#161901 - 11/18/09 08:19 PM
For the Newbies - Things That DON'T Work
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smcca945
Registered Visitor
Registered: 03/15/09
Posts: 98
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Just want to post this to save everyone time who is new with this disease. I wasted alot of time and effort listening to doctor's who have no idea what they are doing. Also, listen to your body with this disease. If something doesn't feel right, your body is telling you:
1. Tramidol (Ultram) - Pain Killer
Completely useless. Doctors will push this like crazy so they don't get in trouble but it will generally give you massive headaches and do nothing for pain related to AS.
2. Aspirin
If I can tell you how many times doctors told me just to take alot of aspirin, I would be rich. It doesn't work and if they tell you that, find a new doctor.
3. Remicade
In general, works for 1-2 years on most people. Take it when you first get this and you will feel great. Prepare for disappointment when it stops working. Do not let the doctors increase the infusion levels to dangerous amounts. Keep in mind doctors with in house infusion clinics make a fortune off it.
4. Enbrel, Humara, Simponi (TNF's)
Everyone responds differently so you need to try them all and see which one works for you. Don't change them too fast as your body has to adjust and you need to really watch what works. Rhemys generally don't have the time to gauge what works so they go completely off your feedback. Its really up to you to figure out what works best. Again, listen to your body.
5. Diets
Low salt and low starch diets do help but I don't have the discipline to stay on them. You deal with so much stress with this disease that I find my diet is the last thing I worry about. If you have the will power, do it!
6. Your Weight
I have found that your weight does have an effect on the flare up of the disease. Try to keep an acceptable weight if possible. It is hard as its difficult to workout without pain and some of the medications will add weight on some people. Try though.
7. Working Out
If you can do it, workout. If you do sit ups or push ups, etc it will help because you are stretching out your back and joints. Don't overdue it as you will be in more pain. I have found that working out has a great effect if you learn to balance it out.
8. Doctors
Do NOT compromise when looking for a Rhemy. I went to some that made me feel like crap and made me feel like the disease was all my fault. Find an understanding and caring Rhemy as you will go through periods of pain and depression. I had to go through 7 Rhemys until I found one I am comfortable with. You are going to live with this all your life and you need a Rhemy you trust. THIS IS ABSOLUTELY essential.
9. Pain Management
Rhemys generally have no idea how to deal with pain. If you are not getting anywhere, go to a pain doctor. Do not make anyone feel bad for taking pain medicine as THIS IS A DISEASE. Just because there are morons shooting up oxycodone, do not let any doctor deny you treatment. I struggled with this for years and felt like crap when I went to the pharmacy thinking they thought I was abusing the stuff because I was younger. Remember, some people with this don't look "bad". We just feel it. NEVER deny yourself treatment for pain - you will ruin your life.
10. Your Family
It is essential your family understand what you are going through. Show them the forums or bring them to the doctor with you so they understand your pain. It is such a deceptive disease that most people just can't understand why you are so miserable or cannot get out of bed one day.
11. Emotions
There was a guy on Youtube that posted a video that described that he was at his mother's funeral and didn't feel anything emotionally. This disease plays tricks on your emotions. You can be in the most horrible situation and not relate to it because you are in pain or your mind is off because of the disease. Sometimes, I have been in horrible situations and just felt nothing. The next day the emotion of it hit me. You are going to be out of sync with other people emotionally and your friends and family need to understand this. I don't know why it happens, but alot of people with this describe the fact that they are not emotionally in sync with other people.
12. Work
I cannot tell you how unbelievably hard it is to hold a full time job with this disease. Besides the emotional and physical strain of this disease, you have to deal with the stress of work and the physical demands of it. If you are in a physically intensive job such as construction, start to transition your career to something else. You wont last long term. There are days my mind just shuts off in meetings or I am depressed and it shows. Holding a job is very difficult with this condition.
13. Stress
Stress seems to amplify the effects of the inflammation. I have had iritis 6 times and I can attribute getting iritis to the stress of when I travelled internationally. Stress will worsen the disease. You either have to reduce the inflamation with pain killers or NSAIDS.
14. NSAIDS
They work for some people and not for others. Generally Rhemys will try these out first and some respond great and others have stomach and intestinal problems right away. Again, listen to your body. I cannot take NSAIDS due to the effects and have never been able to. Rhemys will push these hard.
15. General Medications
When you look at the big picture of what is available, there aren't many medications out there for AS. Generally, there are TNF's (IE. Enbrel, Remicade), NSAIDS (Celebrex, etc), pain medicine, and that's about it. Rhemys struggle with this because there just isn't much they can do. There is no magical formula and the medicines are pretty rigid where you cannot mix Enbrel with Remicade, etc.
16. Life in General
Life is a struggle with this condition. It is a terrible disease and it plays tricks on your mind, your body and emotional state. There are some days I am just blank. There are days my wife will talk to me and I hear her but my mind won't allow me to answer. You cannot "fake" it. I tried for years to pretend to be OK or happy and it just takes more energy from you. You have to have a supporting spouse and understanding people and friends. It is rare for me to have days where my mind is completely "free" where I am not distracted by pain or emotion of the condition. The days I have no pain or problems are rare and I LOVE having those days.
17. Depression
Although Rhemys generally NEVER tell you this as they are trained not to, alot of people with AS struggle with depression. Many people get depressed because their wife or husband left them or walked out because they couldn't understand what they were going through. Many people get depressed because no matter how hard you try to make someone understand how it feels, you can't. I equate it to seeing something so spectacular and trying to tell someone what you just saw and they cannot understand it or don't believe you.
Even doctors who have been treating AS for years don't understand how hard it is to function some days with this. I think most people get depressed simply because no one else can relate to the struggle they are going through on a daily basis. Remember, you look normal so why aren't you! Cancer patients loose hair and have visible symptoms but AS is completely hidden. Thus, people don't understand it.
As much as you try, people will never understand it. As much as I try to explain it to my wife or others, you will never be able to have someone understand what you go through. The nights you can't sleep and it feels like someone is holding a gun to your head and you are so exhausted but they won't let you lay down. AS is almost like torture sometimes.
This is a horrible condition and you have to learn to live with it. Listen to your body and not the doctors. Rhemys guess alot of the time.
I hope this information helps anyone who is visiting this forum. I can finally, after 20 years of having this disease finally put my experiences and emotions into words.
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#161906 - 11/18/09 08:59 PM
Re: For the Newbies - Things That DON'T Work
[Re: smcca945]
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jewelz
Registered Visitor
Registered: 09/27/07
Posts: 1182
Loc: Wisconsin
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smcca
Did you take methotrexate with your TNFs?
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#161907 - 11/18/09 09:30 PM
Re: For the Newbies - Things That DON'T Work
[Re: jewelz]
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drizzit
Registered Visitor
Registered: 02/18/06
Posts: 1310
Loc: Billings, Montana
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I understand the emotions and I agree with much of your post. Including the do not compromise on the Rheumy and the diet advice. Good advice indeed.
I do hope newbies also realize drugs and other options that won't work for one does work for another. That is the very nature of AS it seems
Hang in there smcaa
Edited by drizzit (11/18/09 09:33 PM)
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.
Oliver Wendell Holmes
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#161911 - 11/18/09 10:10 PM
Re: For the Newbies - Things That DON'T Work
[Re: smcca945]
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Spenser23
Registered Visitor
Registered: 11/28/01
Posts: 4245
Loc: New York, NY, USA
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Well, I'm glad you found what doesn't work for you, but I don't think you can make definitive statements about what works or does not work for others.
Your experience is your experience. None of the statements you made can be applied universally to everyone.
AS is a disease which comes in many forms and levels of severity. What works for you may not work at all for someone else. And what is useless in treating you, may be someone else's miracle drug.
For example, I've been on Remicade for over 7 years. And it is still working for me. I've also never had a doctor want to put me on Tramadol or tell me to just take aspirin.
That's not to say that you don't make some very good points. You do. But, there are two statements in your post with which I would quibble.
Listening to your body is all well and good, but your body did not spend any time at a university getting a medical degree. A doctor did. Sure, doctors can be wrong, and some rheumys are not up to speed with all the current knowledge about AS, but, to me, telling people to ignore doctors is somewhat irresponsible.
If you don't agree with a doctor's findings, go out and find another doctor. But if a half dozen doctors tell you the same thing, maybe, you should get off your position and give what they say at least SOME consideration, don't you think?
Suggesting that people ignore doctors, is also, in my opinion, horrible advice for newcomers. People adrift need help and guidance, not to be told to throw the lifeline back to the rescue boat, and jump in the water and swim on their own to shore. (Okay, that's not a great analogy, but it's the best one I can up with, this late at night.) Doctors may be flawed, and fallible, but ignoring them is NOT good advice.
Besides, merely listening to your body will only get you as far as knowing how you think you feel. From there, you're just guessing, and through trial and error, hoping you get better ... or can convince yourself that you ARE getting better.
That's no way to deal with a chronic degenerative disease, in my opinion.
Again, I apologize if this seems blunt, or harsh. This is not meant as a personal attack. I simply mildly disagree with a few of your points.
The other thing that jumped out at me from your post, was your asssessment of life and what it means to be living with AS. It strikes me as not something I wish to pass on to people, especially new people who come here at a very harrowing time in their lives, looking for comfort and support. Telling them that their life is going to be one of eternal struggle, while perhaps accurate for you, does make ASers seem a sad and pathetic lot, and that has not been my experience. I've come to know hundreds of people with AS over the years, and I have never met stronger or more resilient people in my entire life.
Now again, I'm not trying to start an argument, and I really do appreciate your candor in sharing your opinions, but Life with AS is not that way for me. I struggle at times, but I also laugh a lot, and I am probably one of the most severely affected ASers on this board.
Is Life with AS, difficult? Undoubtedly. But I do not believe that we are victims put on this path just to suffer, we are on this path for a reason. And the search for why we're going through life with AS, can lead to much hilarity and insight and all the other good stuff that comes along with a life well-lived. I mean, heck, if you just write off having AS as being dealt a losing hand, then that's what it will be for you.
Well, Anyway ...
Thanks for letting me get out my curmudgeonly ranting for the evening.
Spenser23
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#161912 - 11/18/09 10:32 PM
Re: For the Newbies - Things That DON'T Work
[Re: Spenser23]
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Threemules
Registered Visitor
Registered: 01/15/08
Posts: 93
Loc: Broome, Australia
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My Rheumy never tried Tramadol, Remicide or Enbrel and I've been told I shouldn't take asprin because it can compromise your kidneys and given I'm on a lot of meds anyway I shouldn't be adding to it.
I've been through all the NSAIDS and I think my Rheumy tried all of these first because they are (to my knowledge) the 'mildest' of the drugs. If they fail, then we step it up (which we have to plaquenil and MTX). I appreciate his concern in not burning up my insides with a harsh mix but trying to find the most effect/least harmful combo.
I agree with you Spencer 23 regarding the Docs, but I'm a big believer in western medicine. If my Rheumy told me to run around the block backwards with my nannas undies on my head, I'd give it a shot because he would know a hell of a lot more than I do.
That said I have friends that won't go to Doctors because they don't believe they can help, or go but don't listen because they're disillusioned with the system. A lot of people think they know more or the 'wiki' told them. I put my faith in the 10-15 years of education my specialist has. Each to their own I guess.
Spencer - I'm curious as to how you know your one of the most severly effected on this board?
SMCCA - You make some good points but you do make it sound like a death sentence!
I don't have AS, I have PsA and it pains me to tears on occasion but I have a good life, and although i'm sure it will get worse with age, I'm going to live it up while I can!
Newbies - Bad things happen to those that are strong enough to deal with it. Be strong, be brave, keep smiling (where possible) and remember you are never alone in your fight!!!
_________________________
"I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best." - Marilyn Monroe
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#161913 - 11/18/09 10:46 PM
Re: For the Newbies - Things That DON'T Work
[Re: Threemules]
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Spenser23
Registered Visitor
Registered: 11/28/01
Posts: 4245
Loc: New York, NY, USA
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Spencer - I'm curious as to how you know your one of the most severly effected on this board?
From reading the posts over the years, and meeting a number of fellow ASers in person. I was diagnosed in 1985, and have been totally fused both neck and spine since about 1989.
Spenser23
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#161926 - 11/19/09 04:38 AM
Re: For the Newbies - Things That DON'T Work
[Re: Threemules]
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Banana
Registered Visitor
Registered: 07/23/06
Posts: 3516
Loc: New York
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I'm with Spenser in that I have a lot of problems with many of your statements and the fact that you post them as definitive facts--when they are really your opinion.
Please Newbies read all the posts here and make you own decisions. Get a doctor you trust and believe them.
NSAIDS are the ONLY meds found so far that stop fusing so no need to be so dismissive. Many people have to try a couple to figure out which one works AND every year or two switch again.
The medications ARE NOT that rigid, that is your opinion. You failed to mention all the DMARDs like MTX, Arava, Imurin, Azulfadine. My doctor has been rotating me through many different variations and many worked for a time. One of my concerns is many people give up when they still have many options.
My doctor mentioned depression, many mention it. My doctor never offered the pain med you mentioned but vicodin first. How did you confirm that?
Diet helps a few, if it helped even close to a majority -doctors would promote it- believe me, they want us to heal.
I have traveled internationally many times before and after I was diagnosed and I have never gotten Iritis. I have been on the TNFs and never got sick even when in Brazil. I feel better when I travel, then comes jet lag. Yes, stress can do that, but everyone has different stressers. I would hate for someone to not go on vacation for fear of Iritis.
It would be great if all our families understood, but mine doesn't and never will. Me, realizing that and acknowledging it has been much better for me than trying and trying to get them to understand.
Anna
Edited by Banana (11/19/09 04:41 AM)
Edit Reason: typos
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Arava, once a day. Actema IV once a month, folic acid, prednisone 2mg daily, Cymbolta x1 daily, Celebrex, Calcium. Boniva IV every three months. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
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#161927 - 11/19/09 04:58 AM
Re: For the Newbies - Things That DON'T Work
[Re: Banana]
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astrologynut
Registered Visitor
Registered: 03/07/07
Posts: 866
Loc: United Kingdom
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I agree with some of the comments made by Spenser and by Banana but I also can relate to some of the things said by smcca. Maybe it would have been better to call the post "For the newbies - things that didn't work for me" ?
A few points regarding the actual content of the post. I would say that yes its important to listen to doctors. They have spent a great deal of time studying and learning their trade. They are the experts on medicine. What I think smcca is trying to point out (please do correct me if I am wrong here, smcca) is the point i have often argued, which is that while the doctors may be the experts on medicine, we are the experts on our own bodies. Doctors don't always know best.
Medicine, in my opinion, is sometimes more of an art than an actual hard and cold science. There are a lot of things even doctors don't understand not just about spondy-related conditions but medicine in general. I think its important to move away from the paradigm of doctors as Gods and sole arbitors of what is correct. I think we, as patients, need to take a more active role in our treatment and if we genuinely believe something is wrong, despite doctors objections, then keep pushing.
That said, there a few things I pointedly disagree with smcca on. In my case trammadol was not the first pain med offered to me or that was encouraged. That came much later and in my experience worked very well as my emergency med for a great number of years before it finally stopped helping.
The dmard issue is one that has already been pointed out so I won't restate it here.
Regarding depression, it is certainly something rheumatologists are aware of and look out for in my experience, but I don't think it is given the amount of consideration or attention I think it deserves. Same goes for things like body image issues etc. This is slowly changing I think.
I aren't so sure that I would agree that stress can cause an iritis flare per se but I definately agree that stress can exacerbate a general AS flare.
To the newbies my own piece of advice would be; read all you can on the condition and peoples different experiences. Pay attention to your body and symptoms. Prepare properly for doctors visits by making a list of issues and questions you want to discuss. Take a pen and paper so you can write down the answers. In the heat of the moment its easy to forget things. Most of all stick around and ask questions and share your own experiences.
Warm Regards
Oliver
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