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Well now I'm getting the impression that these biologics are not the be all the RD's suggest they are. It sounds like initially people get great relief -then the pain comes back. Pshaw! I'm not even having great pain at this time.

 My next  question is: How about your inflammation numbers and have you been told you have no erosion?
I guess maybe I have no right to think we're supposed to be pain free but are the biologics really slowing or stopping the disease?
Well, I've told you that I still do have occasional flares, even on the Enbrel and mtx.  And from what I can tell, I was in worse shape when I started the Enbrel than you are right now.  The best I can tell you is that for me, Enbrel made my life liveable again.  I don't remember the numbers, but my ESR and CRP were through the roof and now they are normal. After a year with RA, I have no erosion.  You, of course, have to make your own decision,  but as for me......I'm glad everyday that I made the choice I made.My RD told me I will always have a bit of discomfort, but unless inflammation and pain persist for several months I probably wouldn't get damage. I've never heard of having to be completely pain and discomfort free all the time in order to be considered controlled until lately.

Pain and discomfort free is certainly my goal, but I sure wouldn't go on biologics for the levels I have now.

It's definitely a personal decision, though.Honestly, my opinion after three years of trying drugs, whether biologic or not is that none of the them work really well. Most of them work for a time, as you say and then stop working. It's very individual, one drug or a combo may work for someone well for a while.

I don't think the biologics are necessarily better than the non biologics. It just seems that as a patient you are taken through the process of all of them hoping something will work and sometimes it is does for a while.

For me a combo of Plaquenil/Sulphazalazine/MTX had probably the best rest for me for about six months. Arava didn't work at all and sent me into a flare. Humira worked for about 2 weeks and from my last Rituxan round of six months, I got five good weeks. Yes, with Rituxan I went from 42 swollen joints to 4 for a short time but my bloodwork did not decrease that much - ESR was still 50 and C-reactive protein was 30ish from memory. Both have been lower than that at other times when I wasn't on biologics. Go figure!

Actually, I have found in taking probiotics in the last couple of months, generally my RA has been more settled in my opinion, just that I have felt better most of the time.

Is my goal to be pain free? No, probably not. My goal here, with the severity of my RA and what I deal with, is to be functional...that's all. I want to be able to enjoy life, take care of my daughter as a single parent, manage my household etc. Basic, simple things.

I don't think the biologics are a miracle solution, no more than the other drugs.
Visable inflammation right Gimpy? Or the kind that shows up in blood tests?Cordeila
 
My RD is saying that MTX and a biologic is agressive treatment and that it is needed to make life down the road for RA patients the best they can possibly have. He swears it either slows down considerably or halts the progressive of the disease. He makes it sound like a miracle doesn't he?
I think your RD is glamourizing the biologics by the sound of it. He's wrong. In my experience, it is simply not true. I wish it was true that MTX and biologics slow down or halt this disease.  I know tons of RAer's from here and other sites who are on a combo of MTX and a biologic and it is making very little difference to their disease.

I have actually asked my RD to consider taking me back to that non biologic combo of Plaquenil/Sulpha/MTX because it seemed to be the thing that has worked best.

I don't think one necessarily has to go have MTX and a biologic. Sometimes, a combo of  DMARDS alone will do the job. It is so individual, it is just what works best for you. If what you are on is working okay, biologic or not, stick with it. It's such a delicate balance, my idea is...don't muck it up. Lol.

All I say is everyone is different. 

That's completely true, Catnip. Everyone is different and responds differently to the medications. Also everyone's RA is different. This is a disease with many variables. Many of us experience similarities we can all relate too but in the end our RA and the medications are different experiences for each of us.  When I'm in the position of trying to make a decision about a drug or treatment plan I do some research and try to find the largest, most unbiased set of data I can to help me assess the odds that it will significantly help and the risks of side effects.  I also talk frankly with my doctor whom I trust to give me an honest opinion (...not that I always agree). Personally, I don't weigh very heavily opinions posted on a forum like this for the following reasons. 1) I think the people who come to a forum like this are not an unbiased cross section of the RA community.  Frankly, those who are doing well and happy with their treatment are less likely to seek the kind of support they find here.  Not a bad thing, but definitely a biased cross-section of opinions. 2) People with a negative experience with a drug or treatment plan tend to be more vocal about.  It's just human nature.  There's also a tendency not to "gloat" when you're doing well and others are struggling terribly.  You don't want to make them feel worse by talking about your success. 3) It's always very risky drawing conclusions from such a small sample...even if unbiased.  You're better off looking for studies with thousands of participants.
 
To answer your question, I've started my third year on Humira.  It works well for me about 70% of the time, not perfect, but good enough to make a big difference in my life.  It took a while to kick in but I haven't noticed any decline in effectiveness yet.  That's not to say there aren't variations in effectiveness.  RA is a disease that flares and subsides...when it flares the Humira still helps but not as well.  It's not a perfect solution but I intend to take Cordelia's advice and "not muck it up".
 
Hope this helps,
Alan
[QUOTE=Alan]RA is a disease that flares and subsides...when it flares the Humira still helps but not as well.  It's not a perfect solution but I intend to take Cordelia's advice and "not muck it up".  Here's a link to a good summary article from last fall's ACR annual meeting.  I think you have to sign up for medscape access (free) to be able to view the article...not sure.  The conclusion is that most of the studies show pretty conclusively that early treatment with a combo dmard/biologic treatment does slow or halt progression of the disease...with at least some objective evidence from x-ray evaluations.
 
http://www.medscape.com/viewarticle/567521
Alan-
 
Your point is well taken about not making a decision based on people's answers on this forum. I just wanted to get a feel for how other people made their decisions and the circumstances that surrounded it.
I do talk frankly with my doctor and trust him but....I don't know...I have this fear or negative gut feeling about the biologics.
I'm a little clueless on where to find those unbiased studies though. I'm going to view that medscape link you posted. Other than that I've been on the Enbrel and Humira sites to try and educate myself but obviously- they are biased.
I'm with catnip.. IF you don't try it.. you won't know that it works or doesn't.
 
Everyone is different... everyone's disease is different...and our remedies are just as diverse.
 
IF your regimen is leaving much to be desired as far as destruction and pain, then perhaps it isn't working for you but could for someone else.. 
 
No.. these aren't guaranteed fixes.. but it's the best things we have to save ourselves from the pain, exhaustion, and deformaties... whether they be biologics or planquinel (sp?) or antibiotics.
 
I'm game to try ANYTHING that will do that for me..  I am a YOUNG 50...And, I'm going into it with a positive attitude to work with my meds and my body to make me better.  And better is damn good compared to where I am and where I was.
 
I had JRA almost 40 years ago, before any of these meds were available.  I suffered joint destruction at age 12 with replacement and rebuilding of portions of my knee.  I still have disfigurement due to that destruction.  Today that would not have happened.
 
I think we can all make our opinions based on what we "know" but above all else we aren't specialists and have only our own experiences to detail.   Discussing what works and what doesn't work for you will give some hope and helps others understand why that may not work for them. 
 
I guess I just don't close the door to any opportunity to feel better.  I will do what I must til and if we find something that works. 
 
I hope you all find something that will ease this burden of disease.  I think what I was really looking for is to see if people were saying- yes the mix of a DMARD and a biologic  stopped the progression of my disease.
 
This is what my doctor is telling me it does- for most people.
 
Not so much my pain went away and I have quality of life.
 
Right now- I don't feel I need to add anything to the mix to achieve that.
I can only speak for myself but I am very pleased with how well Enbrel has worked for me.  I currently take 20mg of Arava, 5mg prednisone and a weekly injection of Enbrel.  I currently have no symptoms of RA.  I spend an hour a day at the gym running on the treadmill and lifting weights.  I'm very careful to eat an extremely healthy diet and take supplements that include fish oil, tumeric, biotin, calcium/magnesium/vitamin D and one of the daily mega multi-vitamins from GNC.  I drink a small pitcher everyday of green tea with lemon and fresh ginger as the tea and ginger are supposed to have anti-inflammatory benefits.  For now I'm doing well and taking things a day at a time. 
 
Stacy
Sorry, guys, I know I must be sounding rather jaded and cynical about this issue but for me biologic or any DMARD success is not and never well be based on bloodwork, research, studies or what RD's think. My basic for success is my wellness level. Sure, if I am better than when I was dxed and on no medication but honestly, I am don't care what my ESR or c-reactive are or how many swollen joints I have. I am interested in whether my pain levels are low and I am able to function well in my life. That's what it's about for me. Now as far as I am concerned they have not yet found a medication or combination that actually stabilises my wellness and functionality. I am not at a place after three years of medication trying, where I am coping and stable with my RA. Therefore, as far as I am concerned, none of these meds are doing the job.

Alan, I don't knock the success you have had on Humira at all. What's happened to you with that biologic is what should happen...you have been stabilised and started to be able to get your functioning back in a way that means your life is progressing and manageable.

I am just saying that there are quite a few of us on the board for which that hasn't happened after trying and trying medications. It's difficult. And I certainly don't see 'biologics' as some miracle cure. And I think it is dangerous to look at them that way. RD's often give that impression, the patients expectations of the medication rises and they think a miracle cure is imminent. That leads to major disappointment and grief when the med just doesn't cut it at all. I went into Rituxan being told basically that this was the drug that was going to miraculously give me my life back after three years of hoping. My disappointment was huge when after feeling great for five weeks, I flared badly and that was all the benefit I got from that round. If you do that with each medication, it's a very painful process. I have gone into Round Two of Rituxan actually having no expectations at all that it will do anything because I can't go through loss like that again. It's just too painful.
Cordeila
 
I really feel for people like yourself  that for whatever reason....the drugs just don't seem to work. Hope they find something for people like you soon.
Thanks. I wish they would find something too. And unfortunately, I am not alone. There are quite a few of us.

I know I am usually uplifting and kind but today my pain levels are about 40/10. I just hate it when the drugs are presented as the 'miracle' stuff because the reality of what many of us go though is just that they are not. And I feel RD's often glamorize them, particularly the biologics. Reality though is many of us here on biologics are not at a functional wellness level at all and I don't care which studies say what, unless you can show people being able to return to work, function well in their families etc. Yes, many have success but many of us also don't. Glamorizing your expectations about what these drugs may do is dangerous to your disappointment levels.

I have a female friend who has PA and Fibro and has just started Humira. She is already 'getting it', as she said to me when she started, "I am trying not to have any expectations about it working or not." I hope beyond hope, it works for her. I really do. I would not wish my road on anyone.
remicade, oruvail, plaquenil worked really well for me for about 3 and half years.  they took me off plaquenil---because of side-effects.  loss of hearing and sight all on my left side.  but i have been surprised at how much i have missed that pill.  it kept me steady.  my body is all over the place right now.   i do not know what new they will try, arava did not work.   too much poo.... i have visible swelling and hot to touch places so we will wait and see.  i have been better than this before.  so i hate to see myself falling off the top of the circle. w.w.     i am not an easy person to get under control.   my poor doctor.wonderwoman2008-04-29 20:08:39

I have seen the commercials on tv for these biologics and they make it seem like a miracle. They say " can you open this, tie that, o yes, you can"! I still say we should have a money back guarantee. If it doesn't work, we should get a refund. Every other business offers that to their customers. Why not people with ra or any other disease?

Wanttobe,

 

I don’t know if I have erosions and my inflammatory markers have been normal since shortly after my diagnosis in 2004.  I think if you look hard enough, you can find good and bad articles on all the drugs.

 

I may have said this to you already.  I think the reason you feel o.k. is because of the prednisone.  I told my RD once that it was “magic in a little white pill.”  I really wanted to stay on it but my RD felt it should only be used as a last resort due to the toxicity.  Because of your severe onset, I’m afraid once your prednisone is removed that you’ll start having problems again.

 

I started on a biologic because I had NO quality of life without the prednisone.  I was in constant pain without the predisone and I was afraid of losing my job because I could hardly make it to work.  I chose Enbrel because it was my insurance companies “drug of choice” for biologics.  I’ve only been on it for about four months.  I know it hasn’t been long, but it’s been the best four months I’ve had in the last three years.  I think it actually works better than the prednisone.  Even on prednisone, I had this ache every day in my wrists.  It’s completely gone now.  I don’t know how long it will last, but I’m sure going to enjoy it while it does – whether that’s days, weeks, months, or years!

[QUOTE=babs10] My wrists hurt everyday too even on the prednisone.
 
You are probably right that it is why I am enjoying what I consider to be pretty good health.
I was on 40 mgs and I have tapered to 9. So I'm like- wow! That's a big drop and I still feel good! But that's  denial....9 mgs. is still not a safe daily dose. My taper should take 6 months to 1 year as my doctor is only allowing a 1 mg. drop every 2 to 4 weeks. Since I was still having "discomfort" (I won't allow myself to admit I have pain) at 2 weeks- he said hold off for another 2.
 
I do agree that the treatment has come a long way and the out look for a lot of RA patients is much brighter.
 
I had a childhood friend with JRA at 16. Unfortunately either she is just one of those people
who cannot get the meds to work for her or the drugs were inadequate 30 years ago. She's in a wheelchair and has had multiple joint replacements and even an organ transplant from complications of another autoimmune disease that surfaced. When I was DX'd although I have not had contact for years it was immediately what came to mind. I was like OMG- not me!  The doctor said "Most people we can get into a remission but some people just get worse and worse."  I had a severe onset and did not respond for a good 2 months- I was really taking heat- but when I finally turned the corner...I thank God every day for what He gave back to me- I have been feeling great.
[QUOTE=Suzanne] [QUOTE=babs10]
I had JRA almost 40 years ago, before any of these meds were available.  I suffered joint destruction at age 12 with replacement and rebuilding of portions of my knee.  I still have disfigurement due to that destruction.  Today that would not have happened. 
[/QUOTE]

My daughter's wrist became deformed while I was being told by more than one doctor there was nothing wrong with her and during the time we had to wait to see a ped rheum after she was so sick and in pain that they finally believed me.  She won't get that back, no matter what we do; ped rheum has confirmed that to me.
[/QUOTE]
 
oh Suzanne. I'm sorry your little girl had to wait.  I know alot of diagnosis of RA/JRA is based on symptoms.. how did they expect a 5 year old to tell them? 
 
I wish your daughter postive results in treatments going forward. 

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