Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question: Does humira halt or repair damage?

This drug has some freaky/scary side effects. The low starch diet has had limited success (ok it hasn't been followed like a celebrity wedding lol) but can these tnf benifits out weigh the dangers?

Hello Spondys from sunny California- Love to talk about TNF blockers. Took Etanercept for 17 months and had some positive results. Primarily not as stiff. Changed to Humira Jan. 2008 and I am very pleased at the results. Stiffness in the a.m./after sitting for long periods/after laying down, has diminished to less than five minutes of actual stiffness before going away (from 8 to 3). WOW! Humira is praised by the medical profession for its ability to actually slow down the progression of AS and I think for me it has. No new surgeries (too many to count prior), labs look good, scans look good. As it was explained to me, the drug enters into your body and disguises itself to look like our own antibodies. In our disease we reject everything in our bodies, but this disguise works and the little Humiras get to work undisturbed. My immune system rejects babies (5 miscarriages), etanercept (embrel), infections big time... But again, Humira has been working and my immune system has not rejected this TNF blocker (as yet)!

The side effects are minimal. Slight weight gain, and a bit of fatigue from the drug (not to mention the AS's fatigue). Go for it and I truly hope this helps you as it has me.

The Best...And for everyone out there I would love to know more about Sinclaire's book and your thoughts. I just started reading it after finally receiving it from Amazon.

My rheumy says that Humira doesnt affect the course of the disease, jsut the pain - but I suspect she's wrong...

I have had as good results as from diet alone, as people report from the big drugs. The only side effects from the diet are intense pizza cravings and butter tart, hahaha

I read an article from a Johns Hopkins rheumatologist who said that the jury is still out as to whether anti-tnf medications like humira will slow or stop fusion. I don't think they will reverse any damage. I think any current joint damage would be permanent.

Craig

Hi TitaniumGirl20. How long have you had AS? Sorry to hear that you have had multiple surgeries.

I do low-starch diet and also take Enbrel. Been on Enbrel for over 3 months so far, with zero side effects. I've been sick once or twice, but so was my wife and my kid, so I can't pin that on Enbrel exactly. Energy is good. No starch/low starch helps, but is no panacea for me, but I like it enough to keep doing it. With the enbrel, some days I feel almost normal (pre-AS days), and some days I'm a bit stiff, but pain is never very high anymore. I don't know if it will slow the disease, but it certainly increases quality of life. BTW - I view the side effects of anti-TNFs to be no worse than NSAIDs. True, I may get sick more, but at least I won't get a bleeding ulcer. Every med has side effects, so it's a matter of weighing pro's and con's for your own unique case.

You might inform your doctor that if Humira acted only as a pain killer the insurance companies would never pay the $32,000 per year per person for treatment when less costly pain medications are on the market. I think we have to seperate joint damage from fusion. Reports indicate Anti-TNFs have not shown to prevent fusion but there is evidence to indicate they do slow the disease process and joint damage. There is also some evidence that the drugs lose effectiveness over time. Hopefully this is not proven as true or the insurance companies will remove them from their drug lists.

Time will tell,

Tim

I think many people overlook the big value to TNF drugs in many ways. The TNF drugs can prevent damage from inflammation. Things like heart problems, knee joint narrowing, hip replacements etc. Yes they are very effective at avoiding this kind of damage. Can they reverse existing damage ...no

Now as far as the fusion process well we just don't know yet. There is evidence that in some patients fusion continues despite TNF treatment and it others it seems to slow or stop. I suspect it is a very individualized thing.

I was very strict NSD for 6 months and saw only small benefits. I have been LSD for 3 years now and while it helps some it is no big miracle for me and many others on the board.

me thinks your doc is an idiot. The majority of AS patients never do fuse or see significant changes on their xrays. Eliminating the inflammation does indeed change the course of the disease and many of the non fusion complications for the many who will never fuse anyway.

same as pain meds OMG lol

Hey Steve! Isn't it true that about 70% of AS sufferers will not fuse or have significant changes on their x-rays.