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    Old 07-20-2005, 11:37 PM   #1
    candibar
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    Question Ankylosing Spondylitis questions

    Hi.

    How does a person with AS know if he/she should throw in the towel and apply for disability or keep dragging a miserable, drugged body to work? Can a person survive on disability? The only thing getting me out of bed is fear of being totally destitute.

    Has anyone with AS had a flare in the neck, shoulder and upper rib cage? When I bend forward, it feels like someone trying to rip my head off my neck. The pain is excruciating. My Rheumy just tells me to keep taking the MTX, that it takes time for it to kick in. This bout started 3 days ago. The weird thing I don't get is that this disease seems to travel. My hips are pretty fine, but before the neck and shoulder flare, my hips were severely flared.

    Any advice/experience would be appreciated.

    ~ Candibar
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    Old 07-21-2005, 11:53 AM   #2
    countrygal
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    Re: Ankylosing Spondylitis questions

    I hear what you are saying! It seems like it attacks certain parts of the body for a while and just when you seem to find relief here it comes again some where else. And even times, all over.

    I take mxt also, inj.wkly and have since april 14th. But i have found NO relief at all from it. I am so ready to try something else. I took plaquenil before that and had really good results AS wise but lost vision in my R eye. Some has come back. And we are waiting on the rest of it. How long have you been on it and how much? have you had any luck with it at all?

    As far as the SSD thing, have you talked to your Dr about it and how he feels? Do you have any other Dxs? It has been a long drug out battle for alot of poeple trying to get it. I dont know if AS is listed on the Dxs required. Have went to the ssd site to see or talked to SS?

    Sorry i couldnt be much help. And that i seemed to have asked you more ?s than i could answer. I havent met many with AS to be able to discuss and talk about all that goes on. Hope someone else can help answer the ssd ?s.

     
    Old 07-21-2005, 09:27 PM   #3
    candibar
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    Re: Ankylosing Spondylitis questions

    Thanks. I am taking 15 mg mtx wkly. What are you injecting? Enbrel? I have not contacted SS or SSD; I'm still thinking. I have been in complete menopause for years. The mtx caused me to have a complete cycle, which was weird (per my Rheumy). I wish there was a cure for this. I keep wondering why folks in other countries don't have this. Is it our food supply?
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    Old 07-22-2005, 08:53 AM   #4
    countrygal
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    Re: Ankylosing Spondylitis questions

    Hi candibar, I take Mxt .5 inj wkly and of course folic acid. I have been checking on the enbrel and humara. It all has nasty side effects, but so does the AS. I think i am leaning toward the enbrel. I had a hysterectomy years ago (i was still a pup)lol. But i can see how mxt can cause any kind of problems.
    It takes along time to get ssd started for most, so you might want to start that. Even if at a later time you wont need it now. But if you do then it will already be started.
    A good ?, i havent thought about that. But i did wonder why i got it when it supposingly a male disease.
    How long have you had this and did it take along time for you to get Dxd? Do you have other related problems too?

     
    Old 07-22-2005, 11:21 PM   #5
    candibar
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    Unhappy Re: Ankylosing Spondylitis questions

    It took about 5 yrs to get dxd. I started having symptoms @ 18 yrs - many moons ago - but no one believed me. I got a big clue when a coworker broke his hip crossing an icy street, recovered and quit taking pain meds. I wondered why I couldn't go a day w/o pain meds. Now I know of course. I got my 1st cortisone shot @ age 19 I think. I was working out in a health spa and overdid the leg presses. I had to quit working out and have fought and lost the weight battle ever since. Now I hurt too much to work out. I have a story: I decided about 18 mos ago before I got real bad like now that I would join the city health club and go for the burn and get this fat off. I went to the orientation and tried out every machine (was that painful!). I then contacted my Rheumy and asked him which machines would be safe for my condition. he told me none of them! Then I asked him about free weights - he nixed that too. I said "What am I supposed to do about these jiggly arms? You can't tighten them w/o weights". He told me I could swim or walk. Unfortunately, I am allergic to chlorine. I was shocked. I had never heard of a dr. telling you that you cannot work out! I still have a membership with YMCA sitting out there waiting for (what?! me to get better?) I don't know what. Hurts to walk, can't take chlorine, can't do machines and weights. Anyhow, that is the least of my worries right now. I have BIG bruises right now I am concerned about. Mtx can cause that. I also feel achy and terrible unless I take ibuprofen. Guess i have rambled on enough. Oh yes, I also have reynauds and irritable bowel. I have also had Iritis. I used to have type II diabetes but got rid of that. My aunt died of crohn's. there is a link between AS and crohn's from what I have seen out there.
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    Last edited by candibar; 07-22-2005 at 11:29 PM.

     
    Old 07-27-2005, 06:16 PM   #6
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    Re: Ankylosing Spondylitis questions

    I don't have AS, I have psoriatic arthritis, but I've been on the methotrexate, and prednisone, and sulfasalizine, and, remicade, and you name it. One thing that changed my life was Enbrel. It works so well for me. I have been able to stop the prednisone completely for a couple of years now,( I've been on the Enbrel for about 3.) Enbrel is the best thing that ever happened to me, fewer flareups, less pain and stiffness, and I found it to have fewer side effects than most of the meds I've been on. I am now maintained on plaquenil, clinoril, and enbrel. I do get infections easily, but I get them treated promptly and haven't had any serious trouble. The only other side effect for me was injection site reaction which went away within a few weeks of using the medication. I have an aunt with AS who is also unsure about whether or not to try Enbrel and I told her to go for it. I hope this will reassure people out there who are afraid to give it a shot. It has been a lifesaver.

     
    Old 09-25-2005, 04:23 AM   #7
    Lady Olivia
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    Re: Ankylosing Spondylitis questions

    Hi Candibar

    It is such a relief for me that I have found this website and you. I started to think I was the only person with this condition and noone seemed to understand. I have spondyloarthropathy that is now AS in the spine and neck and I have just started taking MthX about eight weeks ago with the folic acid. It took me five years to decide to take such a drug that freaked me out with just the side affects that you get told about in the leaflet that comes with the pills that I didnt take it. If i had of the AS may not of have happened. I was on celebrex but only taking it when i needed it because i am not a good person for taking pills as I like to keep my liver and kidneys working well. It was being told that i had to take it or end up in a wheel chair in five years which would mean i would be 45 so for me i decided to take it and so far no side affects (touch wood). My neck hurt all the time and upper spine and around my rib cage until about two weeks ago when the methx kicked in and now it just plain crunches at me. For me the pain is in my legs. When my hips swell my leg can actually lenghten about two inches and this is agony. The only thing that relieves it for me is trying to keep the leg straight and heavy doses of paracetamol. I have one knee that is massive all the time they call it a bursar or something like that and my other knee is tiny. I tried the natural way with Glaucosamine and that actually kept the inflammation down on the outside but did nothing on the inside hence the AS and fusing of my thoracic spine. I never thought anything could be as hard as this to cope with and the choices you have to make. I was misdiagnosed for ten years and denial for five but forced to accept it now. Gosh I'm writing a book ... It is just comforting to talk to someone that understands about AS. I can reach my knees just when i bend over to touch my toes and I make my son touch his toes everyday to ensure that he isnt affected. We know that he carries the gene HLA B27 like me and the guilt I have when I look at him is immense as I wouldnt wish the pain and cost of this condition on anyone. I get really depressed about this condition.. Do you get down about it? I work full time and my husband does the house work which is wonderful and the kids pitch in and my work is really understanding if I get bad they send me home. But I still get really depressed about it...I better stop writing or you will be here all night.
    Talk again soon
    Olivia

    Last edited by Lady Olivia; 09-25-2005 at 04:26 AM.

     
    Old 10-15-2005, 04:55 PM   #8
    hitomi
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    Re: Ankylosing Spondylitis questions

    Hi,

    My husband has AS. He is always stiff in the mornings and has to do some stretching exercises to be able to move around.

    I decided to try something on him as an experiment. I rubbed "Castor Oil" on his neck, shoulders, spine, chest, elbows, knees and ankles.

    Yes, it is greasy but he wore his flannel PJ's to bed and by the next morning he felt a surprsing improvement on how he felt.

    I hope this helps relieve some of the stiffness and pain you suffer on a daily basis.

    Hitomi

     
    Old 10-16-2005, 07:30 AM   #9
    jimmyhonda
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    Re: Ankylosing Spondylitis questions

    I also have AS - well, I was diagnosed with this illness when I was a teenager - inherited from my father who passed away when I was about 5 years old. If I could remember, he had hunch back, and his neck was so stiff, he barely able to look up at us.

    As a teenager, I didn't know what AS is about - the doctor didn't explain it clearly -maybe he tried, but he sure didn't scare the hell out of me like these mean, nasty dentists I used to see.

    So, I grew up into believing that the pain/stiffness will go away the next morning when I take the medication... and nothing can do about the stiffness. The doctor even told me not to take too much medication as it may cause ulcers in your stomach - so I took his advice and sometimes skip medication.

    Now, at the age of 28 - I really regret for what I have done to my health... I feel like I am resembling more like my father. My neck is so stiff, it could only swing about 5 degrees. Cartilage is loss in my right leg - experiencing constant muscle spasms.

    Life seems so depressing, that I spend the afternoon sleeping. How could my condition be alot worster than my older brother and sister who also has AS. Waiting to see the rhem at the hospital in Novemeber is such a looooong wait, and sheer tortue.

    I wanted to stay positive - but I am just sooo worry about i might ended up being poor later on in life.

     
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