You asked about Orencia on another post. Please don't leave. Here is a
post for you about Orencia.
It works fabulous. It takes awhile. Or at least to me, 2 and a half months
and that seemed like forever. To be honest, those couple months were
hard. I had felt so good on Humira forever, I forgot how bad it was in the
beginning.
Had no side effects at all with it. You get 3 IV;s, 2 weeks apart and then
its every 4 weeks.
I had to get back on pred till it started to work but I am off pred and am
only on MTX now. Heaven.
Love it. Half hour IV every four weeks. Not like Remicade which was a
couple hours.
Love it. Good luck. Bee
Bee - Thanks for the PM and for posting this. Quick question if you don't mind. Why did you switch from Humira to Orencia. Did the effects of Humira start to wane, or were you beginning to develope side effects from the Humira?
I am currently on Remicade, I took it for over a year, went off for 6 months while I was tried on Rituxan, then back to Remicade, but am having side effects. If I could stay on Remicade I would, because it has helped more than anything else I've tried. Enbrel worked less than a year, Humira did nothing and Rituxan did nothing.
I'm so glad to hear Orencia is working for you! I'm really hoping to hear some more positive Orencia stories, as I'm getting towards the end of the line as far as biologics, and I'm sure my Rheumatologist is going to push for it on my June 26th. appt.
Thanks for the info!
BTW...I'm currently on Remicade 600mg every 5 weeks, Medrol 8 mg/day, Arava 100 mg/week, Lodine 600mgXL/twice daily, Cymbalta 60 mg/day, Ultram as needed, and medication for HTN, Hypothyroidism, and GERD.
Gale
Gale,
Hi Anna!
How have you been? If you'd do anything to 'play with the kids and work" you might consider AP - I just boogie boarded at the ocean yesterday and was exhausted teaching my 6 year old to 'brace for waves' and tumble in the surf. You'd think I'd be exhausted today, but I'm not. I was up at 6:15 AM and rarin' to go. LOL. I soooo love AP.
You might have noticed that I haven't been posting my studies on the Arthritis Foundation site after the last foray you made to Arthritis Insight. That's because I was in a car accident (car just under totaled, I was minorly hurt and the baby was not hurt at all - Thank GOD! - and also importantly no stress flare!) and lost connectivity because of router problems. But I see I should continue there as it tends to keep you occupied over there. I'll post today. Thanks for showing me how important it is to keep up with you. If you would have stayed there I would have stayed here. Sigh.
But, the good news is - thanks to you and your peeps - 2 more people on AF just started AP from those controversial posts. And a couple of more over here! All thanks to you! I am really appreciative of how hard you are working to get people on AP! It seems when they read your posts and PM's they get questions - then research - then see how 'off' you are - then decide to try!
Maybe we'll have an AP get together in LA and learn to surf! It's on my list of things to do while I'm still alive and IN NO PAIN THANKS TO AP!
Pip - Queen of the Cult
Normally, I just don't post on these kind of threads. I'm not big into being nasty, rude etc and I don't like being accused of things that I don't do. But in this case, I'll make an exception...So let me try and get this straight. If you should disagree with the whole infection based theory and AP, you shouldn't post on AI. And God forbid if you do, you'll post of the AF forum???? Feel free, post away....all I have to say...What the hell are you thinking.No Lynn, not saying that at all. Just saying that I should have kept posting as these irrational post by some of your peeps are pushing people into looking into AP. And what they see makes sense - so they try AP. We'll see how they are in 6 months - but my guess is the cult is building an army - all thanks to one of the anti-AP'ers.
And I like most of the posts you make on AF. A lot of the studies are 'flawed' but that is hardly your fault. You are showing people where the research is and what is going on in the various therapies. That's all that AP'er want - info and the ability to make an informed decision.
Pip
P.S. Thanks about the accident. My daughter was scared and her shoulder hurt for about a minute but by the time the police arrived she told the officer that she was "OK cuz I can color again". You should have seen her calmly coloring in the back seat of the smashed car with 2 cars loads of adults freaking out!
Juliah-
She was talking about www.arthritis.org. I don't if "Anna" was referring to anything else.
Pip
That's all anybody with RA really wants...And I'll be honest with you..it annoys the hell out of me when people call the meds I take toxic. They haven't been for me or my sister-in-law who has taken MTX for years(around 15 or more she thought) I make decisions based on what I believe and what I think will work best for me. I'm in good health, except of course for the RA and I function quite well...I don't believe in the whole infection based theory and when asked I tell people why. I'm more inclined these days to do it with PM's so I won't be accused of things that aren't true. Nastiness just isn't my thing. I'm glad your family was alright and your daughter took it so well.Almond Joy -
LOL - you hit the nail on the head! This is a continuation of a controversial thread from about 3 weeks ago. Lynn and I are in two opposite camps on what is happening to us with these diseases. I'm an AP'er - I believe an 'infection' started this whole thing. She believes in the 'auto immune' theory where your body goes kind of haywire and randomly starts attacking itself. For RA it would be the joints. For MS it's the nerves, I think. Either way, Lynn and I tend to be very outspoken and, for the most part, do not use scare tactics etc. We try to rely on science. Some anti-AP'er do not. Instead of allowing people to make their own choices based on their own research they send/post info that is purposely misleading with the intent of scaring people out of trying a treatment plan that works. You'd think anybody dealing with these diseases would be jumping up in down in happiness at having another option if/when their meds fail.
Lynn -
I don't ever think I've seen a post of yours with misleading information. You don't seem to be into 'scare tactics' and I like that about you. I'm talking about BeeBee/Anna and her 'you'll be in a wheelchair in two years', or 'babies will get black teeth or worse yet, 'you'll get Lupus'. Anybody doing any research at all into AP knows that is NOT true. And I can personally attest that after having to use a wheelchair 3 X only 5 months after diagmosis - I am not OUT of a wheelchair and doing quite well. (see my boogie board post :-)
I understand your reluctance to hear the word toxic used - and I think in looking back over my posts during the last controversy that I've only did that once. I try to be very sensitive to the fact that many people choose those drugs and to try not to 'scare' people. But when I was diagnosed I did serious research into what they were trying to give me - and I balked at plaquenil - one of the mildest drugs out there. Are there people on AI and AF on Plaq and not having problems - yes - but I was not willing to risk that drug. Many of us APer's, when reading the info on biologics think -"there has to be another way?". There is - one that most rheumy's don't tell us about. Antibiotics.
Just because MTX has been good to you and your sister is no reason to think that it is a mild drug. It was designed to work as a cancer cell killer. It's very nature is 'toxic'. I'm sorry; I am not trying to offend. This is what I thought BEFORE even finding out about AP.
One of the stats I saw on the 'official' RA sites like AF, and science sites like the CDC and NIH was info of the mortality rates of people with RA. One thing that freaked me out was seeing (once) something like 60% of all RA people are dead within 10 years. My baby was 5 when I was diagnosed. She'd be 15 when I died - horribly disfigured and always in pain. (Any reason we're not freaked when we get these diagnoses?). Yes, there are people on this board with these diseases longer than that. But I didn't know that. The first BB I was ever on was the Roadback.
My question is - is it the disease? Or is it the meds?
And my next question - if it is an infection (and how many people post wondering if their strep, their dental work, their ??? was the trigger) how much sense does it make to suppress the immune system? Wouldn't that make it easier for the microbes to multiply? Is that why the disease eventually overwhelms the drug?
I don't think anybody has accused you of sending misleading info. We all know who is doing that. :-) And I've PM'd in the past - especially to parents dealing with children. As a mother of a child with a 'cosmetic' AI disease (but AI just the same) I am terrified that hers will continue on to something much more horrible. As a mother - I would hate to think that I started out on something linked to lymphoma etc (we adults can do what we want!!!) when there was something else I could research and try first for my child. If only to buy my daughter some time. I have NEVER written to a parent and said "you're giving your child cancer" like some of the anti-APer's do about AP - which they've never tried either.
I don't suppose you can keep somebody we all know on a shorter lease, can you?
Pip
P.S. Maybe you should can comment on some of the research I'm posting. You know, from the 'other side'. How are we going to help people learn and make decisions if nobody posts anything about the research you and I post? I still can't believe nobody commented on the repercussions of that diabetes study I posted. That just stunned me.
I think anyone should post any info they have, and if people disagree withI am on some "toxic" drugs, and if AP doesn't work for me I will be damn grateful to have them, and I will continue to use them despite what I believe to be their toxic nature. But I will recognise the potential harm they may do to me and safegaurd accordingly.
Amen, sister. It's not like if AP fails I'm not going to get on that ladder. I'll have no choice - because of that aforementioned child and husband. And you bet your sweet bippie I'm going to be grateful for them.
Pip
I'm shocked and dismayed at the attitudes of a large percentage of people with autoimmune diseases who don't research and educate themselves about their diseases and treatments. They rely on other people, forum advice, and blindly take the medication their physician's hand them. They do this without questioning the physician. Why, I don't understand? I personally question everything.
Pip, Gimpy, Brisen, and all of the other people that are on AP therapy thank you for posting information and research about the disease and the therapies. For everyone else thank you for posting about the other treatments and the diseases. We can never have too much information. Maybe it will stick to some of the people who do no research or questioning.
I've found you have to be your own advocate, you need to know as much as your doctor knows about your disease and treatment. It's not that difficult. Doctors aren't Gods, wizards, or any different than you and I. If your doctor doesn't want you questioning him/her then it's time to find another doctor. I'm on my third RD and this one I plan on keeping around for a long time. You have to take an active role in your disease and treatment process, not just be the vessel.
I appreciate any help with new treatments and research and once again thank you to everyone who posts. I can sort through it all and use what pertains to my particular set of medical issues. Lindy
[QUOTE=LinB]I'm shocked and dismayed at the attitudes of a large percentage of people with autoimmune diseases who don't research and educate themselves about their diseases and treatments. They rely on other people, forum advice, and blindly take the medication their physician's hand them. They do this without questioning the physician. Why, I don't understand? I personally question everything.
Pip, Gimpy, Brisen, and all of the other people that are on AP therapy thank you for posting information and research about the disease and the therapies. For everyone else thank you for posting about the other treatments and the diseases. We can never have too much information. Maybe it will stick to some of the people who do no research or questioning.
I've found you have to be your own advocate, you need to know as much as your doctor knows about your disease and treatment. It's not that difficult. Doctors aren't Gods, wizards, or any different than you and I. If your doctor doesn't want you questioning him/her then it's time to find another doctor. I'm on my third RD and this one I plan on keeping around for a long time. You have to take an active role in your disease and treatment process, not just be the vessel.
I appreciate any help with new treatments and research and once again thank you to everyone who posts. I can sort through it all and use what pertains to my particular set of medical issues. Lindy
[/QUOTE]
Lindy: I couldn't have said it any better! I agree 100%. Take care, Karin
This will be my last comment on this thread because I believe it has outlived it's usefulness. First, I like Anna and consider her a friend. While we don't agree on everything....I would certainly never attempt to control what, where or how she posts. She is entitled to her own opinions and really from what I've witnessed there is plenty of misinformation of both sides. I post info that I think is helpful to people with RA. What they do with it is up to them. It's not my job to try and influence how someone makes their medical decisions. For the most part, the people I've met are well informed about their options and they choose accordingly. As for the whole"toxic" med issue. I know a great deal more about chemotherapy drugs than the average person, perhaps that is why I don't respond well to the scare tatics used by some people concerning MTX. Untreated and uncontrolled RA boosts your risk of lymphoma ...those with a low degree RA had the lowest risk of developing lymphoma, while those with a moderate level of RA had seven times the risk. Those patients with the highest level of RA had 71 times the risk of developing this cancer.I don't think you 'fell for it'. Lynn is having a decent convo about her views. That's more than fair.
BeeBee/Anna continues to be a problem. Lynn doesn't want to speak to her as a friend and ask that she stop trolling. That's her perogative.
You explained why you feel ganged up on by the anti-APer's. You could have put the words in my mouth too. In fact, I even Amened you.
Pip
Thanks, Pip! I feel like I did fly a wee bit off the handle, there, though. Balanced, thought out conversations about opposing view points can be quite productive.Pip - I've been at work all day, just checked in, and hot damn! Someone sure brought this June 17th thread back to life! For what reason, I'm not quite sure.
I'm sorry to read about your car accident, but glad to hear no one was hurt. Did the accident happen yesterday when you went to the beach?
BTW...kudos on your boogie boarding! Have you posted your patient testimonial on RB yet? If not, you should! I was finally able to kick my headache today, so I'm not backing down on my mino just yet. Tomorrow's another mino day, so we'll see what happens!
Take care,
Gale
Damn - didn't notice the date. And a poster with only 2 posts! LOL Oh well, since we know where they came from maybe they'll enjoy my new posts on AF.
Actually - it's cool that a convo is going between the 2 sides. As long as we all learn to get along!
Thanks about the accident. I really need to learn how to drive. :-) No, it was Friday. Not having connectivity really thru out my sense of time. It seems like forever but it's only been less than a week.
And no - I haven't posted my testamonial. I could. I just want it to be special to show how I feel about this. I mean, really special. I just can't think how to do it. And I better. My year is coming up on 8/25.
Pip
[QUOTE=Gimpy-a-gogo]Thanks, Pip! I feel like I did fly a wee bit off the handle, there, though. Balanced, thought out conversations about opposing view points can be quite productive.
Okay, what the heck is "Amened"?
[/QUOTE]
LOL-- I think she means "amened" as in "Amen, Sista!" oh.....duh!
Well, Amen, to you too.
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