Questions and Comments

My daughter has just been diagnosed with inflammatory bowel disease? I have inflammatory bowel disease and AS. Are AS and inflammatory bowel disease linked and does this mean she might get AS?

AS and inflammatory bowel disease (IBD) are known to be linked. They share many genes in common including the HLA-B27 gene. 

Many people with AS have inflammation of their bowel consistent with IBD and many people with IBD also have X-ray changes in their sacro-iliac joints and lower back just the same as the X-ray changes seen in AS. There is some evidence to suggest that inflammation of the lining of the bowel could be involved in a person developing AS.

As regards your daughter, it is estimated that approximately 10% (1 in 10) patients with IBD develop "proper" AS with significant symptoms. While this is much higher than the general population (in the general population 1 in 400 people have AS), it still means 9 in 10 (90%) patients with IBD do not develop symptomatic AS.

Other conditions which are associated with both AS and IBD include uveitis (inflammation of the eye) and psoriasis (an inflammatory rash of the skin)"

The name TNF stands for Tumor necrosis factor, which is a chemical in the body which helps the immune system to protect the body. It can make cells (like cancer cells) kill themselves. However, in high levels it can lead to the inflammation seen in AS. In theory blocking the TNF in the body with anti-TNF drugs might lead to more cancers. However, the majority of studies in rheumatoid arthritis suggest there is no increased risk of cancer for people treated with anti-TNF compared to people treated with tablets. One study by Nannini (reference below) suggests that for every 10,000 people treated with anti-TNF, 75 people may develop cancer, this compares with 50 people for every  10,000 not treated with anti-TNF. This means there could be 25 more people with cancer in every 10,000 treated with anti-TNF. However, statistically, there is no difference in the rates of cancer in those treated with anti-TNF compared to those treated with tablets.

This means there is no evidence that anti-TNF can lead to cancer. However, studies are being done across Europe to confirm this and to improve our knowledge of the long term effects of using anti-TNF.

Reference: Nannini C, Cantini F, Niccoli L, Cassara E, Salvarani C, Olivieri I, et al. Single-center series and systematic review of randomized controlled trials of malignancies in patients with rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis receiving anti-tumor necrosis factor alpha therapy: is there a need for more comprehensive screening procedures? Arthritis Rheum. 2009 Jun 15;61(6):801-12.

For a full answer about anti-TNF please see the following websites:

http://www.asresearch.co.uk/anti_tnf.htm

http://www.patient.co.uk/doctor/Anti-tumour-Necrosis-Factor-Alpha-(anti-TNF-alpha).htm

"Itching is a fairly common side effect of enbrel (etanercept). It usually occurs at the injection site, but can be more widespread. If this persists, it suggests that the drug may not suit you, so you should discuss this with your doctor or rheumatology specialist nurse. The other anti-TNF drugs are made up differently, so one of these might suit you better.

There are many causes for numbness, most of which are harmless and unrelated to medications. If you have just started the enbrel, then it is unlikely that this is related. However, the Important Warning Section of the drug information does suggest that anyone taking anti-TNF drugs should report any new numbess to their rheumatology team urgently."

If a man has AS there is generally a 1 in 10 chance his son will develop AS and a 1 in 20 chance is daughter will develop AS.

If a woman has AS there is an equal chance that her sons or daughters will develop AS. The risk is 1 in 6 if a mother has AS.

A person needs to have a number of different genes to be ‘susceptible’ to developing AS. It would be very unlikely to get all these genes from one parent. Therefore, both parents need to carry and pass on ‘susceptibility’ genes before a person can develop AS. Since one or two genes are not enough to develop AS, then a person can carry one or two ‘susceptibility’ genes but not develop AS. Most people who get AS (8 in 10 people) do not have a parent or family member with AS.

Reference: Lancet Volume 354, Issue 9191, 13 November 1999, Pages 1687-1690

This depends on the reasons for not being eligible for anti-TNF therapy. Current eligibility for anti-TNF treatment is dependent on having active disease (Disease activity on a BASDAI 0-10 scale of 4 or more and a spinal pain score of 4 or more, on at least 2 occasions), no contraindications (e.g. no active infection or cancer) and having a demonstrable response to anti-TNF. There are several new drugs undergoing trials for AS, but as yet, none are available in the UK. However, as most of these are biologic drugs, like anti-TNF, with similar side effects and costs, the eligibility criteria are likely to be similar.

No, if your child develops a swollen knee or joint pain then you should make sure the doctor is aware of your family history of AS and so the possibility of AS is investigated early. However, without symptoms there is no need to test for AS.