Kickas.org Forums Treatments, Drugs and Alternatives AS Pharmacy Enbrel

I have started taking Enbrel and have high hopes. But my question is this..Why isnt everyone with AS on Enbrel or the equivalent? Every post I have read on the topic seems to say the same thing. That it works! Are these mostly personal choices or Dr's or what? Just curious....

Hi Sasha, My sense is that rheumys are taking increasingly aggressive approaches to their treatment of AS, and so starting patients on the biologics fairly quickly in the process, once NSAIDs are ineffective or there is substantial damage. The biologics can be extremely effective in reducing the clinical symptoms of AS, but there are some pretty serious potential side effects and they don't completely stop/reverse damage. Also, with AS it is one of those diseases where you can only be positive that someone has it when it is, in a sense, too late (i.e. damage appears on x-rays). Some rheumys are reluctant to expose a patient to the risks of the biologics until they are 100% sure that they have AS. And some patients are equally reluctant to take such potentially risky meds. And then there are the costs of these meds--incredibly expensive and difficult to get approval from insurance. A lot must depend on an individual's insurance coverage and also whether or not they have a firm AS dx. I hope that the day isn't far off when a. we will know more about the genetics of AS and can diagnose patients from doing genetic screenings for the handful of genes that seem to be working together to cause AS; and b. the biologics are accessible to anyone who wants/needs them.

Monnica

i second what monnica is saying from my personal experience on the other side. since i only have symptoms that could be interpreted as arthritis or an endocrine problem and there is no hard evidence except for symptoms of tendon problems and my poor ole SI, the doctors don't want to "try" the biologics for the reasons monnica mentioned. but the last rheumy i went to said that if there was proof, they'd go right to the biologics because they work (for so many). but also like monnica said, i hate the idea that (if i have AS) i may have to wait until the damage is evident and in the meantime i have to suffer and manage and deal with very painful and (at times) disabling symptoms; i wish i could just try the drug and if my symptoms don't improve, well, we can rule it out, but if they improve, then BINGO! in the meantime, patience.

at least for me, i've been waiting so long for a diagnosis (10 years) that i don't think i'll have the same shell shock of people that aren't prepared for the news, especially young people in their 20s. of course i don't want a diagnosis of AS or anything equally bad. but the not knowing and thus not really treating a disease but rather just treating symptoms (and not always too successfully) is hard too.

sue

For me the Enbrel and the Humira did not work. We tried hard. My hopes were high. I do believe most people have good luck. I have always had problems with any medication working the right way for me. Funny story, After my surgery two years ago. I was on major Percacets and I cleaned both bathrooms and mopped the floors and lots of other stupid things at 3am. I couldn't sleep and couldn't sit still. So I clean. I was suppose to be mostly bedrest. So yes my hopes were high but I wasn't surprised either. Next week I find out whats next to try. I say even though it didn't work for me try it because it does help most "normal" people. And good luck.

Sasha, The benefits are GREAT! One it stops the sed rate count from excelerating (which is what is causing your pain, fusion of your bones.) It is very important to keep a watch on your liver enzymes as suggested by your MD. The process of slowing the sed rate count (which is an autoimmune disease process) is beneficial to keep the progression of the disease at bay. Written by a friend to Bc

The reason people are not on Anti-TNF's is because of their insurance or other medications have been affective. Plus the treatment process suggest to try alternative medications before starting Anti-TNF's. Insurance again! Some insurances will not pay for the drug unless everything else has been tried first no matter what the doctor wants. Technically what the doctor prescribes and what the insurance pays for is two different things. There is more risk with these drugs only because the long term affects are not in yet. Just think we are the test rats!

Tim

I'll second PattyD1's comments.
I've also done both Enbrel and Humira (I'm taking the Humira shots weekly now) and they aren't that great - for me anyway. My doctor asked me if there was any improvement so I gave him this analogy...I appologise for being repetitive:

Imagine being hit over the head with an axe-handle every hour of every day. Then one day, you only get hit every 1.5 hours...is that an improvement? Of course it is, but how about NOT getting hit at all?

Despite my reservations about wasting good money, they keep me on the biologics anyway. Even if it is only a 5% improvement, every bit helps. Soon I will be a civilian again and if I have to pay for my own meds...there is no way I would ever pay for these shots!
Up here in Canada, I understand the shots cost about $1,500 a month? Or is that a year? I don't know but whatever it is, it's probably more than most people could afford. It's waaaaay more than I could afford, that is for sure.

Great analogy, I may use it sometime!
And you're right, enbrel and humira are both about $1500/month here in Canada.

Hey Sasha
My experiences in getting biologics have all been wrangled into insurance coverage. My rheumy and I fought for more than a year with the insurance company for Remicade. Then when I had to switch to Enbrel we had to go to battle again. Basically insurance companies have a protocol that you have to follow to get their blessing and biologics are way down the list. you have to try all the useless things first.

And biologics aren't everyones saving grace. I took Remicade infusions for quite some time and I built a tolerance to the drug. Then I switched to Enbrel, for me it doesn't hold a candle to the Remicade. Others have side effects that are so uncomfortable that they can't take the drugs.

The wonderful thing about AS is that it hits everyone a little bit different. And just about the time you start bragging about having found the Holy Grail of treatments it reaches out and smacks you back to reality.

Keep Kickin'AS
Chris

Hi,
My wife is a member of a Pancreatitis Forum from which she derives much support and light hearted chatter and as a long term AS sufferer she encouraged me to join a similar site, so here I am.
The first thing I read was the number of comments being made about Embrel, a medication that I was prescribed after representations made by my specialist Professor Spirio.
I began self injecting once a week and within a few days began to feel real benfit. After about a month I noticed a problem with my left eye, and having previously had an episode of uveitis I visited the eye dept of our local hospital thinking this was the same.
Sadly they diagnosed an inflamation of the optic nerve, and told me that as they knew very little about Embrel and had no idea of the long term effects, so they refused to continue prescribing it.
As fellow AS sufferers only you can appreciate the impact of a potentially life enhancing drug being taken away, and I'm still atempting to come to terms with what the future holds.
I know this comment is long winded and rather pathetic, but the future which could have been so different is back to the usual.
Gron