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New Board!
#280709 07/06/18 12:55 AM
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Hi There,

This board was created by special request to allow space for discussing long standing spondylitis - issues, complications, lessons learned, etc. Spondy Veterans unite!


Elin Aslanyan

Director of Programs
Editor-in-Chief, Spondylitis Plus
Forum Moderator

Spondylitis Association of America
Re: New Board!
ElinAslanyan #280710 07/06/18 03:22 AM
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Hi. I have had AS for 46 years. I am over 60+ years old. The last couple of years I have noticed a huge difference with age related issues that comes with getting older. I was wondering if anyone else is experiencing something similar with weakness, more fatigued then usual? It has really slowed me down and more frustrating because once again, I cannot do the things I use to do. I would love to talk to others who have had AS for many years and see how you are handling this and other issues like pulmonary and heart issues. Thank you.


Wife and mother to 1
Dx with AS in 1973
HLA B-27 Positive
Crohn's Disease
Glaucoma
Meds: Indocin, Sulfasalazine, Folic Acid, Metoprolol, Methotextrate, Lorazepam, Flexeril, Timolol Eye Gel & Pain meds
Re: New Board!
ElinAslanyan #280716 07/07/18 07:53 PM
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I have lived with my A.S. for around 60 years and agree that aging adds to our overall health issues. The other obvious factor is the damage done from our A.S. itself. I note that you do not mention being on a TNF alpha blocker or other biologics. Are you a TNF alpha blocker failure or did you decide not to start on a biologic? I ask because biologics can be very effective in reducing inflammation and secondary fatigue issues. I am experiencing more peripheral joint issues including my hips and shoulders which does interfere with my ability to sleep. I still remain reasonably active at 74 years of age.

Re: New Board!
ElinAslanyan #281183 08/27/18 09:10 PM
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I have lived with AS since 1970 and wasn’t diagnosed until 1995. I’ve been on biological since, but I’m getting stiffer and losing movement to my left side. I’m now 66 years old and dread the nights but hoping something will come to my rescue. I’m hoping Simponi works, but so far no luck. I wish I would have been diagnosed when It all started, but that’s come and gone now.


VickyMcK
Re: New Board!
ElinAslanyan #281820 10/18/18 11:26 AM
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I too am over 60 and have had AS most of my life. It is getting harder. I have been on Enbrel for many years. I do not think it helps at all with pain. My hope is it helps with slowing the calcification of my spine so I continue. I cannot take Non Steroidal Anti Inflamatories due to effects on my liver. So for over year I take low dose Tramadol in order to move. I too am sad how it has slowed me down but I keep on going. Too many things I hope to do before I can't anymore. Grandchildren fun esp. Best wishes to all.

Re: New Board!
ElinAslanyan #284027 02/08/20 03:49 PM
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I realize this board has been around awhile. I am new to the site, but not to AS. I am married to a man, 75 yr. old, who was diagnosed in his late 20's. We married 25 years ago and his disease was fairly stable. He has been a champion of being active and putting AS on his back burner. However, for the past 3-4 years he has suffered nerve pain in lower extremities along with neuropathy in his feet. Recent MRI showed Arachnoiditis, which explains the severe, unrelenting pain. He has a pain doctor, physical therapy, neurologist, primary care and has an upcoming appointment with neurosurgeon to see if anyone can help with the pain. Anyone out there have this symptom of long standing AS? Pain management has been minimal even with gabapentin, tramadol, nortriptyline for help with sleep. He sleeps every once in awhile at night, but mainly gets little sleep. Quality of life sucks.

Re: New Board!
wife #284030 02/09/20 12:06 PM
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I've been living with AS since 1982. It became sever @ 2001. I have recently had Radiofrequecy Nerve Ablation done on both sides of L3,4 & 5. This has given me a massive relief pain wise. @ a 60% reduction in pain. It has been so good that I have an appointment with the Pain Clinic next week to discuss having other parts of my spine treated. I'm currently able to get 5-6 hours of sleep. Before I was having to get up every hour or two to move.


AS/PsA DX in 1988

Retired on disability
in 2005 at age 44
Re: New Board!
wife #284498 11/08/20 04:46 PM
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I am replying to my own post. Now that the Arachnoiditis has been diagnosed for some time, we are seeing it's affects. Neurosurgeon said sorry, nothing can be done for this disorder. Pain management. So we have continued with pain management. Now on Gabapentin, Tramadol, Baclofen (for muscle spasms in legs and feet) and a small dose of Percocet. Stool softeners and laxatives are a daily regimen. Now incontinent of bowel and bladder. On the good side, he is able to sleep 5 hours sometimes 7 hours a night. Not sure where we are going to be next year. I don't know how long I can stay as a caregiver, especially if he becomes non-mobile. He is using a rolling walker, has aids on toilet and bed. Has had 3 falls in the past 6 mo. but I feel the walker is helping to stop the falls. He has received some home health visits for the past 6 weeks, but that has run out. Not a pretty picture. Learning to live with the unknown.

Re: New Board!
Ken Delano #284509 11/25/20 10:25 PM
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Hi Ken,

Hope you are having a good day. If you don't mind my asking, still happy with nerve ablation procedures? Thanks, Rich


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.
Re: New Board!
wife #284510 11/25/20 10:41 PM
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Hi 'wife',

I'm sorry to read of the struggles. I feel like there are several of us (in our 50s) that are active now, but may have a rude awakening in 20 years. So, I a deeply appreciate your sharing your experiences, even though I can't imagine how difficult it is for you both.

I'm familiar with EQS as a 'rare complication' of long term AS. Did the docs say that the Arachnoiditis was related to AS or any of the meds?

Kindest, Rich


AS, U C, Iritis, migraines. HLA-B27neg. Yoga (instructor) & spin. No meds at this time. Dx 1989. SAA member/donor since 1993. All my posts are personal opinion/feelings and do not represent the SAA. Help find a cure & support others by donating to the SAA.

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