Patients on TNF inhibitors concealing adverse events

[Guest guest]

Rheumawire

Feb 10, 2004

Patients on TNF inhibitors " concealing " adverse events

London, UK - A British rheumatologist treating rheumatoid arthritis (RA)

patients with TNF-inhibitor drugs reports that some patients have been

deliberately concealing adverse events and delaying seeking medical

help, against advice, because of fear that their biological treatment

would be withdrawn [1].

" Symptom concealment appears to be a new phenomenon in our practice, "

says Dr Kiely (St 's Healthcare NHS Trust, London).

Writing in a letter to Rheumatology, he comments: " This action

undoubtedly contributed to the cumulative severity of [the patients']

ultimate presentation and is clearly a matter of concern. "

" Patients were worried that, if they reported the symptoms, they would

be taken off the TNF inhibitor forever, " Kiely tells rheumawire, " so

we've had to educate them that if we do need to stop the drug, it would

only be temporarily. " He adds that " the patients who respond well to TNF

inhibitors would move heaven and earth to stay on this treatment, and

they feel so much better that they can't contemplate going back to how

they were before. "

Fear that the treatment would be withdrawn led to unnecessary morbidity,

Kiely reports. Two patients developed severe infections (Haemophilus

influenzae empyema and Pseudomonas pneumonia), with a delay of several

weeks between onset of symptoms and admission to the hospital. " In both

cases, a significant period of delay occurred before the patient

consulted the general practitioner, despite repeated warnings from our

department to seek medical advice promptly should infective symptoms

occur, " he writes. There was then a further delay when the general

practitioner tried treatment with antibiotics without referral to the

rheumatology department.

The other cases of symptom concealment involved non-life-threatening

adverse events such as rash, pruritis, and diarrhea. Patients either did

not seek medical advice for some weeks or simply did not admit to the

new symptoms when visiting the department for an infliximab infusion. In

one case of pruritis, the adverse event deteriorated markedly following

the next infusion, he comments.

The incidents prompted Kiely and colleagues to intensify their efforts

in patient education and also to develop an " alert card " for all

patients on a TNF inhibitor (see below), similar in style to that

already given to patients on corticosteroids. The card emphasizes the

importance of reporting adverse events with these agents and reminds

patients that adverse events can have serious consequences. It also

encourages patients to present the card to all other health

professionals (general practitioners, dentists, etc), with the aim of

promoting rapid communication with the rheumatology department in case

of any problems.

The inside of the card provides contact details for the rheumatology

department, with phone numbers for the consultants and specialist nurse

practitioners, and patients are urged to phone in when they experience

any new symptoms or encounter any problems.

" Patients with RA are used to managing episodes of reduced well being

without seeking attention, and . . . rheumatologists may be desensitized

to potential warning signs, " Kiely comments. " New initiatives, such as

the use of an alert card, are required to ensure that the risk/benefit

ratio remains firmly in favor of benefit for patients treated with

biological therapies. "

Zosia Chustecka

Source

1. Kiely PD. Symptom concealment--a new phenomenon in patients treated

with biological therapies? Rheumatology (Oxford) 2004 Jan; 43(1):114-5.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[Guest guest]

Ain't that the truth! LOL! Of course, I would not ignore any side

effects that I thought Enbrel was causing. So far, so good. Sue

On Thursday, February 12, 2004, at 07:07 PM, wrote:

>

> He adds that " the patients who respond well to TNF

> inhibitors would move heaven and earth to stay on this treatment, and

> they feel so much better that they can't contemplate going back to how

> they were before. "