Anti TNFa survey

Anti-TNF-alpha treatment in Behcet patients - May 2003 survey
　
　
This survey was ordered by Dr. Bachta of Poland as part of his research into the use of this treatment in BD, having tried it successfully with one BD patient.
　
The survey was advertised on several communication sites for BD patients, and sent to all those requesting it. Most questionnaires were returned, and nearly all were completed properly.
The full data are kept with Tal Kinnersly who ran and the survey and collated the results, and further details (except for revealing details of participating patients) are available for professional purposes.
The following is a simple summary aimed at the general public.
(For general information about the treatment please click here.)
　
*Limiting factors in this survey
This survey cannot be taken as a representative example of the use of remicade (infliximab) for the following reasons:
-Number of participants was small (all from the USA);
- Some questionnaires were incomplete (mostly, patients ignored the sections asking to specify age and describe side-effects);
- No long-term patients participated.
However, to date (Jone 2003) there has been no such survey done, and most clinical experience with BD is short and involves few patients. Therefore, we suggest that you consider the results below as reference.

1) Symptoms Remicade treatment is aimed at resolving

Most commonly targeted symptoms were uveitis and other eye inflammations, sometimes with a history of several years. Other symptoms included skin ulcers, joint problems, neurological complications and general wellbeing.

2) Dosage/ intervals and duration of treatment

Duration of treatment varied greatly from one treatment only to 1 1/2 years.
In most cases treatmnent started at 5mg/1kg body weight per treatment, with typical intervals of 2 weeks, then 4 , 6 and 8 gradually. However, many patients felt better with 6 week intervals. Dosage increased with duration of treatment in almost all cases, reaching up to 8mg/ 1kg body weight / treatment at 6 week intervals. One patient probably exceeded that amount but data was only available as a total/ treatment.

3) Effects and side-effects of Remicade

Benefits:
Eyes - reduced incidence/ remission of inflammations and improved visual acuity (degree of improvement varied among patients from some relief to reversal of blood vessel damage) within weeks to months of beginning treatment.
Mobility - energy levels and joint problems significantly improved beginning with first treatment (efficacy diminished over months of treatment).
Others - skin ulcers took one year to clear (note oral/ genital ulcers still present), unspecified neurological symptoms and clarity of thought remarkably improved immediately (efficacy diminished over months of treatment).
General - overall better sense of wellbeing.

Side effects:
Half the patients reported no side effects or did not report any side effects. Of those that did, respiratory complaints were most common (type and degree of severity varied). Some felt generally ill for a few days after each treatment or longer. Other complications were patient-specific.
Other problems associated with treatment:
- Inconsistency due to relocation;
- Financial trouble (insurance unwilling to pay for Remicade treatment).

*Note that commonly patients seemed to need more substance per body weight over time or more frequent treatments or both, and often reported diminishing efficacy.

4) Concurrant medications

Most patients took an average of three other medicines alongside remicade. All but one took prednisone (2.5-10g daily where specified). Cellcept, Methotrexate (Matrex), Imuran (Azathioprine) and colchicine were common additions. Antacids, diuretics, NSAIDs and pain relievers (including narcotics) were less common.
Other medicine was aimed at specific conditions possibly unrelated to BD, but was seen only in one patient.

5) History of Enbrel (Enteracept) use

Only a third of patients tried Enbrel, none was satisfied. When affordable, Remicade was prefered. Testimony of one patient not participating in the survey mentioned switching back and forth between the two with relief of symptoms only while receiving remicade.
One patient may be switched to Humira in future.

6) Age, sex and location

All patients located in various parts of the USA, but are of various ethnicities. Sex distribution was about 50/50%. Of those that specified, average age was early to mid 40s.
　
　
BIG would like to deeply thank all the participants in this survey for their time, effort and cooperation.