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Part 10: Dealing with interferon therapy

“’Tis better to suffer the slings and arrows of outrageous interferon, than to be sawed in half for a
transplant.” - Cindy Torchin cindyt@cpcug.org

Taking care of yourself during your interferon therapy is important. It can lessen some of the physical side effects you may experience.

A few simple tips can make a big difference in how you feel, and knowing some ways to take care of yourself can give your emotions a boost at a time when you may be feeling that much of what’s happening to you is out of your control.
This feeling can be easier to deal with when you discover how much you can contribute to your own wellbeing.

Remember though, that self-help is never a substitute for professional medical care. Be sure to ask your doctor and nurse any questions you may have about your medication, and tell them about any side effects you may experience.

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10.1.0 General tips from MERCK

To help relieve some of the side effects of Intron A (interferon alpha-2b, recombinant) for Injection therapy,
follow this simple A-B-C approach:

  • A nalgesics such as acetaminophen or ibuprofen can be used to prevent or partially aleviate the fever and headache.
  • B edtime administration of Intron A therapy will allow you to sleep through the “flu like” symptoms of therapy.
  • C onserve your energy; try to get plenty of rest.
  • D rink plenty of fluids; keep yourself well hydrated before and during therapy.
  • E at balanced meals; make sure your are getting an adequate amount of calories in you diet.
  • F ocus on the positive; maintain a healthy mental outlook.

The most common side effects associated with Intron A therapy are mild to moderate flu-like symptoms, which usually diminish after the first few weeks of therapy. These may include fever, headache, fatigue, weakness, chills, and muscle and joint pain.

Other frequently occurring symptoms are nausea, loss of appetite, diarrhea, and hair loss. They are common at the start of therapy and should not alarm you. If you have any questions about your side effects or medication, make sure to call your doctor.

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10.2.0 How does interferon work?

Alpha interferon works differently in the various diseases it is used to fight. In hepatitis C the virus invades and destroys liver cells; interferon lowers the virus population to a level where it no longer causes injury. Interferon helps by stimulating immune cells that in turn repel the invasion. Some hepatitis patients don’t respond to interferon at all; others do, but some of them relapse when they stop taking it, or even during treatment.

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10.2.1 What will interferon achieve

Even when the interferon does not cure the disease, it can help to put the virus into remission for awhile,
giving your liver a much needed break, and helping you to live longer and more comfortably.

A study presented at the AASLD 50th Annual Meeting (Nov 1999) showed that even non-responders to interferon treatment have positive results. Interferon has been shown to halt and even reverse fibrosis in non-responders, and to slow down the rate of progression by reducing the rate of inflammation, and lowering the viral load.

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10.2.2 Clinical trials

Your doctor may also suggest that you join a clinical trial for new treatments, or you may want to bring up this option with your doctor. Clinical trials are carefully designed research studies that test promising new HCV treatments. Patients who take part in research may be the first to benefit from improved treatment methods. These patients also can make an important contribution to medical care because the results of the studies may help many people. Patients participate in clinical trials only if they choose to and are free to leave at any time. For information about phases of clinical trials, see Appendix G

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10.2.3 Will I be able to continue working while i’m taking interferon

Most people are able to continue working while they are being treated with interferon. It may be possible to schedule your shots late in the day or right before the weekend, (or whenever you determine your worst side effects - if any - occur) so they interfere with work as little as possible.

If your interferon treatment makes you very tired, you might want to think about adjusting your work schedule for a while. Speak frankly with your employer about your needs and wishes at this time. You may be able to agree on a part-time schedule, or perhaps you can do some of your work at home. Under federal and state laws, some employers may actually be required to allow you to work a flexible schedule to meet your treatment needs.

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10.2.4 How will I know if the interferon is working?

Your doctor and nurse will use several methods to measure how well your treatments are working. You will have frequent physical exams and blood tests. Don’t hesitate to ask the doctor about the test results and what they show about your progress. I like to keep copies of my tests.

While tests and exams can tell a lot about how the interferon is working, side effects tell very little. Sometimes people think that if they don’t have side effects, the drugs aren’t working or that if they do have side effects, the drugs are working well. But side effects vary so much from person to person, that having them or not having them usually isn’t a sign of whether the treatment is effective. If you do have side effects, there is much you can do to help relieve them.

 The next section of the FAQ describes some of the most common side effects the people may experience while taking interferon, and gives you some hints for coping with them.

If you are reading this section before you begin taking interferon, you may feel overwhelmed by the wide range of side effects it describes. But remember: Not every person gets every side effect, and some people get few, if any. In addition, the severity of side effects varies greatly from person to person. Whether you have a particular side effect, and how severe it will be, depends on your own particular dosage and injection schedule, and how your body reacts.

Be sure to talk to your doctor and nurse about which side effects are most likely to occur for you, how long they might last, how serious they might be, and when you should seek medical attention for them.

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10.3.0 Importance of Water

It is extremely important to drink all of the water that you can stand (and then drink some more) when you are taking interferon. It not only dramatically decreases the severity of side-effects, but there is also a danger of serious kidney infections if you do not drink enough. Milk/soda/coffee/tea don’t count.

You need genuine water.

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10.4.0 Timing of injections

Merck (the manufacturers of Intron-a) recommend giving yourself the injections in the evening so that you can sleep through the worst of the side effects. A better idea is to keep track of when your worst side effects occur, and then time your shots so that they occur when you are asleep. For some people, this may even mean giving yourself the injections in the morning.

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10.5.0 Traveling with interferon

When flying with interferon, it won’t be affected by going through the x-ray machine. If you are worried about it, you can always just stick it in your pocket and walk through the metal detector. Since the horror of September 11th, it might be advisable to carry your prescription with you, as proof as to why you are carrying syringes. In order to keep the interferon cool, you can pack it in a Thermos bottle, or freeze a blue ice pack and put it into a soft thermal lunch bag, and wrap the interferon in newspaper so that it doesn’t sit directly on the ice. This should last you for a few days.

 Do Not put ice in a glass Thermos. It can break the glass (personal experience). If possible get a stainless steel Thermos. I don’t know if they’re as good, but they don’t break. When in a hotel you can just fill the ice bucket and then put a glass with the interferon bottles on top so if the ice melts the interferon will not get wet.

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10.6.0 What do I do when I can’t afford the interferon?

Merck, the manufacturers of Intron-A recombinant alpha-interferon 2b, have a cost sharing program called “Commitment to Care” designed to help those in need of interferon therapy who are unable to afford it. The program is based on a sliding-scale based on your income, with the cost to you ranging from free in some cases, to whatever their scale says you can afford.

They will first try to find programs in your State that may help, and if none are found they will determine what you are able to pay and absorb the rest of the cost.

In the US: The number to call for the “Commitment to Care” program is 1-800-521-7157, ext 147.

The interview will take approximately a half hour. Some of the questions you will be asked are:

  • Name and address of the prescribing doctor -dosage you will be using
  • When you were diagnosed
  • Your income (need to send them tax forms or pay stub to verify)
  • Number of people in household
  • Why you are unable to pay
  • Cost of your rent or mortgage
  • Any outstanding loans
  • Amount of credit card debt
  • Any savings

In Canada:

PegCARE is a reimbursement program to help people who have been prescribed Pegetron and need assistance with any co-payment they might have, whether through their provincial coverage (i.e., Pharmacare) deductible or their 3rd-party health insurance. It is pro-rated, so the less the family income is, the more help they get. If someone's net family income is less than $30,000, they will get 100% reimbursement. The income maximum is $100,000. Patients must be signed up for Fair Pharmacare to qualify, and they need to provide a copy of last year's T4 form.

A 24/7 Nursing Hotline and bilingual assistance is available, at no charge. Other services are access to live translation services (150 languages) and injection assistance from registered nurses. Ask your doctor or nurse to enroll you in PegCARE. It's an easy single-page form to fill out, which they will provide. PegCARE: 1-866-872-5773

The PegAssist Reimbursement Assistance Program provides reimbursement coordination assistance for patients who have been prescribed Pegasys or Pegasys RBV. The program will assist in securing funding for patients to ensure that they can start, stay on, and complete their treatment successfully. PegAssist Reimbursement Specialists are available (Monday to Friday, 10 AM - 6 PM EST) by calling: 1-877-PEGASYS or 1-877-734-2797. Patients can also obtain a program enrollment form from their nurse/physician to gain access to the program.

The program provides financial aid to qualified patients, alleviating financial barriers which may prevent patients from starting treatment, i.e., deductibles and/or co-payments. In partnership with CALEA Pharmacy, the program can conveniently deliver the medication directly to patients’ homes or to the clinics.

Concerns like these will be answered.

I don't know who is supposed to pay for my treatment.

I don't think I have coverage.

I have no coverage and I can't afford to pay for it myself.

I have insurance but I can't afford my co-pay or deductible.

I have insurance but they won't pay for Pegetron.

My government plan is too complicated for me to understand.

My government plan only pays for a portion of my treatment and I can't afford the rest.

They tell me that my treatment is not covered. What do I do now?

Also, in the US: IV ONE (800) 892-9622

Call for help with interferon costs. This operation will accept whatever your insurance company will pay as full payment in most cases. For dosages above 3 million units, your physician must write a special request to your insurance company first. They send your prescription in pre-mixed dosage syringes, alcohol swabs, Band-Aids and a sharps biohazard container for the used syringes, each month by FedEx. They deliver nationally, so their office location does not preclude anyone from using their service. The staff is available 24 hours a day to answer any questions or give you any assistance you may need.

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Table of Contents


Part 9: Living with HCV

Hepatitis C FAQ

10.7.0 Side Effects