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Tips and Resources for Patients with Arthritis and Autoimmune Conditions during a Hurricane

We recognize that many patients with arthritis and other rheumatic diseases may be personally affected by hurricanes and severe storms that lead to evacuations and damage normal infrastructure. These patients and their families may have specific questions in the aftermath of a hurricane, prolonged power outage, flooding, and other devastating situations.

The Johns Hopkins Rheumatology Website strives to provide current information to help people living with arthritis and autoimmune disease. We have developed a series of Questions and Answers that we hope will give some initial guidance for patients, families, and rheumatologists. Our goal is to provide an initial source in your search for information. We recognize that these questions just scratch the surface for the unique concerns of each individual and their specific situation.

Many patients may be evacuated from areas affected by the storm, often without their medications or medical records, and sometimes to distant areas where the health care systems are different. Many physician offices, including rheumatologists, and clinics and hospitals may be closed and cannot be contacted. Transportation may be difficult for many people. Electricity and phone service may be affected leading to further difficulties in communication and the ability to keep certain medicines cold. All of these factors as well as countless others may have an impact on the ability to manage arthritis symptoms.

For patients:

For Rheumatologists:

Q: A storm is coming to my area and I need to evacuate. What should I do concerning my medications and arthritis treatment?

When a weather situation approaches, it is important for people to be prepared and to think about their medical conditions and care as early as possible and to have a plan of action (ideally prepared in advance). There are additional considerations for people who live with arthritis and autoimmune diseases, especially those who are taking immune suppressing and biological medications.

  • Keep a current listing of medical conditions, allergies, and medications and their doses with you.
  • Inventory your medications and be sure that you have enough for longer than the anticipated period you will need to be away.
    • If you have enough advance warning, you may be able to speak with your pharmacy or specialty pharmacy and have them pre-ship (overnight) to you additional medicines earlier than your normal refill date.
  • If you are taking a biological medication, have the number of their patient access line so that you can contact them with questions
  • Keep the number for your pharmacy or specialty pharmacy that ships your drugs to you in case there are problems getting your drug, or how to get it rerouted to a new location
  • If you must evacuate and are taking a medicine that has to be kept cold, be sure can keep the medicine on ice or cooling blocks as you travel and can refrigerate it where you go.
  • If you live in an area that may be affected by a storm or flood (such as living along a coastal region or river that has flooded in the past), speak with your rheumatologist, your rheumatology nurse, and other medical providers in advance about what their specific concerns would be for you.
    • For instance, if you have rheumatoid arthritis, how would you manage a flare?
    • If you are taking an immunosuppressing drug, what should you do if you start to get an infection?

Q: What should I do if I cannot get in touch with my rheumatologist?

A: Rheumatologists and their staff in affected areas may also be displaced with their offices, clinics, hospitals, and medical records not accessible. You should try to first call your rheumatologist to obtain information. If you are unable to locate your rheumatologist, or if you have been relocated to a new area, you should contact either the American College of Rheumatology or the Arthritis Foundation for the name and contact information of rheumatologists in the area:

It is very important to tell the office of a new rheumatologist that you have been evacuated from a storm-affected area as well as the medications you are receiving, the doses of those medications, and any current problems that you are having. Rheumatology practices may be very busy with their current patients, but we hope that rheumatologists can make accommodations to see you as a new (and hopefully temporary) patient in their practices.

If you are having emergent or significant medical problems, such as fever or significant worsening of your arthritis or autoimmune disease, you should be evaluated in an emergency room setting.

Q: What if I’ve lost power and my biological medication is not cold?

A: Most biological medications must be kept cold.  Some injectable biological medications (Humira and Enbrel) have been shown to be stable at room temperature – no higher than 77º F. for up to 14 days.  All biological medication should be protected from light.  Other medications have not been studied and should be assumed to not be stable for use. If your medication has gotten too warm, it should not be used.  If possible, you should contact your pharmacy to order new medication.

If you have been relocated to a new area, you should first contact the patient assistance lines for your medications (listed below); they will direct you to the next steps.  It is important to have a place to refrigerate your replacement medication and to transport the medication on ice/cooling blocks if you must move from place to place.

The FDA has important additional details concerning biological products:

https://www.fda.gov/biologicsbloodvaccines/safetyavailability/productsecurity/ucm147243.htm

Q: What should I do if I take an injectable biological medication but have been evacuated or relocated due to the storm and do not have my medication?

A: You should first contact the toll-free patient assistance lines for your medication:

  • Actemra: 1-800-ACTEMRA      (800-228-3672)
  • Cimzia: 1-844-UCBNurse        (844-822-6877)
  • Cosentyx: 1-844-COSENTYX    (844-287-3689)
  • Enbrel: 1-888-4-ENBREL       (888-436-2735)
  • Humira: 1-800-4-HUMIRA      (800-448-6472)
  • Kevzara: 1-844- KEVZARA     (844-538-9272)
  • Orencia: 1-800-ORENCIA        (800-673-6242)
  • Simponi: 1-877-CAREPATH    (877-227-3728)
  • Stelara: 1-877-CAREPATH    (877-227-3728)
  • Taltz: 1-844-TALTZ-4U       (844-825-8948)

They will be able to direct you to the next steps such as supplying new contact information, reviewing authorization numbers, obtaining replacement medication, etc.

You will likely also need to contact your pharmacy or specialty pharmacy directly.

Q: What should I do if I receive a biological infusions intravenously and I am due/late for an infusion?

A: Many physician offices, rheumatology practices, infusion centers, and hospitals may also be affected by the storm and may no longer be able to provide infusion services to you. If you cannot locate your rheumatologist or infusion center, you may need to be seen by another rheumatologist in order to get started back on your infusions. (See I cannot locate my rheumatologist above).

Some of the pharmaceutical companies have patient access numbers to call and may be able to provide further assistance.

  • Actemra: 1-800-ACTEMRA      (800-228-3672)
  • Orencia: 1-800-ORENCIA        (800-673-6242)
  • Remicade: 1-877-CAREPATH    (877-227-3728)
  • Rituxan: 1-877-474-8892
  • Simponi Aria 1-877-CAREPATH    (877-227-3728)

Q: I am a clinical trial participant and have been relocated or I cannot locate my rheumatologist or clinical trial center; what should I do?

A: Patients who are in clinical trials should first attempt to contact their physician or clinical trial site. If the physician’s office is not available because of the storm, you should try to locate the name of the pharmaceutical sponsor of the trial. This may be located on your copy of the informed consent. We recognize that many of you may not have this paperwork with you. You may be able to locate your clinical trial at http://www.clinicaltrials.gov or at http://www.Centerwatch.com. These may list other sites in your area that are conducting the clinical trial in which you were enrolled and that may be able to accommodate you or provide additional information. You may wish to contact the pharmaceutical sponsor for additional directions.

It is very important to let any health care professional that you may see know that you are involved in a clinical trial of an investigational medication, and if possible the name of the medication.

Q: What should I do if my arthritis symptoms are beginning to flare?

A: If you are having emergent or significant medical problems, such as fever or severe worsening of your arthritis condition, you should be evaluated in an emergency room or urgent care setting.

If your symptoms are beginning to flare because you have not taken or do not have your medication, it will be important for you to seek care by a physician familiar with the treatment of your condition. If you are in a new area, you may be able to be evaluated by an internist, family practitioner, or medical clinic until you can locate a rheumatologist. It is important to tell any health care provider the medications you are currently taking for your arthritis.

Q: What should I do if I am taking medications for my rheumatoid arthritis (prednisone, immune suppressants, and biologic medications) and am running a fever?

A: You should seek medical attention immediately.

Medications such as prednisone, immunosuppressants, and all biological medications increase your risk of getting an infection. Crowded living conditions such as experienced in shelters, poor nutrition, and exposure to contaminated water are all additional risks for exposure to bacterial infection and other unusual infections. It is very important to be evaluated quickly. You should notify the health care provider who is seeing you of your underlying medical conditions, as well as any medications that you are taking or have taken in the past few months as there may be lasting effects on the immune system.

Because many doctors who you may see in an emergency situation may not be familiar with your condition or your medications, it is very important to provide this information to them.

We have medication sheets for most rheumatology drugs on our website. You can print these out to provide to a new doctor, especially one in an urgent care or primary care setting. More detailed information concerning individual medications can be found on the websites of companies that make them.

Short videos about medication side effects and infections can also be found on our website:

Q: What should I do if blood tests are needed? I have been taking medications for my rheumatoid arthritis including Methotrexate. My doctor checks my blood tests every 6 weeks but I have been relocated.

A: People taking certain immune modulating medications to treat arthritis and autoimmune diseases have regular monitoring for side effects. These should be done on a regular basis in order to avoid toxicity. These lab tests may need to be ordered by a new health care provider at a clinic or other facility. You may be seeing a new doctor who is not familiar with your medication or monitoring for these side effects. Information regarding medication side effects and monitoring can be found on our website.

Q: I have been receiving medication delivered to my house; what should I do if I cannot receive mail at that address?

A: If you have previously been receiving medications at your house, you should notify the sender of the new address (e.g. especially medications requiring refrigeration such as biologics). Be sure to notify the place where you are staying of the need to keep this medication refrigerated.  It is important to know the phone number of your specialty pharmacy if you receive medication through them. This number should be on your prescription insurance card. The pharmacy can re-route your medications to a place where you can receive them.

If you have been displaced for a period of time, the U.S. Postal Service may be able to help with your mail. Displaced people due to weather who are in areas without telephone service or internet access should go to the nearest post office, complete a change-of-address form, and submit it to a postal retail associate at the counter or mail it. For more information visit http://www.usps.com or call 1-800-ASK-USPS (1-800-275-8777). People who are registered and have been housed in an evacuation center or long term shelters should use the Shelter Address listed as their Current Mailing Address.

If your medications are delivered by UPS or FedEx, they can be delivered to a UPS or FedEx store near you.  You can pick them up there.

For Rheumatologists

Q: I am a rheumatologist and seeing patients who have been relocated. Where can I find information on how to obtain their medical information, insurance information, etc?

A: We know that you can appreciate the special concerns of arthritis patients affected by an emergency weather situation and the difficulties that may take place in weeks after such an event, especially with obtaining medical information. Many rheumatologists and health care facilities from affected areas may also be displaced. We recommend that you contact the American College of Rheumatology (http://www.rheumatology.org) with your specific concerns so that they may provide appropriate guidance.

Q: I am a rheumatologist who has a practice in an affected area but have been evacuated. What should I do if my office and medical records are not accessible?

A: We recommend that you contact the American College of Rheumatology (http://www.rheumatology.org) to notify them of your location, and the local medical society where you are currently located.

Links for additional resources

From US Government:

 From State Agencies:

Use of this Site

All information contained within the Johns Hopkins Arthritis Center website is intended for educational purposes only. Physicians and other health care professionals are encouraged to consult other sources and confirm the information contained within this site. Consumers should never disregard medical advice or delay in seeking it because of something they may have read on this website.