Soon after my Dx, my inflammation was so bad that fluid was building up around my heart. Doc said I was 9-18 months from an incident (heart attack or stroke). So, I took the biologic. I did not like anything I read about the risks of taking these meds. So, I am still here, and I can function. Not like before, but good enough to work and enjoy it. I think I am generally lucky, and am counting on it holding out.

Um Stephen, must disagree on the deformities being a certainty without biologics.

Mom got RA before biologics. Hands twisted by year 4. Very aggressive case! Got on Minocin - full remission and no more deformities in 20+ years since.

I'm in year twelve. Have very severe RA when its not controlled. (Only happened one 3 month period thank god!).
Also used Minocin as first/only treatment for the first almost 11 years. Now I'm in diet induced remission. No obvious deformities yet.

Dr Brown and his clinic recorded many such case studies. Ours are far from unique. But 'conservative treatments' have fallen out of favor with the heavy marketing by pharmaceuticals.

Go with your gut Lion princess. You are the one that must live with the positive and negative consequences of your decisions. John's Hopkins book on Rheumatoid gives percentages on patients experiencing the major side effects of each drug. They should have an updated one out now. Might be a good read for you. Face your future with your eyes wide open.

RA sally, thank you. Very informative!
So I gathered, persons with RA have a relatively same risk of cancers as the general population, but the risk for lymphomas and some skin cancer is increased with RA inflammation. The use of biologics did not
increase that risk any more than just the fact you have RA. I also saw in the chart that cardiovascular related deaths were the most prevalent cause of death amongst RA patients.
I feel, logically, if you suppress your immune system and the overall risk of lymphoma is increased with RA patients because of the disease itself, then it's safe to reason biologics do not cause cancer, but maybe the do hinder the body's ability to fight off cancer cells that develop. The risk of cardiovascular events are obviously increased, even moreso than cancer, so treatment and the reduction of inflammation is important in keeping that risk down to a minimum...thus use of dmards or biologics can become essential if RA remains uncontrolled.

I appreciate your view point 2scicrazed. I know your and your mothers history. I believe too many persons RA was triggered by allergies run amok. I'm positive, absolutely positive, my injury caused my immune system to go nuts and was the cause of my RA. I have attempted researching the immune response for injured tissue and see the main cytokines and wbc that are involved in the healing process. Those cells are the ones that caused my RA to blossom. I feel if I can find the right drug to counter act those specific cells, I can get myself into a drug induced remission.

I DO think I am quite leery of remaining on a biologic longer than 6-8 years. I would feel safer choosing to switch back to a less effective dmard like what I currently take, for 5 years, then return to a biologic potentially...if remission can not be attained.

Being 35 I have potentially 40-50 years of this as opposed to 30+ or so years, so I have to consider long term treatment compared to persons diagnosed in their 50s. I am cautious because no studies have been conducted on RA patients with 40 years of biologic therapy, and that I think may have different results than 10 year studies.

Thanks again to all persons perspectives.

Lots of great articles and comments here. I think this decision is easier for me because of my age. My children are all grown, so that's not a factor. What it comes down to with me is simply how I want to feel now. I want less pain, more energy, less brain fogginess. I want to live the years I have left and enjoy them. So, the decision to take what is needed is simplified. I will take the meds and enjoy my life now....................that's assuming of course that I'll get good results on them. I empathize with the fact that this decision is so much more difficult for our younger people.
sherrie

Yes Lion, those of us that start this journey in our early 30s - do have different things to consider than those diagnosed in. their 50s. My family lives into their 90s. When I was diagnosed, MTX and Biologics were just coming to the foreground of treatments. I had to weigh the risks of 60 years of treatment. Nothing is really known past ten years for most of these - except prednisone and Minocin. So I made my gamble and threw my dice. So far, the odds have been in my favor.

So I know how it feels to face half a century ahead of you with RA. May the odds always be in your favor for whatever cards you choose :)

are there studies of juvenile arthritis patients and their protocols? I assume childrends and teens are taking the biologics and methotrexate from childhood on out in order to have a semblance of childhood.

I get body mapped by a dermatologist once a year. just a reminder to folks that may be on biologics and have forgotten the skin review necessity.

after reading Lynne's post I was reminded of my two maternal aunts who had RA. I did not happen to chime in on the other relatives post that you had. they died of massive heart attacks.at younger ages. their RA treatment was very limited. a lot of my lifestyle changes are in homage to them. since I seem to be off RA treatment so much for infections, I try to ameliorate the toxins (cholesterol yadda yadda) in my life in other areas to pretend i have some control

Ros

lionprincess, this is a great thread & thanks for starting it. Here's the deal with me: back when I started on Enbrel I felt I had no other choice due to the severity of my symptoms, nothing else was working for me then, so I was put on the national waiting list for Enbrel. It took about a month or so for me to actually get the drug. and for yrs and yrs it helped me tremendously. I had so many pre-cancerous and cancerous skin lesions requiring surgery or cyrotherapy, that I lost count & was actually taken off of Enbrel for a period of time due to them, but within weeks was put back on Enbrel because of my symptoms (at my request). The rate of the lesions slowed, but I do still get them, just not as many.
I'm now at a point that I don't feel I'm needing the drug as bad as I used to (ie being off of it for weeks now and not having any increase in symptoms) so therefore I can't see taking the risk of SE from it, so I feel the need to discontinue. RA evolves with time (in my case) I don't have all the red hot joints that I used to (thank God). And the pain has changed too....I used to have pain that would move from place to place (ankles one day then moved to elbows next day etc) very severe pain...now the pain doesn't do that, it seems to have settled into specific sites & pretty much stays there. for example both ankles have intermittent pain with chronic swelling that has stayed there for over a yr---both wrist are a little swollen and stay like that-----all damage from the RA---but not much new swelling going on. Plus you learn to pace yourself and deal with the pain on a daily basis much better than I did at the beginning of all this. So considering all this, I think it's time for me to say goodbye to Enbrel, I believe it's done it's work.
As for considering all the risk.....it's mind-boggling isn't it?! I've based my drug decisions on my immediate need, as I'm guessing most of us do!?!
Best wishes!

2scicrazed - well, of course. If anything else works, use it! But, if it doesn't, then the biologic question of risks becomes much easier to evaluate.
Methotrexate, a milder dmard caused severe liver toxicity in me. It took a long time to get better, but the liver can repair itself.
Enbrel put me into remission. When I quit taking it, I stayed in remission. I've been in remission since Dec 2011. I've also switched to a non inflammatory diet to hopefully carry me further. My view of Enbrel is very positive.

2scicrazed, i'm assuming that when you disagreed with 'stephen', you meant me. scientific studies show that the absence of symptoms like swelling and pain do not mean that damage is not being done. it might not be a lot of damage, and it's certainly not as much damage as would be occurring with lots of pain and swelling, but its damage that will ultimately and over the long term lead to deformities. these are just two studies that i found on public sites that support that information. i've found many, many more searching through my college's library.

http://rheumatology.oxfordjournals.org/content/40/3/297.short

http://ard.bmj.com/content/66/3/358.short

the second study in particular shows that people in sustained remission may not show significant radiographic degradation, yet 16.7% of them do present degradation. it may take longer and not be as noticeable, but even in remission we experience damage. rheumies generally treat to symptom - they want us to have improved quality of life and be able to function well day to day. but the disease is still progressing and is still active; it doesn't just go away because we have no pain or little swelling.

all of the immune diseases we talk about - rd, psa, celiac disease, any of them - are there even when they're not active. someone with diagnosed celiac disease may not experience symptoms when they are on a gluten-free diet, but they still have celiac disease. like my asthma - my inhalers expire before i can use, like, a quarter of them. i haven't had an acute attack in months, maybe even over a year. but i still have asthma, and it has been a bit more noticeable during my respiratory infection. yes, we want a good quality of life, yes we all want remission, but just because we don't experience the typical symptoms of rd does not mean the disease is not active at some level.

pred is a great masker of our disease.

Hmmm, sounds a lot to me like the leading causes of death for ALL Americans.

Ah, true alto. But I'd be willing to bet it increases the risk of it all happening sooner than the average American, depending on when diagnosed I suppose.

Maybe me being 35, my average risk for the listed diseases of rasally will potentially give me problems at 68-75 yrs old, but being diagnosed at 34 with Ra, maybe my risk shortens to 55-60 yrs old for a major cardiovascular event occurring.

I don't know, just a thought I suppose.

RAsally, I always say 'diet induced remission' - I never ever say 'cured'

Since as Steph said in a post just two before you - autoimmune diseases are still always there even when there is no symptoms.

I still have RA - as does my mother. Unlike my mom who hasn't seen a rheumy since Dr Brown died - I continue to see one for annual checkups. I do that for the same reason that I came here. I felt that the man upstairs had answered my prayers by allowing me to stumble upon my own magic bullet. I had sworn to him that I would come out of the shadows and tell my tale - if I ever found that bullet. So now I am a case study for my doctors and a somewhat lonely voice for conservative therapies here.

No single treatment works for everyone. But we don't discount the value of biologics or dmards because individuals had bad reactions. No one seems to get their feelings hurt because so-&so talks about humera all the time - but it didn't work for the others. It's interesting how some here discount conservative treatments because of their experiences. And sometimes even question the person's motives for discussing it. Should I just stick with a more agreeable topic like prednisone?

Conservative therapies have proven effective in studies and for a percentage of patients. Whenever a discussion about concern over biologic side effects begins - alternatives such as dmards as well as conservative treatments should all be included in that conversation. We are all different - with our own tolerances towards risks and our own body's reaction to what we expose it to.

Yes, one day I may be facing a similar decision to Lion, but I will always be thankful for the decade + I've had on conservative treatments. And I will always recommend it as an option for consideration by a newer patient.

May the odds forever be in your favor with whatever treatment you choose to gamble on...

Wow, gamble. That hits the nail on the head doesn't it? I suppose if I were rasally and tried all that worked for you, I'd be frustrated...or disappointed maybe, that I did it and it didn't work, yet you praise it as a great thing that can work.
I also think I'd be frustrated if someone came on here praising the works of methotrexate and how it works for most, is very effective, got them into remission, when it caused me hedioud constant daily headaches. The damn drug worked for my pain, but my head pain was too much to live with.
My doc tells me most of her patients find relief from metho, or adding a second form of treatment. She calls me her problem patient, the difficult child if you will.
That too is frustrating.

This disease is so personal, it attacks us like an enemy on the field. It's relentless. It's easy to get slightly offended sometimes. I don't think she meant to offend you personally, however.

I feel her frustration, and I hope to feel your relief one day.

I do have 2 ears to contribute nose parts!

Jen
^^^
Hilarious! Awesome way of looking at it. Thankfully I remain virtually sun free and have most of my adult life.