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Weddings and AS
#255580 07/25/13 07:39 PM
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New to the forums...I'm 22 and was just diagnosed with AS last week after several years of searching for answers.

I'm currently 4 months away from my wedding, which I am very excited about. But with this new diagnosis, comes new drugs. My rheumy switched me from Diclofenac to Dolobin, and so far the Dolobin has been unsuccessful at dulling my daily pain. I've been having to take 50 mg Tramadol 4x day to just get through my work day.

My next appt is in 2 weeks and I'm planning on asking about starting a biologic. After I read that study that was released recently about how starting early is better, I would like to start soon! My SI joints have already fused, and I haven't had an x-ray of my spine yet, but seeing as I have decreased in height by 1/2" in the past two years...I'm thinking there's something going on with my back too.

I would like to be stable on a treatment plan before the wedding in November. So my question is:

How long did it take for your anti-TNF drug to start working? Do you think it's too risky to start an anti-TNF now, in case of side effects and the amount of stress I'll be under for the weeks before the wedding?

Thanks in advance for your answers!

Re: Weddings and AS
luckypony #255583 07/25/13 08:59 PM
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Hi there - congrats on your upcoming nuptials!

In my personal experience, anti-TNFs didn't work. But in my daughter's case she saw dramatic improvement by the time she had a re-check at 10 weeks on Remicade (different disease, though.) People can respond very quickly; or it can take 3-4 months to notice a difference; or they can respond but not enough to feel like it's worth doing; or not at all. It is impossible to predict for any one person.

On the other hand, the risk of side effects that would have an impact on your wedding, or planning for it, is small. To be honest, NSAIDs carry a greater risk of side effects than anti-TNFs! Though in the case of NSAIDs, it's not so much immediate reactions but rather things that can develop over extended use of the drugs. Still, all drugs have potential risks and potential benefits; the trick is figuring out the balance and selecting the one that suits your own preferences!

Do you know if you are positive for HLA-B27? If so, that is one factor that favors success (though again, not a guarantee!)

I had not heard of Dolobin so I looked it up ... for other Americans reading, it's an NSAID that is available in the U.S., but not with this brand name. The generic name is diflunisal. It is in the salicylate family of NSAIDs: http://en.wikipedia.org/wiki/Non-steroidal_anti-inflammatory_drug#Classification

pony, don't be afraid to ask your doc to try other NSAIDs. If an NSAID is going to help, usually you see the difference within 2-3 days or sooner. It may take longer to reach maximum effectiveness, though. So if after several days or a week, an NSAID is doing nothing for you, it's time to move on to another one! As you can see in the link above, there are LOTS. A few that seem to be commonly used by folks here are indomethacin, naproxen, and meloxicam.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Weddings and AS
luckypony #255595 07/26/13 01:51 AM
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Hi, and congratulations on your engagement! My wedding is six weeks or so away, and I started biologics early this year. I personally worry about side effects from pills, not biologics. If there's a chance you could feel better any time, I'd go for it. You can always stop a medication if it gives you problems.

Like Jen said, speed of biologic success depends on the person, and some don't have any luck, unfortunately. I'm on my third type and haven't had anything miraculous happen. I'm still hoping for moderate success. I've felt a little with each. Good luck with whatever you choose.


Amy

27 years old
AS diagnosis 2013; neck pain for seven or eight years, and spreading multiple-joint pain for about two years
Also: Fibromyalgia, Hashimoto's, hypoglycemia, Raynaud's phenomenon
Meds: Remicade, Norco (10-325 mg), Gabapentin, allergy shots, Prozac, Synthroid (25-50 mcg)
Re: Weddings and AS
luckypony #255667 07/29/13 07:47 PM
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Thank you so much for your responses. They're very encouraging!

It's been two and a half weeks on this new NSAID, but I feel worse than when I was on Diclofenac. Hopefully I'll get a call back from the doc tomorrow about moving my appt up so I can switch to something else.

Jen- I am positive for HLA-B27, so maybe the biologics would work well for me? I'm not really that concerned about side effects affecting my wedding, because it's a small affair with close friends and family only...all who now know my condition and are very understanding.


22 years old. Female. Diagnosed with AS in June of 2013 but experienced symptoms for two years prior. Fused SI joints, fused L5-S1. Love and own 4 horses who keep me walking and riding around despite the pain. Married to a wonderful man, and struggling to deal with this chronic illness while being a newlywed and starting my first desk job.
Re: Weddings and AS
luckypony #255733 08/01/13 03:52 PM
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From what I have read, anti-TNFs (which are a subset of biological medicines, most of which are not used for SpA) seem to work better for people who are B27+ but there's no good way to predict with any degree of certainty whether they will work well for any given individual. Let us know what the doc says this week!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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