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General Message Board for Ankylosing Spondylitis and Related Diseases
11/16/18 12:39 AM
I am beginning to look at this as I have a couple years before my private employer sponsored plan ends. It sounds like the best way is to find a knowledgeable person who is paid to find the best plan?
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/15/18 04:29 PM
Started taking savella on the off chance I have fibro, since it's the only drug for that I haven't tried yet. I'm not sure how long it's supposed to take to work, but I've been taking it for a week and so far there's been no significant difference. I really hope I don't actually need this drug, it's obnoxiously expensive.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/15/18 03:56 PM
IBD associated Arthritis is also called Enteropathic Arthritis (EnA). It is under the same spondyloarthritis umbrella as AS.
https://www.spondylitis.org/Types-of-Spondylitis

If your rheumy is using the Modified New York Criteria to diagnose your condition, she probably will not give you an AS diagnosis because you don't have enough damage to your SI joints. Many rheumatologists are beginning to diagnose AS earlier and not wait for the SI damage, but there are still some sticklers around. Hopefully the MRI will help.

The good news is that you really don't need an AS diagnosis, because the treatments for AS and EnA are similar and both include the use of biologics. My attitude has always been "I don't care what you call it, as long as you give me a treatment that works."
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/14/18 11:07 PM
Good Evening,

In the upcoming months we are going to be asking a monthly discussion question to help gather insight and information to present back to our members. We would love your feedback.

Question: Do you practice self-care? What do you do to treat yourself?
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/14/18 01:10 AM
Sending you positive thoughts. Hang in there.
Mike
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/14/18 01:03 AM
Couple of thoughts. I have read and been told that Cortisone shots are not advisable for the Achilles. I had one in my Achilles the day before my second hip surgery and injured my Achilles permanently six months later. But I thought the shot was great until then. And I have had probably a dozen cortisone shots and think they are great in advisable joints/bones (shoulders especially, hands). Did nothing for my hip, which is not unusual.


Use your judgment. But my real caution is that if you do have Achilles surgery be EXTREMELY cautious for a long time after. I made one mistake two months after my surgery and completely retore it.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/13/18 07:52 PM
Welcome to the Forum and thank you for sharing your post. I'm biased, because I worked on this... but I hope the white board animated video is of help. we also have other resources on this page: https://www.spondylitis.org/For-The-Newly-Diagnosed

If you would like to meet others in-person, there may be a local education/support group near you.

This is a good article on blood work and AS: https://www.spondylitis.org/Spondyl...ticles/blood-work-ankylosing-spondylitis

If you want to bring information to that nurse or to others, SAA has several for free. There is a new brochure made for non-rheum medical professionals.

Finally, SAA sends a monthly free email with updates about spondylitis. it's called the eSUN.

Hope that all this is useful. Looking forward to hearing how things go for you.

Kind regards,
Rich
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/13/18 05:11 PM
My intention was to give updates on my progress periodically in case it might be helpful to someone else down the road, but I failed to keep it up. frown I'm coming up on the 3 month mark, and things are going really well with the knee.

My extension is still not quite 0*, but it's pretty close, and I'm pretty sure it was not 0* before the surgery, so this may be as good as it gets. It's close enough that I have no difficulty walking. And my flexion is great. My PT was very impressed when she measured me on the last day. I don't remember the measurement, but it's good enough that I can stand up from a low seat with no problem.

I recovered so much more quickly from this knee than the first one. Not sure why, but I'm not complaining. wink

Because of the skin issues and later a stitch that woudn't dissolve and had to be dug out, I have not been able to return to water aerobics yet, which I am really missing. The last little scab finally came off Sunday, and I see the surgeon tomorrow, so hopefully he will give me the OK to get back in the pool.

Jeffn, I sent you a PM.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/13/18 04:53 PM
To answer the original question, I've had two partial knee replacements. I've also had injections in my knees (before the surgeries), my wrist and my thumb. The injections were various combinations of cortisone, an anesthetic in the -caine series (don't remember specifically), and SynVisc.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/12/18 09:42 PM
Oh, no pdiddy and Tab56, luckily when it is medically induced MS it goes away slowly once you discontinue the medication. It took about 6-8 months for all the symptoms to finally go away. I don't bring this up often because I don't want to scare people - because given the opportunity I would still stay on the Humira, the anti-tnfs really are the best drugs for what we have. As a matter of fact, my son takes Humira and he does perfectly fine. My case, is a one is MILLIONS thing to happen, it is not standard at all.

As for me and the Stellara, the first shot worked after about 3-4 weeks and progressively gotten better. Now it wears off week 9-10, but as soon as I take the shot, I'm back to my "usual" better by day 2 or 3. smile
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/11/18 12:00 PM

Is this a common treatment with decent success rate for those with AS?

I must say I've never heard of it but Id be interested to know how well it deals with the pain caused by spondylosis. Would be interested to know if any other members have had this and what their experiences are.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/10/18 10:16 PM
Thanks for the correction :-).
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/09/18 04:29 PM
Never had those issues, in fact, the day I injected I had the best nights sleep. I no longer inject but I did for 5 years. Which folic acid are you taking? I had to take a super one (levecoran, sp?) which I did not take day of injection. I heard people had side effects as you describe from that????

Here were the instructions I was given for injecting MTX. Day of, drink a lot of water. Inject around 4/5 in the evening and eat a good carb dinner. Drink a lot of water next day too.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/08/18 12:29 PM
uff you all made me a bit unsettled with this (to the point I had nightmares with Freddie Kruger trying to get to me - my wife woke me up to break the spell).

so am I right thinking the normal echocardiography without myocardial contrast would not be able to detect myocardial inflammation whatsoever?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2499839/
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/08/18 12:28 AM
I was at a doctors a while back and saw this poster at the front desk about a guy that was out of work because he was diagnosed with cancer and couldn't work. He was asking for go fund me donations to help him get by.

I guess that is where we are now? Our system is so broken that we will will spend billions helping everyone else in the world, but when we need help we have to beg on the internet. Poor guy gets $500 in donations, but a celebrity or political sham can easily take in a million bucks without a problem.

When you get sick no one will hesitate to make you homeless. When its gets worse and you kill yourself everyone will pretend you matter.

What is wrong with this world sheesh.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/06/18 12:51 AM
For many years, I did get migraines in the 2-3 days after taking MTX. Fortunately, I could take medications to knock them out. I have taken some medications that caused migraines that were so severe though, that none of my meds worked, so I can understand how that could happen. Hopefully you will find something that works.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/05/18 08:59 PM
It takes a while for MTX to do anything, esp with that low dose. Sad they started you on that because it works more as a booster than first line med for us.

Now the prednisone. Are you on a low dose? Tapering down? Because if you start high and taper fast (or forget to take) your symtoms could be much wose.

Finally, if you think you are having cardiac issues...see your doctor.

Anna
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/05/18 06:04 PM
Originally Posted by Smrtrs
The eye doctor didn’t use the word uveitis but did write in my papers iritis.


Iritis is a form of uveitis. There are three forms of uveitis, depending on which part of the eye is inflammed: anterior, intermediate, and posterior. Anterior uveitis affects the front of the eye including the iris and so is sometimes called iritis (meaning inflammation of the iris).

Anterior uveitis (iritis) is the form most commonly associated with AS, and to a lesser extent RA and lupus. That's why your eye doctor kept asking about autoimmune conditions.

If the steroids are not controlling your iritis, you will need to move on to other therapies such as an NSAID, Methotrexate, or a biologic. Most eye doctors do not prescribe these meds because of the monitoring involved, so they generally refer you to a rheumatologist.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/04/18 11:08 PM
Originally Posted by butters
If you have a prostate infection, you might be interested in reading about the Catterall–King hypothesis.

"In 1959, Catterall and King postulated a common sexually acquired infectious etiology for all spondyloarthritis types, whose primary focus in men is the prostate" - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5895656/

Thank you very much, very helpful link
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/04/18 02:45 PM
If you explain your back troubles to your doctor (I'm assuming a family doctor or internist?) the way you've explained them here, it should set off alarm bells in the doctor, and it should prompt the doctor to do some bloodwork and ask about your family history. The bloodwork would typically include tests to check for inflammation in your blood (ESR (aka sedimentation rate) and CRP), an autoimmune panel to rule out things such as rheumatoid arthritis, a complete blood count (CBC) to check your white blood cell count in particular, and the HLA-B27 genetic test. HLA-B27 is strongly correlated with AS, especially in white people. Do you have family history of any type of inflammatory arthritis or of psoriasis or IBD (irritable bowel disease)?

My AS crept up on me in precisely the manner you have described. I had occasional morning stiffness and lower back/buttock pain that I blamed on a bad mattress or overdoing it on the tennis court for about a year and a half before my first flare made me realize there was something more serious going on.

Good luck.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/02/18 05:09 AM
My brother who has AS is currently living in Brazil and he has been given Ozone Therapy in his knees and back and he swears it works. HOWEVER, it only helps with the symptom of pain and doesn't stop the progression of the disease. His wife, who also has AS, is given low doses of Neltroxone. Again, helps with symptom of pain but doesn't stop the progression and certainly hasn't stopped her bouts of Iritis. Our Rheumatologist in in California has a fit when she hears this is the treatment they are given in Brazil. It is cheap treatment/medication in Brazil.
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General Message Board for Ankylosing Spondylitis and Related Diseases
11/01/18 05:33 PM
Have you tried Voltaren gel, Aspercreme or Lidocaine patch or combinations? Both you and your Rheum could be correct.

The fact that you site "tingling" is interesting. The tingling is typically associated with nerve inflammation perhaps caused by nerve involvement. In that case and to "see" structural damage has he recommended any scans? CT/MRI? or recommended nerve conduction study for that area of your body? I'm not sure how relevant, but it's worth a question in my mind.
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/30/18 07:08 PM
Hi MichaelSean,

I’m curious about your tinnitus improvement, can you give me a bit more info?

Thanks!

ORDucksSB
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/30/18 02:37 PM
Thanks. The hot //cold helps to start moving in the morning. While new problems are in shoulder area the pain varies; upper arm which i think are the enthesis points below shoulder on arm and above elbow. At times bicep/tricep muscles are cramping? Or almost feel like muscle pain is dry #10 on 1-10 pain scale level. Is this peripheral AS? Having never had arm/shoulder involvement, its vert scarey. I barely sleep 2 hours without waking from pain.NASAIDS only leave me with gut issue -( am taking with food). I have new HMO rhuemy appt in Nov which am not confident of since am in a rural area. Hoping here to understand Perpheral AS since my pain has never included arm /shoulder involvement and limitations :-(. Thank you for response.
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Alternative Treatment / Diet Discussion
10/30/18 02:28 AM
Shoulder we still assume inflammation is present even though the common blood markers for inflammation are wnl? This has happened a couple of times with me and in the past couple years. Becomes frustrating when seeing a new MD.
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