Medical Forum / Diseases and Disorders / Arthritis / December 2005
Ankylosing Spondylitis
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esusieq5@msn.com - 29 Nov 2005 06:22 GMT I haven't been on the newsgroup for quite awhile, but i'm back! I was diagnosed with RA several years ago, but was just diagnosed with Ankylosing Spondylitis. My symptoms, the x-rays, and the the test for the gene all turned out pointing to this. I don't know real much about this, so any info would be appreciated. I am currently on MTX, Enbrel and prednisone. but we are trying to taper off the prednisone. I am in so much pain, it is just getting worse and worse. I can barely make it thru work anymore. Thanks in advance! Sue
Charrlygrl1 - 29 Nov 2005 16:44 GMT Sue, It sucks doesn't it? I am 38 and have AS along with fibro. I am currently on Enbrel, MTX, sulfasalazine, prednisone and a few others for pain and sleep. I have a TENS machine, which helps. Also, talking to others who have it helps. Try www.spondylitis.org, the message boards. For men, AS mostly affects the back, according to all that I have read. For women, (in my case, it's true), the peripheral joints are often the most troublesome. For this reason, women often go a long time before being diagnosed, or get misdiagnosed. In fact, my dxs went as follows: erosive poly arthritis, spondyloarthopathy and then finally to AS. RA was a factor in there for a while as well. I also am having a hard time working...at least on some days. Enbrel has not been the miracle for me that it has been for some others...however, I would hate to go without it for long. How long have you been on the Enbrel and the MTX? I am sorry for what you are going through, Sue. Feel free to email me anytime, if there's anything I could help you with, or just to talk! Good luck to you, Charlene
esusieq5@msn.com - 01 Dec 2005 06:27 GMT Hi Charlene. Thanks for your reply. I have been on MTX for about 3 1/2 years. I was also on Plaquinel and sulfasalazine awhile back. I have been on the Enbrel for about 3 months now. I have terrible rib pain too. The Enbrel doesn't help my back or ribs at all. it seemed to help my other joints , (feet, knees,hands, wrists, elbows) but the pain gets bad again when i try to get off the prednisone. The doctor said if the Enbrel doesn't help, we can try Humira or the other one. i forgot the name of it. the infusion. Oh ya, and my neck and shoulders bother me alot too. I was first diagnosed with RA. So, i go back to my Rheumatologist in the beginning of January, so i will see what is next on the agenda. How long have you had your diagnosis? Also, what kind of work do you do? Thanks for your help too. Sue
Squirrely - 30 Nov 2005 05:42 GMT Sue so glad to see you back. I am sorry you are in so much pain though. I wish firechief was back on his puter he would be so much help. But there are others here that will be of help to you also.
You take care. You have been missed while you were gone.
Charlene and Sue,
I am so proud of you both that you can even be still working. That says something about you both. You are both amazing.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
>I haven't been on the newsgroup for quite awhile, but i'm back! I was > diagnosed with RA several years ago, but was just diagnosed with [quoted text clipped - 4 lines] > so much pain, it is just getting worse and worse. I can barely make it > thru work anymore. Thanks in advance! Sue esusieq5@msn.com - 01 Dec 2005 06:10 GMT Jo.. It is nice to talk to you again. How have you been? I know you were going through some very rough times awhile back. I hope you are feeling somewhat better now? I hope you had a nice Thanksgiving too. Take care, Sue
Squirrely - 01 Dec 2005 08:43 GMT sorry to say I am still not doing good. I was for about 2 weeks and now have this stupid virus back again.
This job might not hold up either for Jim, so not much is looking up right now.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Jo.. It is nice to talk to you again. How have you been? I know you > were going through some very rough times awhile back. I hope you are > feeling somewhat better now? I hope you had a nice Thanksgiving too. > Take care, Sue esusieq5@msn.com - 06 Dec 2005 05:46 GMT Hi Jo. I'm so sorry that you have the virus again! Do they know what it is exactly? You poor thing! I just hope you are feeling better soon. You have to get better so you can enjoy the Holidays! Sorry to hear about the job situation with your hubby! Hope everything turns out! Hope to hear from you soon. Sue
Squirrely - 06 Dec 2005 23:13 GMT Nope don't know what it is exactly. It is the one that is going around and hitting people for like 2-3 months. I guess I was just lucky to get it back again. I guess it liked its home to well. ;-)
With the chronic issues I deal with I am open for things like this. So it is the same ole stuff all the time. Get Virus, it activates the rest.
I hope you have great holidays. Wishing you the best for the coming year.
I know you are having problems too with pain and such. You take care. I hope things get better for you.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Hi Jo. I'm so sorry that you have the virus again! Do they know what it > is exactly? You poor thing! I just hope you are feeling better soon. > You have to get better so you can enjoy the Holidays! Sorry to hear > about the job situation with your hubby! Hope everything turns out! > Hope to hear from you soon. Sue esusieq5@msn.com - 06 Dec 2005 05:46 GMT Hi Jo. I'm so sorry that you have the virus again! Do they know what it is exactly? You poor thing! I just hope you are feeling better soon. You have to get better so you can enjoy the Holidays! Sorry to hear about the job situation with your hubby! Hope everything turns out! Hope to hear from you soon. Sue
esusieq5@msn.com - 01 Dec 2005 06:10 GMT Jo.. It is nice to talk to you again. How have you been? I know you were going through some very rough times awhile back. I hope you are feeling somewhat better now? I hope you had a nice Thanksgiving too. Take care, Sue
Charrlygrl1 - 01 Dec 2005 17:35 GMT Sue, I have had my diagnosis for about 6 months now, but this has been going on for nearly three years. I was at the spondylitis site and read some of the horror stories regarding years to diagnosis. Some folks have gone over 20 years before finally having an answer. I work in the service department of a large GM dealership. I'm the one you would yell at when your new $50,000 vehicle breaks down, lol! It is stressful work, but it has provided me with good medical insurance, a paycheck (albeit not a great one), and a some really good friends. I'm not sure how long I will be able to keep working, but I want to for as long as possible. I've worked since I was 16 years old, and I have no idea what I would do round the house all day long-other than going completely batty. I know that with AS keeping moving is so important, which is rather twisted, since usually, you don't want to move at all. What kind of work do you do? I hope that you're feeling ok. Squirrely, thanks for your kind words. I sure do wish that things were going a bit better for you and your family. What the heck is that nasty virus that has been plaguing you for so long?? You, obviously, are a fighter as well. Charlene
esusieq5@msn.com - 05 Dec 2005 05:10 GMT Hi Charlene. It was nice to hear from you again.I remembered the name of the other med i may have to try. It is Remicade. I work at a school in food service, so am on my feet all day.About 6 1/2 hours daily. It is getting almost unbearable. I was off the prednisone for a few days, but couldn't take it, so had to get back on today. I just hurt so bad all over. Even my hands are so stiff and sore. So hopefully i will get some relief soon from the prednisone. I hate to complain, but thank goodness we can come here and complain to each other, right? LOL Sue
Squirrely - 06 Dec 2005 23:52 GMT Charlene,
Thanks for posting that url for AS. I printed out alot of stuff from that site to read and also for Denise also. Her friend Toni, just recently found out she has AS.
I was also interested in one of your other posts you metioned costochrondritis and AS. If you find any info on that, could I get you to pass it on to me. I have costo, and I also think I have AS but the test said not. So am researching on my own. It would not be the first time a dr missed something.
Thanks also to you for your kind words. I am still sick, but I think it is the addisons stuff making it worse than it really is. I still can not get hydrated enough to feel better. It is all that sweating I am doing that keeps me dehydrated. I was just surfing a great site for addisons too. Learned lots from it.
I don't know what that nasty virus is, but I sure hope this is the last time I get it back. Sinuses are a mess and so are lungs.
Yeah I am a fighter. I sometimes wonder why though. ;-)
I don't know how you and all the others that have AS do it. I am still amazed at firechief and him square dancing. I might get to see him on the 23rd. That would be nice.
You take care and know I am thinking of you and praying for you.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> Sue, > I have had my diagnosis for about 6 months now, but this has been going [quoted text clipped - 17 lines] > fighter as well. > Charlene hongyu - 02 Dec 2005 00:38 GMT Dear Sue
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Best regards Hong Yu
Charrlygrl1 - 07 Dec 2005 16:38 GMT SqJo, I'm sorry about Toni's diagnosis. AS just sucks. I've been reading the message boards at the spondylitis site...there is an horrific one by a guy who had numerous back fusions and was recently rear ended. The fusions all snapped. He had a bracelet and a card in his wallet saying that he had AS. Problem was none of the EMTs knew what it was. He went through hell-it truly was one of the most horrendous things I've ever read. SqJo, if you go to spondylitis.org, then go to the general message boards, then click on page two, there is a thread labeled CHEST PAIN. Within it, many people are talking about how it affects them, and one of the posts is from the moderator with a link to the page. I can't figure out to how to post it here, sorry. And Jo, there are so many docs out there who think that AS only affects men....it is one of the main reasons that women take so long in getting a correct diagnosis. The whole thing sucks. There are women on that board that have gone, no lie, over 20 years before getting diagnosis and starting treatment. It took me 2.5 years and 3 rheumatologists before we got to the bottom of things. The good part is that the tnf inhibitors (Enbrel, Remicade, Humira) can really stop it from progressing. This does not mean that everything feels great, cuz it certainly doesn't, but hopefully the fusion process is slowing, if not halted. I wish I could do something to help you. You are going through such a hard time, I really feel for you, Charlene
Charrlygrl1 - 07 Dec 2005 16:40 GMT oooh! Try this:
http://www.spondylitis.org/about/complications.aspx
Squirrely - 08 Dec 2005 07:42 GMT Charlene,
Thanks for this info. I appreciate it. Moreso now than ever. I am in so much pain tonight. It is raining which of course brought the ants back in the house. So Jim and I had to empty the kitchen once again. We had so much boxed, canned, and bag stuff out there it took us 2 hours to get it all moved out of the kitchen. Along of course with the dishes. I hate ants. So I am flaring majorily. I don't think there is a spot that doesn't hurt. It is really bad in the back, chest, knees, and feet. So I might not even be able to get out of bed in the morning. ;-(
I will go look at that thread when I can. I hope tomorrow but I won't promise anything right now.
That is horrible about that guy. Oh I had pain just reading about it. That would be like a broken back I would think.
Yeah I know. I did enjoy reading on the message board about how others have AS and it didn't show up in blood or xrays. Because I seriously believe that I do have AS. I think at one point it did show either in my cervical or my thoracic that I was starting to fuse. I will have to look it up again when I can. Because now I am curious.
The only problem would be I dont know if I could take one of the tnf drugs. For one with me being allergic to so many meds and then me having chronic infections.
Charlene. You do enough just offering me support and posting informative info like you did. That is a big help. There are lots of people going thru hard times. So I want to be there for them if I can. It keeps me going if I think I might be helping at least one person.
Thanks again for all the help you have given me with this info. I am finding out with many of my illnesses that I have to be my own dr. and get the info for myself. Then I will be prepared if I have to go to the drs and I can give her this info. She is pretty good about this stuff. I am going to hit her up with the addisons stuff when I have to go in again. I haven't been seeing a dr since July. I did have to go to urgent care and to the hospital one time. But not to my regular dr. I can't afford to go at all really. But you do what you have to do. So I figure there will be another time I will have to go in, so I will hit her up with some of this info then.
I feel for all that are suffering thru any chronic problem right now. It is bad at this time of year because of the weather making things worse.
 Signature Love and hugs to all Good thoughts coming your way too.
Squirrely Jo
> SqJo, > I'm sorry about Toni's diagnosis. AS just sucks. [quoted text clipped - 22 lines] > hard time, I really feel for you, > Charlene
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