One night in January 2003, I was dancing at a nightclub, my favourite activity, when suddenly I stumbled and almost fell. I was steadied by a couple of people who laughed and made some remark about the drugs I was on and my style of dancing. After laughing along with them, I hobbled to the nearest seat and sat down. But it was not about drugs. My feet were painful. They were burning, which was something I had experienced before. This time they felt like two sponges and I had no sensation and could hardly feel the floor. For the first time my balance was not as acute as it usually was. It scared me because I had never fallen on a dance floor in my life.
These sensations came and went over the next couple of months. At first I thought that the numbness might be a precursor to diabetes, a hereditary condition in my family, but that didn’t explain the pain. One day I was visiting a friend who had peripheral neuropathy, and I asked him to describe the symptoms. To my horror they were identical to what I was experiencing. There were days when I was completely pain free, and days when I wasn’t, but the numbness in my feet seemed to be here to stay.
Trial and error
My specialist sent me for a Nerve Conduction Study, where the doctor virtually electrocuted my feet. This was even more painful than the neuropathy. My GP referred to this as Nazi torture and I could not agree more. The purpose of the test was to determine if the neuropathy had been caused by HIV or not. Well I could have told them that it was, because I was HIV positive and I hadn’t even started treatment.
My GP referred me to a neurologist to have the condition monitored. The neurologist suggested increasing my dosage of epilum, which in some cases can help with neuropathy. Although I don’t like the feeling of being too “drugged” I agreed to give it a go, but it didn’t have any effect on my neuropathy.
Nevertheless it seemed to stabilise. I had good and bad days, monitored the situation with bimonthly appointments with my neurologist, and had Panadeine Forte on hand at all times if the pain became too much. I have to be cautious about the amount of Panadeine I take because it contains paracetamol which is bad for the liver.
I tried acupuncture, which seemed to work for some people but not for me, and I stopped it. I even tried laser treatment, as it had worked for about seventy- five per cent of the people who chose it. Again I was in the minority. It didn’t work and I soon stopped that treatment as well.
A turn for the worse
At the beginning of 2006 I was starting to think that I was wasting everyone’s time and money seeing the neurologist, when things started to become worse. By August the pain was intolerable and my balance was so bad when I walked up stairs I had to hold onto the handrail. I was about to go on a trip to Ubud in Bali. My GP consulted with the specialist and they agreed that I should take eight Panadeine Forte a day to get me through the trip and until I could see the neurologist again. He suggested that I might need to try something stronger like morphine, which was something I did not want to hear.
I managed to have a good time in Ubud but could not do the walking I used to do. My legs and feet would tire easily, and the pain, even with the Panadeine Forte, became quite intolerable. During my next visit to the neurologist I was there for half an hour instead of the usual fifteen minutes. We discussed alternatives, including changing HIV medication, but the current combination was working so well with minimal side effects. Of the eight major medical conditions I have, HIV has always been the least of my concerns.
I agreed to start on the dreaded morphine. Of all the drugs I have had to take it would have to be my least favourite.
Being aware of treatment interactions
After a week, I returned to see the neurologist and told him the pain was better but still not tolerable. After much discussion, we agreed to add another drug called Allegron, an anti-depressant, which can, when taken in small doses, aid in pain relief.
The pain was better, but after a few weeks I noticed a significant change in my mood. The dysphoric hypomania, a medical condition I am prone to, was back. My GP sent me back to my psychiatrist who confirmed the diagnosis and told me that it was most likely caused by the Allegron which is in a class of antidepressant drugs I’m unable to take. I had forgotten this and will never forget it again.
I had to withdraw from the Allegron, increase the epilum, and take another drug called risperdone to control the hypomania. When you have so many doctors who prescribe medication for you, there is so much to remember. I feel it is my responsibility to ensure that they do not prescribe a drug that causes adverse reactions. For example my neurologist wanted to prescribe Abacavir instead of the Allegron, but I have hypersensitivity to Abacavir and it will kill me. This is all part of me taking control of my health.
A new treatment trial
Towards the end of 2006 my neurologist asked me whether I’d like to take part in a new research study to determine whether a new treatment could end the pain of neuropathy. It was a one off treatment where capsaicin patches are placed on your feet for either thirty minutes or an hour. The drug in these patches is a man-made version of a peppery substance found in chilli peppers called capsaicin and the patches are placed directly over the painful areas. The study was to be conducted over fourteen weeks.
Screening Visit
On a Wednesday afternoon mid January I presented myself to the Immunology and Infectious diseases section of St Vincent’s Hospital for the screening visit. The clinical nurse measured my height and weight, took blood, conducted an ECG and asked about the medications I was taking.
The neurologist asked me another set of questions about the level of pain and amount of medication I was taking to ease it. Because I was only taking 30mg of morphine per day and still experienced a great deal of pain, I was still eligible to go on the trial. At the end of all of this the clinical nurse gave me a Pain Diary questionnaire, which I had to complete each night at 9pm, rating the pain on a scale of zero to ten, and making any comments if necessary. I had to keep scoring in the diary for two weeks before the patches were applied to my feet. The nurse briefed me on the whole procedure extremely well. In fact I felt more prepared for this trial than I have for any other.
Study Patch Application Visit Two weeks after the Screening visit I went for the Study Application visit. My blood pressure, temperature, CD4 Count and viral load were measured and heart rate monitored. During this visit I had to rate the level of pain before, during, and after the study patch application. A numbing cream was put on my feet before the patches were applied. The cream was left on for an hour, and I was grateful that I took a book along to read. After the numbing cream was removed, the patches were finally placed on my feet, and they had to be left on for either thirty or sixty minutes. Mine were to be left on for thirty, and I hoped that this was not an omen that I was going to receive the placebo. It was a double blind trial, so we had no idea. During the time the patches were on my feet, they felt warm and there was a tingling, but no burning, sensation. After thirty minutes the patches were removed and my feet were cleaned.
I had to stay at the clinic for an hour while regular observations were taken of my vital signs, followed by completing a survey about my general state of health. I gave the nurse my completed pain diary, and was given a new one for the next four weeks. They also gave me some Panadeine Forte to take home on the condition that I take back what I hadn’t used so that they would know how much pain medication I needed to use after treatment.
That night my feet were so warm I could not sleep with them underneath a sheet, but then it was summer. Every Wednesday for the next few weeks, the clinical nurse called me to see if I had experienced any problems. I hadn’t, and my pain ratings were mainly zero, and occasionally went to a score of one. The treatment seemed to be working.
Follow up visit week 4
Four weeks later, my visits with my neurologist did not last for long because the pain had miraculously gone away. I returned the box of Panadeine Forte unopened. I am currently taking morphine, and wondered if this was the reason why. During this visit when my neurologist examined my feet, I experienced some sensation in my left big toe. That may not seem significant, but for five years I had no sensation whatsoever. This doesn’t mean that the neuropathy is cured. I still have mobility issues including poor balance, but it is marginally better.
Follow up visit week 8
After the eighth and final week, I am back at St Vincent’s hospital. I hand over my final pain management diary. I am weighed, blood pressure and temperature are taken, and there are more blood tests. I then fill out the endless forms relating to my general well being, including my mental health, which I found to be somewhat curious, but completed it anyway. The trial has been a major success for me because although I still have peripheral neuropathy, the amount of pain is significantly reduced. Brett the nurse asked me if I would participate in the treatment again and I said that I would.
In my next visit to the neurologist, I discover I have some sensation in my toes that I have not experienced for many years. I also have to start withdrawing from the morphine I have been taking for the past seven months combat the pain when it became so severe. The withdrawal is a very unpleasant experience but I realise that my body will adjust in time and I should feel well again.
On a final note, if anyone has peripheral neuropathy and an opportunity comes along to participate in the trial, give it a go. The benefits far outweigh the efforts made to participate in it.
Are you thinking of participating in a clinical trial? PLWHA NSW has a factsheet called Clinical Trials, on the benefits and risks and what you should know before you join one. See our factsheets page or contact our office for hard copies.