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06-17-2014, 07:56 AM   #1
Jajabinks
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Spondylitis remission

Hello everyone,

I just wanted to know if anyone's back aches (spondylitis) has ever went into remission and how did you achieve remission? I'm really suffering bc I cannot take any biological due to an indeterminate TB test. I now have to be treated for TB for several months and I'm so sad and scared. My conditions are not being controlled, not even Prednisone is helping. All I can think of is my five year old son. I feel so lost...
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Fish oil, turmeric powder, n-acetyl glucosamine, l-glutamine, slippery elm, marshmallow root, DGL, multivitamin, vitamin D. Crohns in terminal ileum. One semester left. Academics on hold thanks to painful Crohn's arthritis...
06-17-2014, 08:04 AM   #2
Clash
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Since C, my son started mtx injections and 2 days PT swimming and 1 day PT clinic he has not complained of the back pain. He seems so much more mobile and claims he is sleeping better(he's a teen and it's summer so he's up late and sleeps late)

He was even able to get a summer job. But C has no fusions yet, he will need to start a biologic soon but he had been on high dose remicade and oral mtx for his CD for two years and had back pain the entire time.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
06-18-2014, 11:37 AM   #3
Maya142
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My husband and my older daughter are both in remission. My husband's AS mostly caused a lot of trouble when he was young (20s, 30s) and now doesn't really bother him anymore and hasn't progressed at all in 7 years (though he has had multiple hip replacements over the years). He is only on an NSAID.

My older daughter is on Humira + methotrexate + NSAID and is in what her rheumatologist calls "medicated remission." She's enjoying her internship this summer and swims regularly (which helps a lot with stiffness). It's this particular combination of medications that has made all the difference in the world for her -- she was in a wheelchair before we got her on Humira.

Did your doctor do the skin TB or the blood test? The reason I ask is my husband had an "indeterminate" TB test when he had the skin test but the blood test (quantiferon gold) and chest x ray were both clear.

Could you take an NSAID for now? My younger daughter (who has IBD) is allowed to take NSAIDs because her rheumatologist and GI decided she needs them as she has a more aggressive case of AS and a milder case of IBD.

In terms of the prednisone, for both my girls, it takes at least 15-20mg to make a difference. Once they taper, the pain comes right back.

Good luck!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
06-25-2014, 02:03 PM   #4
Jajabinks
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Thanks for sharing Maya. How do you know when it is time for a hip replacement? I thought you only get them once and you're done. Why did he get several? Does he have a hard time sitting? That is my biggest problem. I cannot sit without pain. Was she in a wheelchair due to hip problems? What a gruesome condition this is.

I had the blood test and my rheumy said I will only need treatment for TB for a month which was great news. Now my only worry is how I will respond to Humira. She also prescribed Methotrexate. My xray was clear. I am on 30mg of Prednisone and it isn't doing much for me. I cannot take NSAIDs, landed me in the hospital. I seem to tolerate Mobic but I don't know if it helps much.
06-25-2014, 02:32 PM   #5
Maya142
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I hope the Humira helps! For my younger daughter it took 6 months to work, but for my older daughter only 2 months. Give it time.

My husband's x rays showed bone on bone and that's when he had his first hip replacement. He was relatively young and his hips wore out which is why he had his second. Now the technology is much better and hips last much longer. He did have a hard time sitting, but once his SI joints fused (in his 30s) they no longer hurt, so he can sit for a long time now.

My girls both have trouble sitting, but the older one is doing well on Humira and it's not such a problem anymore. The younger one knows to get up and walk and stretch every so often so that she doesn't get so stiff.
Biologics have really changed their lives! I hope they work as well for you!
06-25-2014, 03:02 PM   #6
David
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Jajabinks, my suggestion would be to check out the clinical trial in my signature.

All my best to you.
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06-25-2014, 10:44 PM   #7
Jajabinks
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Hey David, I have contacted them, wish me luck. Hoping they will get back got to me before July 9 since that is when I am scheduled to try my first biologic. ::fingers crossed::
06-25-2014, 11:46 PM   #8
afidz
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I'm not diagnosed yet because I can't afford the appointment (going to go soon) but my GI put me on Humira for IBD and it made a HUGE difference. I slept through the night that night for the first time in 3 years and then the next morning I did something I didn't know I could still do. I just got out of bed. No struggle, no pain. Just sat up, with out any ones help. And went about my day. My body has an unusually fast response time to Humira though. I haven't heard of it working that quickly for other people but I do hope it works well for got and you can start feeling better
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
07-17-2014, 10:38 PM   #9
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How were you diagnosed with Spondylitis? I've been experiencing severe back pain and had every test under the sun but they can't figure out what it is. My CRP level is elevated tho.
07-17-2014, 10:43 PM   #10
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and sorry...didn't wanna hijack your post
07-17-2014, 11:51 PM   #11
afidz
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From what I have read, AS can be hard to dx because it doesn't show on any imaging until it has been active for several years. I think all tehy can do is assume you have it based on your symptoms and blood work, but I might be wrong. You would go to a rheumatologist to get dx
07-18-2014, 12:38 AM   #12
Maya142
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A rheumatologist is definitely the person to see if you suspect you have AS. It does take up to 10 years for damage to show up on an x-ray, so early in the disease MRIs are often used.
Blood work, symptoms and family history are all factors in the diagnosis.
07-18-2014, 12:54 AM   #13
afidz
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Thanks for clarifying that, thats what I read, but as I am just now starting to try to get a dx I wasn't sure
07-18-2014, 10:27 PM   #14
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Thanks everyone!
07-29-2014, 01:09 PM   #15
Jajabinks
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A rheumatologist is definitely the person to see if you suspect you have AS. It does take up to 10 years for damage to show up on an x-ray, so early in the disease MRIs are often used.
Blood work, symptoms and family history are all factors in the diagnosis.
Hey Maya! How r u?

I've been meaning to ask you if your daughters AS came on rapidly (like in my case) or the symptoms built up gradually?
07-29-2014, 08:38 PM   #16
Maya142
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It was kind of both - both my daughters had been complaining of joint pain on and off for years but we thought that was just from playing sports. Then my older daughter's ankle and knee became really swollen which prompted tests and she was diagnosed. 2 years later, the younger one's knee became swollen and she complained of lower back pain - she was diagnosed then.

Things got bad really fast, but I guess all that took some time to develop. I wish we had caught it earlier and treated them both with biologics earlier -- we may have been able to prevent joint damage.

Have you started Humira yet?
07-29-2014, 08:42 PM   #17
Jajabinks
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The onset of mine was rapid. Developed in three months maybe less. Touched everything including jaw. I felt deathly ill and I had conjuctivitis. Everyone I talk to didn't have such severe symptoms develop so quickly. I start Humira in August. Insurance is taking their sweet time. Sighs.
07-29-2014, 08:50 PM   #18
Maya142
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Are you sure it was conjunctivitis and not Iritis? Iritis (or uveitis) is inflammation in the eyes and is associated with AS (and IBD). Your eyes can be very red, just like when you have conjunctivitis.

When insurance takes forever, sometimes our rheumatologist has been able to start my daughters on samples. Also, persistence pays off! You can call both your insurance company and your doctor's office.

Both my daughters have jaw involvement and have many peripheral joints, like knees, ankles, elbows and hands (in the younger one) involved. It really is the worst!
07-29-2014, 08:58 PM   #19
Jajabinks
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I was waking up with yellow goop in my eyes and at some point it did look like episcleritis but not iritis or uveitis. It went away quickly with no meds. My body is so weird these days. My rheumatologist said she didn't have enough samples to hold me over until August n my GI doesn't have any either. My rheumy wants me on Humira for only six months which is off being that this is a condition that doesn't go away. She's not convinced I have classic AS. The jaw inflammation was weird, it didn't hurt persay but it felt tired n clicked as I chewed. That last a few hours n then the pain migrated back into my spine. My symptoms have died down since my first initial flare which was sudden and debilitating.
07-29-2014, 09:04 PM   #20
Maya142
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I PM'd you!
I hope Humira comes through soon (it's almost August!).
07-30-2014, 09:00 AM   #21
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Hi, I'm not sure how to classify the type of reoccuring sacroiliac joint pain I get, but I have found something that works for me if I take it daily, in the morning, on an empty stomach (I have had digestive issues when taken with foods and some people say that tumeric extracts block absorption of iron, or other minerals, in meals).

It is a 500mg black cumin seed extract, called Thymocid, which I take in a combo supplement by Life Extension which includes 250mg of Bio-Curcumin (tumeric extract), also. This particular product, though there may be others, is called Black Cumin Seed Oil With Bio-Curcumin. Maybe it is the Thymocid alone which helps, but I haven't tried other brands yet. I do know that super doses of curcumin alone doesn't help my joint pain.

I did not test positive for HLA-B27 and my SI joint pain occurs independent of any digestive flairs, but is directly related to not enough sleep and D3. I only get joint pain in the sacroiliac joint, nowhere else. My useless doctor suggested I start taking Pentasa daily for this axial joint pain--in my opinion, Pentasa is an expensive placebo, which may have limited efficacy for those with colitis symptoms and maybe peripheral joint pain, foisted onto crohn's patients with generally mild cases.

If I take 2 capsules of Life Extension Black Cumin Seed Oil with Bio-Curcumin daily, I don't get my si joint pain. I just ran out three days ago, and last night I had my first episode since starting this stuff, about two months ago. It's proof enough for me to post about it. Thankfully, I've got another bottle coming today in the mail.

Do a scholar.google.com search for "The Joint-Gut Axis in Inflammatory Bowel Diseases" and maybe do another for Black Cumin Seed and inflammation or ibd to see why this might work. I still haven't parsed through that first article... Here's a link describing Spondylitis: http://www.spondylitis.org/about/faq.aspx
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07-30-2014, 07:48 PM   #22
my little penguin
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Good article on what came first IBD or SpA.
Not sure in DS's case .
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09-05-2014, 03:39 PM   #23
Jajabinks
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Thanks for giving me some hope Maya. I turn to this thread and read about your husband when I'm feeling hopeless and doomed. I read somewhere that AS calms after 40 but a lot of AS sufferers disagree however, I have read stories where it does and I'm praying since it started up so aggressively for me (full blown in 3 months) that it'll calm down some day. Again, thank you Maya...
09-05-2014, 03:43 PM   #24
Jajabinks
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How were you diagnosed with Spondylitis? I've been experiencing severe back pain and had every test under the sun but they can't figure out what it is. My CRP level is elevated tho.
How r u doing?
09-05-2014, 07:56 PM   #25
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How r u doing?
Hey! Still in tons of pain. Doc wants to put me on Humira. We are just waiting to see if the drug company can cover most of the cost as I don't have private medical insurance through work. He is hoping that's the solution to the problem or at the very least relieve some of the pain.

How are you?
09-27-2014, 03:36 PM   #26
Jajabinks
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Hey! Still in tons of pain. Doc wants to put me on Humira. We are just waiting to see if the drug company can cover most of the cost as I don't have private medical insurance through work. He is hoping that's the solution to the problem or at the very least relieve some of the pain.

How are you?
Started Humira, haven't noticed a difference yet. Hope you are doing better.
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