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introduction to me
#194855 01/16/11 07:25 AM
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stevep Offline OP
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I have been here a few times to browse around but never posted at least not that I can remember

My history...I noticed that it hurt to run and exercise and sleep in my late 20's. My roommate complained I slept on the wall(meaning slept sitting up). I got married at 33. then a few years later during my wife's blood work to test if she was truly pregnant with our first daughter I complained to our doctor my lower back hurting all the time, night sweats and fevers, etc. By the grace of God she happened to intern for specialist at Vanderbilt in AS. She knew the signs and ordered a DNA test for HLAB27. She called that night, scared the crap out of me and told me to come the next day.

She referred me to her mentor and said if she was a betting woman I had AS. So he was not on our insurance but she ordered all the x-rays and tests and had them sent to him. I paid for the visit out of my pocket ($300) after an hour and half of measurements, he confirmed and told me what I was up against. He told of I did not change jobs (a recording engineer in Nashville, which spends 12+ hours in a chair behind a mixing console) to expect myself in a wheel chair in 5 years.

I started prednisone and really began to feel wonderful. I was on it for 6 months then tapered off. Of everything I have ever took, it is the ticket back to normal. Best medicene on the planet.

She started me on methotrexate pills and went thru the all the nsaids. Lodine, voltaren, indomethacene, Diflunisal, Piroxicam, Sulfasalazine....all moderately helped but nothing like prednisone.

My back got worse, I quickly saw that being in a chair all day was not going to work. So I moved my family to be closer to my wifes family, left behind everything I knew, including career. I found a job in computer networking. I did alot of walking and lost weight and began Celebrex. When the concern for Celebrex and the others in the same class were called into question by the FDA I started Enbrel. Meanwhile, my lower back got worse my Sac joints got a lot worse, my left knee started to fill with fluid. My Dr in atlanta while had great bedside manner and very nice, his interest doing any kind of charting of progress and research was nothing. I wanted to know is AS stopping in me or is it getting worse. He had no interest in xrays or measurements.

So again I paid out of my own pocket and drove to TN to see my original doctor. He was just I remembered, very very thorough and recommended a doctor friend of his from Harvard in Alanta. Dr. Gary Botstein. I love him.

I stopped taking Enbrel because of migraines. I would take the shot and then 2 days later I would have these horrible migraines to the point of nausea. I wanted to crawl into a cool dark place with no sound til it passed. I never had a migraine in my 48 years til then. I did not really correlate the two til after about 2 months of documenting it.

I switched to Humira and after 3 months nothing. I began Remicade in November in 2009, by January I was almost new again
HUGE HUGE change and relief. After almost 18 months I developed allergic reactions to the intake of it. Instant stomach bug symptoms. Loss of blood pressure, claminess, nauseated, shaking.
So we stopped that and tried Simponi.....nothing. Then we tried the desensatation process with Remicade from a cancer Doctor. That worked no reaction but Remicade needs to build up and
so I need some more now. I also take methotrexate shots it seems to work better than the pills.

Today I am perhaps the worse I have ever been. My sac joint in the left side is killing me, causing a loss of strength in the left leg and my neck while I am not sure if it is AS is locked up.

Also in the last year my feet have become numb and cold all the time. I have been the neurologist and done all the nerve studies and all seems well. Even had a MRI. He is at loss. Meanwhile I have also been to a kidney doctor because of high amount of white blood cells in my urine. Over thanksgiving bloody mucus was in my urine. While cleared up for now everyone is concerned. I am waiting on the results to the ultrasound of my kidneys. Everyones guess it is high doses of Naproxen I take to relieve the pain, nearly 8 pills a day, is messing with the kidneys. We will see.

I was 35 when I discovered AS and now I am 50. I still have night sweats and fevers bouts. I am told AS does t course then stops. Mine hasn't. Genetically my brother does not have HLA-B27 nor his kids. My father has a bad back but has always attributed it to being knocked off an oil platform 15 feet above the ground, he is 84 now and says what good would it do now to know if I have it? Therefore no test. After all he is fighting prostrate cancer effects.

This is me. I am half the man I used to be as far as flexibility. I have lost nearly 2 inches of height thru it all, sleep is at best 5 hours. Doc says my spine is 60% fused. Bamboo spine. I move around like my father yet I am 35 years younger.


Re: introduction to me
stevep #194871 01/16/11 03:09 PM
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sequoia
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welcome steve. i think the most difficult part of AS is learning how to live our lives with limits. we can fight it constantly, and get depressed, or learn to adapt. we have the dx, you are tired of the pain and suffering. but you have to try to find some hope about some aspect of your life being ok, or better. i think that is the true struggle i read about here. we all have the pain and take different measures to deal with it.

i have lost 3 inches of height. losing that didn't make you half a man. your heart makes you who you are. your caring about your family is wonderful. i agree with your dad, it doesn't really matter about his test.

change is difficult, but we have to learn to adapt.

prayers and peace and welcome here, we understand, sequoia

Re: introduction to me
#194879 01/16/11 04:37 PM
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Welcome Steve!
Thanks for taking the time to write your story. Finding what works for most of us is certainly a trial and error process. After some setbacks and many changes I also did well on Remicade -- for a while -- until it failed. I know how disappointing that can be.

I want to ask, when you tried Humira did you also take methotrexate with it? Because it made a difference for me and some others. There is one school of thought that says that MTX helps keep you from developing antibodies to the biologics and even on its own it helps those like me who have problems in the peripheral joints (such as the hips). But many people who try Humira do it without taking MTX, so if that was your case, you could go back to it and try again with the MTX.

One thing I am doing now is increasing my NSAID dosage. I am actually on Celebrex and did have a serious event a few months ago with acute chest pains. But the doctors ruled out any heart involvement -- it was more like acute costochondritis arising from my inflammation, not the drug. My new rheumy believes (and I think she is right) that my NSAID dose has been too low since I still have a lot of inflammation even while taking biologics, etc. Keep trying.

If you


DXed with AS almost 40 years ago
Re: introduction to me
stevep #194881 01/16/11 05:54 PM
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WELCOME, stevep:

The "best" doctors do not know enough about this disease to help You avoid the damage, but taking prednisone is not treatment but it is mis-treatment--same with NSAIDs.

I have lost six inches in height and had severe kyphosis and undergone two surgeries--the osteotomy lasted 20 hours.

Too late, I learned about diet and antibiotics, but I still need them to save my eyesight because otherwise I would still get severe iritis, kidney stones, and end up with CES and perhaps even amyloidosis or kidney problems.

AS is a calcium-wasting disease, melting our bones away and steroids only hasten this. NSAIDs allow us to remain unaware of the damage still progressing and also be oblivious to the food connection, while causing enough intestinal damage to increase disease activity. The biologic drugs are very clever, but they might not do enough to help avoid damage and they certainly do nothing to treat the cause of AS.

Ebringer says we might be able to turn the clock back TWO YEARS with strict diet (and I would add appropriate antibiotics), but by the time I met him I needed TWENTY years.

Better late than never: Before I began diet plus antibiotics I had knee edema, iritis and kidney stones about three times yearly, plantar fasciitis to the point I could not walk, severe costochondritis and could not sneeze without rolling into a ball first and bracing myself, TMJ, adhesive capsulitis, hip bursitis, and "legions" of other AS sequelae.

After strict NSD, I have had none of the above and have avoided nearly all of them during previous twelve years. Regret the diet does nothing at all for the damage (and it may have made things worse--I was feeling so good finally that I overdid it and broke my back!).

Thank You, for Your introduction, now You have mine. Nice to meet You.

HEALTH,
John





Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS

Re: introduction to me
Tacitus #194913 01/17/11 01:48 AM
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Hi Steve - welcome. I'm sorry to read the story of your long struggle. I hope you can find some relief from the suffering AS is causing you, and I also hope you find some support and camaraderie here on the forums!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: introduction to me
JenInCincy #194921 01/17/11 03:26 AM
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Hi Steve,

Glad you decided to join us and share your story. I wish I had some miracle cure, but I am kind of in your shoes. I have had some things that worked, then stopped working. Right now I am about to begin Humira (I hope) for the first time and it will be the first biologic. I am 36 and have been battling this since I was 19. Over the last two years, everything my rheummy has tried has failed to keep my pain at bay. I am now looking at two bulging discs in my neck and I have ridging in my lowest two vertebrae. Not sure what is gonna happen next. BUT, one thing I know, is that I have found friendship and hope here. There are people who understand and will let you vent and "cry on their shoulder" if you need to.

It gives me hope that at least people out there really do care when I am in pain, frustrated that I can't be who I used to be, and really understand my pain - inside and out.

I pray you find relief from your pain and hope in your heart.

Blessings,
Sherre (Twyn)

Re: introduction to me
Twynducky2 #194927 01/17/11 04:31 AM
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Hi Steve,

Glad you found this place. Lots or nice people here.

Welcome,
Jewelz


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