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Are there better Forums than this one? #282822 03/27/19 01:14 PM
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Miguelito Offline OP
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Trying not to be negative, but there is little activity, and much of that is people asking about some very obscure and probably unrelated issue.

This site has some utility for people looking for a little pick me up when they are down, but not much beyond that.

Legit question, are there better sites out there?

Thx,

Mike


1981 - Hip/knee problems led to early, correct AS diagnosis (amazingly!).
1990's -Doctor mistakenly diagnosed me with Psoriatic Arthritis. Bad doctor!
2000's - Increasingly problematic "sciatica". Guffaw.
2011 - Diagnosed with end-stage right hip arthritis.
2012 - Right HSR.
2013 - Partially torn Achilles.
2014 - Left HSR.
2016 - Re-diagnosis of AS, Prescribed Humira. Achilles surgery followed by subsequent re-tear.
2018 (Now). Doing pretty good. Humira working, Achilles finally better.
Re: Are there better Forums than this one? [Re: Miguelito] #282823 03/27/19 02:09 PM
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RAHMBA Offline
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Hi Mike,

I hope this is a rallying call to people to participate in the Forums. There is nothing like it. people can participate without divulging their identity. information here is not sold or otherwise monotonized to pharma or other companies. unlike FB and other social, The people on the forums are truly supportive and knowledgeable.

there are over 20,000 people that have current registration on the forums. more than any other place. I find the search bar particularly helpful. there has never been a even rare AS issue that I wasn't able to find past conversations and useful information here.

We probably just need a few people to spread the word about the Forums on social media to get a robust honest, supportive, and helpful Forum.


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: Are there better Forums than this one? [Re: Miguelito] #282832 03/28/19 06:43 AM
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Tacitus Offline
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Hi, Mike:

I'm absolutely certain that there are!

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: Are there better Forums than this one? [Re: Miguelito] #282844 03/30/19 08:14 PM
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Banana Offline
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Many people went to FB, there are many many FB spondy pages.. Though I question the privacy and came back here. Plus, there are more people pushing their agenda rather than facts.


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Are there better Forums than this one? [Re: Miguelito] #282851 03/31/19 10:39 PM
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Zeus Offline
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I got tired of the FB groups and the people who monopolies them. Also the admins that seem to remove people just because they don’t agree with someone’s response.

Re: Are there better Forums than this one? [Re: Miguelito] #282852 04/01/19 03:48 PM
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SouthernMoss Offline
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Mike, I think the answer to your question depends on what you are looking for. If you are looking for information, there is a wealth of information here. The search is a bit awkward in that you can only search 3 years of posts at a time, but once you get used to searching in 3 year chunks, you can find a lot of information here.

If you are looking for social interaction, then it's true that this board moves slowly. That is partly because people are finding answers on the site by searching rather than by participating in discussions. Also, I have noticed that we seem to go through cycles where we have less activity, then things will pick up again. Things are a little slow right now, but they will pick back up.

I am a member of a couple of FB groups for AS, but I don't participate much. They can be nice for emotional support, venting frustrations, etc for those who need a place to do that. But you have to watch for people giving opinions as if they are facts. That seems to happen more often on social media than it does here.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Are there better Forums than this one? [Re: Miguelito] #282853 04/01/19 05:30 PM
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seymour Offline
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I for one have stopped reading and posting here mainly because I don't need the stress and negativity that I sometimes see. I try to give back to the community that's given me so much but I feel like I don't have anything to contribute these days.

It's different for everybody but I know I sometimes need to stay away from AS while I'm feeling good so I can have something like a "normal" life. If I start to read about AS and other people's problems I automatically think it will apply to me and start getting anxious.

I feel better just living my life and staying hopeful.

Re: Are there better Forums than this one? [Re: Miguelito] #282854 04/02/19 12:21 AM
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WhiteCell Offline
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I think that this forum is uniquely valuable. Many of us spent years achieving an accurate diagnosis and for that single reason this forum is so helpful to people, who, for the first time are simply "lost" in a new set of circumstances e.g. new symptoms, new doctors and questions. Lack of information is a forumla for fear and anxiety....This is a strong forum. I've never felt other than supported here.

Last edited by WhiteCell; 04/02/19 02:44 AM.

Diagnosed AS 2001.Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Cardiac Stent to RCA 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Are there better Forums than this one? [Re: Miguelito] #282856 04/02/19 02:05 AM
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SouthernMoss Offline
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Well said, WhiteCell.


Ginny - 58 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis, both currently in remission
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: Are there better Forums than this one? [Re: Miguelito] #282860 04/03/19 11:09 PM
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Mary Beth Offline
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This forum has been invaluable. It's true that Facebook has likely slowed down the conversation here (and at other topic-specific forums). But Facebook doesn't give the wealth of searchable info a forum does, nor the sense that you actually are getting to know people.

As education has increased and more medications have come on the market, things have slowed down a bit too because blessedly, more people are getting help early enough before damage is severe.

As someone else mentioned though I tend not to frequent the forums so much because I need to be more than my disease. I am more or less in medication-induced remission, but I have a lot of damage from before I got treatment, especially in my neck. I went through my stages of hope/ grief/ acceptance, but I still don't like to spend too much time in that head space of "I have this disease." It can be draining. So I pop in occasionally, answer some questions when I can, ask a few on occasion, and then don't stop back in for weeks or months at a time.

It's a great forum with good info and reasonable moderators. We are fortunate to have it.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
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