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Re: Amgen Study -- Drizzit Post 02/18/06
CentralGaGal #272895 12/18/15 09:20 PM
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I did another search in the medical literature and found a paper you might be interested in. Many of the literature cannot be accessed for free, but this one can. More recent, 2011 and a good study design. I would trust these numbers of the numbers that Drizzit quoted since we don't know the origin of those numbers and they are from an older data set.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3009382/

Ankylosing Spondylitis: Patterns of Radiographic Involvement—A Re-examination of Accepted Principles in a Cohort of 769 Patients

Jang JH, Ward MM, Rucker AN, Reveille JD, Davis JC Jr, Weisman MH, Learch TJ.

Radiology. 2011 Jan;258(1):192-8. doi: 10.1148/radiol.10100426. Epub 2010 Oct 22.

Well designed study, but they don't discuss progression and treatment.

Last edited by Sheep1; 12/18/15 09:22 PM.

48 yo female, history of back pain since 1985, fatigue since 2009
-USpA diagnosis in August, 2015. Changed to PsA in 2016
-Erosions in finger joints
-HLA-B27 +
-Other: fibromyalgia dx in 2011 (wrong dx), endometriosis, severe pollen allergies
-Medications: Humira (since Oct, 2015). Weekly Humira start in Sept., 2016. Methotrexate (Dec. 2016). Aleve (as needed only), Lyrica, Tramadol, Baclofen, Vicoden, Tylenol, Xanax. Vitamin D, Vitamin B12, Folic Acid. Allergy Immunotherapy shots since 2009
Re: Amgen Study -- Drizzit Post 02/18/06
Sheep1 #272896 12/18/15 09:25 PM
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I wish I could say getting my records had been that easy. I actually tried several times and was told the patient didn’t own the records and therefore would only be shared by a requesting physician. That was in the mid to late 80s. Unfortunately years have passed and none of those records even exist now (both a myelogram and nuclear bone scan was used to diagnose me).

I had the pleasure of having insurance that required referrals and several “know it all” PCPs that told me without any testing or exams, I didn’t have it because…..people with AS were fused and couldn’t move their back (even one that said people with AS are in wheelchairs – no exceptions) so, no referrals. One even tried to send me to a Shrink because the pain was in my head.

I’ve had the neck and thoracic issues but both I had been told had no bearing on AS. Seems that wasn’t true according to the Spondylitis.Org. I went 4 years with insurance when the bad stuff kicked in and then last year finally got in with a new Rheumy but only saw her once before moving. Although she was frustrated that I had been treated the way I had, she didn’t start a treatment so now, it’s a start over again.

Re: Amgen Study -- Drizzit Post 02/18/06
CentralGaGal #272897 12/19/15 05:18 PM
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Its a common and well known study: http://onlinelibrary.wiley.com/doi/10.1002/art.11325/pdf

In any event definitions have changed since 2012.

These kind of discussions are actually pretty silly. They have. no effect on your symptoms and very little on your treatment.

Last edited by tntlamb; 12/19/15 05:26 PM.
Re: Amgen Study -- Drizzit Post 02/18/06
CentralGaGal #272898 12/19/15 05:34 PM
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Yes, not even real information because so many people with mild AS, are just living life undiagnosed so it doesn't seem this would ever be a real number.

I would be considered mild with over 20 years of indiagnosed symptoms and then when it turned severe I guess I would move to severe?

Anna


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: Amgen Study -- Drizzit Post 02/18/06
Sheep1 #272901 12/19/15 06:13 PM
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Good reading Sheep1. I'm assuming when they term "complete fusion" they are referring to the total spine and not a single process. The duration of 30-40 years with 27.9% and 42.6% for those over 40+ years makes me curious as what the results would be at 5-10 or 10-20. My assumption in these results would be those untreated and naturally, worse case scenario.

Re: Amgen Study -- Drizzit Post 02/18/06
tntlamb #272902 12/19/15 06:20 PM
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TNTLAMB

I'm not sure this was the report I was looking for but clearly good information by the company.

Quote:
They have. no effect on your symptoms and very little on your treatment.

I must differ on the above comment as I see over and over others that haven't proven any fusion be denied treatment. I went through that last year when who I think is a really good Rheumy hit the roof over my films after hearing I had been denied treatment and even told it was in my head but now after years of that, have damage in my neck, thoracic and SI/Hip areas.

I don't know what kind of radiologic evidence you have but for the early birds out there, it can really cause havoc before someone believes them.

Re: Amgen Study -- Drizzit Post 02/18/06
CentralGaGal #272909 12/20/15 06:45 PM
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CentralGaGal if I remember right the point was, as anna indicates, that most people with AS do not see full fusion and many don't progress to severe disease. I also agree with TNF that stats like that should not be used to set individual treatment. However I see your point though if you have a doc who won't diagnose you without signs of fusion. That is a battle many on here have fought to get proper treatment


These numbers were not part of a study by Amgen but were quoted by Amgen when looking at the TNF market for AS patients. I will see if I can dig them up but that was awhile ago.

I think it was a slide show from a presentation at EULAR but I will have to dig. I doubt I still have the slide show info

Last edited by drizzit; 12/20/15 06:57 PM.
Re: Amgen Study -- Drizzit Post 02/18/06
CentralGaGal #272912 12/20/15 10:23 PM
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Originally Posted By: CentralGaGal
TNTLAMB

I'm not sure this was the report I was looking for but clearly good information by the company.

Quote:
They have. no effect on your symptoms and very little on your treatment.

I must differ on the above comment as I see over and over others that haven't proven any fusion be denied treatment. I went through that last year when who I think is a really good Rheumy hit the roof over my films after hearing I had been denied treatment and even told it was in my head but now after years of that, have damage in my neck, thoracic and SI/Hip areas.

I don't know what kind of radiologic evidence you have but for the early birds out there, it can really cause havoc before someone believes them.


I'm curious as to what exactly you are defining as treatment? If it's biologics I think you are defining treatment incorrectly. Lets be clear, the US is really one of very few places in the world where biologics are first line treatments. In most places in the world this isn't the case. As I understand from my rheumy who is a Fellow and active on the world scene, there is no agreement that they should be first line treatments....


Officially dx'ed Nov/10 after being symptomatic 10+ yrs. HLA-B27 positive. 200mg Celebrex twice a day, Targin for pain. Started SSZ in Nov'13 for peripheral issues. Jan '14 added Gabopentin for SI flare related nerve pain. Nov '14 added MTX to the mix. July '15 liver enzymes went crazy and off SSZ and MTX. Back on both at reduced dosages in Aug'15. March '16-son#1 dx'ed AS

Re: Amgen Study -- Drizzit Post 02/18/06
CanuckMom #272913 12/20/15 10:31 PM
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Actually not just Biologics but DMARDS in general.

Re: Amgen Study -- Drizzit Post 02/18/06
CanuckMom #272924 12/22/15 02:53 AM
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Originally Posted By: CanuckMom
Originally Posted By: CentralGaGal
TNTLAMB

I'm not sure this was the report I was looking for but clearly good information by the company.

Quote:
They have. no effect on your symptoms and very little on your treatment.

I must differ on the above comment as I see over and over others that haven't proven any fusion be denied treatment. I went through that last year when who I think is a really good Rheumy hit the roof over my films after hearing I had been denied treatment and even told it was in my head but now after years of that, have damage in my neck, thoracic and SI/Hip areas.

I don't know what kind of radiologic evidence you have but for the early birds out there, it can really cause havoc before someone believes them.


I'm curious as to what exactly you are defining as treatment? If it's biologics I think you are defining treatment incorrectly. Lets be clear, the US is really one of very few places in the world where biologics are first line treatments. In most places in the world this isn't the case. As I understand from my rheumy who is a Fellow and active on the world scene, there is no agreement that they should be first line treatments....


Your Rheumy is very Much behind the times. EULAR substantially changed their protocols years ago Heres the discussion:http://m.ard.bmj.com/content/70/6/896.full

The US on the otherhand still utilizes step thaerapy and DMARDs in far too many instances

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