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#279250 - 10/09/17 10:44 PM Re: Let's try again [Re: Jlove621]  
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SouthernMoss Offline
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Spine doctors only focus on mechanical back problems. You will never get an AS diagnosis from a spine doctor. Even if your insurance would approve an MRI, the spine doctor will be looking for mechanical issues in the MRI, not inflammatory issues.

On the occasions where a spine doctor might actually suspect AS, they will refer you to a rheumatologist. I know you don't want to travel, but you really need to see a rheumatologist at least once to have your symptoms evaluated.

Have you gotten back the results of your additional blood work yet?


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#279251 - 10/10/17 12:43 AM Re: Let's try again [Re: SouthernMoss]  
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Jlove621 Offline
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The additional blood work was just a basic CMP and CBC. My doctors a holistic doctor so her treatment plan is the same if I got an AS diagnosis or not. She does not suggest seeing a rheumatologist for the simple fact that she does not like biologics. I understand they are hard on the body so she is suggesting an AIP diet and low dose naltrexone. I guess we will see how things go from there.
Thank you for your replies

#279252 - 10/10/17 12:48 PM Re: Let's try again [Re: Jlove621]  
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Winston Offline
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"For the simple fact that she does not like biologics"? Biologics are the gold standard treatment for AS today. They are the only treatment proven to halt progression of the disease when started early in the disease process. If your doctor is depriving you of the treatment for your disease because of her own personal preferences, she's a quack and likely committing medical malpractice. Please see a real doctor.

#279253 - 10/10/17 01:28 PM Re: Let's try again [Re: Winston]  
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Thesnakejakw Offline
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Originally Posted By: Winston
"For the simple fact that she does not like biologics"? Biologics are the gold standard treatment for AS today. They are the only treatment proven to halt progression of the disease when started early in the disease process. If your doctor is depriving you of the treatment for your disease because of her own personal preferences, she's a quack and likely committing medical malpractice. Please see a real doctor.
Actually biologics are not proven to halt disease progression it is believed in theory that it slows down progression but it is a theory for a reason. Though Biologics may help in * Some * people it does not help the majority. No where does it state that the medication will help everyone even in early disease progression cases, they just have a guess, if it was 100% proven then yes you would be right, but not the case, its also why Biologics are not the gold treatment and why more Rhems now days are not prescribing them to Early AS patients as they are as much as a mystery as the disease it self, and may cause more harm then good.


Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
#279254 - 10/10/17 02:36 PM Re: Let's try again [Re: Jlove621]  
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WhiteCell Offline
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Complex issue.

Issue is diverse symptoms and random diagnosis however, back pain, eye issue (most likely uveitis) in the presence of anemia and pain from head to toe clearly could be be AS relations....this is compounded by lack of medical resources.

It may be useful to consider relocation since your disease is altering your daily activities and really does require attention. Headaches in the presence of anemia are not uncommon (diminished oxygen = pain). Neurological symptoms in addition can lead from those changes in 02 transport to muscles.

On the other opinions on biologics.
I think that most will agree that biologics are tremendously helpful. They successfully halt the migration of tumor necrosis factor (TNF) into tissues which causes inflammation and pain. Anti TNF medications (Enbrel, Humira, Remicade) and others have successfully worked for millions of people.

The creation of these medications was a collaboration of the US Government and Johnson and Johnson which began in 1985. While they do not "cure" diseases they successfully halt progression of symptoms and may in fact work to delay onset and progression of disease. They are that good. They come with problems among these increase incidence of cardiac rhythm problems and others, however the ability to ease pain, reduce inflammation and increase the patients ability to live their lives free of pain is remarkable.

imho the OP's symptoms require a comprehensive review by a team. It may be that you find such a team in a new location to get this under control and, while not desirable, it may be necessary so that you can lead a full life.


Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#279255 - 10/10/17 08:55 PM Re: Let's try again [Re: Thesnakejakw]  
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SouthernMoss Offline
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Originally Posted By: Thesnakejakw
Actually biologics are not proven to halt disease progression it is believed in theory that it slows down progression but it is a theory for a reason.


This is not correct. It is true that biologics are not proven to HALT disease progression. However, it has been proven that biologics do SLOW the progression in many patients. The results of the study at this link https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3974160/ say "TNF-inhibitor treatment was associated with a 50% reduction in the odds of progression".

Michael Weissman is a rheumatologist, AS expert, and one of the top researchers of AS. He is one of the authors of the study in the link above. He gave a lecture at an SAA-sponsored event in 2015, and during that lecture he talked about the study and about the efficacy of anti-TNF treatment. You can find the lecture here. https://www.youtube.com/watch?v=KfYPu6T32kU Go to the 52:46 mark to hear his discussion of the effects of anti-TNF's on bone progression. Go to the 57:54 mark to hear his remarks about the study.


Quote:
Though Biologics may help in * Some * people it does not help the majority. No where does it state that the medication will help everyone even in early disease progression cases, they just have a guess, if it was 100% proven then yes you would be right, but not the case,

They never claimed to help "everyone". But they help hundreds of thousands of people every year. And the results are backed up by research and are not just a guess.


Quote:
its also why Biologics are not the gold treatment and why more Rhems now days are not prescribing them to Early AS patients as they are as much as a mystery as the disease it self, and may cause more harm then good.

Everything I have read says rheumatologists ARE prescribing them to early AS patients, in part because of results from research such as what is linked above. Obviously there are people who should not take anti-TNF's because of other conditions they may have, and there are risks just as there are with any medication. But for many, many people, the benefits far outweigh the risks.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
#279256 - 10/10/17 09:44 PM Re: Let's try again [Re: Jlove621]  
Joined: May 2010
Posts: 1,339
WhiteCell Offline
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WhiteCell  Offline
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Whidbey Island WA
Ginny's post is correct. Thanks for posting.

Last edited by WhiteCell; 10/11/17 12:45 AM.

Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant 2009.
Ahmed Shunt 2016.
DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
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