To Treat Aggressively or just enough? | Arthritis Information

 

This topic may have already been brought up but thought I'd find out your opinions and what your Rheumy's have expressed about this:

Kelly, I can't tell you what drugs to take or not take - that will ultimately be your choice alone with the advice and help of your RD.

I can tell you a bit of my story though.  I have had several RD's due to personality conflicts and to moves.  I had one that really scared me off biologics and only treated my RA with MTX, Celebrex and Toradol injections.  I was in constant pain.  I then move to another city and a new RD who suggested (strongly) going on a biologic due to the pain I was in and my labs, assesments, etc....  I didn't want this and did everything I could to convince myself I didn't need this. 

Then I developed RA lung, not a good thing, and went through a year of misery - of surgeries and drugs I might not have had if only I had stepped up the control of my RA. 

I am now contending with recovery from my heart surgery, something congenital but something that was hastened by poor RA control.  And, of course, my RA lung is a continuing issue.

I won't tell you what drugs to take... only advise that you do your homework and choose what is best for you and listen to your RD, work with him/her.  Yes, the drugs are strong.  But, uncontrolled RA can end your life as well.  RA damages much more than joints... there is proof of the high comorbidity of RA poorly controled.

Don't be afraid - be proactive.  And, as Shug says, "Live and enjoy every minute of every day!"  That Shug... one smart lady!

Waddie WADDIE!! [QUOTE=klynn141]This topic may have already been brought up but thought I'd find out your opinions and what your Rheumy's have expressed about this:
 
I see on another post from Spelunker (Shug) how she is having the fight of her life right now. In her words, " aggressive treatment, tight control, remission and to do everything in your power to keep inflammation, the scourge of RA, as minimal as is humanely possible. For those who are reluctant to take medications remember that it is not the meds we have to fear, it is the chronic disease that we have that is fearful."[/quote]
I can only speak for myself and most of what I can say is simple a repeat of what I have previous posted. The following from my introduction in March of this year:
[quote=Spelunker] Like others, I was offered a choice of therapies on diagnosis in 2004. I did the research and opted for IV to PO AP and diet typing. Erosions in my wrists, thumbs, right index finger and left ring finger appeared at ten months along with “anemia of chronic illness” and RA induced neuropathy. I chose to continue the therapy in the hopes of reaching a plateau where inflammation, pain, and damage where controlled by AP and diet. At 18 months the erosions had become worse and several other joints where involved.

I never experienced the herx effect described in the literature.  I simple went from one flare to the next with my sed rate climbing higher and higher and in the process was diagnosed with secondary Sjögren's Syndrome with both pterygium and pinguecula. At 18 months, X-rays convinced me that it was time to try something else. I started on MTX and did a gradually increase to 20 mg (subcutaneously). Plaquenil was added at about the 10th week to extend the duration of effectiveness, and recently Arava as my white blood cell count had dropped and MTX was reduced to 15 mg.[/quote]
 
[QUOTE=klynn141]I'm sure others think as I do, how scary it is to take strong drugs that could kill you or cause major health problems. Right now my thinking is to take as minimul drugs as possible to keep my inflammation and pain to a bearable point so I'm not putting these scary drugs in my body if I dont have to.  But after reading Shug's battle right now, I wonder if I'm wrong. How fast RA can turn on you. My dr said she thinks i should go on Enbrel....I am scared to and just am starting 2.5 mg MTX slowly to see how my body reacts. [/quote]
IF I could go back to the beginning and start again I would opt for combination therapy with Enbrel as the central drug. I believe that IF I would have treated my RA aggressively that I would not only have reached remission but that I would have found great and lasting benefit in AP + diet, but as it stands I waited to long to be aggressive and am now paying the ultimate price---my physical well-being and my life.

However, not everyone will be put in a similar position. Many folks respond to minimal medical intervention and never progress beyond the mild-to-moderate stage. Additionally, many folks report absolutely miraculous results from minimalist intervention, including pulsing AP combined with herbs and “natural remedies”.
 
[quote]SO, Do I chance it and take biologic drugs to fight this RA beast, or take the minimul drugs and hope it gets me through life without getting worse? Does that make your RA worse by not hitting it hard with more powerful drugs?[/quote] THAT is a weighing game only you can participate in. Weight the risks of the disease against the risk of the treatment and find your own sensible therapy. It is vitally important to discuss every aspect of treatment with your physicians. If you feel comfortable and assured taking minimal medication and your physicians agree, then that is the therapy for you!
[quote]Have any of you done this? Has your RA gotten worse to where you need to keep increasing dosages, and now are taking bigger drugs? Do you think if you were to have just started off with a Bigger more powerful drug it would have prevented worse problems?[/quote]
Yes, I believe that IF I would have treated my early disease aggressively that I would not be facing the prognosis that now confronts me---the result of uncontrolled and/or under-controlled RA inflammation. I believed with all my heart and my intellect that I could beat RA without resorting to “strong drugs”. I weighed the evidence and was wrong. I put my well-being on the line and failed the test.
[quote]I was on Plaquenil for over a year.  I was doing well, little soarness but not bad at all. All the sudden starting getting flares. Then the horrible weakness. That was ONLY one year....what about next year, is every year going to get worse and worse, will I lose my job and quality of life for myself and my family....I fear what I'm sure a lot of you fear, getting worse, not having a good quality of life or dying. [/quote]
I have weighed the evidence and am opting for quality of life over quantity. Is that the correct weighing or am I again making a misjudgment? Only time will tell, but for right now having adequate pain control and a sense of personal control is not only important to me—it is imperative.
 
[quote]Sorry this is so long. I am just realizing now how big RA really is and would love opinions on your treatments, what you've gone through or what you're Rheumatologists/pcp's have recommended or seen with others.
 
To treat this minimally in order to just keep you pain free and with very little inflammation but no more than that, OR... to treat very aggresivley with powerful drugs in the beginning.[/quote]
Only you can make those personal decisions: but you are absolutely correct, RA is BIG and deserves informed consideration and contemplation. I wish the very best for you and a game of weighing without any misadventures.

Cheers, Shug
I was diagnosed before we had powerful medications.  I spent many years on meds or dosages that knocked things down but not out. As a result I have severe damage that has left me with 7 (yes 7) joint replacements.  Without the surgeries I would be totally dependent on someone else for virtually every aspect of my life including feeding and personal hygeine....if I were even still alive at this point.   If you have ever seen RA at its worst then the meds aren't so scary.  The disease was going to kill me...I'd rather go down fighting than letting the disease win. I started enbrel 6mos ago. My RD was getting very impatient with me because I was sooo reluctant to move to biologics. He pointed out, quite pointedly, that having poorly controlled RA leaves you at risk for a whole host of other serious conditions. A much scarier prospect than taking the biologic. [QUOTE=buckeye] The disease was going to kill me...I'd rather go down fighting than letting the disease win. Well, I think I'm going to have a serious talk with my Rheumy at my next appt. The problem is , I always want someone to make the decision for me and she just wont do that. When I heard her say Enbrel increases your risks 3x more than a normal person to catch infections, cancer, TB etc, that's when I about fainted and said no way. (Not thinking of what the RA could do to me might be worse...) I also thought of how I might lose my job getting sick so much from taking Enbrel. My FMLA is already used up and have been warned. Kelly, I am trying to decide about going on biologics myself.  I have the same questions as you.  At this point I feel I could live the way I am although not perfect.  I feel like we are trying to make a decision on something serious but we don't have any way of knowing how bad it will get for us.  I go back to my rheumy in another month and maybe I'll have to make a decision then.  Hmmmmmmm....good luck. Kim,

Kelly - I go in two weeks to have blood work done again.  I think if I look the same and my numbers haven't really improved then he wants to start I biologic.  He was surprised at my last inflammation marker numbers.  All I know is that I'm tired alot.  I get stiff in the hips.  My wrists and knuckes are tender, but not too bad.  There isn't anything that I can't do (some jars are hard to open).  Fatigue is the worst part for me.  I don't personally know anyone with RA.  I have no idea how my case compares with others that my doctor has treated.  It can be hard to completely trust your doctor since I have only known him for  about 1.5 years.   However, he is the one with all the experience.  I know he is trying and cares that I am not suffering.  I'll let you know what happens and you let me know what you decide, too.

Kelly, No one can tell you what drugs to use, not even your RD.  It's not her responsibility to tell you to take a dmard or biologic.  She can only outline what will happen according to her many years of experience if you don't take the medications.  She can't make you do anything, nor make the decision for you. I've been on the fence for what feels like forever. Every time I think I have decided to start a biologic something happens to make it wait until my next RD appointment or I change my mind. It's being in this gray area that makes it so hard. My labs are not remission labs but they are not very elevated. My pain ,stiffness & fatigue are there but I go to work every day, come home and do my husband's business clerical work, take care of the household issues and children issues and believe me a couple of them really have me stressing. I had x rays and no erosions were present.
Now if I started flaring on a regular basis and couldn't take care of business, or the xrays showed erosion I would have hopped right on the biologic.
My doctor says I should take it for prevention. But there are serious side effects that can occur. I have a cancer history in my family. What if MY RA isn't going to progress-it's all a crap shoot if you ask me. Yet when I read about Lin ..... who knows what's going on in places xrays weren't taken? What if out of no where it decides to escalate?
As Lin B once said- RA is the great trickster. Remission has been my goal since I was initially diagnosed. It remains my goal, albeit distant and perhaps even unlikely. Like Lindy, I keep trying.

There are dozens of studies that link RA inflammation with a host of comorbidities. Hindsight is 20/20 and I now realize that having joints that were inflamed, being in pain, and having a constantly elevated ESR where my body's way of "telling me" that all was not right in the world and that I was causing irreparable damage.

All I can do at this juncture is to share my story and hope that my saga will provide the impetus for just one person to investigate aggressive treatment, gain tight control, prevent complications, and reach remission.

It is a weighing game.




At my diagnosis (consult) over a year ago, my RD warned that we may have to go aggressive with meds MTX + biologic because of high RF factor, Anti-CCP #'s and erosions in some toes.  I started MTX right away 4 weeks @ 10mg then 20mg.   He was cautious about adding a Biologic, becasue of the risks involved.   At one point he warned that if my inflamation didn't go down by the next visit he would probably add another DMARD first.  He didn't need to,  he has never said I'm in remission, he has said that If I continue to respond to the MTX alone he may be able to reduce 8 pills per week to 6 pills.   I'm very pleased that I have responed to the MTX so well.  Now I have some morning stiffness & soreness in fingers ( which I haven't had for some time) for less than 30 minutes, all labs continue to come back normal every 8 weeks. Last visit he said he wasn't going to make any changes right now, come back in 4 months.  I wonder and worry if we're doing enough - I have few symptoms and normal blood work but still wonder with the return of stiffness.  I used to think we caught it early - but I have erosions in some toes?  I just don't know. 

All those years that RA did damage to my fingers, wrist, ankles, toes, back and shoulders I worked fulltime and took care of my family.  Many times RA is silent.  YOU DON'T HAVE TO BE WRITHING IN PAIN AND SWOLLEN TO HAVE DAMAGE OCCUR. 

LinB2009-09-12 09:54:15This is an interesting question for me.  After a year on slowly increasing MTX dosage (17.5 mg per week now) my hands, feet, shoulder are worse.  Fingers visibly distorting, one toe as well.  Nodules on finger joints.  I can't help but wonder.  I have a rheumy appt in two weeks and wonder if I should have the RF, anti CCP, and ESR tests in addition to the general blood work and liver function tests every three months.  It's been a year since I had anti CCP, at diagnosis.  Now I am having major eye problems with blurriness and dryness that is bothering me more than joint pain.    I was diagnosed in 2002 and was put on Bextra (now off the market..bah!) and Plaquinel (sp?).  I went into remission for 3 years and then once Bextra was off the market for 5 months my body went into a constant flare.  First they tried pred and that worked but I didn't want to stay on that long term because of the side effects.    So, I tried MTX and eventually went up to 20 mg.  I took the edge off but that was about it.  I just kept wondering why I was taking a dengerous drug that I consider dangerous and was giving me so little relief.  However, I was getting nodules and I couldn't find any shoes I could fit me swollen feet into.  I could barely walk.  So after resisting I added Enbrel over a year ago.  Does it scare me?  Definitely.  Yet, I can kneel in chuch and get up just like I did before I had the disease.  I have zero stiffness in the morning.  That's right zero.

Snow, sorry I misread your post Wow, I guess there is no one straight answer . I think these past 4 weeks has really made me wake up and realize I've got to face this thing head on, try not to be scared of death and enjoy and treasure the time we do have left whether it's one year or hopefully until we are old and gray. I appreciate your stories and thoughts. I am starting to think After reading all of this that maybe a biologic and treating aggressivly even though I can tolerate the way my bodies feeling right now, might be better in the long run since as others have said it can affect you silently.   I am of the sort who feels that 90% of the side effects are coincidental, not an actual result of tking the meds. I think if they could they would call house fires and car accidents a side effect.

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