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General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: Sigh...probably moving on to Cosentyx by Banana @ Yesterday at 03:54 PM

There is a super folic acid, a different process which works better. Levorcoran (sp?) Also, I injected it--much less side effects than pills. Keep your head up, you will find the right combination...and I am very sorry you are suffering. I know e
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: All things considered, what is my best option? by Banana @ Yesterday at 03:52 PM

The odds for cancer are very low, in fact the odds for getting cancer are higher by not treating it. The first cancer numbers were from people who had no treatment for many years. Now that people are getting treated early, the cancer rate has droppe
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts All things considered, what is my best option? by aem310 @ Yesterday at 01:27 PM

27 years old, diagnosed with ankylosing spondylitis at 17, after 10 years of daily NSAID use (naproxen, Celebrex, and currently on diclofenac), my stomach has taken too much punishment and its clear that I can't continue taking NSAIDs unless I want a
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: What is a good result by Winston @ Yesterday at 01:21 PM

The biologic drugs affect different people differently. Some people do experience near-total pain relief. Others have to combine the biologic with other drugs, such as methotrexate (which might help your feet and knees, btw) or NSAIDs to gain relief.
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Worth a try by sdot @ Yesterday at 08:58 AM

I was on this website a few weeks ago and saw this back brace thing dirt cheap. It's like a brace for posture, similar to what I used when i was younger and used to weight life. It just came today, and it is great for keeping you reminded to keep yo
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: am i having a nervous breakdown? by Shippingnews @ 03/28/17 08:16 PM

@Cake: I took gabapentin, then moved on to Lyrica(currently taking 150 mg(night) and 50mg(morning),from last 2-3 months or more, in between also took cymbalta(from which I had side effects,delusional, so had to discontinue), I also use Lidocaine patc
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts What is a good result by GeorgeUPS @ 03/28/17 07:36 PM

Went to Dr. today. Took a bit of a gut punch. I am on humira for about 2 months(I know it could take up to 6 months to work) Have a little relief, but my biggest problem areas are my foot, both knees, and lower back When this all started, I said
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: am i having a nervous breakdown? by Cake @ 03/28/17 06:47 PM

Are you on a pain medication? Doesn't look like I see one in your signature. I will share that pain has been a steady component of my disease from the very beginning... almost a constant, so not really a reflection of the progression. It was as bad
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: New Hip soon......... by Ken Delano @ 03/28/17 05:53 PM

During the healing it will of course. After that no. Fact it should if anything help.
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: New Hip soon......... by cindyd @ 03/28/17 03:55 PM

Ken, will the new hip, cause any problems with driving your motorcycle? Guess I don't know any one who has a new hip, and drives a cycle. Have thought about restoring my Honda 50...? My first cycle. Haven't ridden a cycle in a few years, but sti
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: am i having a nervous breakdown? by Shippingnews @ 03/28/17 02:26 PM

yes Dr. Lianne Gensler, UCSF. Nothing works on me, the only time the medications worked on me was Sep-Nov 2015,right after I was diagnosed with AS, when I took NSAIDs for first time after years of misdiagnosis. And then they stopped working. I also
Young Adults - The 20-Something Club
Jump to new posts Re: New on Humira by Ericsmom @ 03/28/17 11:54 AM

Hi- I don't blame you for being nervous. It is a lot to take in! I am the Mom of a 21 year old who has been first on Enbrel and now on Humira for about 10 years. He has been very lucky that Humira continues to work well for him and as a result he is
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: Sigh...probably moving on to Cosentyx by Beth @ 03/28/17 11:47 AM

Thanks Anna, it is very depressing to have them just quit, or like you said, turn to water after they work for a while. Once I know that my rheumy is for sure going to switch me over to Cosentyx, I'll ask her about doing the prednisone taper when I s
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: Sigh...probably moving on to Cosentyx by Banana @ 03/28/17 11:11 AM

I had a similar problem and went to HSS, top hospital for rheumatology (well top 1 or 2 or 3, depending on the year). After I failed a couple here is what we did. Take 5 up to 20 mg of prednesone when you start new drug. (reduces inflammation and g
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Sigh...probably moving on to Cosentyx by Beth @ 03/28/17 10:38 AM

Well, I seem to just be one of those people that no matter what you do, your body fights off every stinking drug that helps. I'm so frustrated...Stelara worked well for about a year and a half, then my body fought it off. We added MTX, but that did n
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: am i having a nervous breakdown? by Sean O @ 03/28/17 09:38 AM

Shipping, I hope you are able to find help. I would stick with it. They will not find a solution at the first visit and it may take several. You said you had an appointment with doctor Gensler. She's a rheumatologist right? Try to get your family doc
Young Adults - The 20-Something Club
Jump to new posts New on Humira by sannhe12 @ 03/28/17 07:29 AM

Hi everyone - this is my first post and just looking for some support. I started Humira yesterday and am feeling a little nervous about it. Have people had good experiences? I'm 25 and just moved to a new city to start a new job, so all of it is just
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: New Hip soon......... by Ken Delano @ 03/28/17 03:32 AM

I've been able to get an appointment in mid May to see Ortho (instead of Sept). So perhaps we will be able to move this to early August. As long as I can drive to an event late Sept/early Oct I'll be happy.
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: When you are severely deformed.... by Ken Delano @ 03/28/17 03:29 AM

I try and find humor becca or some sort of positive.Such as "well at least it's not as bad as......". Works for me for the most part. For me allot of it is mental. If I keep thinking negative thoughts it will keep me down but if I think pos
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: When you are severely deformed.... by becca @ 03/27/17 08:44 PM

I know. I talked with him online briefly once. It was really sad when I saw he had passed. A big loss in our community. He is missed. Thank you for your encouragement.
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: When you are severely deformed.... by Banana @ 03/27/17 07:31 PM

Michael Smith, who died a couple months ago, is the perfect person to speak to you. He has a website, which I hope is still active. He used comedy and education to help him cope. Spondyville is his "village", where I hope you can visit.
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: New Hip soon......... by becca @ 03/27/17 02:21 PM

Its been 6 years since I had my hips replaced and all has gone very well. The first few weeks are rough, but so worth it. Best of luck!
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: When you are severely deformed.... by becca @ 03/27/17 02:19 PM

Also, I don't have access to a computer during my free time, so this site isn't exactly easy to use. I started a group on kik, ASwarriors. If anyone is interested in chatting there also.
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts When you are severely deformed.... by becca @ 03/27/17 02:16 PM

So AS left me with severe deformities..mostly spine and pelvis. I will always be this way, even I eventually look into surgery, I still won't be "normal." I have been this way for over ten years now. So my question for those of you who also
General Message Board for Ankylosing Spondylitis and Related Diseases
Jump to new posts Re: AS with Kung fu WUT? by Ken Delano @ 03/27/17 02:14 PM

I suggest talking with your Dr(s) first. Like Ginny pointed out damage could be done. Bone density can be an issue for Spondy's. I had to stop doing certain things in my late 30's/early 40's due to Osteoporosis.
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