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Joined: Apr 2002
Posts: 32
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Joined: Apr 2002
Posts: 32
Hello,
I am curious about going on the biologics. I was taking antibiotics for about 25 years seemingly going into remission but there was still pain and I have been on Opiods for over 30 years. It seems to me remission should mean I don't have any more pain. Am I way off on my assumption that no more pain is remission? So I've taken
Sulphasalizine > for first 6 months
Doxycycline 100 mg MWF for 30 years.
Codiene 4's for 20 years
Norcos replacing the Codiene when I had my surgery 2.15 since I'd been on it for so long

Mprphine for 6 months, twice.
Am I too old to try the bios?
I sleep a lot, as much as I can and I spend my days with my right arm in screaming pain even on over 100 mg of morphine daily. My sugeon went in there to take out a calciem deposit that grew in my shoulder but when he got in there he couldn't find it. It feels to me like it is still there and I would like another MRI to see. He had the flu 4 days before my surgery and maybe he wasn't up to par yet. He did my other shoulder and he has a good rep but it still hurts. Anyway. That's life!


"those who were seen dancing were thought to be insane by those who could not hear the music"
Joined: Jan 2008
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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I'm on humira and i have a lot less pain.

however, i still start to flare a little after the first week (for the few days before day 10 when i' can take the humira again).

and since i have bone spurs in my neck, there is always going to be some pain associated with that, but now less since i don't have the inflammation making the nerve compression even worse. think of it this way: the bone spurs make the channel the nerve passes through smaller. inflammation does the same thing. together they make it really tight. just one and its less tight. can't alleviate the bone spurs, but can alleviate the inflammation, so that's what we do, with humira.

same thing with the bone spurs in the lumbar region and the damage to the SI. so, less pain, but some still.

and i still get some inflammation with the humira, like if i'm on my feet for many hours in a day. but nothing like before.

you never really know how something is going to work for you, unless you try it.

possibly the pain in your arm is from nerve compression in your neck? maybe a nerve drug like lyrica. a lot of people have good success with lyrica for nerve pain. unfortunately it gave me terrible migraines. i get migraines anyway from time to time, so maybe being a migraine sufferer made me prone to lyrica causing them in me. but i'd never heard of anyone else having that problem, i think when it comes to drugs, i'm often a special case when it comes to side effects.

lots of reasons we get pains. figuring out the root cause can be challenging. i wouldn't blame your surgeon.

i was misdiagnosed by PTs, orthopedists, physiatrists, and even a neurologist regarding my neck / upper back. everyone ruled out nerve compression; the neurologist even had me do an MRI, which early on didn't show much in the way of the bone spurs that were forming. This started back in 1998. From then until 2010, everyone kept saying "localized myofacial pain" to try to justify the trigger points and muscle spasms.

I started seeing my chiro in 2010....after a year of treating me, he gently stated that he thought i had been misdiagnosed and thus mistreated all those years. He really thought that the constant moderate to more severe at time muscle spasms which set up some nasty trigger points were really coming from nerve compression in my neck. A later MRI (in 2009) showed bone spurs, but the radiologist downplayed them as only "moderate". But doesn't matter, we now know they are the culprits to all the symptoms in my neck and upper back.

So:

1. i'm on humira which lessens the compression.

2. i go to an interventionalist who does cortisone facet joint injections at C2-C3 and C3-C4. yes, unusually high up, but that explains why i don't get radiating arm pain but rather its more localized to the neck and upper back and numbness in my jaw / face.

3. the chiropractor twice a week helps maintain me. keeps things moving. does a gentle form of ART. joint mobilization. soft tissue work. electrostim. nothing dramatic. gentle only.

4. ultrasound as needed.

5. triggerpoint injections as needed.

6. can only drive my 1995 saturn with 250,000 miles. can only sit in flat chairs. can only sleep in my recliner.

7. a real ease neck thing that helps put my neck in neutral alignment when the inflammation flares.

8. ice. especially for driving. interestingly, if i cool the nerves at the ends in my upper back, it signals back to the nerve root not to spazz out.

I do a lot of things to help the other pains in my body, but the humira now gives me a fighting chance.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Aug 2014
Posts: 45
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Posts: 45
I don't know. I know that you can still have a lot of pain from AS or joint damage or other arthritis, even if your other AS symptoms have gone away.


Diagnosed with A.S., DDD, scoliosis, sleep apnea -- Tested positive for HLA-B27 gene; family history; visible damage on x-ray; significant iritis; enthesitis inflammation; fatigue; feverish; peripheral arthritis; Osteopenia; heart, G.I., and skin symptoms - :: - Insidious and often disabling pain started in my teens & 20's with heel pain; chest pain and hip-buttock in my early 20's; low back pain in my late 20's; mid thoracic and cervical in my 30's. Biologics in my 40's. (On remicade)
Joined: Dec 2014
Posts: 202
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Dec 2014
Posts: 202
Some people with AS experience long periods of remission lasting months or even years.

Others have persistent symptoms that never go away.

With medication most patients achieve partial remission - you can be relatively pain free and have only mild symptoms.

In rare cases the disease suddenly stops and never returns however ossification of joints, muscle and ligaments remains with you for the rest of your life.

Joined: Mar 2002
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To me remission would imply no pain and no need for treatment (medications, diet etc..).

But to each their own for their definition I guess.

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Joined: Nov 2011
Posts: 108
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Nov 2011
Posts: 108
Is the pain at the end of your shoulder? I had this pain for 10 months. My sister for about 9 months. My first doctor thought it was a rotator cuff problem and wanted to do surgery. Good thing I got a second opinion. Found out it was a herniated disc pinching a nerve going into my shoulder and stopped just at the end. I had neck surgery and haven't had a problem with it since. My sister had the same experience. Luckily she new to check the disc first.

Hope this helps.


Teri
http://agluten-freemama.blogspot.com/

Pain since 1989
Mis-diagnosed until 2011
SI joints somewhat fused, lower back is trying to fuse
Osteoarthritis in hips
Follows NSD
Takes Ibuprofen only when needed
Loves to swim.
Still working 5 days a week as a secretary then 5 nights a week waitressing.
Joined: Sep 2001
Posts: 1,661
Platinum_AS_Kicker
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Platinum_AS_Kicker
Joined: Sep 2001
Posts: 1,661
Agree with your definition Tim therefore guess I've never experienced a "remission" or "partial remission" while on meds.



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