A Personal Account Part 2 - June 2005

Firstly, I was shocked when my local hospital reduced bed capacity in the rheumatology ward by 10 beds, to make them available for patients to be treated for other orthopaedic complaints, leaving only 8 beds available for RA patients.

Secondly, and on a personal note, my 4-year-old aggressive RA went into remission within six months of being treated with anti-TNF drugs.

Thirdly, I would like to talk a little bit more about the anti-TNF treatment.

As you may know RA drugs, that are based on mouse protein extractions, are very expensive. After trials, synthetic protein drugs have been given the go ahead in America and are now available in the UK.

To give you an extent of the prices:

• The pharmaceutical industry, KINERET in America (Anakinra in the UK) listed the cost of the injection treatment as £532.96 for 25 syringes. 100 mg are required daily.

From the above it will be apparent that the anti-TNF treatment is rather expensive, but where local Primary Care Trust are hesitating to make funds available, it should be remembered that by comparison a hospital stay is equally not cheap.

The biochemistry of these drugs at cellular level is rather complicated, but basically they do reduce inflammation of the joints and hence prevent bone corrosion and thereby the need for surgical intervention is less. As anybody knows who has had surgery, whether for RA bone corrosion or because of wear and tear as in Osteoarthritis, (in my opinion) the benefits of preventative treatments must surely outweigh cost (both to the NHS and the individual) of highly invasive surgery.

As with other disease modifying drugs, anti-TNF drugs have side effects, but so has the disease itself. Personally, I feel RA has destroyed the nerves in my feet. I am given to understand by the neurologist, that the condition is very rare, but where it leads to sensory neuropathology , they are permanently painful although I have lost all sensation. Needles can be stuck into my feet, and I do not feel anything. I cannot walk barefoot as the constant numbness I experience could lead to me falling or having a bad accident.

While nervous tissue regeneration is possible, at 1mm per week, it is extremely slow. If the nerve pathways have been destroyed, no regeneration is possible.

Recently I read in ARTHRITIS TODAY, the magazine of the charity ARTHRITIS RESEARCH CAMPAIGN, that RA can lead to Heart and Lung complications. (Issue No 125, July 2004, p.20 uff). The article states “ people with RA can develop cardiovascular disease” and goes on to say research has shown, that this might be related to the joint inflammation, leading to coronary heart disease. There is no mention of the obvious risk factors such as smoking, diabetes and others. Although research have shown that these people's life span maybe shortened and are far more likely to die from cardiovascular disease.

Conventional disease modifying drugs, such as steroids, methotrexate and the non-steroidal anti-inflammatory drug Ibuprofen could influence the development of heart disease, despite their beneficial role of controlling the painful condition of RA.

A heart warming story is told in issue 126 ( October 2004, p. 6uff) of the magazine, entitled ANTI-TNF – a gradual miracle. It concerns a 39 year old patient, whose quality of life after receiving the biological drug treatment has so greatly improved, that despite the infusion of INFLIXIMAB his partner conceived and he is now the proud father of a two year old boy.

There are other stories: people on anti-TNF treatment having been able to go back to work; in my case being able to do gardening again and hopefully in the Autumn, after a long absence, being able to sample the cultural life in London again.

If the NHS cannot see that funding for the biological treatment is a worthwhile investment in the people for which it was set up, then sufferers have to take matters in their own hand.

Funding for ANTI-TNF TREATMENT in my opinion is paramount to any other Government expenditure - and the apparent millions poured into the NHS have yet to a large extent find their way into the rheumatology clinics across the country.

A Personal Account: the first installment