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Joined: Mar 2002
Posts: 9,552 Likes: 10
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Joined: Mar 2002
Posts: 9,552 Likes: 10 |
Chris,
When I was on meds... flares would just pop up now and again... usually two bad ones a year, usually stress related. They would typically last for a month and I would have to back off of ALL exercise. Now on the diet, I can not recall last flare except when induced from eating wrong food and it lasts a few days at most and not as severe.
I have no experience with Enbrel/Remicade.... but I know from reading other posts, at times you may need to come off of the med due to flu/virus or the like to fight it off. So if you choose one of these meds, that is going to be a part of your life.
So if you want assurance you will never have a flare and be 100%, no one on this Earth can promise that... but can you live a fairly normal life.... possibly, that depends on how you respond to meds and how proactive you are in treating.
Like anyone new to chronic disease you have a lot of questions, I had them and asked my father who also has AS... but you will find that you will live one day at a time for the rest of your life.... worrying about the next week, or next year is not going to accomplish anything (all advice I received from my dad when I was scared of what would happen to me).
If you want AS to get in the way of your dreams it will.
Tim
ps - your posts tend to be long, you may want to offset your questions so they are more easily seen if you feel they are not being answered.
AS may win some battles, but I will win the war.
KONK - Keep ON Kicking
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Joined: Jan 2003
Posts: 98
Apprentice_AS_Kicker
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Apprentice_AS_Kicker
Joined: Jan 2003
Posts: 98 |
Hi Chris
I think everyone has done a good job on all the information they have gave you, and I am sorry you have this in your life now. I only wanted to say a couple of things. As far as your future plans they are right, your life is not over, you made need to make some modifacations, and then again maybe not. That is just something only time and god know. You are in fact very lucky this was dx so soon. I know they were alot of people talking about how well the Enbrel did for them and that is great, however I was on it for six months with no improvement at all. My doctor now has me on Humira and it has helped a good deal. So be sure if one of the Biologics does not work for you ask your doctor about the others. Also, I read where your liver enzymes were extremely high before, I wanted you to know that the drug Methotrexate is very very hard on your liver. I had to be taken completely of it because it was causing damage to my liver,so be sure to keep a check on that. It sounds like you are doing all you can to help yourself, but truth be told, nobody can tell you wether you can make it thru the acadamy without a flare. My opinion is that if you are going to have one, you will. The meds help and the diet of course, but I have had flares even on medications, as I am sure alot of people have. Some people have mild cases of AS and go on with a normal life, and some are not so lucky. Just keep doing what your doing, pray and keep in touch with everyone on this site, they are wonderful source of information and also wonderful, caring people. Good luck and I hope your pains eases soon.
Debbie
Debbie
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Joined: Jan 2006
Posts: 327
Fourth_Degree_AS_Kicker
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Fourth_Degree_AS_Kicker
Joined: Jan 2006
Posts: 327 |
Hi Chris,
Sounds like you may be gearing up to your AS diagnosis by coming in the back door. I also had no back, neck or shoulder pain for 8 months at the onset. Only severe knee pain. Then the others hit all of a sudden. That's when I got my true diagnosis. It was a journey.
I began my Remicade infusions about 3 weeks ago. So I've had 2 and will go for the third in another 3 weeks. I am just beginning to feel some intermittent relief from the pain. I took NSAID's for 2 months or so prior to the Remicade and found them to not help at all. I had no trouble making the decision to go with the biologic drug. I need to have some quality of life and that is my focus at this time.
Good luck to you and my best advice is to find the best rheumatologist possible.
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Joined: May 2005
Posts: 138
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: May 2005
Posts: 138 |
Chris,
I myself was diagnosed at 24 and like yourslef I had only had pain in my ankles and knees..However my mom was already diagnosed and had pain in the hips back ect..I knew it was just a matter of time. I am currently on Methotrexate and Piroxicam. It seems to be helping or I am in remission due to all the other medical problems!!! Just know that you can come her sor support and advice..we are a big family that is willing to help and share. Best of luck, your friend,
michelle
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Joined: Nov 2005
Posts: 19
New_Member
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New_Member
Joined: Nov 2005
Posts: 19 |
How did your Dr. appt. go at ucla today?
With every season comes new change.
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Joined: Dec 2005
Posts: 809
Ninja_AS_Kicker
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Ninja_AS_Kicker
Joined: Dec 2005
Posts: 809 |
Quote:
hi
I can vouch for the fact that NSAID's can wreck the gastro intestinal tract, if ur still wanting any more clarification on this.
Not only have i managed to burn holes in the lining of my stomach theres been mention of possible ulcers, and still suffering from a recent bout of gastritis (inflammation of the stomach) which the dr thought there was some possible internal bleeding, i now have a referral to a gastro specialist. In saying this tho i have been taking NSAID's for 11 years. And have been taking diclofenac (voltarol/volteren) for 2 years, these are the one that are really not good for the stomach long-term!
I dont mean to scare u, not saying it will happen its just what can happen to some people.
take care
heather
I can support Heather on these issues, because I had a problem as well. I suspect that it was my overuse of the ibuprofen that is available over the counter.
The thing with NSAIDS is that you must make sure that you do not have them unless you have eaten. Otherwise they will cause damage. I had the "top and tail" test and found out that the NSAIDS had caused inflammation in my stomach and I had an ulcer. (there was no sign of the usual ulcer culprit which is supposed to be the heliobacter pylorii) At that point I also had IBS and was told to have plenty of fibre. I have not been on any special diets but I do try to make sure that I have the psyllium husks.
Maggie
Today is the first day of the rest of my life
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