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Joined: Apr 2002
Posts: 3,607
Megan Offline OP
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Joined: Apr 2002
Posts: 3,607
Quick question:

To those of you taking (or have taken) narcotic analgesics for management of AS:

Which narcotic did you take?
What dose and schedule?
For how long?
For what area of pain in your body? (i.e. SI joints, ribs, neck, etc)
Did it help? (On a 0-10 scale, what was your pain on and off the narcotic?)

Thanks in advance!

Joined: Nov 2012
Posts: 97
MSK Offline
Apprentice_AS_Kicker
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Apprentice_AS_Kicker
Joined: Nov 2012
Posts: 97
I used ultram(tramadol 37.5 mg) for lower back pain, for 2 years.
Mostly, I used it when my pain was very high, more than 5/10.
And when i needed to have some friends/family time.

3-4 times per week at average.

Worked like a charm and made me feel very good(psychologically too because of its antidepressant effect)

I didnt have complete pain relief. %60-70 at best. But it was enough combined with antidepressant effect.

Now, it doesnt work anymore.


Diagnosed at July 2012 after 8 months of pain. HLA-B27 negative.
NSAIDS don't really work. I can't use Anti-TNF because i had tuberculosis years ago.
Wish you all best health, M. Sami Kuzey
Joined: Sep 2001
Posts: 8,397
L
Lon Offline
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
L
Joined: Sep 2001
Posts: 8,397
Hi!
oxy this and oxy that. morphine pills Hydra this and hydra that. tramadol percacet(sp) and its cousins. and of course alcohol....

Before I knew what was wrong, in junior high and high school, first year of college, I used physical contact as a relief from the pain. Fighting at recess...being cheered to slug the big guy was as much pain relief as any pill.
Kissing someone's girls friend gave me far more endorphins that any pill.
Now I try and use prayer and meditation .. but I still need the help of a pill at times


I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
Joined: Jan 2010
Posts: 2,105
C
Major_AS_Kicker
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Major_AS_Kicker
C
Joined: Jan 2010
Posts: 2,105
Maximum doses of codeine (300 mg in total per day) never did as much as full doses of NSAIDs. Simple reason - NSAIDs addressed the inflammation, and codeine didn't. Just a pity I can't take NSAIDs any more and am not eligible for antitnfs.

Joined: Dec 2010
Posts: 456
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Warrior_AS_Kicker
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Warrior_AS_Kicker
W
Joined: Dec 2010
Posts: 456
I used to take one Tramadol a day in the morning to get going. I think it was 50 mg. It worked for about 6 hours and brought the pain from moderate to mild. I was on it for 8 years and it didn't lose effectiveness. It really helped me function. When I tried to increase to two a day, I over did it and then had hell to pay so I just stuck with taking one a day. I had no issues coming off it to go on LDN.

Last edited by Winter; 07/25/14 12:12 AM.

Meds -Hizentra, leflunomide, Prednisone
Joined: Jul 2014
Posts: 12
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New_Member
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New_Member
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Joined: Jul 2014
Posts: 12
I use an average of 90 mg oxycodone and 2-10mg-325 Tylenol per day.
I stopped all opiates and then found out how much they make my pain of 15yrs. bearable.

I don't think narcotics are the proper pain reliever for AS.

I start 40mg. Humira any day now and have started the NSD today. I am really hopeing the latter takes my AS symptoms/pain/stiffness away and I naturally forget about needing the narcotics.

I am a new member and have so much to learn!

All the best to everyone

Joined: Apr 2002
Posts: 3,607
Megan Offline OP
OP Offline
Joined: Apr 2002
Posts: 3,607
Thanks everyone for your replies. I was just curious as both my GP and my rheumy say that my success with narcotic meds is all in my head.

I tried a ton of NSAIDs, tramadol, celebrex (worked very well), NSD, biologics, but for one reason or another, I can't use them now. I've been using the lowest dose of morphine sustained release that they make, with great success. However, my docs are taking me off of it because they insist that it won't work for pain. It works incredibly well for my neuropathic pain (unrelated to AS), and moderately well for my AS pain, if you ask me. But I guess my opinion doesn't count? Anyway, I was just wondering if it actually worked for anyone else, or if it really was just in my head.

Thanks very much!

Joined: Jun 2014
Posts: 53
Active_Member
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Active_Member
Joined: Jun 2014
Posts: 53
Hi Megan,
I have tried most things for the pain of as and psoriatic arthritis. Every time I tell my rheumatologist that his remedies ie methotrexate ,arava ect does not help with pain he merely points out that his aim is to stop disease progression . He can't help pain from existing damage. I am currently on a build up to find the best and lowest sustainable dose of targin for me.
Targin is oxyconene//noxolene. Noxolene is very similar in make up and what it does to naltrexone. It is a strange drug . It combines an opiate with an opiate antagonist. Both my gp and nephrologist like it. They have both said it is the bane of drug addicts as it delivers pain relief without a high thanks to the noxolene . I am currently on a dose of 15/7.5 ,that's 15 oxy and 7.5 nox twice a day. It is controlled release and it helps my pain greatly. 8-9 without 2-3 with. My bp is a good indicator of how it is working. At a lower dose it was not lasting the 12 hours and I was getting bp spikes of 190/120 from break thru pain flares. When we did the last targin update my bp dropped to 120/80. it also helps with my severe peripheral neuropathy. For control of my as and psa as well as nephrotic syndrome I am on cyclosporine...Ron.

Joined: Jan 2009
Posts: 4,501
Likes: 1
Supreme_AS_Kicker
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Supreme_AS_Kicker
Joined: Jan 2009
Posts: 4,501
Likes: 1
At the beginning, I had been on hydrocodone 7.5mg BID, then 10mg BID. Got referred to pain doc, who continued that dose at first. Then raised to 10/325 QID with a sciatica flare. Flare continued and got bumped to oxycodone 10/325 QID. That dose has held for 3 yrs.

Pain sites have been varied: SI and spine primarily. Also feet, enthesitis, wrists, shoulders and lumbar. Occasional nerve pain from sciatica and other levels in lumbar spine. Some nerve pain from neck that is referred down arm to middle fingers. Also have a compression fracture at T9 that causes pain at times.

Haven't been off the pain meds for a few years, but when I get bad flares, pain levels go to 7-8. I live at a 6 most of the time, but it's a controlled 6. When it hurts and I take a pill, the pain can go down to a 5. When it's out of control, it starts at a 7-8 and stays there despite the pills. On days like that, I may take 5 doses a day (have a small stash of extra pills for emergencies--on some non-working days, I may only need 3, so that 5th pill is one saved from another day). When my biologic is working, there are better days where I am at a 5 most of the time on 4 oxy per day.

On work days (and I work 2nd shift in a hospital laboratory), I usually take pills at about 0800, 1430 (begin work), 1900 (dinner break) and 0100 (about bedtime). This coincides with my working hours. Being that oxy is a short-acting med, the best bio-availability is the first 4 hrs of the 6 hours between doses. To keep that higher level during my working hours, I take it every 4-5 hrs with my doc's blessing. The rest of the time out of 24 hrs isn't so crucial unless I'm in a flare. I have the ability to rest/sit/walk/stretch, unlike at work.

My pain doc has put me on gabapentin 900mg BID early in my time with her. She tried a couple of muscle relaxants and I've settled on Zanaflex / tizanidine to take at night. Have a couple of PRN meds to try for special issues: Voltaren Gel (which is used on SI joints and other sites afflicted with enthesitis), and Lidoderm patches (not much use, but have put them on patellar tendons and Achilles tendons on occasion). But none of these are narcotic/opiates. I just tossed in mention of them because it takes all of this to keep me relatively comfortable. I use an NSAID Mobic, but that's from the rheumy. Also have steroids from rheumy, in the form of prednisone 5mg tabs for flexibility.

Hope this helps. Sorry so long.


DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
Joined: Feb 2011
Posts: 1,968
Pea Offline
Captain_AS_Kicker
Offline
Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968
Megan, I think you need to see a Pain Specialist who will keep you on what's working and go from there. It's obvious your Rheumy and GP aren't interested. They have no idea how much pain A.S. can cause. Your opinion does count and needs to be heard by Dr.s who will listen.


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
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