What's it like to take apomorphine?
We learn more about apomorphine, and hear from Paul and Vicki about how it has helped them with movement symptoms during "off" periods.
What is apomorphine?
Apomorphine is a drug which can help some people with Parkinson’s with movement symptoms during "off" periods.
It can help when other Parkinson’s drugs aren’t controlling movement symptoms like stiffness or uncontrolled movements during "off" periods.
Taking apomorphine
You’ll get training on how to take apomorphine and you’ll usually start taking it in a specialist clinic. A specialist, Parkinson’s nurse or specially-trained apomorphine nurse can help if you’re having any problems.
Benefits of apomorphine
Apomorphine starts working quickly. It can help to reduce motor symptoms like stiffness in four to 12 minutes. You can use it as a "rescue" treatment if you feel an "off" period starting.
Side effects
Always bring up any concerns about side effects with your specialist or Parkinson’s nurse.
Vicki's story
Vicki, 51, was diagnosed 6 years ago and uses an apomorphine infusion pump. She explains how it has helped her with pain during "off" periods.
I was struggling with painful "off" periods, especially in the afternoon. I couldn’t stand the pain and my muscles were really stiff.
When my neurologist first mentioned apomorphine, the idea frightened me. I thought of it then as a medicine of last resort. But my neurologist explained that this wasn’t the case and apomorphine should improve my symptoms while I waited for deep brain stimulation (DBS).
But painful "off" periods were really disrupting my life, so I started taking apomorphine with an injector pen. I found this difficult. The medicine ended my "off" periods quickly but later on they seemed to come on more severe than before. I sometimes could barely move when I went off.
I was injecting 7 times a day, which bruised my skin.
My neurologist and I decided that I should start using an infusion pump instead of the pen. This made a big difference.
Using the infusion pump virtually took the stiffness and pain away. I felt so much better. When I started using the pump, an apomorphine nurse visited me at my home. I felt like she was on my side and she made me feel more confident.
The apomorphine helpline was great too. They can help with technical queries about the pump. If you go on holiday they send you a spare pump and a letter you can show airport staff. This gave me peace of mind when I went to Spain last year.
Border security staff did take me aside to ask me about my pump equipment. I had my travel letter, so we sorted it out in the end.
There are some practical things to consider. I have to figure out where to attach the pump when I exercise and take it off when I go swimming. I had to cut holes in the pockets of some of my clothes to push the pump’s wires through.
I’ve now had DBS and my symptoms are much better generally, so I’ve stopped using the pump. Apomorphine has some disadvantages. It takes organisation but it did help with my pain during 'off' periods.
Paul's story
Paul, 42, was diagnosed 10 years ago. Although he doesn’t use apomorphine often, he explains how it helps him manage "off" periods.
My neurologist first prescribed me apomorphine last year. I had been struggling with "off" periods and exploring my treatment options. During ‘off’ periods I have dystonia and stiffness in my muscles, and I slow down a lot.
I take apomorphine by injection. I don’t take it regularly. I use it as a "rescue" drug on days when my ‘off’ periods are particularly tough. For me, apomorphine works quickly and lasts about 40 minutes. It can bring me from "off" to "on", or close to "on". This really helps my motor symptoms.
An apomorphine nurse checks in on us every few months, by phone and email. When I started taking apomorphine, she came to my house and taught my husband and I how to use the injector pen. She gave us leaflets about the pen and tips on how to keep your skin healthy. We really value her support.
I don’t take it often, but it is reassuring to have apomorphine available. It helps make me less anxious about ‘off’ periods.
Using the injector pen during an ‘off’ period can be tricky. You have to attach the needle to the pen, set the dose, inject the medicine and then safely dispose of the needle.
By the time I need to inject my apomorphine, my hand isn’t working well enough to do it myself. I have to rely on my husband to help.
I haven’t really experienced side effects. I watch for lumps forming under my skin where I’ve used the pen. I avoid these by changing where I insert the needle for each injection.
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