Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group TNF drugs question

I have heard alot of you talk about waiting lists and test studies and I'm confused. Can you not just be prescribed this drug? Is there not enough of it to go around? What's the deal. I want to know all I can about it before I see Rhuemy. I really feel this is what I need from everything I've read so far and the TYPE of pain it helps with, especially my hip and shoulder pain. What is the best way I have of getting it? If there is a list, how long does it take to get it? How do I get on a test study and can my doctor just prescribe it the old fashioned way?

Enbrel , the TNFdrug that a person injects at home is in short supply ,but Immunex is building a new plant which should come on line after the first of the year.As far as I know Remicade is available.It is given at a clinic in an IV infusion Some people have a bad time getting their insurance to pay for these costly drugs. There are clinical trials for these drugs for AS sufferers though. I personally know of a doctor at UC San Francisco that conducts an Enbrel clinical trial for AS Phone # 415 502 1886
Kev

Debster,
In addition to what Kev has said....

The demand for the trial phases has far outreached the original forecasts - plus news of the success of the trials has spread very quickly - and as such the manufacturing facilities could not cope with the demand - hence the new plant being built

Cheers
jo

I'm on another new DMARD, not a biological one, works differently but still targets the specific inflammation, doesn't depress my entire immune system as much, it's called Arava. I've been on it a year and am feeling pretty good, heel pain just about gone, that awful creep around morning back pain that starts with the painful roll out of bed, chest pain, finger and hand pain, hips always feeling on fire, having to use a cane, etc., etc. You might be a candidate for that. It's less expensive than Enbrel or Remicade and comes in tablet form. I've experienced very few side effects and none after the first six weeks. It's also allegedly a bit easier on the liver than Enbrel, Remicade or the old standby, MTX.

Cheryl

Dogs don't care if the house is messy

Cheryl,
It was my understanding that enbrel and remicade do not go to your liver...or do not damage it the way most of the drugs do. Have you heard otherwise? One of my adult "kids" is on remicade and the other one on enbrel...and aside from a few problems with infections (enbrel) the drugs have made an amazing difference in their lives...a much needed relief for both of them. So far, I prefer the remicade approach, but the health situations of the two patients is quite different so it is hard to judge. I guess it is the doctors call as far as that goes. I hate AS.
VenturaCntySusan

Actually I'm not sure about that, just heard somewhere they can be hard on the liver, but since I've not been on them I haven't really researched it. I do know Arava can affect the liver but not to the extent of most DMARDS, such as MTX. I'm actually allowed to drink a glass of wine now and again

Cheryl

Dogs love it when you leave your clothes on the floor

Cheryl,

Two potentital causes for confusion:

1. In previous clinical trials of the biologic modifiers, people were excluded from consideration if they had serious liver diseases.
   
   


2. To receive Remicade, you also must take Methotrexate, which, like Arava, can be harmful to the liver.
   
   

I checked the data I have on either Enbrel or Remicade and was unable to find any indication of compromising liver function.

Best regards,

jcwinnie


Always glad to muddy the waters some more

Cheryl,

I appreciate that you want people to know about Arava, a new DMARD. I have noticed in several discussions that you classify Enbrel and Remicade as DMARDs. Doing so might be confusing to people new to therapeutic choices.

I just received in the mail a special health report on arthritis from the Harvard Medical School (Harvard Health Publications, 2002). In this monograph Enbrel (etanercept) and Remicade (infliximab) are in a special category -- Anti-TNF Compounds.

There is a separate category for the Disease-Modifying Anti-Rheumatic Drugs (DMARD), which includes:

Riadaura (oral gold)
Imuran (azathioprine)
Cytoxan (cyclophosphamide)
Neoral (cyclpsporine)
Myochrisine, Solganol (injectable gold salts)
Plaquenil (hydroxychloroquine)
Arava (leflunomide)
Rheumatrex (methotrexate)
Cuprimine (penicillamine)
Azulfidine (sulfasalazine)

Best regards,

jcwinnie


Never a member of the Hasty Pudding Club

To further muddy the waters, in my readings Enbrel and Remicade have been referred to as biological disease modifiers, which of course is different than the other DMARDS - - but still classed as a disease modifier. Before I went on Arava I was offered a choice between that and Enbrel, and the needle factor convinced me to try Arava first I have to give my dog allergy shots twice a week, hard enough to give shots to my dog, the mind boggles at giving shots to myself, I'm a wimp about shots.

Cheryl

Dogs love it when you leave your clothes on the floor

Which drugs can be considered "disease modifying" depends on the nature of the condition. A drug which is "disease modifying" for rheumatoid arthritis may not be "disease modifying" for spondyloarthropathies (the family of conditions which includes AS).

http://www.jrheum.com/subscribers/02/08/1583.html