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Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282582
02/06/19 02:58 PM
02/06/19 02:58 PM
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WhiteCell Offline
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Oxycodone is used to relieve moderate to severe pain. Oxycodone extended-release tablets and extended-release capsules are used to relieve severe pain in people who are expected to need pain medication around the clock for a long time and who cannot be treated with other medications. Oxycodone extended-release tablets and extended-release capsules should not be used to treat pain that can be controlled by medication that is taken as needed.

Percocet contains oxycodone and acetaminophen which some feels is more effective that only oxycodone.


Starting at 18 yrs old; 1971 Reiter's Syndrome. Diagnosed AS 2001.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by Radio Frequency Ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282588
02/07/19 08:14 PM
02/07/19 08:14 PM
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I have read through the comments and can possibly add to the discussion with a few more ideas. This type of disease takes a multimodal approach. I can only share my story, so I will. It took seven years to diagnose my AS, but I also have fibromyalgia and severe anxiety. The things that limit me the most are: Pain, Anxiety, and fatigue and they are in constant competition for who's leading the way that day. I had to stop working back in October 2018, because my body couldn't handle the job pacing.

I am currently on: enbrel, methotrexate, celebrex, sulfasalazine for my AS, and I am still in pain. I have had this disease now for about 10 years and have had to relearn just about every aspect of my life. I had to learn how to exercise, so I went to physical therapy so I could learn to target the areas that I needed to strengthen the most (I needed core strength and overall muscle strength). I will never do rigorous exercise again, and I am okay with that, but you have to move. Your body over time starts to compensate for the pain and you lose your range of motion. I use chiropractic when my neck goes out. It greatly reduces the pain in my neck. I have to pace myself on days when I feel really good not to overdo it and pace myself when I don't feel well. Don't discount things like yoga or pilates to help maintain muscle strength. I see a counselor to help me with coping with pain. Stress tends to increase all of my symptoms ten fold along with cold weather. It is also cyclical, there are times of the year that I feel the best May-July, I go into a flare every October when the weather starts to get really cold, and again in January or February when it gets colder.

If you look at your pain and know what triggers more pain weigh the pros and cons of doing whatever it is that causes you pain. If your pain starts out a 10, look at doing several things to reduce it. Pain level that starts at a 10 can be reduces by a point or more by taking a multimodal approach: medication, exercising, reducing stress, going to the chiropractor etc.

Some days are more challenging, and I do believe each of us goes through or has gone through a grieving process. There are many great options out there and coming to this website has made things a bit more tolerable. I hope this helps.

Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282611
02/11/19 03:44 PM
02/11/19 03:44 PM
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Boston, MA
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Hi Alex. If there is a point of no return, it takes a long time to get there. And you can push that date off for a long time, or forever, by doing what you can to find the best treatment, exercise, etc. I have had AS for at least 37 years (diagnosed!). For much of that time my condition was severely under-treated. I was not on a biologic until almost three years ago. I have had both my hips replaced, both SI joints are as completely fused as is possible, tore my Achilles repeatedly, just awful rib-cage pain, been unable to walk sometimes (pre hip-replacement), my hands and fingers are a mess, uveitis, spent years essentially unable to turn my head to safely back up a car; frankly I could keep writing issues I have had ALL DAY LONG. There is undoubtedly a massive amount of joint and ligament damage in my body. I have had so much pain in my life that it has changed me, no doubt. But as I posted elsewhere, I just started playing ice-hockey again after taking fifteen years off, and I don't suck. Humira is (for now) the right medication for me. It has changed my life and I hope it keeps working forever, though it probably won't; I have already had to go from once every two weeks to once every week.

Keep looking. Keep trying.

And if you recover enough to work, look into government jobs.


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282638
02/14/19 06:10 AM
02/14/19 06:10 AM
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Alex140 Offline OP
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Oh wow, I guess I'm not worried about it being too late for me then, at least medically.

As of now, I'm continuing my cosentyx, and have been put on a new dosage of prednisone, 2000 mg of sulfasalazine DR daily, and folic acid (don't know why). Not sure how much of a difference this will make, but I'll have to wait and see I suppose.

Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282640
02/14/19 01:30 PM
02/14/19 01:30 PM
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Posts: 67
Boston, MA
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Alex,

I think you got my point (if there was one in my rambling), but just wanted to clarify that I am not recommending my experience to anyone. I wish I had been on a biologic 38 years ago. My primary care physician of almost 20 years should have lost his license for the lack of care I received.

Mike


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282641
02/14/19 03:16 PM
02/14/19 03:16 PM
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Originally Posted by Alex140


As of now, I'm continuing my cosentyx, and have been put on a new dosage of prednisone, 2000 mg of sulfasalazine DR daily, and folic acid (don't know why).


Just fyi: Sulfasalazine affects folate absorption. That's why you have to take folic acid. It's very important.

Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282760
03/12/19 09:10 PM
03/12/19 09:10 PM
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Welp, even if it's never too late to get proper treatment, that doesn't mean it's not too late before certain tasks become harder. As of last week, my pain increased again, and now even basic computer usage has become painful. My rheumatologist has put me on diclofenac as well, but I doubt it'll make a difference.

What's weird is that he once again raised the concern that I have entrapped nerves or tendinosis, even though those ideas were thrown out almost a year ago. I've already had tests that did not lead to the former, and in regards to the latter, another doctor said that he saw tendinosis in my left elbow, but that it shouldn't be causing anything this serious. Plus, I already tried physical therapy for that and it did nothing.

Side note, is enthesitis pain usually accompanied by muscle twitching? A lot of the time, when I've used my arm or leg too much, the skin around my elbow or knee starts to twitch. It's actually the only external sign that anything is wrong with me at all.

Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282763
03/13/19 01:46 PM
03/13/19 01:46 PM
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It is never too late for treatment because of the inflammation issues (cardiac damage etc) and as far as joints/tendons it depends on the joint/tendon and how you use them.

My hand tendons are a mess but now that I went to hand therapist, I use them differently and am preventing more damage.

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282807
03/24/19 09:34 PM
03/24/19 09:34 PM
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Starting to think there actually is a point of no return. Even if it's possible to find something that gets rid of the pain, there's no guarantee that I'll find it before it's too late.

My pain has somehow gotten even worse. Now just walking around the house has become pretty painful, my left knee gives out very easily and sometimes I feel my leg go partially numb. I'm not even sure if it's possible to find a job I can do at this point, meaning I can't make any money. And since there's no way to prove that I'm feeling this pain to insurance companies, I won't get any money for being disabled, which means I won't be able to afford any future treatments. At this point, I might be completely screwed.

Re: Is there a point of no return for AS/enthesitis? [Re: Alex140] #282809
03/25/19 03:41 PM
03/25/19 03:41 PM
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Originally Posted by Alex140
Starting to think there actually is a point of no return. Even if it's possible to find something that gets rid of the pain, there's no guarantee that I'll find it before it's too late.

My pain has somehow gotten even worse. Now just walking around the house has become pretty painful, my left knee gives out very easily and sometimes I feel my leg go partially numb. I'm not even sure if it's possible to find a job I can do at this point, meaning I can't make any money. And since there's no way to prove that I'm feeling this pain to insurance companies, I won't get any money for being disabled, which means I won't be able to afford any future treatments. At this point, I might be completely screwed.


Buddy, you sound like you're in my shoes. I am praying that you are not in Canada, because at that point it's going to be even worse.

Time to head over to one of those quasi-socialist European countries..

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