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Men Only Message Board
01/19/18 09:01 AM
I don’t have this kind of chest pain, but I know someone who does and he recently just made the connection that the pain occurs when he’s dehydrated, like after a lot of activity on a hot day or on days he wakes up with a hangover. I don’t know if drinking more water will w...
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4,420 Views · 10 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/18 02:52 AM
I have rampant progressing AS and terrible pain and stiffness.... and my inflammatory markers on the blood tests are always normal. It is a well known AS phenomenon, so unfortunately those guidelines are definitely not up to date. They caught the AS on some of your imaging, ev...
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441 Views · 9 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/18 01:55 AM
This was a new one for me. Little finger on the left hand I woke up on morning and it was stuck in the locked position. I was able to open it and it did recur each night. Uncomfortable because painful over 2 months. During that time, I tried hand exercises, heat and Aspercreme ...
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15 Views · 0 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/18 12:33 AM
I don't like doing this, but our healthcare "system" in the United States is completely dysfunctional and incentivizes inefficient behavior. I use Humira as a weapon to slice through my massive deductible. I pay for the medicine out of pocket with my credit card and t...
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553 Views · 24 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/19/18 12:25 AM
For me, Humira did not kick in at once. The improvement was very gradual and it took 3-4 months to get full effect. There are some people who see immediate improvement after just one or two shots, but I don't think that's as common. So don't get discouraged if it takes a while to...
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54 Views · 2 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/18/18 11:44 PM
Thanks for the responses. The X-rays my Rheumatologist ordered showed almost nothing out of the ordinary and my SI joints looked normal. Funnily enough it was the x-rays of my feet that showed the most signs of joint inflammation even though my foot pain is sporadic and very mild...
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340 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/18/18 07:00 PM
I am hopeful that this will be a wonderful treatment for you. Remicade took 6 weeks to kick in. I use 8 hour Tylenol to help with sleeping....
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54 Views · 2 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/18/18 06:12 PM
First of all, the point of getting treatment is to prevent fusion. Rhuematologists are experts with AS so stick with the diagnostic business with the expert. There often mild changes in the SI joints which can be hard to see if not an expert in AS. I attended a student doctor ...
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340 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/18/18 03:56 PM
For the doctor who is skeptical of the rheumatologist's diagnosis - is his skepticism limited to a diagnosis of AS as opposed to another form of spondyloarthritis, or does he not believe you have any form of spondyloarthritis at all? Also, what is his definition of fusion? The ...
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340 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/18/18 03:17 PM
Hi, So finally I was approved and I get my first shot today. I also started Gabapentin last week, 100 MG before bed. The Gabapentin has not helped with sleep yet, so hoping that the combination of all medications will help with the pain and the sleeplessness. So as of today my...
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54 Views · 2 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/18/18 04:11 AM
Thanks for the replies. This forum has been very helpful in educating myself about AS. Originally Posted by subduralFrom what I've read, when you flare, that is the inflammation attacking your joint, resulting in your overall unwell, sick feeling due to your body in constant tu...
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340 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/18 10:16 PM
Thanks for keeping us updated. I'll be interested to hear what the doctors at the research hospital have to say about your MRI. It's so frustrating to know something is wrong and not be able to get complete answers....
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441 Views · 9 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/18 04:50 PM
My pain is mostly between my left shoulder and spine and is sometimes sensitive to touch. My physical therapist eventually gave up as we couldn't find a mechanical reason for my pain and the exercises weren't helping. Perhaps I should try a different PT....
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401 Views · 9 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/18 03:25 PM
So another update since it's been a while. I did end up getting an MRI of my whole spine as far as AS goes it looks good (I don't know why there are differences between each X-ray and even on MRI. No doctor has said that I don't have AS since diagnosis in September but so far eve...
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441 Views · 9 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/18 02:56 PM
My pain started out in my left shoulder. I really didn't have much lower back pain until things began to worsen after menopause....
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401 Views · 9 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/18 03:22 AM
Originally Posted by WinstonMy Enbrel has to be re-authorized every year. It's not by calendar year though. It's one year from the date of the last authorization. Same for me with Humira....
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104 Views · 4 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/18 02:32 AM
Ridiculous for anyone with chronic disease. IF we are still alive, short of some genetic therapy to permanently cure our disease, we are going to continue to need biologics. I heard that if you drop off Remicade the inflammation comes right back....
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104 Views · 4 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/17/18 02:30 AM
^^ that is for sure Winston I agree. In most cases it often takes an xray. My son got denied an MRI for a bad ankle sprain because he went to a university health center and they didn't know the right buttons to press despite the ER doc ordering an xray. Fortunately it wasn't a...
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245 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/16/18 10:05 PM
My Enbrel has to be re-authorized every year. It's not by calendar year though. It's one year from the date of the last authorization. My pharmacy tends to warn me a couple of months before my year is up. They say they'll send a re-authorization request to my doctor automatically...
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104 Views · 4 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/16/18 10:04 PM
When I first started on Remicade there were a few start up hiccups. It does cost a fortune - about $10,000 a year, so most insurances do have hernias when they see the initial bills, so they press on the doctors hard to justify it. However, that only happened a couple of times ...
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104 Views · 4 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/16/18 09:50 PM
I was scheduled for a Remicade infusion tomorrow. This morning the infusion clinic called and said they had to cancel it because my pre-authorization wasn't in place. They claimed this must be done every year (though it has been less than a year since it was first approved). App...
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104 Views · 4 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/16/18 08:16 PM
I've been injecting mtx for 13 years. I get way less stomach upset than the pills, but I still get side effects from it. It provides so much pain relief for me though, that I've had to learn to live with the side effects (or take other meds to decrease them). The needle is very ...
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138 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/16/18 07:05 PM
I started biologics at 16 and started doing the injections by myself within a couple months. I started with Enbrel. What I've found over the years is that the syringes are less painful than the pen, but the pen gets it over with more quickly. I have been on pretty much all the bi...
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138 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/16/18 04:21 PM
ThreeG, I do not take Methotrexate, But I read your comment on being afraid to take Biologics. Don't be, I am a fainter, I have a very bad needle phobia. My husband injects Enbrel for me, and it stings, I hate it, but I get through it, and I have gotten less anxious about gettin...
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138 Views · 6 Comments
General Message Board for Ankylosing Spondylitis and Related Diseases
01/16/18 02:33 PM
Originally Posted by Drenha I've been trying to figure out the cause of my upper back pain and I'm beginning to wonder if it could be related to AS after all. I've done a few rounds of physical therapy that didn't really help - it sometimes seemed to exacerbate the pain. It very...
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401 Views · 9 Comments
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