Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Pain Management question

Hi everyone--
I'm 30 and have had AS for at least a decade. Finally diagnosed last spring after your typical frustrations, etc. I'm neg for the gene, but have all the other symptoms except eye inflammation and fusing beyond the SI joints. I have flares, but am one of those AS-ers who am always in a decent amount of pain no matter what (always at least a 4-5).

My question to all of you has to do with the complex system that is pain management. I'm currently on Humira, but will have to stop this when I go to grad school, since the insurance then will only pay up to $1,000 per year on meds, which I'd burn through in 3 weeks. I was on NSAIDs until they blew out my stomach a few months back. Fortunately, the Humira has replaced the NSAIDs pain-wise. I also take about 2-3 vicodin a day.

One issue that's come up with my doc is tolerance. After taking the same amt. of painkillers for over a year, they're not as effective, and now I'm taking about 4-6 a day. I'm meeting with my doc next week, and I feel he thinks I'm abusing them, although I'm not--they don't get me high, they just make it possible to move around in the mornings and sleep through the night. I'm worried, especially since I'm going to be losing the humira, about effective pain management starting this fall.

I've tried methadone and MS Contin, but not only did they not affect my pain, they made me totally stupid and drooly. Oh, and I've tried the NSD, and that didn't do anything except improve my complexion (which, granted, was nice!)

My question is, what works for you guys? I'm afraid my doc is going to approach my situation all wrong and treat me like an addict, and I want to have some idea of how to approch this (sensitive) subject. I think that having time-release painkillers would make more sense, but am not really sure what other options there are.

I'd really appreciate your help!

I have been using a light therapy product called Anodyne Therapy. I have almost cut out pain meds with this device. www.anodynetherapy.com The best thing about it is that you can try it in a physical therapy office to see if it is going to help you. If it does you can get a home unit to treat yourself. Let me know if you have any questions.

Hi Miranda

I am getting a TENS machine. I take a lot of hot baths, and use a heating pad often.

I have elevated liver enzymes, and allergies to sulfa, sulfates, and sulfites.

With my up coming surgery I will be given pain meds, which they are aware will cause my liver enzymes to rise. They will only give me enough to get through the rough pain. Then I am back to using no pain meds.

Gerri

Hi There,
I can see your concern and also your doctor's concern re pain meds. I am sure he doesn't think your an addict, but I think he can see the possibility of you becoming one. The last thing you want to do is become addicted to narcotics. Nobody intends to become addicted and sometimes if doctors are really paying attention they can avoid this is the early stages. If you think A/S is painful , it is nothing compared to trying to detox from narcotics. I am really quite surprised your needing them when your getting good relief with your Humira. I would think this will also make him question the effectiveness of the Humira. Maybe you could consider a much less addicitive pain med. Also there are much safer ways to reduce pain via drugs which slow the firing of pain signals from your brain. Drugs such as Neurontin, Lyrica ,Amitriptyline, Effexor. If your still needing narcotics maybe the Humira isn't helping you enough. Have you tried any other biologics. If your wanting to P.M me I do consider myslef a self-educated pain nurse.I am a retired nurse who from trial and error have my pain under decent control without narcotics.


Janet

i'm on LDN (www.lowdosenaltrexone.org) which is hard to get a doc to prescribe, because it's not approved for AS, but it's cheap ($10-$40/mo without insurance) and it's helping me HUGELY. I'm like you, with the higer level of daily pain (I love it when I see these articles in Spondylitis Plus about ASers who run marathons . . . they don't have the same disease I do! lol) and I feel like I almost have a life again. it's really great, and I'm only taking about 2 Tylenol (not T3, just Tylenol) per week now, when I overdo it, and no other pain meds. This is a HUGE improvement for me.

I'm the first As Kicker to try LDN, so I'm sortof the guinea-pig . . . almost 2 months in now and LOVING IT!! =)

-Bridget

Hi Miranda,

Welcome.

I've started using, based on some positive reported results of another member of KickAS, Low Dose Naltrexone (LDN). I, like the other individual, have seen some positive results and am coming up on a full two weeks of use. You may want to ask your Rheumy about it. Mine had no problem writing me a script and was interested in learning about the results. Maybe yours will be understanding of your situation and will willingly write you a script. It is relatively inexpensive (as far as meds go) if your insurance situation is iffy. A month's supply typically ranges from $40-$70 (based on my experience).

A couple of other points though. It has taken my pain anywhere from a 4-6 to a 2-3. I do, however, still take an NSAID once a day. Planning on testing existence without the NSAID some time during my second round of LDN. I adhere to a Low Starch Diet. I have not been able to completely eliminate all starch from my diet yet. My sleep has been really good since starting LDN. I wake up in the morning nearly free of stiffness and discomfort. It made a recent 8 hour car ride to Florida a cinch. The trip back wasn't as good, but I think it was because I slept the whole week on a rather "doughy" bed.

Given your situation, you may want to explore this option with your rheumy. I encourage you to search historical posts on the subject for more information. Also, peruse this site:

Low Dose Naltrexone

While it is not a magic bullet, it may help you out with pain management.

Hey Miranda,
This is quite a predicament. No one should have to trade a current drug regimen that is working well, just to go to grad school. I'm in grad school as well, but I have enbrel covered through a plan independent of the grad school plan (like yours, my school plan really doesn't cover much).
Is there any possibility of getting funding to continue humira through another plan? I mean, it's working so well for you. It would be a shame to have to give it up. I know there's no way I could go off a biologic and do grad school. Are you sure you can do this on pain meds alone? What about a low dose prednisone? Or prednisone just for bad flares. Can you continue work on a part time basis and still get humira coverage perhaps?
What are you taking in grad school anyways?
Good luck with everything!

Hi Miranda and welcome to KA.

Have you access to a Pain Management Clinic in your area? People that I know who've gone to one have really been helped by them.

I know there are so many concerns about the heavier-duty pain meds and I can understand your concerns regarding your doctor's reaction. Frankly, we live with so much that having to worry about our docs thinking we're becoming addicts is one we shouldn't have to deal with. But it is a reality. And we can become addicts if we are not careful. I would be honest with your doctor about all of your concerns, including that of addiction. Since the Humira is helping, it must be obvious that there is a need. Let your doc know that you are worried about what will happen when you can no longer afford the Humira and ask him to work with you to find options that will enable you to live your life.

I hope you find something. You deserve to have a life.

Hugs,

Thanks everyone--

Yes, the Humira has been wonderful, and I'm trying to find a way to keep using it, but it's looking doubtful. I'll be in Boston, and they've recently passed the insurance requirement law which has in turn created all these odd rules and regulations for purchasing insurance. Pain-wise, I can go back on the NSAIDs, but I'm afraid they're going to wreck my stomach & GI track again.

And I understand the entire painkiller thing, wanting to avoid them, control them, etc. Unfortunately, up to now, they've been the most effective.

I will look in to both the TENS unit and the naltrexone. Thank you, fellow AS-ers!

Oh, and I will be in Boston for international studies. I'm a big travel junkie.