Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group To go on biologics or not...

Thank you so much for your responses. I really appreciate hearing from others' experiences. Quite frankly I just enjoy interacting with people facing the same concerns as me. To those who haven't responded, I'd still love to hear from you!

Itas,I've been pondering the same question for quite some time.It really is a personal decision.There is always good and bad,in every situation.
I'm on hold for now with the biologics,as I just had a left Hip replacement,due to the a.s.
ATM Im on the NSD and Im really hoping for better results since my hip is fixed.
GL in what you decide.

Tim

Hello there and welcome to Kickas

I was on azulfadine for 6 years and it worked great. It has some side effects, but they caught up with me eventually (elevated liver enzymes). But I think more often most people can stay with the medication for quite a while and I still recommend the medication as i think I am in the minority with having to come off of it.

That would be another alternative.... personally for me, I prefer NSAIDs only short term... not too effective and can really damage the GI.

Now I follow the No Starch Diet with good results.

It is a personal decision what ever you choose, you must feel comfortable with whatever you do.

Best to you,

Tim

I am hesitant to respond to questions about biologic's. I am one who had problems them, and can no longer take them. I was on enbrel for about 10 months. It took about a month to kick in then I had 6 great months with no pain. Then I started feeling dizzy all the time. I fell a couple of times because my leg didn't move when the rest of my body did. I was diagnosed with MS. I don't think that enbrel caused it, just brought it forward. The good news is that I have far less pain now than before I was on enbrel. I can run again, but I still have some problems from MS. I would not let this stop you from getting on a biologic. Having MS show up is rare. I would just say let the doctor know if you start having strange problems. For the MS I was on Avonex for several years, and that may have helped the AS?

I am so sorry Itas that you have to make all the hard decisions that we all have had to face square on. We have a disease that call's for hard decisions. No easy answers. Diligent research on what is out there to use along with what your Dr. is telling you will pay off in the end. I am 55 and wished I would have had all of the things offered now. I have been on Remicade for only 2 years but it has cut my Uveitis way down as well as my enthesitis. You have to make the decision that is right for you. The biologics will slow the progression and nobody can tell you how fast you will do that. The NSAIDS usually end up giving everyone ulcers and the DMARDS can help but may have side effects. Trying the No Starch Diet is usually the first line of defense.

Those are usually used to treat our disease. Pain can still occur and that is a whole other subject. Glad you found our site and I hope you get answers to help you reach your decision.

Steve, thank you for chiming in. I was hoping you would. People need to hear about good experiences and bad about these meds. With reactions such as the one you had relatively rare, it's not often people actually talk to someone who's had one. Your input is important.

Love and Hugs,

I'm in a similar situation - 32 yo and still in the early stages of AS. I've been taking Celebrex regularly but wondering if I shouldn't be on a biologic since I've heard use in the early stages of AS are when remission is more likely.

My rheumatologist doesn't recommend a biologic unless you're having significant pain and stiffness despite regular use of an NSAID.

Meanwhile, I've developed GERD and mild asthma most likely from using Celebrex and hoping the side-effects don't get worse. I used to take Celebrex only 1-2 times a month as needed, but lately I've gone to taking it almost daily.

What a tough decision to make since you are getting by on an NSAID. Medications are a risk but so is not treating the disease. What are your instincts telling you to do? Follow your instincts.

Without the biologics, I would be bed bound. I was like you, getting by without the big guns for some time and then it hit me hard. Couldn't sit, stand, walk or sleep comfortably. It was a nightmare and it took awhile to figure out a biologic my body could tolerate again.

Let us know what you decide to do.

I would not touch them but if folks want them that's cool.

the jury is still out on these meds and God knows what will be revealed further on down the road.
the TNFs have been out a relatively short time for ALL the data to be in...no thanks

PS very often remissions can and do occur without meds or diet modifications.....my AS flew out the window in my 30s to 40s