HealingWell
Search Close Search
☰

My pics of Ankylosing Spondilitis; how serious is it?

Support Forums
>
Rheumatoid Arthritis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/11/2012 4:27 PM (GMT 0)
Just got an X-Ray; doc has also recommended the gene test but haven't got that yet.

I'm attaching the pics; they show that the lumbar spine is fused. I asked the doc if this will proceed further up and fuse the entire spine but he told me to get the results of the blood test first.

I got injured in 1999; prolapsed intervertebral disc L 4-5, Schmorl's node. Had to take bed rest for a month, and the back pain and sciatica continued for at least two years. Even after that, I had problems, though the pain was much less. Now I'm 30 (male).

Right now I don't feel much pain, just that I don't like sitting on a chair. More than 15 minutes and it starts to feel weird, but I won't call it pain. I always slump in the chair, but with the disc injury I should keep the back straight. My back is stiff, I can't bend much, and in standing position, I can't even lift a straight leg half way up.

Here are the pics:
http://postimage.org/image/d87a9ocdp/
http://postimage.org/image/jboutl2nh/

Are there any medicines that can check AS from spreading to the upper vertebras?

Thanks.
Posted 2/11/2012 4:54 PM (GMT 0)
Hey brother how's it going. Why the jean testing. Sometimes those test are miss leading and don't show any signs u need a good doctor that doesn't send u to expensive test. U might want to get another opinion. Did u have back problems early in life. When u hit puberty. Disease starts in ur teens. U need to start treatment. Methotrexate works well injection not pills. Pills are junk don't care what any doc says injection once weekly. Enbrel, simponi, and prednisone are good ways to go but have side effects. Ur doctor wAsting time need to be proactive and make them listen.
Posted 2/12/2012 2:03 AM (GMT 0)
The HLA-B27 gene test is a regular thing, done to check for AS.

Like I said, I had a disc injury early on, when I was about 18 years old, so I may have attributed much of the pain to that and not to AS.

I'll start treatment after the blood test results.

What I'd like to know is whether in all people with AS, the spine eventually fuses, and whether there are ways to stop this midway.
Posted 2/14/2012 7:28 PM (GMT 0)
Bhargav,
Not everyone with AS have a spine that eventually fuses. HOWEVER, given your age and the fact that your spine is already partially fused, you are at much higher risk for having that happen. I didn't develop AS until I was much older. I am beginning to fuse in my SI joints.

The goal of treatment is to stop the inflammation. Inflammation leads to the excessive bone growth. and tendon calcificaton. There are several medications that are good at reducing inflammation. It is also very important since you have already partially fused to see a physical therapist to learn how to maintain proper posture. If you are going to fuse further it want to do it in a manner to maintain an upright appearance.

AND I agree, sitting in a chair is a PAIN! I haven't sat down to watch TV or a DVD in over 10 years. I stand up.
Posted 2/15/2012 1:48 PM (GMT 0)
Got the blood results.

HLA B27 is negative.

The other reports that are not good are:

CRP : 17.0 g/L (less than 10.0 is negative, more is positive)
ESR (Westergren Method) :
After one hour : 18 mm (normal range is 1 to 7 mm)
After two hours: 32 mm (normal range is 7 to 15 mm)

Haemoglobin : 11.3 gm% (normal range is 13.5 to 17.0 gm%)
RBC count : 3.68 mill./c.mm (normal range is 4.6 to 6.2 mill./c.mm)

Rest all, including Liver and Renal function test, are all OK.

The doc said its Spondyloarthropathy, and prescribed meds for 10 days: Sulfasalazine, along with Naproxen and Famotidine. Napro is an NSAID, and I don't have any real pain so I'm not going to take it, and Famotidine is an antacid so I'm not taking that either. But maybe Napro is also necessary along with Sulfasalazine? I forgot to tell him I'm taking Propranolol 40 mg daily; will have to call and ask, though a net search doesn't show any serious drug interactions.

Post Edited (Bhargav) : 2/15/2012 6:52:41 AM (GMT-7)

Posted 2/15/2012 5:18 PM (GMT 0)
BhargavJ, the Naproxen was likely prescribed for its anti-inflammatory qualities, and the Famotidine to prevent stomach irritation from the Naproxen. It may be an integral part of the therapy, so please check with your doctor before deciding not to take it. The NSAID's (Aspirin, Naproxin, etc.) decrease pain largely through decreasing inflammation.

Hope you feel much better soon.
Posted 2/16/2012 8:27 AM (GMT 0)
I just realized that, so I've started Naproxen as well, along with the antacid.
:)
Posted 2/27/2012 2:37 PM (GMT 0)
Met my doc yesterday. He asked me to continue taking the meds for another 15 days (Naproxen twice and Sulfasalazine 1000 mg once a day). I've been facing a bit of a gas problem, so I've switched from the Ranitidine 150mg to Omeprazole 20 mg. I take it with the Napro, is it necessary with Sulfasalazine as well?

Another thing I wanted to ask, what exactly is Sulfa going to do - is it going to break the fusion and return the spine to its previous state, or will it just stop more fusion from taking place?
Posted 2/27/2012 7:37 PM (GMT 0)
Suilfasalazine acts to control swelling and the pain of inflammation of AS. It will NOT break the fusing that has already occurred. It is thought that reducing the inflammation slows the rate of fusing.

May I ask the country in which you reside? The reason I ask, is that at your young age with the degree of fusion you already have - I am surprised that the doctor has not offered a more agressive treatment.
Posted 2/28/2012 12:54 AM (GMT 0)

Ides said...
May I ask the country in which you reside? The reason I ask, is that at your young age with the degree of fusion you already have - I am surprised that the doctor has not offered a more agressive treatment.


I live in India, and generally we have pretty good private healthcare. Maybe my doc will switch to the aggressive treatment later. I'm going to go in for a second opinion.

Ides said...
Suilfasalazine acts to control swelling and the pain of inflammation of AS.


I thought I didn't have AS, after the gene test came out negative. The doc called it Spondyloarthropathy, and wikipedia says AS is a type of spondylo. Its confusing.

Ever since I started taking the medicines, I've started being more erect. Earlier my usual tendency was to slump forward a bit and it was difficult to maintain an erect posture. I don't have any pain at present and didn't have much pain even before I started treatment.

Any idea when the fusing occurred? I had last visited the doc in 2007, when I had complained of pain in the entire back, especially in the middle back. I also had fever in the evenings in those days. An X-ray had shown nothing. Then since the past year or so, I've developed pain between the legs, the point where the two legs join with the body. I'd been trying to do pullups for more than a year, and I thought I'd strained myself, and that is why I visited the doc. I also have some kind of inflammation in the entire groin area, and I have difficulty holding back urine. I thought it was a hernia but the doc did an examination and asked me to cough and said it wasn't a hernia.
Posted 3/19/2012 2:11 PM (GMT 0)
Went to the doc again. He reduced the Sulfasalazine dose to half (500 mg) per day, and has stopped Naproxen 500 twice a day and instead started Meloxicam 15 mg once a day. Wikipedia says it has analgesic and fever-reducing effects, but I have neither pain nor fever. Do all these NSAIDS have the same purpose or specific ones?

I had thought I'd have to take the Sulfasalazine for years to stop further ankylosing. Ever since I started taking it, I have started sleeping more.

Post Edited (BhargavJ) : 3/19/2012 8:21:08 AM (GMT-6)

Posted 3/21/2012 7:13 PM (GMT 0)
Hello!
Spondyloarthropathy is a general term for a group of seronegative spondyloarthropathic diseaeses. A person can have Ankylosing Spondylitis and be HLA-B27 NEGATIVE. If a doctor says that is not possible, he/she is mistaken. Your doctor might be calling it spondyloarthropathy because he might think you have one of the others that can cause your fusing. You can look up these - reactive arthritis, undifferentiated spondyloarthropathy, enteropathic spondyloarthropathy, psoriatic spondyloarthropathy.

From USPubMed: "Meloxicam is used to relieve pain, tenderness, swelling, and stiffness caused by osteoarthritis (arthritis caused by a breakdown of the lining of the joints) and rheumatoid arthritis (arthritis caused by swelling of the lining of the joints). Meloxicam is also used to relieve the pain, tenderness,swelling, and stiffness caused by juvenile rheumatoid arthritis (a type of arthritis that affects children) in children 2 years of age and older. Meloxicam is in a class of medications called nonsteroidal anti-inflammatory drugs (NSAIDs). It works by stopping the body's production of a substance that causes pain, fever, and inflammation."

Meloxicam is a good inflammation reliever. Reducing your inflammation helps prevent further damage.

You are likely sleeping better because you are not waking as often because of discomfort while sleeping. I know that I sleep better if I have less achiness and stiffness.
Posted 3/22/2012 3:51 PM (GMT 0)
I know that AS is a part of the group Spondyloarthropathy, but I had thought I may have some other kind of Spondyloarthropathy since the doctor didn't label it AS after the blood test came out negative (but he didn't say its wasn't AS either). I looked up wikipedia and none of the other conditions has fusion of the spine, and I don't know of any other disease that causes fusion, so its AS.

I also have another thing, what are called floaters. Earlier I used to think its bacteria in the liquid on the surface of the eye that is getting magnified in some way! I don't have any major eye problem, though sometimes I do see little flashes at the corner of the eyes.

The doctor has reduced the dose of Sulfasalazine because the earlier high dose that he was giving me was a loading dose, now its maintenance. But I found this from the net, not through my doc; there's always such a rush I don't get to talk to him much.

As for the sleep, I've started sleeping in the afternoons, and then staying awake till late in the night. Yesterday I went to sleep at around 3:30 in the morning after sleeping a solid four hours in the afternoon.

Actually I don't have much pain; at least since the past year, I've noticed that the pain is pretty less, though there is stiffness. Earlier, it would take me about a full minute to turn to one side in bed, and after taking the painkiller, I would often toss around left and right without any reason. Now things are far more easier.

EDIT: Another blood test (last one was on the 14th of February).

ESR:
31 mm after 1 hour (normal is 1 to 7 mm; last time it was 18mm)
47 mm after 2 hours (normal is 7 to 15 mm; last time it was 32 mm)

CRP: 15.8 g/L (last time it was 17)

Haemoglobin: 14.1 (normal is 13.5 to 17.0; last time it was 11.3)
RBC Count: 5.56 (normal is 4.2 to 5.4; last time it was 3.68)
WBC Count: 9700 (normal is 4000 to 10,000; last time it was 6400)

Haven't shown the report to the doc yet, as he is down with fever!

Post Edited (BhargavJ) : 4/4/2012 10:43:52 AM (GMT-6)

Posted 5/8/2012 3:24 PM (GMT 0)
Met another doc today; he said my chest expansion is less than 2 cm. He also said vertebras become squared in AS and that my SI joint is also fused.

He's recommended seeing a rheumatologist, and checking for occult blood in stools.
Posted 5/22/2012 10:29 AM (GMT 0)
Hey fellas.
So I was diagnosed with AS about 6 years ago at 20 y/o. I'd always had trouble with my knees and some trouble with my back, but I had been a competitive runner and he docs I saw just kept pushing me off. I started with Mobic. It didn't really help. Then we added prednisone, big doses at first and that does seem to bring down the inflammation. Drops for the eyes. Steroids epidural. Physical therapy. Finally I saw a doc who put me on Fentanyl patches and they really do keep my pain level down without ANY noticeable sedation.

Until recently... over the last year or so, it seems like the Remicade isn't working as well as it used to, I'm afraid I'm getting tolerant to the patches (which we knew would happen, but still!) Ive been in unbearable pain. Even taking a day off work, which I never ever do! I find my ribs are really sore. My ankles. I mean essentially every joint in my body. The back and chest pain is unbelievable. I generally describe it like how one might feel if you had every joint smacked with a lead pipe. Not the initial sharp pain but like the next day, when he sharp pain is gone but its still aching and throbbing. Its like that. I talked to the doc and she started me on Cymbalta. I haven't had any really noticeable pain relief, but it's only been a week. I did have some strange side effects though. A few little tremors at first which went away, and um... some sexual side effects... kinds the opposite of what most antidepressants do. I wear scrubs to work and this has kind of gotten in the way so to speak. The onlything im really taking right now is Cymbalta, Prednisone, Mobic, Nuvigil, and the occasional Ambient. And of course the Remicade.

Has anyone else had luck with Cymbalta? Nausea? Or any of the hypersexual side effects? Most of the literature warns of desensitization. Kinds having the opposite problem. Let me know. Thanks.
Posted 6/3/2012 5:02 AM (GMT 0)
Cymbalta does a good job with my general malise and muscle ache of what we think is fibromialgia to to with my RA. I was already taking some for Bipolar depression, and it was increased for pain control.
First off, I'm a woman, so none of the same. ..um, "body issues", but I never did get the opposite problem either.
The trembling is something to really keep an eye on. Please look up *seritonin syndrome* online. If you were having the effects at first and now they're really gone read about what medications to avoid while taking Cymbalta.
Cymbalta did NOT eliminate my pain and I take a number of pain meds, but nothing kicked the general muscle ache like it.

I hope it works for you.

BTW I have also described the joint pain like the "echo" of pain. Like the moment after hitting your kunckles on a doorframe. Or 3 minutes after rapping your knee on a table corner. Not the moment of pain- the "echo" after it.
✚ New Topic ✚ Reply