Medication Information

A number of medications have been used to treat lymphangiomatosis and Gorham’s disease, with varying results. There also are numerous medications that may be prescribed to help manage symptoms, most of which are well-established drugs known to be safe and effective. Currently there is not any medication specifically designated for use in these diseases. Because of this, you most likely will not see the conditions listed in the drug’s literature.

Your most valuable resources for medication information are your physicians and nursing staff and your pharmacist. The internet can be a useful supplement to the information these professionals provide. It also can be very overwhelming.

This page was created to act as a repository for information, written in language most patients can understand, about medications that are sometimes used in the treatment of lymphangiomatosis and Gorham’s disease, as opposed to the medical and scientific jargon you may encounter on web sites intended for professionals. Having information in language that you use every day is critical when it comes to medications. This is especially true when you live with a rare disease for which there is no specific drug.

On this page you will find definitions of medication terms that are important to understand, tips to help you organize and communicate your medication needs, and links to information about some drugs. This is not intended to be a complete listing of every drug ever used by patients with lymphangiomatosis or Gorham’s disease. The inclusion of a drug on this list does not in any way imply endorsement by the LGDA. As always, we recommend you consult with your personal physician regarding all decisions regarding treatments for your particular diagnosis.

Important Terms:

FDA Approved: The Food and Drug Administration has granted official permission allowing a drug manufacturer to market a new prescription drug for a specific health benefit.

Experimental: A drug that has been approved by the FDA for testing in humans. An experimental drug also may be one that has been approved by the FDA for use in humans for one disease or condition but is considered investigational in other diseases or conditions.

Keeping track of your medications:

• Use weekly pill dispensers, fill them on the same day each week. This will help remind you to take the medications and is an easy way to determine if you took your pills or not.
• For liquid medication place a magnetic dry-erase board or a piece of paper on the refrigerator door and on the day you fill your pill tray write out the day and time you are to take the liquid meds. Each time you take a dose, mark through or erase the notation.
• Make a list of your medications, including over-the-counter drugs and vitamins, and dosages and keep it in your wallet. Include on this list the names of drugs and substances to which you are allergic.
• Always use the same pharmacy for all your prescriptions. Using a national chain pharmacy will allow you to get refills should you run out of your medication when traveling. (This is a good practice for parents, as well.)
• If you are prescribed a medication that you can only get from a specialty pharmacy, be sure to inform your regular pharmacy that you are taking the drug and give a copy of your list of medications to the specialty pharmacist.
• Enroll in a service such as MedicAlert®, which will store all your medical information, such as diagnosis, medications, emergency contacts, and physician contact information that can be accessed electronically in case of emergency.

All drugs have side effects!

Become familiar with the listed side effects of your medications and consult your physician, nurse, and/or pharmacist with questions you have about your medications. Many side effects will go away after taking a drug for a period of time. Be sure to tell your doctor about any side effects that are severe. There may be another medication with fewer side effects or a smaller dose of the same drug may help relieve side effects.

Unfortunately, there are some side effects that are both unpleasant and unavoidable. Talk with your physician and your nurse about ways to lessen any discomfort caused by medication side effects. It may mean adding another medication to your regimen, which is frustrating for patients and doctors alike. But this is sometimes necessary. For example, some drugs may cause nausea, which interferes with eating and that leads to nutritional problems. There are medications that can relieve the nausea and help the patient eat, thus avoiding complications of poor nutrition.

Information About Medications

Some of the medications listed below have been used for primary treatment of lymphangiomatosis and Gorham’s disease, while others may be used to treat symptoms and complications of these conditions. These links and the information therein are not intended to replace consultation with your professional health care team, but as a supplement to that relationship. The LGDA does not endorse the use of any of these medications or warrant any information provided by the sites linked to, nor is it compensated for the inclusion of any given drug on this list.

alendronate (a len’ droe nate) – Fosamax

alprazolam (al – pray’ – zoe – lam)

Co-trimoxazole Oral(coe try mox’ a zole) – Bactrim; SMZ-TMP

furosemide (fyoor oh’ se mide)

hydrocodone (hye – droe – koe’ – done)

interferon (in – ter – feer’ – on) alpha-2b – Intron-A

MCT Oil (medium chain triglycerides)

octreotide (ok – tree’ – oh – tide)

oxygen

pamidronate (pa – mi – droe’ – nate)

Prednisone (pred’ ni sone)

sirolimus (sir – oh’ – li – mus)

Spironolactone (speer on oh lak’ tone)

Thalidomide (tha li’ doe mide)

Total Parenteral Nutrition (TPN)

vincristine (vin – kris’ – teen)

zoledronic (zoe’ le dron ik) Acid Injection – Zometa; Reclast