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General Message Board for Ankylosing Spondylitis and Related Diseases
10/18/18 04:21 AM
Has anyone been through the majority of medication options and st ill not have any relief? I'm currently on Cosentyx and am having a hard time. It literally works for 2-3 weeks and I'm back in pain or in a flare. Any suggestions?
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Support Groups Information
10/17/18 04:50 PM
New York City, NY- Thursday, November 1, 2018: https://www.spondylitis.org/Community/Support-Groups/New-York
Morristown, NJ- Saturday, November 3, 2018: https://www.spondylitis.org/Community/Support-Groups/Morristown
Baltimore, MD- Saturday, November 3, 2018: https://www.spondylitis.org/Baltimore-Harford-County-Support-Group
Lansing, MI- Saturday, November 3, 2018: https://www.spondylitis.org/Community/Support-Groups/Lansing
Denver, CO- Monday, November 5, 2018: https://www.spondylitis.org/Community/Support-Groups/Denver
Piedmont Triad, NC-Wednesday, November 7, 2018: https://www.spondylitis.org/Community/Support-Groups/Piedmont-Triad
Clinton, IA- Thursday, November 8, 2018: https://www.spondylitis.org/Community/Support-Groups/Clinton
The Woodlands, TX- Saturday, November 10, 2018: https://www.spondylitis.org/Community/Support-Groups/The-Woodlands
Oakland/SF, CA- Saturday, November 10, 2018: https://www.spondylitis.org/Community/Support-Groups/Oakland
Sioux Falls, SD- Saturday, November 10, 2018: https://www.spondylitis.org/Sioux-Falls-Support-Group
Waterville, ME- Thursday, November 15, 2018: https://www.spondylitis.org/Community/Support-Groups/Waterville
Elmira, NY- Thursday, November 15, 2018: https://www.spondylitis.org/Elmira-Support-Group
San Diego, CA- Saturday, November 17, 2018: https://www.spondylitis.org/Community/Support-Groups/San-Diego
Sacramento, CA- Saturday, November 17, 2018: https://www.spondylitis.org/Community/Support-Groups/Sacramento
St. Paul, MN- Saturday, November 17, 2018: https://www.spondylitis.org/Community/Support-Groups/St-Paul
Bristol, TN- Wednesday, November 28, 2018: https://www.spondylitis.org/Community/Support-Groups/Bristol
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/09/18 09:25 AM
Hi all, had a rheumy appointment yesterday to discuss my humira dosage and regular check up etc. Last week I felt pretty shitty and was expecting to come away with further medicine following my appointment as I was finding in the 2nd week after the injection my symptoms were getting worse.

He said the challenge for him/me, was to establish how much pain is from inflamation and how much is from the mechanical damage that the disease has caused (which i'll always have unless some novel treatment is found). Essentially, his recomendation was to stick with the humira once a week and use NSAIDS in addition (naproxen). I really don't want to take NSAIDSs at all to be honest.

He also gave me a leaflet on methotrexate (which I don't want to be on either) as I think his plan is for me to be on that in the future, since the humira hasn't really cleared up my psorasis or the pain in my thumb, occasional locking elbows and toes on left foot (this is all minor compared to my back). I'm not that bothered about my psorasis and i could live with that if that's all that was wrong with me,.

Anyway, the reason for my post is that he gave me depo-medrone (Methylprednisolone).......40mg/ml....................as a steroid injection. Apart from the peripheral areas of my body, this is the best I have fealt in ages. Not pain free in my back but best I've been in a long time. I know it will be short lived, and there's only so many of these bad boys you can have over a period but boy has it made a difference! Much more than the humira. I'm assuming the peeps in the US use a similar cortisone? Just wondering what your experiences are?

Thanks
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General Message Board for Ankylosing Spondylitis and Related Diseases
10/04/18 08:00 PM
My diagnosis came last year after my AS had progressed to my ankles, hands and wrists. At that time they x-rayed my ankles with my back etc and also did an ultrasound and injection of steroid.

Once I started the biologic in January I started to feel better and my ankles even improved.

At the beginning of September I stopped the biologic as I was scheduled for an unrelated surgery on Sep 14th. Within 7 days I had severe Achilles pain and swelling. Despite going back on biologic last week the pain is crazy. I went in for an ultrasound last Wed and just found out that I have micro tears...one measuring 8mm (not exactly micro) and enthesophytes. They are recommending prolotherapy. I am not to keen on this idea. Wondering if anyone has had these issues and recommended treatment.

Feels like walking is all I have left and I really want to maintain that.

Thx
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List your great doc here!
09/28/18 11:47 AM

I've found 5 on the recommended list that accept my insurance so just wondering if anybody has had any first hand experience with any of them? Thanks!!

Carol T Aitcheson, MD 35 Collier Rd Ste 775 Atlanta, GA 30367 404 350-1122

John A Goldman, MD Medical Quarters #293 5555 Peachtree-Dunwoody Rd Atlanta, GA 30342 404 252-0230 **Pediatric & Adult

Jefrey D Lieberman, MD Dekalb Medical Specialty Ctr 2712 N Decatur Rd Decatur, GA 30033 404 296-4911

Gary E Myerson, MD Northside Hosp Doctors Ctr 980 Johnson Ferry Rd Ste 220 Atlanta, GA 30342 404 255-5956
Northside Hospital

W. Hayes Wilson, MD Kimberley E. Wilson, MD Piedmont Rheum. Consultants Piedmont Arthritis Center 2001 Peachtree Rd NE, Ste 205 Atlanta, GA 30309 404 351 -2551
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General Message Board for Ankylosing Spondylitis and Related Diseases
09/27/18 09:33 AM
Hi all......I've read numerous articles online related to AS, Reumatoid athritus, psoriatic athritus to foods and the gut. Although it's interesting that the medical community generally do not subscribe into the affects foods have on these conditions and the immune system, there appears a great deal of people who've had success in elimiating foods from their diet. Sadly, the internet is full of sales and marketing related links which sometimes make it hard to distinguish the genuine people from the 'solely for profit' types.

I have AS and I'm seronegative HLBA 27 negative. I also have a condition called dermographism which I've had all my life. In effect, it's like urticaria. It'a also called skin writing! There are no cases of AS in my family. I have a cousin with psoriasis and that's it! Since being diagnosed with the condition a year ago or so (at 38), I've always been in denial a little bit by the fact I have two rare conditions that nobody in my family appears to have. I've since wondered if the 2 are linked i.e. is there something in the environment causing me to display these inflamation symptoms. Yes, I might be genetically suspectible to this condition (incidentally i've undertaken dna tests previously) but it's not normal for your own body to attack itself surely!

Anyway, as a result of the above, I decided to pay for a private allergy and intolerance test to be undertaken. Believe it or note I've never really been diagnosed with specific allergies as my Doctor many moons ago told me 'I'm a sensitive individual' and 'likely to be allergic to everything we test you for'. Recent dialogue with an NHS (UK) dermatologist told me 'you need to have a rough idea what you're allergic to', so they can test me. Neither of these were a great help so I thought 'sod that', and decided to pay for a private test instead. Some would frown upon this but that's a discusison for another time, i guess.

So the results of my allergy tests that came back literally this morning are....I'm allergic (IgE) to tomatoes, potatoes, carrot, peach and apple. Obviously they've not tested every substance known to man. I have a number of intolerances (IgG4) to eggs, cow's milk and casein (basically anything dairy) but I'm not allergic to them. It seems I may be allergic to the nightshade family which I now need to think about how the hell I eliminate from my diet. Potatoes and tomatoes....how cruel................I have irish ancestory and my great grandparents moved from Ireland during the potato famine...........the bloody irony!

Unfortunately, what this doesn't tell me is whether I should eliminate starch which to me seems bloody impossible. I had a normal response to all the grains and wheats with my allergy tests.

Anyway, the reason for posting on here is I'm hoping that this is all linked to my AS. Yes I know I'm desperate and my doctor has told me to follow a 'mediteranean diet' but clearly this is bad for me as I'm allergic to tomatoes! I'm a little fed up of the medical professionals here who don't look at the individual and look at a holistic solution rather than a 'take a pain killer for a headache approach', without finding out why and what is causing the headache to start with.

I'll report back in a month or so to let you all know if I feel any improvements but first I need to tell the Mrs and wait for the big sigh from her (she's got Italian bloody, hah!). I've just unpacked the shopping she ordered (home delivery) only to find 2 tubes of tomato puree, tomatos, white potatos, peppers and carrots! Is it normal to be allergic to something as natural and harmless as a 'spud'?! These are of course rhetorical questions which nobody appears to be able to answer with complete certainty.

Incidentally, I'm on humira and been on it for 5 weeks now. It's had a small affect but not turned out to be the miracle drug I was hoping for! Interesting to hear all of your thoughts and experiences. I did find a previous post here to the subject which is :

http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=180504

Sorry for the disjointed post and rant!

Thanks all.
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For Parents and Teens
09/21/18 05:54 PM
New group for parents on Facebook: https://www.facebook.com/groups/227913731224515/
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