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

25 year old male, I was diagnosed with AS about 2 years ago. For a couple years I had off and on pain in my left butt check (due to SI joint) that caused me to limp, but didn't think much about it. Then one day I just woke up (after drinking the night before) and couldn't move or rotate my hips without excruciating pain. After laying in bed for a week unable to move and taking vicodin + muscle relaxers + double doses of advil, the pain got a little bit better. I was able to move and entered myself into the local hospital. I was there for about a week before a doctor recommended I visit a Rhuemy. I was immediately put in Indomethacin 75mg SR twice a day and it got much better. as I understand it, this is not the normal way AS comes on...I'm not HLA-B27 positive and I have no history of this in my family.

I've been taking this NSAID for the past two years with only mild pain. Yes, I'm usual sore somewhere and I have to ice every now and then, but I live a pretty unrestricted life. I don't work out, but I didn't before either. I go on walks and even referee soccer which requires the occasional sprint. I've had iritis and prostatitis and the occasional flare that causes some limping. If I forget to take an Indomethacin, I can feel my neck start to tighten up and hot baths help. All in all, it's a pretty mild case of AS. Diets don't seem to work for me, though the curcumin I think is helping.

My rheumy (this is my second one), wants me to go on Humira. He thinks it will cause the AS to go into complete remission. My concern is that I'm doing quite well on the NSAIDs and I don't want to have the reduced immune response that biologics cause. I've been so stressed out trying to figure out which medication to take to the point of crying on several occasions. I'm worried that the NSAIDs will affect my heart and stomach, while the biologics can cause cancer and the reduced immune system. I'd hate to get bit by a mosquito and die...

So what do you guys think? Should I stay on what's working? It seems like both med options have their horrible side effects, even worse than the darn disease... From everything I've read, moving to biologics is supposed to be for if the NSAIDs don't work, but my rheumy seems to think it's a good idea anyway. Advice?

I'd go with whatever you're more comfortable with, I personally only take medication when I really need to.

If you're looking at long term, my Cousin mentioned something about Cyclosporin injections. Once a month and he said they worked for him. Only problem there is you trade off potential heart/liver/stomach problems for potential kidney/heart/liver problems.

I think we're all in your boat a little, man. If I had to choose out of that list though I'd stick with the NSAIDS.

Hi, i have been on a biologic for a good while and have had no ill effects. I was on NSAIDS (all of them) for years , they did nothing for me so my choice was easy.


Enbrel has improved my lot no end, no ill effects still have my hair and good looks. Listen to your Doctors, they generally know what they are doing.

It's a tough decision...Only you and doctor can make it...I have been Enbrel for the last foiur years because the NSAIDS didn't work...and I haven't had any negative side affects...And it has helped immensely with the SI joints...I am not HLA positive either but I have had this since I was a teenager...I wish I had done something about it sooner...In hindsight, maybe the damage to the joints would have stopped sooner and I wouldn't dealing with the effects now...

In terms of your immunity I have been told my my Rheumi that your risk is only higher in the first year. And I have heard of AS going into remission while on biological...In fact it may of happened to me...I don't want to push you in any direction....everyone has to make their own decisions but this is not a disease you want uncontrolled...You have to way the risks....Good luck

I was on NSAIDS for about 20 yrs & for the most part they basically controlled my AS enough that I could live my life & raise our boys. However, about 4 yrs ago it all came to a screeching halt when my GI issues could no longer be ignored & I had to quit NSAIDS for good. My guts were so compromised I became quite malnourished & sick & there was about a 2 mo stretch where we didn't know if I would survive.

My guts are slowly, slowly recovering through diet & LDN, and my overall health has been making painfully slow comeback as well. However, I cannot tolerate any pain-killers at all anymore, not even Tylenol...and the AS pain is excruciating much of the time, and it is advancing at an alarming rate causing increasing disability.

Since you asked, my recommendations are-

1) If you decide to stay on NSAIDS for a while, pay very close attention to any gut issues/pain. Don't ignore it ever. Faithfully take L-Glutamine as it is said to provide some protective effect from NSAID damage.

2) Do some google research on LDN & then find a doc who will rx it for you. It seems those who have been recently dx with autoimmune conditions have the best chance of it working effectively, but even if it just works to some extent it's worth it not to have to deal with the side effects of other treatments. It takes a while to work (6-9 mos) but it is the best autoimmune treatment available & has very few side effects. It's usually not magical, but it has a high record of effectiveness.

3) Reconsider dietary solutions. You said they don't work, but there's a good chance you may need to tweak it or give it more time. I read about a low-starch diet quite a number of years ago & blew it off, thinking I could never do it. There are very few decisions in life I've regretted more. I never dreamed I'd be fighting for my life due to NSAID damage, and never dreamed I'd have to endure the daily levels of pain I live with because of not tolerating pain meds. (Oh btw, my gut can't handle many, many antibiotics either. It's an issue when I get sick.) Dietary changes are, like LDN, seemingly most effective in those who've had AS a shorter length of time. Even if dietary changes don't solve your AS issues, there's a good chance it will decrease your disease progression to the point where you can take less NSAIDS...which my experience will tell you is totally worth it.

4) I've never tried biologics & lots of ppl have good success with them. However, I'm part of a IBD forum & you can't believe the litany of bad experiences many, many on the forum have had & some of those side effects have resulted in irreversible damage. Biologics can be a lifesaver, but are indeed risky.

No question you have a tough decision on your plate & we've all likely muddied the waters more than cleared them. I wish there was a clear-cut answer, but there is not. All we can do is offer our experiences & sincerely wish you all the best...remember, you are one that has to live with the consequences of the decision you make- not us & not your docs, so trust your instincts for what is right for you. I don't know if you pray, but if you do you can ask God for wisdom.

My as came on similarly. One days just woke up in agony. Hla b27 positive.

Hi Itas and welcome to KA.

I've been on the biologic Remicade (similar to Humira) for 8+ years with incredibly great results - it has literally given me my life back. I was taking NSAIDS for 25 years daily prior to that although they only helped my pain to small extent.

I have a cottage and every summer have been bitten by more mosquitoes than I could ever count... I am still here!

Of course there can be side-effects and risks with any treatment. If you experience any new side effects then talk to your doctor - awareness is key.

If biologics were available when I was 25 y/o, I can only imagine how much better my life would have been. Your Rheumatologist is right; studies show remission is more likely for people who begin a biologic early in the disease course. AS is a progressive disease.

Wishing you all the best in your decision making.
mig

Hi there,

I'm so sorry you are living with this. Sounds like you're coping pretty well, thus far, but it still sucks, I know.

NSAIDS gave me ulcers. I was taking stomach protectors and taking the meds with food and a full glass of water. Still got ulcers.

I started Remicade in July 2005 and have never looked back. When it stopped working as well, I switched to Enbrel. Like Mig and Alan, I have had very few side effects. Except I now have Alan's good looks.

Here's the thing, whether you choose to start Humira or not, you have to make this decision from a point of view of knowledge and information, rather than fear. Do your research. Look into not only the side effects, but the real life probability of them. When I started, my chances of being hit by a bus while crossing the road were greater than my chances of succumbing to one of the more frightening side effects of a biologic medication. Look into it for yourself and make your decision based on that.

That's the only way you'll make the decision that's right for you.

Hugs,

If the NSAIDs are doing ok at the moment one option could be that you hold out on them until you get even the slightest symptoms of gut problems from them, and at that point do the switch to anti-tnfs (before the NSAIDs have a chance to do permanent damage).

I had to stop NSAIDS a long time ago because of asthma.

I have taken so many of the Biologics. I was never able to take the same one for more than a year except for Imuran which I was on for about 8 years.

My drs. encouraged me that we had to stop the damage. I think it was hard for me to imagine what that damage could/would be. Now it is here in all of it's glory. Just educate yourself and make as good a decision as you can. I encourage everyone to do all you can to stop the damage. I don't want anyone to end up where I am and I know there are a lot of people worse off than me.

Blessings.