Comments on: Ankylosing Spondylitis and Rheumatoid Arthritis

By: Dianne

Dianne — Wed, 04 Apr 2012 17:57:11 +0000

interesting, I have been diagnosed with ankylosing spondylitis, rheumatoid arthritis, fibromyalgia, dactylitis, psoriatic arthritis, osteoarthritis, chronic fatique, dddegeneration, and periphial arthritis. I am affected from head to toe. I left work in 2002, and still working on getting disability. I am trying to figure out which one is most painful. I get to relax a bit with medicines but I never lose the pain or discomfort.

By: Kelly Young

Kelly Young — Wed, 30 Nov 2011 00:45:20 +0000

Gay, we have some good friends in our community who have AS, so I hope you know you’re welcome no matter what your diagnosis is.

By: GayNell Williamson

GayNell Williamson — Tue, 29 Nov 2011 23:20:28 +0000

Thanks for the information on AS. My rheumy is wavering between an RA/AS diagnoses, and right now has me on Simponi and Sulfasalazine, as they are supposed to be effective for both. I would love to hear from other women who have this disease. I’ve checked traditional support groups, and those for AS tend to be full of men.
Your site is wonderful, it’s really hard to make your friends and family to understand that while I may look the same/ albeit more tired and older, my body may never be the same as it was. God bless, Gay Nell

By: Kelly Young

Kelly Young — Tue, 09 Aug 2011 00:41:35 +0000

Thanks for posting, Heidi. Go MICHAEL! He might want to watch the video about Grant on the bulletin board – click here.

By: Heidi Erickson

Heidi Erickson — Mon, 08 Aug 2011 19:47:21 +0000

My son Michael is 14 and has both juvenile rheumatoid arthritis and ankylosing spondylitis. He has gone through hell with both of these. Right now his JRA is fairly under control but his AS is out of control. There is not a day that goes by that he is not suffering. He is active in sports and plays despite the severe pain. As a parent I am at a loss on how to help him. It is my job to protect him but I can’t protect him from the pain and suffering. Michael is my inspiration. Even though he suffers daily, he does not let it slow him down…

By: Kelly Young

Kelly Young — Tue, 26 Apr 2011 21:20:46 +0000

Deven, I think your hunch is right about xrays having to catch up since they only show damage that’s very obvious that has already occured. Since damage can occur quickly or gradually, I wonder whether there’s a clear answer that would apply to all of us. Probably not.

And please be careful w/ chiropractic w/ having some type of degenerative disease in the spine. There can be instability which is dangerous in certain joints since it can lead to inpingement of spinal cord. Please see last paragraph here. This might not affect you, but it’s good to know what the risks are.

By: Deven

Deven — Tue, 26 Apr 2011 20:52:06 +0000

I’ve been having RA symptoms for a year and a half now. I do have the HLA-B27 gene, but show no evidence in my low back/hip x-ray. I have a slightly elevated RA factor, but the other bloodwork is normal. A few weeks ago, my ‘normal’ low back pain became severe. It moved to my butt and the leg pain got much worse (as did the feet, etc, numbness, etc.). My MRI showed no herniations, just some degeneration. I’ve already had disc replacement in C5/6 and so I know my spine isn’t ‘healthy’. I also have scoliosis that somehow became painful after pregnancy.
My dr can’t diagnosis me with RA (yet?), but is treating me with Plaquenil to sort of see what happens. (i’ve had to stop taking it due to some strange vision issues– i’m terrified of this side effect- yes i do plan to ask for a med change) (thankfully, i’m not in a hurry due to the steroids and narcotics prescribed for my low back- i’m functioning!)
I’m wondering for those with AS (or RA- since we know it does affect the spine)– how long did the x-rays catch up with the pain?
In the meantime, I’m trying out a chiropractor to try to get ‘straightened up’ and help with the hip, low back, mid back, and neck pain.

By: Terri

Terri — Wed, 06 Apr 2011 03:59:16 +0000

@Sharon Brown, I have had Ankylosing Spondylitis for at least ten years now. At the onset it was horrific pain and terribly disabling, and then after 14 mos of disability I went into remission (i.e. could finally do my floor exercises again — stretches and back-strengthening daily exercises not unlike physical therapy,) resumed brisk walking and water aerobics, and rebuilt strength. Now, it is 8 years later, and I have been in a flare for the last eight months — and this time the AS is progressing rapidly. One of the things I noticed even a year ago was that my lungs made an involuntary noise while walking aerobically, and that I always wheeze when doing knee-to-chest exercises (daily). For the last 6 months I have felt that my chest is constricted. The area in front and behind my lungs, as well as the shoulder blades, is affected. When my esophagus, throat and uvula became involved with the too-tight, constricted feelings, I knew I had to seek another rheumatologist (mine moved out of state years ago.) I have also been belching ridiculously for the last 15 months — it’s just air but can go on indefinitely; this is something I’ve never done in my entire life!

My GP tested me for asthma and I tested positive, but have none in my family, and the albuterol didn’t make a huge change. Next I went to a rheumatologist who treated me like a whining 40-something female experiencing the change of life, and said I did not have AS, and to stop worrying myself by looking on the internet. (!!) The first rheumatologist who originally introduced me to the very TERM Ankylosing Spondylitis was wonderfully thorough, knowledgable, and supportive. I was chagrined to see him move.

All of my joints are affected by the AS at this point, (low back, hips, sacral joints, shoulder blade area, neck, shoulders, elbows, wrists, hands, feet, knees, pinky toes, as well as my eyes aching all the time,) and my fatigue is so severe I am only able to work and sleep, nothing more. I nap at lunch time and immediately after work. I sought treatment from a Cleveland Clinic rheumatologist several months ago, who put me on Remicaid. I noticed by the end of the first two weeks that the pressure on my lungs and chest, as well as the esophagus pressure and belching, was gradually subsiding! I encourage you to seek further treatment from a rheumatologist familiar with A.S.!! Had I stopped after Dr. Cold, I would believe that nothing was medically wrong; I was simply a total weenie who didn’t have enough energy to live her life — and my disease would be progressing without restraint. It is hard not to feel bitter about Dr. Cold. A rheumatologist holds so much power in his hands in the way he treats those with invisible, but disabling, diseases!!!!!

By: Kelly Young

Kelly Young — Sat, 05 Feb 2011 20:20:26 +0000

Good luck with the Orencia. I hope you tell your doctor if your side effects don’t go away.
No, I have not heard that estrogen helps pain. It has not helped me.

By: Girija Ramesh

Girija Ramesh — Sat, 05 Feb 2011 03:04:02 +0000

Hi everone,
I am rheumatoid/AS/lupus not sure according to my Rumi. I am 51 east indian living west coast. I started with back problems 10 years ago with + Rh factor, i was not diagnosed as rheumatoid until a year ago. I discs started melting and unable walk was bed ridden. Finally I got 3 level lumber fusion 4 years ago. I am better with back pain now.
I started joint swelling and pain 1 1/2 years ago.lungs and stomach issues and intense pain.
hey called it SJÖGREN’S my eyes are dry and has a ocular pressure
I tried Methroxate, short of breath, Ariva-nausea, Remicade –worked well for 3 months–last 2/3rds of hair. Now on Orencia 2 nd loading dose-awafylly tired, fast heartbeat and too tired. Do not know how this is going to go??

Just wanted to say hai for all he chronic sufferers–biologics gives hope, works for while for some people and longer people. I heard through a friend that estrogen works wonders for pain? i haven’t tried.

Madhug