My fingers and toes ached in the cold - until I took Viagra!
The pain first started whenever Anne Mawdsley was out in cold weather. ‘My fingers would turn red and felt like they were burning,’ she says.
‘It sounds like just a minor inconvenience, but I was in excruciating pain. I had to give up working as a PE teacher because being outdoors in cold weather was so difficult. I became a swimming teacher instead.’
However, the problem continued to worsen, and Anne ‘really struggled’ to look after her two sons, then both under two-and-a-half.
‘The pain seemed to reach a peak at night — my fingers would throb, and I’d be shattered because I couldn’t sleep.’
She then developed ulcers on her fingers; one finger even became gangrenous as a result. Anne’s doctor suggested the finger be amputated.
‘Although I was desperate, this sounded like medieval medicine. I was just horrified,’ says Anne, 68, of Alsager, Cheshire.
She managed to avoid this drastic solution, but for the past 30 years Anne has battled to find an effective treatment for her condition, which had also spread to her toes. And two years ago she discovered an unlikely solution — the impotence drug Viagra.
Like ten million Britons, Anne suffers from Raynaud’s syndrome, a disorder triggered by a sudden drop in temperature. The blood vessels in the fingers and toes contract, cutting off blood supply. It can also affect the tiny arteries in the nose, ears and tongue.
Typically, Raynaud’s causes the fingers or toes to turn white and numb. Then, as the blood flow returns, they turn blue and eventually red, accompanied by a burning sensation. Attacks can last from a few minutes to an hour.
Nine out of ten cases are in women, with most sufferers having their first attack before the age of 40. Although attacks peak in the cold winter months, symptoms can be triggered by everyday tasks such as taking food out of the freezer, air conditioning, or even stress — all of which cause blood vessels to contract.
There are two types of Raynaud’s. Primary Raynaud’s, which tends to run in families, is generally quite mild. Most patients can cope by wrapping up warm, although some develop painful weeping ulcers, which can become infected.
Secondary Raynaud’s is far more serious and painful, but about ten times less common. Indeed, it’s only in the past 20 years that doctors have discovered there is a difference between the two.
The secondary form of Raynaud’s, which Anne has, is usually caused by an auto-immune disease such as scleroderma, which causes a hardening of the skin, muscle and internal organs.Here, Raynaud’s is a symptom of the underlying disease.
The secondary form is worse, as circulation is less likely to return to normal completely between attacks, so patients can be left in permanent pain.
Fingers and toes can even become gangrenous because the blood and oxygen supply to tissues is restricted. The gangrene is known as “dry”, which means it does not spread, but the patient may still need an amputation.
‘Raynaud’s has been labelled a minor condition that just causes cold hands, but for some patients the symptoms and complications can be life-threatening,’ explains Professor Chris Denton, consultant rheumatologist at the Royal Free Hospital, London, and a leading expert. He says that anyone over 40 experiencing the symptoms should see their doctor.
Anne was 33 when she first developed the tell-tale signs. Within a year of being diagnosed, she was told she needed the middle finger on her left hand amputated.
‘I decided there and then to try and find a cure myself. I tried bandaging my fingers in honey. I also tried physiotherapy, massage, acupuncture and even saw a faith healer,’ says Anne, who lives with husband Harry, a retired lecturer.
By 1981, she had developed gangrene in her big toe, too. She tried pioneering new treatments at clinics all over the country, including an injection of a drug called ismelin to stimulate blood flow, and a procedure originally developed for leukaemia patients in which white blood cells are separated from red ones and replaced with synthetic plasma to remove harmful cells and proteins.
They eased her symptoms temporarily — and saved her toe — but the attacks always returned.
When Anne appeared on a TV programme to highlight Raynaud’s and received more than 400 letters from people desperate for information, she set up the Raynaud’s & Scleroderma Association, which raises money for research and offers advice to patients.
Meanwhile her own condition worsened. She developed difficulties swallowing and had to have her oesophagus dilated to be able to do so properly.
Then, in 1984, Anne heard a rheumatologist speak at a conference about scleroderma, and realised that she may have the condition.
‘I went to the library and looked it up in a medical encyclopaedia, and was horrified to discover most people with scleroderma died within seven years of diagnosis. It was devastating. I was only 42 with two young boys at the time.’
She has gone on to develop complications including bowel control problems, lung disease and high blood pressure in the lungs.
However, the new understanding that Raynaud’s can be a symptom of another, underlying disease has allowed for developments in treatment.
Two years ago Anne was invited to take part in a trial at the Royal Free Hospital, led by Professor Denton, using the erectile dysfunction drug sildenafil — more commonly known as Viagra.
Viagra helps by increasing blood supply to the body’s extremities.
‘I had to smile when I was offered Viagra, but by that stage I was so desperate I would have tried anything,’ says Anne.
She took the tablets three times a day and immediately noticed improvements in her symptoms. ‘Although the numbness and pain in my fingers didn’t disappear completely, it was a lot less severe, and I can now use my hands more for things like typing,’ she says.
‘Luckily, I haven’t suffered any side-effects you can sometimes get with Viagra, such as dizziness or headaches — and I haven’t noticed any effect on my sex life either!’
The trial compared Viagra with a placebo and results show a benefit, explains Professor Denton. He presented the results at a scientific meeting, and a full paper will soon be published.
‘This is an off-label use of Viagra — meaning the drug is not licensed for this purpose,’ he adds.
‘Viagra would be reserved for treating patients with the most severe types of Raynaud’s and/or scleroderma who had already tried more conventional treatments — we’re not advocating it for everyone.’
At present, funding for Viagra for Raynaud’s patients is on a case-by-case basis and doctors have to apply to the patient’s primary care trust. Another treatment, bosentan, which is licensed for treating pulmonary hypertension and ulcers on the fingers and toes, has also been shown to reduce ulcer formation.
After 35 years of suffering, Anne now feels so much better that last year she completed a two-day husky dog expedition across the Arctic Circle in Finland, enduring temperatures of -32 centigrade, and raising £28,000 for the Raynaud’s & Scleroderma Association.
‘I still get cold hands and some attacks, but I’m no longer in danger of losing my fingers and toes to gangrene — and that sounds more like 21st-century medicine to me.’
Taken from the Daily Mail 8/3/11