AS...Long ramble and q's. Sorry! Help needed

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lillise
Regular Member


Date Joined Jan 2007
Total Posts : 90
   Posted 2/8/2007 2:16 PM (GMT -7)   
Hi, i wanted to post and ask for your experiences on Ankylosing Spondylitis (sp?)
I am 25 and have Crohns disease (diagnosed 2002).  I have suffered with back pain since i was 12.  It initially started with sciatica that went on for many years and i often couldn't walk and had to be turned over in bed, carried to the loo etc....you know the score i'm sure!  I visited a physio who said she wanted me to be referred to a rheumy to look into AS as she felt i had inflammatory joint pain that had been going on too long and asked for a HLA-B27 blood test.  I tested positive for HLA-B27 and visited the doc (still only 13yrs old then) who said it was growing pains...no further blood tests.  I was told to grin and bear it and be sensible about how i lay down, sit move etc.
I carried on like this trying a range of painkillers from my doc to very limited affect but the pain and stiffness was contained to my pelvis and did not seem to trouble other areas....so i did as i was told and grinned and beared it. Anyway, after many years of no change i developed Crohns disease and was diagnosed etc.  I was put on a course of steroids (pred) and found at the higher end of the dose, my back pain went but as i came down it came back and the pain had now spread to my thoracic area which was excruciating, couldn't lift things etc and couldn't sleep.  I went back to the doc and he referred me back to the rheumy who took blood and did an MRI on my thoracic area.  The results showed high levels of inflammatory markers in blood and slight degeneration of 3 discs in my spine.  He said that cos i had crohns, the blood results would say that anyway and said the damage to my discs was from steroids-nothing could be done, just had to take painkillers.  During the last 5 years  have had 5 months off steroids whilst in crohns remission but the back pain became worse than ever.  I felt like i could not do ANYTHING. i moved back home with my mum as i couldn't look after myself and i'm still there! Even in my remission from crohns, they took blood and my inflammatory markers were still v high (have had blood tests every few mnonths for past 5 yrs) even tho i had no crohns symptoms.  Came to end of my tether a few months back as was waking every hour at night and could hardly do anythig and went back to rheumy.  He did a full spine MRI that showed no inflammation and said it couldn't be AS or it would show up.  I started remicade for my crohns last week and was on high dose of steroids before that and the pain melted away again.  Currently my back pain is non existant (HOORAY) and i am over the moon but my GI Doc said that research shows, especially in females, that MRI scans do not always show up the damage till later on in the disease.  Has anyone else had this experience.  Don't get me wrong I DON'T WANT AS but i do want an answer as to what is wrong with my back, is it crohns related, is it AS, why do steroids and remicade help if its not inflammatory, if its not inflammatory then why have my inflammatory markers not gone down in the last 5 years even tho i had a peroid of remission with crohns??
I'm so so sorry for the incredibly long ramble.  I'm just worried that if the remicade sorts my crohns out, it'll be taken away and the back pain will come back.  With no diagnosis, how can i get treatment?
Confused and would like to hear of your diagnosis experience or advice :o)
Lise
Diagnosed start of 2002. Had 5 months of remission since diagnosis.  Tried lots of different meds, starting on infliximab (remicade) Feb 07, Have to jump thro hoops here in England to get it so fingers crossed it works! Tired and hoping for a drug that helps. :o)


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 2/8/2007 6:01 PM (GMT -7)   
The description of your back problems and joint/tendon inflammation sounds just like mine. Remicade has helped immensely with my inflammation, etc. Remicade is not taken away when the Crohn's goes into remission according to my GI. It is given to maintain remission. My CD has been in remission for two years. I still will have flares of AS prior to my next infusion. I agree with what your GI told you, that the damage of AS is slow to show up in females. As long as your GI understands your situation and joint/back pain, hopefully you will be okay. Sorry to not post more but I have to go - I'll try to get back and answer more throughly tomorrow.
Co-Moderator Crohn's Disease Forum
 
CD, Ankylosing Spondylitis, peripheral neuropathy, Sjogren's Syndrome
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starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 2/9/2007 10:02 PM (GMT -7)   
Hi Lise - I had the 'symptoms' of AS for almost 20 years before it showed up on any xray. By the time it did, my sacroiliac joints were (are) 2/3rds fused. I have visible involvement in my heels and my neck.

From everything I have read and from the many conversations I have had with my rheumy, it is very common for women to slowly show any involvement from AS. Originally, AS was considered a "mans' disease, so they really didn't look that hard at us women to see what involvement we may or may not have. That is changing (albeit slowly) as more women present with AS nowadays. Unfortunately, there are still many doctor's who can't believe that we do have AS and we still go undiagnosed (or diagnosed with something else).

I initially was on Enbrel & MTX for my AS & RA. When I was diagnosed with CD last year, I was switched over to the Remicade (and continued the MTX). It's a tricky balance, in my opinion, to get the mix of med's just right so that everything is covered for almost the same period of time. I was originally on the 8 week infusion plan, but at 6 weeks, my AS & RA were flaring up. Now, I'm on the 6 week plan and the AS & RA are under control, but the CD...well, I'm still not sure it's under control. That however, may be due more to the strictures I have, rather than major inflammation.

I agree with Ides - they generally don't stop a medication just because you're in remission, they continue the medications to keep you in remission, although they may extend the time between infusions, if necessary.

One thing to keep in mind -- being HLA-B27 positive does not always mean a person will have AS. You can be B27 negative and have AS.

Your joint pain/inflammation could be a result of both AS and CD or either one. If one thing is under control, the other one could be the reason you're still showing elevated inflammation on your blood tests because it isn't under control. Anything is possible!

I hope this helps in some small way -- you are certainly not alone. Have you checked out the National Ankylosing Spondylitis Society? They have wonderful information for those in the UK... here is the website www.nass.co.uk (sorry I can't make it a workable link).
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum

Remicade every 6 weeks, Methotrexate weekly, Folic Acid daily


EveSasser
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Date Joined Mar 2006
Total Posts : 808
   Posted 2/11/2007 2:48 PM (GMT -7)   
I didn't read every word in this thread, but it is my understanding that AS doesn't always show up on an MRI and that it can take years. I have a clinical diagnosis of AS because I meet all of the criteria. I don't think anything has shown up on an MRI. For a diagnosis of AS, there are about six criteria - having it show up on an MRI is not among those. I know it is hard to sort out all of these diseases. I seriously doubt they will take your remicade away if you are in remission. For many people, staying on the drugs is required to maintain the remission. In the meantime, you may want to find a new rheumatolgoist or get a second opinion.

lillise
Regular Member


Date Joined Jan 2007
Total Posts : 90
   Posted 2/12/2007 1:45 PM (GMT -7)   
Hi guys,
Thanks for your replies, its really good to hear others experiences, not that i'd wish them on anyone but you know what i mean :o).  I now have an appointment with a new rheumy at a better hospital so fingers crossed we get somewhere!!  Guess i need to ask my GI Doc more q's about what will happen if the remicade is successful as well, at least then i'll know and could (possibly) stop worrying about it being taken away!
Thanks again, hope you are all as pain free as possible
Lise :o)
 
Diagnosed start of 2002. Had 5 months of remission since diagnosis.  Tried lots of different meds, starting on infliximab (remicade) Feb 07, Have to jump thro hoops here in England to get it so fingers crossed it works! Tired and hoping for a drug that helps. :o)


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 2/13/2007 11:28 AM (GMT -7)   
Hey there Lise... when is your appt? Hope you are well... please keep us posted on what happens!

Duck
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


Keah
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Date Joined Nov 2003
Total Posts : 7314
   Posted 2/15/2007 7:00 AM (GMT -7)   
I also have Crohn's and AS and have had symptoms of both from childhood. Like you, I was also told that I had growing pains and that they would eventually go away. They didn't.

Although I had several bad CD flares that landed me in the hospital, it took over 20 years to get a Dx and even now, that's tentative. However, by the time I was told it was CD, I had done lots of research on both CD and the CD-AS link. I got a referral to a Rheumy right away and had an assessment. My bone scan showed arthritis in all my large joints and there is evidence of sclerosis in my lumbar spine. So far, my SI joints are still looking pretty good although my Pain Mgmt Doc has been injecting them for 3 years now.

Of the 2 diseases, the AS is the worst. I can live with my gut symptoms, but not the joint pain. I just received the first shipment of Humira and will get my loading dose next week. This will get both diseases under control and I will continue it even after I hit remission. Hopefully, the Remicade will do the same for you.

You asked about how steroids can help if AS is not inflammatory. How did you come to the idea that it is not? AS is most definitely an inflammatory disease and sed rate/CRP is the measure of control for AS. I have inflammation in the bone itself and all of the soft tissues surrounding the joints. You can find a lot more info at SPONDYLITIS.ORG


Keah a.k.a. Wormy
 God helps those who help themselves.
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Baybreeze
Regular Member


Date Joined Oct 2005
Total Posts : 315
   Posted 2/17/2007 7:02 AM (GMT -7)   

HI,

My rheumy started suspecting AS b/c I had developed severe spine problems (stenosis, spondylosis, DDD, sciatica, disc herniations) and sometimes my spine pains & tenderness would travel up & down my spine. I also started having pains in my shoulders, hips/pelvis area, my rear end (the bones deep inside there hurt alot), my knees, and ankles. He sent me for x-rays & MRI's but they did not show any fusing anywhere. I did not have that blood test done, though. so he's ruled out AS for now but always asks me about these areas when I come in. I should note that I do not have Crohn's disease, though. I have also read that fusing can show up much later in women & they can even have different disease activity than men.


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 2/23/2007 9:44 AM (GMT -7)   

what r the 6 criteria for AS? now i developed stiff neck and back pain plus ribs pain.

pls reply

EveSasser said...
I didn't read every word in this thread, but it is my understanding that AS doesn't always show up on an MRI and that it can take years. I have a clinical diagnosis of AS because I meet all of the criteria. I don't think anything has shown up on an MRI. For a diagnosis of AS, there are about six criteria - having it show up on an MRI is not among those. I know it is hard to sort out all of these diseases. I seriously doubt they will take your remicade away if you are in remission. For many people, staying on the drugs is required to maintain the remission. In the meantime, you may want to find a new rheumatolgoist or get a second opinion.

Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 2/25/2007 8:17 PM (GMT -7)   
Isotone, the complete picture of diagnostic criteria can be confusing. I'll give you as much info as I can, but keep in mind, there are several different sets of criteria and which an MD uses can vary.

ESSG Criteria:
Inflammatory spinal pain or synovitis and 1 of the following:
Alternating buttock pain
Enthesitis
Sacroiliitis
Inflammatory Bowel Disease (IBD)
Positive Family History of SpA

Amor Criteria (total of 6 points of more):
Inflammatory back pain 1 point
Unilateral buttock pain 1 point
Alternating buttock pain 2 points
Enthesitis 2 points
Peripheral arthritis 2 points
Dactylitis (sausage digit) 2 points
Acute anterior uveitis 2 points
HLA-B27 + or family history 2 points
+ response to NSAIDS 2 points

Although neither of these sets of criteria address heel pain, that is also prominent in the research articles on SpA.

Then there is the NY Criteria:
Low back pain with inflammatory characteristics
Limitation of lumbar spine motion in sagittal and frontal planes
Decreased chest expansion
Bilateral sacroiliitis grade 2 or higher
Unilateral sacroiliitis grade 3 or higher

And the Rome Criteria:
Low back pain and stiffness for >3 months that is not relieved by rest
Pain and stiffness in the thoracic region
Limited motion in the lumbar spine
Limited chest expansion
History of uveitis

I used to have some great articles, one of which also contained a flow chart for Dx, but I can't seem to locate it now. If I do come across it, I'll post a link for you. Hope this helps.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 2/25/2007 8:25 PM (GMT -7)   
OK, let's see if I can make the link work.
 
 
YAY! It worked, but be patient, it takes a while to load. The file is a .pdf file so you'll need Adobe Acrobat to view it. In the event that you can't load it, fell free to email me and I can email the file back to you.

Post Edited (Keah) : 2/25/2007 8:28:39 PM (GMT-7)


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 2/26/2007 10:52 AM (GMT -7)   
hi Keah
 
thank  u so much for info
i have migratory pain
sometime i have stiff neck or spine.
i have left hip pain and ankles and knees and ribs pain. i wake up with neck and back pain
no HBLA27 positive no ESR no CPR
what meds should use for AS im so affraid about imunusupressant meds.
does AS shows on xray or MRI? could be an infection be a trigger for AS ?
should have special diat for this?
regards
 

Post Edited By Moderator (Ides) : 2/27/2007 3:31:35 PM (GMT-7)


abnalexmom
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Date Joined Sep 2004
Total Posts : 905
   Posted 2/26/2007 1:31 PM (GMT -7)   
I hate to make a selfish post here, but out of those diff criteria, I match up on each one!  So I guess it wouldn't make a diffrence which one my dr used eh?
 
Sigh......why can't we get a doc to just diagnose something?  Is it too much to ask or what??  Oh well.....I can always just dream I suppose.
 
Best of luck to all w/this,
Beth
Fibro, RA, Costo, Endo, IBS-D, Anxiety-2004
 
"It is what it is."  ~ by a good friend o'mine...
 
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Any advice posted by me is simply that, my experience/opinion only. 
  
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Keah
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Date Joined Nov 2003
Total Posts : 7314
   Posted 2/26/2007 4:21 PM (GMT -7)   
istone, the best I can do is share with you what I've learned through my own experience and from reading what others have said.
 
Spondylitis, in it's early stages, consists primarily of soft tissue inflammation. The nature of this is not consistent and so migratory pain is common as the inflammation in one area subsides and another area increases.
 
I have chronic tendonitis in my right shoulder, both knees and both Achilles' tendons. Also, I've had chronic inflammation in the Synovium, the tissue which makes up the capsule around the joint, in my knees and the same tissue is sclerosing, or hardening in the joints of my lumbar spine. My pain comes from my R shoulder, neck, thoracic spine, lumbar spine, R SI joint, both hips, both knees and both ankles. Sometimes my fingers get in on it too, but not too often. The back, neck and SI joint pain is almost constant now, but the rest varies in intensity and and occasionally come and go.
 
One result of the inflammation is muscle spasms and I live with those with the help of a muscle relaxant called Zanaflex (tizanidine). these spasms make everything stiff and I long for the day that I can be spasm free.
 
I am also HLA-B27 negative and I've never had an elevated ESR or CRP. The role of HLA-B27 is not well understood and testing for it does not make much of a difference in terms of being Dx with Spondy. Yes, many more people who test positive will be Dx, but having a positive test does not mean that you will get the disease, just that you are at a higher risk for it. Likewise, there are many people who test negative and do develop the disease. It is suspected that although B27 does play a role, there are many other genes that contribute.
 
Many people with Spondy respond well to NSAIDS, especially in the early stages of the disease. Since I also have Crohn's disease, I can't tolerate them, but they may work well enough for you, at least for now. I have read some info about the possiblilty that NSAIDS may actually provide temporary relief, but in the end, lead to disease progression. This is not the general consensus, but I thought you should know of the possibility. I think that whether you choose to use NSAIDS, is something you need to discuss with a Rheumy. The truth is, if I could handle NSAIDS, I would take them.
 
Since Spondy is an autoimmune disease, immunosuppressants seem to offer the most hope to control disease activity. The meds most often used to treat SpA are Methotrexate, Enbrel, Humira and Remicade. IMO, Remicade is the least toxic and that is what I chose to begin treatment with. Now, that things are worse, both from the SpA and Crohn's, I'm upgrading to Humira, which will treat both disease. Enbrel was not strong enough to affect the Crohn's.
 
SpA id made up of a group of different diseases that are mostly considered to be autoimmune. Reactive Arthritis is among them and so it's possible that gut trouble or some type of infection could have triggered the arthritic condition. IMO, those most at risk for and AI disease would likely develop SpA at some point, whether or not there was some thing to call the precipitating cause, such as an infection.
 
SpA or AS does not often show on X-rays or even MRIs until the disease process is considerably advanced. The earliest imaging which might indicate it would be a bone scan.
 
There is no diet proven to help, but many people with SpA insist that a carb free diet has helped them considerably. I do not have the wear-with-all to stick to something like that.
 
I hope you can get some answers and relief soon.

istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 2/27/2007 5:58 AM (GMT -7)   
hi
do u have any joint damage? i have cartilage damage in my knees and ankle i now started on my hip .i scary
not yeat dx i dont know what could be. could be OA and AS?
mine started on knees first and than spreaded to all the joints.
could be from ReA or some infection in my body.
regards

Post Edited By Moderator (Ides) : 2/27/2007 3:32:18 PM (GMT-7)


seechell
Regular Member


Date Joined Sep 2006
Total Posts : 362
   Posted 2/27/2007 9:58 AM (GMT -7)   

Hi-

I also suffer from AS. Mine is no where near as advanced as your's. So far it has remained in my outer hip joints, my groin area hip joints, and my lower back or sacroiliac joints. It hurts like he**. I have decent range of motion. I was on methotrexate but had to quit because I can't afford to go to the Dr. every six weeks and have blood work done. I've also tried sulfasalazine, which was awesome until I developed mouth sores. Nothing would help them, we tried folic acid and the standard solution. So again I'm on nothing but aspirin. My point to all of this is that I can sympathize with you and I wish you some pain free days.

One more after thought; my knees hurt so bad that I can hardly stand up from a sitting position. Can AS effect you knees and ankles etc?



Take Care,
               Chelle
    "God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference."
  DX: ankylosing spondylitis, periferal neuropathy, chronic migraines/headaches, depression/panic attacks, bi-polar, hypothyroidism, hypoglycemia, sleep apnea
  RX: synthroid, estradiol, prozac, lamictal, inderal la, klonopin, seroquel, imiprimine, aspirin, (relpax, maxalt, phenergan, esgic plus, xanax, PRN for migraine)
  Surgeries: hysterectomy 1997, tonsillectomy 2001, deviated septum 2005, cataracts (both eyes) 2006
 
 

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