Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newly diagnosed with questions

I am new to the site and was diagnosed with AS a few months ago, shown in MRI but negative in blood. I also have Fibro along with a never ending list of health problems. I am 28 years old. My doctor is ready to start me on Humira next week (since we have tried everything before the TNF blockers). I am really scared about all of the horror stories I have heard and read about Humira, etc. but very few relate to AS (ususally RA patients). Can anyone give me advice on if I should take this medicine or not? I know my parents and husband are worried and I want to be able to give them peace of mind about the side effects. Thanks!

i've never taken any of the biologics so i can't say from experience, but others who have experience with the biologics should find this post, if not tonight, then tomorrow.

i just wanted to say hello and welcome to this site.

Sandy, any risks that the biologics have are really rare, especially when you compare it with all the damage to your body that not using it can cause. I started Humira on June 2. The next day, my fatigue started to go away. It was gone the next day and by the third day, the pain was greatly reduced. A few days later, we went on a pain free road trip of almost 5,000 miles. It has been like I have a whole new body. I can do all the things that I had to give up.

Living in pain changes you, both physically and mentally. After a time, you will start getting depressed because you can't do the things you loved to do. You will become so fatigued that cleaning house is too hard, not to mention being a wife and mother. As your spine starts fusing, you could spend the rest of your life not being able to look up or can't turn your head from side to side. Treat it aggressively and treat it NOW.
Donna

Hey welcome. Side effects are very rare with all these new drugs. I have been taking enbrel for last 6 months. Am ok so far.

There is really no cure for this so, the best alternative is to stop it from progressing. So like Donna said, treat it aggressively and treat it Now.

hi there!
i know there are lots of folks that have had great success.

I too had great success with a biologic. Remicade. It gave me relief in my back that I had not had for almost 20 yrs. Unfortunately the side effects were almost deadly for me. I developed pneumonia 3 times. suffered from life threatening asthma attacks. my asthma had been under control since I was a child. recurrent respiratory infections. it was horrible. i'm surely not trying to scare you my friend. just be careful. i've had this terrible disase for over 35 years and the biologics suppressed my immune system.

in the end my doc and rheumy said OFF. i chose to breathe. nothing scarier than blacking out from asthma attack while your little ones are watching. i havent had the problems since then. i also tried enbrel. the first time around i had some relief in knees and hands. the 2nd time after remicade a year later and i broke out in vasculitis.

for now its just norco for pain and soma for muscle relaxer. read all you can and decide. only YOU know whats best for your body.

keep us posted..and welcome! buggy

Hi there! Welcome to our little group.

I've been on enbrel for years and years, with no real problems. I was on antibiotics a couple of times for bladder infections, but recovered in a normal time frame.

I've always just been careful to avoid sick people, wash my hands all the time, and make others that come into the house wash their hands too. Just common sense stuff.

It's wearing off now and I want to switch to remicade, but for the most part, it was a miracle drug for me!

Good luck!

Hi, and welcome to the KA family. Know that you will be given all the support and firendship here.

As for the biologics, why not check out the halternative forum group here and also the LSD/NSD diet group (low and no/starch diets). Also look at the LDN - low dose Nalrexone on the alternative forum.

I am on LSD (low starch diet) and LDN at 6mg. Hvae an antiinflammatory and pain meds for break through, but rarely have to take any of htose. LDN and the diet do the trick for me, and, no side effects.

But, IF you do decide to go the biologics route, side effects, if any, won't show up for a longish time - unless one is really unlucky... Any number of AS patients are on the biologics, and yes, some do indeed suffer from the side effects, no question, but dos not happen to all. We each are so different.

Hope that you can reach a good solution. Take care -

Molly C (France)
Keeping on Keeping on

the supposed horror stories about aTNF meds are, imho, highly over-rated; and ,in many cases creations of hearsay blogosphere babble and drivel.

Nsaids kill 10,000 people a year in the us and no one goes on and and about the big pharma conspiracy and blah, blah, blah.

if your not sick, don't have an infection etc, etc, etc...i personally believe the real statistics don't support the sense of panic some folks whip themselves into.

good luck

I have been treated for AS since march. I take enbrel and I love it!! I also take a muscle relaxer and indocine and ultram. I do occasionaly have flare ups but they are not as bad as they used to be. I could not get any drs to listen to me for a couple of years. Good luck to ya!!

I had a heart stopping reaction to Enbrel so I can't take any other biologics. Its a rare side effect though. In addition to what others have said about treating it aggressively, also remember to exercise!! Especially when you don't feel like it. Good luck!!

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Hey there jhnii!

Whoa, Blackfoot Idaho?????I live in Firth, just 10 minutes away from you!! How long have you had AS??

-Donette