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#279212 - 10/06/17 07:24 AM Persistent mid back pain
PSO1957 Offline
Registered Visitor

Registered: 06/15/17
Posts: 7
Anyone with persistent mid back pain? Have been on Enbrel for 5 weeks, and for the most part feel better, except for this mid back pain. >6 months and gotten worse in the last week or so. I think it's from poor posture? Concerned about a fracture? Any thoughts?


Edited by PSO1957 (10/06/17 07:30 AM)

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#279213 - 10/06/17 07:45 AM Re: Persistent mid back pain [Re: PSO1957]
Ken Delano Offline
Registered Visitor

Registered: 05/26/04
Posts: 1520
Loc: Minnesota
My number one location for pain. I've been on Enbrel for 13 + years now. It has had a huge impact on my quality of life. Massive reduction of the body pains and I have had some increase in ROM in most of my joints. With that said I am not pain free. I came to accept the fact that I would never be pain free years ago.

You are still in the early stages of Enbrel us. It can take many months for you to feel the full extent of what it will do for you. During that time you might have periods of increased pain especially if you start to get ROM in joints to increase. Moving muscles, tendons and ligaments again that had not moved in years is something I did not expect. It certainly was painful in many cases but that passed quickly.
_________________________
AS/PsA DX in 1988

Retired on disability
in 2005 at age 44

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#279220 - 10/07/17 05:02 AM Re: Persistent mid back pain [Re: PSO1957]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 142
Originally Posted By: PSO1957
Anyone with persistent mid back pain? Have been on Enbrel for 5 weeks, and for the most part feel better, except for this mid back pain. >6 months and gotten worse in the last week or so. I think it's from poor posture? Concerned about a fracture? Any thoughts?


I have been in pain for well over a year now from this awful disease, only known I had it recently. The back pain tends to settle down a little bit then get worse, settle down and get even worse, I rely on opioids and muscle relaxers to get the pain down to a somewhat comfortable level, If you have AS You will never be completely pain free. I have talked with many people in person who said sure there are times where they wont have as much pain for a week but the downside is your pain multiplies by 10 the next week. Its a never ending battle. I have been told I have severe ankylosing spondylitis and I will never be pain free from my doctors. The pain is disabling I can't do my job anymore, and am suffering financially because of it. Waiting for my job to finally put the termination in order so I can begin collecting unemployment and pull out some of my 401k as I am behind, it will be soon though , and hopefully I can find a job that pays me $20 a hour without as much physical labor.
_________________________
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

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#279237 - 10/08/17 03:12 PM Re: Persistent mid back pain [Re: PSO1957]
NotMeToo Offline
Registered Visitor

Registered: 07/12/04
Posts: 1126
Loc: United States
Originally Posted By: PSO1957
Anyone with persistent mid back pain? Have been on Enbrel for 5 weeks, and for the most part feel better, except for this mid back pain. >6 months and gotten worse in the last week or so. I think it's from poor posture? Concerned about a fracture? Any thoughts?

PSO1057, it is difficult when you are in pain, but try to give the Enbrel more time, Five weeks is still very early days. Many patients do not see improvement for 3 to 6 months. In the meantime, stretching, gentle exercise, hot showers/hot tubs, heating pads, etc may relieve the pain. (These may also help with posture issues.)

Originally Posted By: Thesnakejakw
If you have AS You will never be completely pain free. I have talked with many people in person who said sure there are times where they wont have as much pain for a week but the downside is your pain multiplies by 10 the next week. Its a never ending battle.


This is not accurate. Remission is real and very possible with proper treatment for the majority of AS patients. CURE is not currently a possibility bur REMISSION is. I have very severe Ankylosing Spondylitis with a significant amount of fusion and several AS related joint replacements. I am in medicated remission - meaning that I can live my life, work, travel, care for an aging parent, and keep up with my young adult children pain free - or mostly so. Remicade infusions keep my disease under control. During brief periods when my infusions were delayed, the pain, stiffness and fatigue came right back. I do not take narcotics by choice.

All three of my now adult children have had AS or a related Spondyloarthropathy since they were teenagers. All three have had flares and remissions, changed medications (biologics), and have had significant periods of temporary disability. Two of the three are currently in medicated remission. The third is having some issues that are not currently disabling. Two are students at competitive universities the other is a recent medical school grad currently in the first year of residency. Only 1 of the 3 takes any form of narcotic and that is on an as needed basis (rarely.)

Thesnakejakw, if you are being affected by AS to the point of disability, you really need to seek a second opinion. Narcotics and muscle relaxants are only treating the symptoms not the disease. MTX alone is not considered effective treatment for AS. Studies that have been done have not yielded promising results for AS patients. Biologics are very expensive, but they (at least some of them) should be covered by your health insurance with an Ankylosing Spondylitis diagnosis. Combined with the copay assistance programs available in the US, the cost to you should be minimal. Early aggressive treatment is considered the the gold standard in battling AS and related diseases. (Please do not interpret this as an anti-narcotics post. While I choose not to take them, I have taken them and I will take them in the future if my condition warrants it.) Although it is true this disease primarily starts in young people, it takes time for things to progress to the point of total or permanent disability. I am always concerned when I hear that someone in their 20's considers themselves to be disabled. With today's medications and treatments this should be a very rare occurrence.
_________________________
Not Me Too!

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#279244 - 10/09/17 05:17 AM Re: Persistent mid back pain [Re: NotMeToo]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 142
Originally Posted By: NotMeToo
Originally Posted By: PSO1957
Anyone with persistent mid back pain? Have been on Enbrel for 5 weeks, and for the most part feel better, except for this mid back pain. >6 months and gotten worse in the last week or so. I think it's from poor posture? Concerned about a fracture? Any thoughts?

PSO1057, it is difficult when you are in pain, but try to give the Enbrel more time, Five weeks is still very early days. Many patients do not see improvement for 3 to 6 months. In the meantime, stretching, gentle exercise, hot showers/hot tubs, heating pads, etc may relieve the pain. (These may also help with posture issues.)

Originally Posted By: Thesnakejakw
If you have AS You will never be completely pain free. I have talked with many people in person who said sure there are times where they wont have as much pain for a week but the downside is your pain multiplies by 10 the next week. Its a never ending battle.


This is not accurate. Remission is real and very possible with proper treatment for the majority of AS patients. CURE is not currently a possibility bur REMISSION is. I have very severe Ankylosing Spondylitis with a significant amount of fusion and several AS related joint replacements. I am in medicated remission - meaning that I can live my life, work, travel, care for an aging parent, and keep up with my young adult children pain free - or mostly so. Remicade infusions keep my disease under control. During brief periods when my infusions were delayed, the pain, stiffness and fatigue came right back. I do not take narcotics by choice.

All three of my now adult children have had AS or a related Spondyloarthropathy since they were teenagers. All three have had flares and remissions, changed medications (biologics), and have had significant periods of temporary disability. Two of the three are currently in medicated remission. The third is having some issues that are not currently disabling. Two are students at competitive universities the other is a recent medical school grad currently in the first year of residency. Only 1 of the 3 takes any form of narcotic and that is on an as needed basis (rarely.)

Thesnakejakw, if you are being affected by AS to the point of disability, you really need to seek a second opinion. Narcotics and muscle relaxants are only treating the symptoms not the disease. MTX alone is not considered effective treatment for AS. Studies that have been done have not yielded promising results for AS patients. Biologics are very expensive, but they (at least some of them) should be covered by your health insurance with an Ankylosing Spondylitis diagnosis. Combined with the copay assistance programs available in the US, the cost to you should be minimal. Early aggressive treatment is considered the the gold standard in battling AS and related diseases. (Please do not interpret this as an anti-narcotics post. While I choose not to take them, I have taken them and I will take them in the future if my condition warrants it.) Although it is true this disease primarily starts in young people, it takes time for things to progress to the point of total or permanent disability. I am always concerned when I hear that someone in their 20's considers themselves to be disabled. With today's medications and treatments this should be a very rare occurrence.


The problem is the facility currently treating me is my 3rd opinion on the matter, and the best at treating it so far, I do not believe your post to be anti narcotic, I am just not a suitable person for biologics at the moment, but could change in the future. It is not only me that considers my self disabled, it is also the medical doctors who are working with me on this. Its not that I am full time disabled but, more like I will have to take 6 weeks off to quell the pain down. NSAIDS don't work for me as it causes stomach damage. You can also argue that biologics are just the same as muscle relaxers and narcotics as they are also not proven beyond a reasonable doubt that they do stop the disease there is only a chance that it will, You seem to be one of the lucky ones that you are mostly pain free. Many people have gone through all bios tnfs, mtx and still are in crippling pain. it is not a rare occurrence that people like me are in disabling pain, it is actually quite frequent that we suffer a lot and no matter how much medications we take we will be in pain. All other facilities including mayo clinic said my pain was in my head and or that I was faking my symptoms I requested back x-rays, MRIS- Chest MRI's and they all just said no we are not going to give you something that is not going to result in anything the facility that is treating me now decided to do a back x-ray and extra blood test and found the HLA GENE Positive, I do not have a medical place I can go to be treated as all the other ones were insufficient at diagnosing so they are going to be insufficient at treating me. Especially since x-rays showed as damage


Edited by Thesnakejakw (10/09/17 08:26 AM)
_________________________
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

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#279263 - 10/12/17 08:31 AM Re: Persistent mid back pain [Re: PSO1957]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1319
Loc: Whidbey Island WA
I must admit that I am confused as to the history here.
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

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#279274 - 10/13/17 12:26 PM Re: Persistent mid back pain [Re: PSO1957]
Kris44 Offline
Registered Visitor

Registered: 03/23/16
Posts: 11
I usually have lower back pain, but 3 days ago woke with mid back pain. It hurts more when I breathe in and was more on the left side, s I figured costochronditis. However, the mid back pain is almost constant now and moves up my neck. I didn't do anything different, just figure it's an AS symptom flare. It is nagging though. Hard to turn around or lift anything. I don't know which is worse, lower or mid.
_________________________
Female 45, ANA positive, HLA-B27 neg, MRI + sacro/iliac disease, DDD, psoriatic arthritis, coagulation defects, diskectomy
Symptoms since 15 y.o.
DX: 2 years ago AS
Past Meds: Sulfasalazine, Humira, Enbrel, Naproxyn, Cymbalta
Current Meds: Starting Methotrexate and Cimzia and continuing Prozac, Ibuprofen, Vit D, Folic Acid, Cyclobenzaprine, Mobic

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#279285 - 10/15/17 05:14 PM Re: Persistent mid back pain [Re: PSO1957]
NotMeToo Offline
Registered Visitor

Registered: 07/12/04
Posts: 1126
Loc: United States
Originally Posted By: Thesnakejakw
You can also argue that biologics are just the same as muscle relaxers and narcotics as they are also not proven beyond a reasonable doubt that they do stop the disease there is only a chance that it will,


No. That would not be a valid argument. Proof of efficacy "beyond a reasonable doubt" is an impossible standard in medicine. No drug or medical treatment meets that.

The biologics have been extensively studied for 2 decades. They have definitively been shown to reduce signs and symptoms of Ankylosing Spondylitis in large numbers of patients. They have definitively been shown to control inflammation and rapidly suppress cytokines (in the case of Enbrel, Humira, Remicade and Simoni - that cytokine would be TNF) in large numbers of AS patients. Several studies have shown evidence that the biologics may help to prevent radiologically observable disease progression. There are many many patients just like me that have gotten their lives back thanks to biologic drugs. Personally, I have a whole family full of them.

You have posted about being prescribed prednisone, methotrexate, soma and oxycodone. These drugs have been around for a long time and have also been extensively studied. None have shown efficacy in treating the underlying disease process of Ankylosing Spondylitis. Prednisone does reduce inflammation and many AS patients take short term dose packs to bring their AS under control. Unfortunately, the high doses that would be required long term makes prednisone a poor treatment choice. MTX is often used as mono-therapy for RA but has shown no significant efficacy for AS. Some AS patients take it successfully in conjunction with biologics. Soma is an excellent muscle relaxant. It relaxes muscles and reduces muscle spasms. This may reduce (muscular) pain but does nothing to reduce inflammation or control the disease process. Oxycodone is very effective in reducing pain, but again does noting to reduce inflammation or control the disease process.

I understand that you really like your rheumatologist and are very grateful to her that she diagnosed you. However, I would be very concerned that she has diagnosed you with a degenerative disease and is doing nothing to help you TRY to stop degeneration. Based on your posts she is not following the standard of care with you and is treating you very unconventionally. If, as you indicated, you are meeting large numbers of people in her waiting room that are full of gloom and doom about the disease and feel that "no matter how much medications we take we will be in pain" you should wonder why. Most AS patients do not end up disabled or in unremitting constant pain for the rest of their lives. Most AS patients treat their disease and live their lives relatively normally. Is it normal to have pain? Yes. Is it normal to have near constant crippling pain? No. Perhaps your doctor is misdiagnosing people. Perhaps she is treating people incorrectly. I can't answer that. But, unless you want to take the risk of permanent damage, you should try to find the answer.
_________________________
Not Me Too!

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#279286 - 10/16/17 12:20 AM Re: Persistent mid back pain [Re: NotMeToo]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 142
You have stated large number of patients in several studies there has only been one study that showed it could possibly slow down progression in a 50 percent success rate. Unless there was a study done with thousands of people I lack the knowledge of seeing, how effective you think they are. I know people now that we're on biologics when they got the disease in 2000 such as remicade ect. It has done nothing for them as most of them progressed at a standard rate . You can't say it's not normal to have extreme pain as there are a high percent of people who do. I never stated my medications I take halt disease progression you also shouldn't say biologics help most people as that is a flat out lie, as a study of 12-24 years is not sufficient enough to say they help the majority the several studies were conducted with low patient numbers 300-600 and with not over 50 percent did it slow disease progression and in all the studies they say might and can just how you say may. leave the doctors out of this one just going on factual evidence and not cult medicine proof.


Edited by Thesnakejakw (10/16/17 12:20 AM)
_________________________
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

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#279287 - 10/16/17 09:37 AM Re: Persistent mid back pain [Re: Thesnakejakw]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1760
Loc: MS
Originally Posted By: Thesnakejakw
You have stated large number of patients in several studies there has only been one study that showed it could possibly slow down progression in a 50 percent success rate. Unless there was a study done with thousands of people I lack the knowledge of seeing, how effective you think they are. I know people now that we're on biologics when they got the disease in 2000 such as remicade ect. It has done nothing for them as most of them progressed at a standard rate . You can't say it's not normal to have extreme pain as there are a high percent of people who do. I never stated my medications I take halt disease progression you also shouldn't say biologics help most people as that is a flat out lie, as a study of 12-24 years is not sufficient enough to say they help the majority the several studies were conducted with low patient numbers 300-600 and with not over 50 percent did it slow disease progression and in all the studies they say might and can just how you say may. leave the doctors out of this one just going on factual evidence and not cult medicine proof.


Please cite your sources. Otherwise, your remarks are just as unreliable as you claim NotMeToo's to be.

_________________________
Ginny - 56 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

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