Taking the sting out of injections

An individual remembers well the first time they couldn’t face giving themselves their weekly injection of Avonex, the disease-modifying therapy (DMT)that they take to manage multiple sclerosis.

It was exactly a year after starting to take it.  An individual in New York City one night just couldn’t do it.  It suddenly seemed so violent.  The individual was diagnosed in 1999 and had been on a DMT ever since.  Never had a problem with the idea of injecting myself, but called my Mother that evening asking for help.

For many people using injectable therapies this is familiar.  Until very recently, DMT’s were only available as injections-either an intramuscular shot, such as Avonex, or subcutaneous injections like Betaseron, Copaxone, Extavia or Rebif.  Research has shown that DMT’s help reduce the incidence of relapses and slow the progression of the disease, but adherence can be difficult for a variety of reasons.

Not built to inject

Many people with MS call it “injection fatigue” or “needle fatigue” while healthcare providers may call it “adherence resistance.”  It can result from skepticism about a medication’s efficacy or from fear of pain involved with the injection itself.

“From the first injectables, we have faced this problem.” says a nurse-educator and programs consultant for Can Do MS, which provides lifestyle advice and support for people living with MS.  People are not built to do this.  We don’t wake up and say, “Oh, I want to inject myself today.”

But there are ways to overcome the challenge.  With the help of healthcare providers, people taking injectables can try a number of physical and mental management techniques.

A purpose to the plan

Part of the problem is related to the way DMT’s work.  People with MS don’t feel or see the immediate effects of their injections, which may make it difficult to stick with their dosing schedule.

For a stay-at-home mom in Lawrenceburg, Ind., the connection can definitely be hard to make.  Her Mother took insulin for diabetes and “if she missed a dose, she saw the consequences immediately.”  With Rebif, a subcutaneous injection that she takes three times per week, missing a shot seems not to matter.  “Honestly, I can’t tell the difference when I take the meds.  I don’t know if that means they are keeping me healthy or if they don’t have an effect.

The nurse-educator says that doubts like this can be a signal that it’s time to revisit treatment goals with a doctor or nurse and remember WHY you’re taking the medication.  She says to remind the people that there’s a purpose to the plan.

If a person with MS finds taking his or her medicine truly challenging, it’s time for a frank discussion with a healthcare provider about treatment options.  When someone gets to that place, it isn’t going to be long until they say, “That’s it, I’ve had it.”

A nurse practitioner and co-author of a forthcoming handbook for nurse practitioners working with people with MS says “Its wonderful to be able to prescribe someone a drug that may more effectively manage their MS, but if  there’s something about it that prevents a patient from taking it, it won’t be the best therapy for that individual.”  Each treatment for MS comes with its own risks and benefits, but with five injectable DMTs, two infused therapies and two oral medications recently approved by the Food and Drug Administration (FDA), people with MS now have more choices than they did even five years ago.

Starting with honesty

Dr. Sammarco often begins consultations by asking people how many times they’ve skipped an injection over a given period.  I give them permission to be honest because honesty is instrumental to developing a workable treatment plan.

A television producer in Los Angeles had no problem with the Avonex injection for the first three years.  The nurse said to just pick a spot, count to 3 and jab the needle in.  It was fine at first, but then suddenly it wasn’t.  I’d think, “O goodness, I’m jamming a needle in my leg and I’d end up with 10 little pricks because I just couldn’t get it in.

Ended up stopping Avonex for several months without telling anyone—a potentially dangerous move.  “I just kept telling myself, ‘Next week I’ll be fine.’  I didn’t want to admit that I didn’t want to do it anymore.”  Finally called the doctor and he sent me a nurse to teach me a new way of doing injections.  “She told me to pinch my leg, so that my pain receptor was feeling the pinch, and to do the injection as slowly as I need to.  I’ve been doing it that way for four years now with no problem.”

Pluses and minuses

DMTs taken subcutaneously, or under the skin, must be taken frequently since the medication disperses throughout the body quickly.  But they can cause soreness at the site of the injection and break down fatty tissue, resulting in dimpling and pain.  Therefore, it’s necessary to rotate injection sites in order to avoid hardening and oversensitivity.

A 56 year old owner of a New York City based women’s accessories manufacturing company has used Betaseron every other day for the past 11 years and has reached the limit on certain areas of the body.  The individual says that the stomach has gotten to the point where it can be painful to do an injection.  Won’t go near the right side of my abdomen because it has become lumpy and hard.

The owner notes that he has not experienced an exacerbation and his MRIs have not shown a new lesion since he began the injections.  It seems to be working and keeps going with it.

For Avonex, which is injected directly into the muscle, site reactions are less of a problem than psychological and physical responses to the longer needle.  The injections are needed less frequently, since the muscle dispenses the medication slowly.  Patients look at the needle and feel as if they’re holding a telephone pole.  The new Avonex “pen,” an autoinjector that minimizes the visual and physical discomfort of the syringe, could potentially help.

Tips on techniques

Dr. Sammarco encourages patients to keep a log of their injections and watch for patterns, such as injections in one location-maybe the arm-hurting more than other sites, such as the thigh.  This can help people with MS plan their injections and prepare for side effects.

Such strategies may reveal ways to improve technique, too.  Sometimes we get into bad habits and make injections more difficult than they need to be.  After three hours talking through the problem on the phone with family, this patient realized that you do not stab it in.  I can pick a spot and push the needle up against the skin and just push it in.  Since then the injections have become easier to face.

Inadequate technique may be a particular problem if a person has been giving themselves shots for a long time.  It’s easy to assume that people are fine with injections just because they’ve been doing them for years.  But this might be the point where they’re getting fatigued.  They’ve been stable, relapse-free, and its easy to fall off a little.  A refresher course in injection technique with a healthcare provider can go a long way toward getting people back on track with their treatment.

Sweeten the task

Overcoming needle fatigue can also be a matter of changing how someone approaches the injection itself.  For many, developing a routine that provides comfort and relaxation around the injection can help.  A warm bath, meditation, or a sweet treat taken before or after injecting oneself can lessen anxiety and even reduce pain.A tax accountant from Raleigh, N.C. took Avonex without incident for eight years.  Then one night, she sat there for an hour or more and just couldn’t do it.  But she was determined to stay on her DMT.  She realized that nurses do this hundreds of times a day.  She thought, “what if it’s not me doing it, but just the hand of a nurse approaching the leg of a patient?”  That visualization helped her get over her resistance.  Since then, to continue on the treatment, she switched to the pen, which has made a huge difference in terms of ease and visual appeal.  Cultivate support from loved ones as you need any support system that gives you a boost.

Make the choice

Dr. Sammarco says change may be as simple as refocusing on WHY one takes DMTs.  Assessing your mindset is important:  Are you taking these injections because you want to stay well or are you giving yourself injections because you’re sick?  That distinction is a huge factor.  It’s like taking vitamins, brushing your teeth, exercising.  You do these things because you want to stay healthy, not because there’s something wrong with you.  We have to think of this as one of the choices you make to have the lifestyle you want.