acid, and has a low pH of 6.5, making it acidic.

Anakinra is not alone in being a painful injection, as a few other biologic medications are also known to be very uncomfortable injections, such as Enbrel® (etanercept) and Humira® (Adalimumab).

Here are some tips for making this shot less painful for your child, or yourself. Since everyone reacts differently, you or your child will find some of these tips work well, while others may not be effective or may even make the pain of the shot worse. Try different tips to develop a routine that makes using Kineret most comfortable for you and your child.

Warm it Up

Kineret is stored in the refrigerator. Before giving the shot, you can take it out of the fridge for about 20 to 30 minutes to warm it to room temperature. Some warm it by holding it their hands for a few minutes. Almost all patients do report that a room temperature shot is less painful than a cold shot directly out of the fridge.

reduce injection anxietyShotBlocker

Reviews of this tiny plastic device are exceptional. On one side it has small nubs that are uncomfortable, but not painful, when pressed to the skin. When it’s pressed to the skin during the injection, it confuses the brain for a few seconds acting as a form of distraction. Essentially the brain focuses on the annoying nubs and doesn’t pay attention to the injection. This works especially well for kids and it is cheap to buy.

injection painBuzzy

The Buzzy bee is another distraction tool that vibrates. You place it above the injection site as you give the injection. As it vibrates, it works like the ShotBlocker and distracts the brain. You can use the ShotBlocker and the Buzzy together, but you’ll need extra hands to do this.

Aim for Fatty Areas

This is a subcutaneous injection. Aim for injection site areas with the most fat. For this reason, some say the belly is the best, while others prefer the back of the arms.

Ice the Injection Site

Some report that icing the injection site right before the shot helps alleviate the pain. This does tend to be very individual however. Some say it makes the injection hurt worse.

Warm the Injection Site

If icing the injection site did not help you or your child, try warming the injection site first. You can do this by placing a warm towel over the area for a few minutes before giving the shot.

Inject Slowly

Some patients prefer to inject the medication slowly. They will push a tiny amount in, stop and take a breath, and then push a little bit more in and stop and take a breath. The injection tends to hurt more as the volume that is injected into the tissues increases as the medication is administered.

Inject Quickly

Some cannot handle doing it slowly and just inject as quickly as possible to get it over with. For very young kids, you may have no choice but to do it quickly if your child moves too much during the shot.

Rotate Injection Sites

Sides to back of the arms, thighs, and stomach are the common locations for these injections. Do rotate each day where you give the injection. This can help reduce the injection site reactions in any given spot.

Even though people may prefer one area over the rest of the acceptable places for the injection on the body, it is essential to rotate the injection sites, according to the instructions on the medication box. Do not keep using the same area every day.
Overuse of one injection site can lead to deeper tissue injury, and can be more sensitive, or develop more scarred tissues so it is harder for the medication to be efficiently absorbed into the body.

Use a Smaller Needle

Many patients transfer the medication into a smaller gauge needle, such as those used for insulin. The smaller needle can help reduce the pain. Have a nurse or doctor show you how to safely transfer the medication, and how to properly calculate the dose since insulin syringes are marked in units, versus mls before trying this method. The use of another syringe instead of the pre-filled anakinra syringe requires a prescription.

rp_how-to-reduce-injection-anxiety-300x200.jpgDistraction

For kids and adults, distracting from the pain is the most effective way to lessen the shot pain. And the same techniques can work for both kids and adults. Try sucking on candy, watching a video or perpetual motion toy, or chewing gum and blowing bubbles. For more about using distraction techniques, click here.

Also, download a copy of our “Healthier Ever After” injection tips book full of helpful tips and fun ways to help your child with their injection experience, and develop coping techniques.

Click here for Kineret informational videos that includes step-by-step injection instructions.

Click here for more tips and resources for patients on biological medications.

References

  1. Drugs.com: Kineret
  2. FDA: Kineret (Anakinra) Prescribing Information
  3. Rheumatology International: Injection-site reactions upon Kineret (anankinra) administration: experiences and explanations

*Top photo of child blowing bubbles by Samuel Borges, BigStockPhoto.com