Hi Kim,

My Rheumy said (and I hold him to this) that the first 3 years after being diagnosed with RA are usually the hardest as the disease is usually aggressive and it takes time to get the right cocktail of drugs. It feels like a mad merry-go-round to me, been on probably 9 drugs since dx 15 months ago & still relying on Prednisone to function. It stinks doesn't it? It's a struggle and no fun at times.

Some others on DS have had similar experiences to you and have found something that works for them. So, try not to lose hope... it's hard. And, when the disease is being yukk then I know it's even harder for me to keep on top of it mentally, let alone physically. Hope that others have some wisdom for you.

Take care, Anna

DisneyFan,

I have been there last year. I tried EVERYTHING and nothing worked. Then I went ironically into remission from January till August of this year. I started having flares up the ying yang to be told I have RA when I was told I didn't. Now I"m at square one with Methotrexate.


I was told that I had the slow progression type. My doctor said to me the type you had slow or aggressive was which way they were going treat my RA. Have you been told that? Maybe you should look into it. Also, from my experience sometimes you need to be your own advicate for your health care. I hope you find something that will work. If you need to just vent I'm here to listen and I'm sure everyone else is too!

Jenn :) \_/> hot coco for you.

Hugs!
I feel the same way, I was diagnosed in April and so far I cant take MTX because of liver counts, prednisone is the devil and I am still on that, Humira did absolutely nothing so my dr doesnt think any of the injectables will work and wants me start the infusions (I had super high titers when I was diagnosed). Which is scary to me because I spent 3 days in the hospital with swine flu and thought I was being pretty careful on the Humira so that I wouldnt get sick. So whats it gonna be like when my immune system is even weaker with the infusions? Sorry for kinda venting. What all meds have you tried? I really hope you find something that works for you!

hi Disney, I feel for you because it was the same for me, and I am sure for others here too. It was frustrating for me, One drug after another.

I am hoping you will find relief soon. I know new treatments come out all the time.

It is up to you what you decide and how long you are willing to keep on the ride. If there is a voice inside of you saying to try something else then perhaps look into alternative medicine.

Yes, I made the personal choice and actually did give up taking meds and just said no more. It was after several years, almost 15 yrs, of struggling with it all. I just reached that point that I no longer wanted to continue.

I would never tell someone to quit taking meds. So I am not saying that.

I had been looking into natural and alternative medicine while on prescribed meds and slowly just went down that road.

I think taking a different approach to conventional medicine is a personal choice and something to be carefully considered.
Everyone is different.

Hugs to you and I hope you find what works for you.

Oh how I can relate to you all in my own ways!
I been diagnosed with RA in May 2005 I been on MORE medications from pills to shots to infusions!
WHAT WORKS???
So far MORE DESTRUCTION from this dam disease and MORE QUESTIONS WITH NO ANSWERS!!!
I have as much faith in the medical profession as I can spit a fire out!
I PRAY and wonder IF God even hears me any more!
All I can "POSITIVELY" say to you is BE STRONG and like me and MANY others who suffer with this dam disease...DON'T GIVE UP!!!
Good Luck and God bless you!

Hey Kim,

I really do understand you. Supposedly I have "mild" RA. MY RF is only 20 and I dont understand THAT because everywhere I have looked online it seems that "normal" ranges are between either 1:20-1:80 or 16-40. So if you look at it that way it would seem that I do not even have RA. Yet the lab that does my blood work (biggest in Austin) says that anything over and including "10" is high. I guess I can say I am "lucky" to finally get a dx, 3 years ago it was "16" only 6 over positive and the rheumy barely gave me the time of day. He did dx me with Fibro though. I have only been dx for about 2 months. I started with MX but he pulled me off of it on my 4th week because of fatigue so severe I was literally passing out and not able ot open my eyes and when I talked I made no sense. Now I am on Prednisone and see my new Rheumy Jan. 6th. I want biologics but they always say for moderate to severe RA. Who knows.
---------Now Iwill tell you this little story. I have bipolar disorder. I was dx with it when my youngest son was 6 months old. For 2 years thaey had me on everything. Always changing me up. Plus I had horrible side effects. It took 5 years and a trip to the looney bin section of the funny farm before I finally began to find meds that worked. Of course I came out of there on 9 drugs but slowly weaned off till all I take for bipolar is Depakote, Cymbalta, Ativan and I will be adding a sleeping pill. Have not slept in weeks and I hear RA will do that. Need sleep so I dont become manic--lots of fun for me but my famiy suffers.

Please do not give up, think of all that love you. They would be devastated if you were to give up. I agree that there could be some alternative choices but from the research i have done so far there does not seem to be a lot. I know chiropractors help and I will be seeing one tomorrow and he does accupuncture which is supposed to relieve pain for up to two weeks(woohooo!) and I also read that large amount of actual "Fish Oil" help as well. Dont get the Omega 3 plant sources, it has to be the actual fish oil. It is supposed to help with inflammation and pain. I think it is interesting to knwo this since this also helps with bipolar. Maybe there is a correlation between bipolar and RA???? Would be an interesting journal article. Good luck sweetie!

Going off meds should not be considered "giving up". You are simply "changing your focus" and trying to lead the best possible life despite an incurable and crippling disease. YOU have the power to make these decisions, no one else...including your doc, who shouldn't *push* you down a path you no longer want to go down.

I made the choice to go off all meds three months ago (because like you, nothing worked) and what I heard from many of my friends and family was "you've given up, go back on the meds, or maybe you should see a psychologist to help with your depression." But I'm not depressed...I just don't want to continue to take meds that only make me sicker and don't help my RA. Even my lawyer told me not to go off them, or it would "look bad for my disability case" (I lost my disability cases anyway, while continuing to take poisons that didn't work). I also am not interested in alternative meds anymore...I've tried so many things, both traditional and non-traditional, and for my own sanity I needed to stop with all that and start LIVING the best I could with what function I have left.

If you come to the point where you do decided to stop meds, it might be a good thing to prepare for the onslaught of negativity that can come from people who do not know what it is like to go down this road (including some other RA sufferers, who believe that everyone will respond to RA meds...cuz not all of us do). Also, it's not like once you go off meds you can't go back ON them if needed...you have the power to change you mind and switch directions when something is no longer working for you.

I would always encourage new RA sufferers to at least give modern meds a shot, becuase it seems like they help most people. But once you've given it a good try, and if there's no benefits, then get off 'em...they are too dangerous and expensive to take. My doc said, "stay on the meds cuz we have nothing better to offer you." That doesn't sound like "wisdom" to me!

I had these same thoughts about six months after I was diagnosed. I was really doubting it was even RA, because I was (and am still) seronegative, even though clinically I have obvious symptoms. I had already tried MTX and experienced all the nausea and hair loss. I was scared to try a biologic, and scared to stay on prednisone. So for a while I wasn't on anything, but I did stay in touch with my rheumatologist. Then I got my hand and feet xrays re-done, and they showed an erosison that hadn't been there a year before. I'm 29, and the thought of my hands growing deformed really lit a fire under me. I found a new rheumy, started Enbrel, and am now giving MTX another shot. So, like others have said, taking a break now doesn't mean you can't ever go back if you change your mind or have a terrible flare. I would recommend that you do stay in touch with at least your PCP, so you have someone to go to if you need help. If you're exploring natural treatments and supplements, you might want to find a naturopath. (I see you're in Portland, so you wouldn't have trouble finding one.) Best of luck with whatever you decide!
Caren

I TOOK EVERYTHING FROM ... HELL THERE IS SO MANY. I AM FINALLY ON JUST MTX AND ENBREL.AND THE FOLIC ACID FOR MTX. I TAKE TRAMADOL ONLY WHEN NEEDED WHICH IS RARE. I FEEL GREAT. I THINK ITS THE MTX ENBREL COMBO THAT I HAVE BEEN ON FOR ALMOST A YEAR. ENBREL CAN BE EXPENSIVE BUT THEY CAN HELP YOU GET IT AT NO COST TO YOU. I HAVENT EXPERIENCED VERY MANY BAD DAYS. NO SWELLING. IM GOOD AS NEW. UNTIL I FINSH THIS, AND WATCH ME FEEL HORRIBLE ALL XMAS BREAK!LOL! KNOCK ON WOOD. BUT SERIOUSLY, I HAVE BEEN ON STERIODS, AND ALL THAT STUFF. MOBIC. I CANT THINK OF THE NAMES! GET YA HEAD UP SERIOULSY. CAUSE IF YOU MENTALLY FEEL BAD, THEN YOUR BODY IS GONNA FEEL WORSE! I HOPE YOU FEEL BETTER SOON!

P.S AND YES I HAVE BEEN THERE. IT GOT TO WHERE I WANTED TO STOP TAKING MY MEDS. NOBODY REALLY UNDERSTANDS THAT TAKING 10+ PILLS A DAY KILLS YOU MENTALLY. I FELT HORRIBLE. I HURT. PILL BOTTLES EVERYWHERE. NOT WORKING. IM TIRED. I WANTED TO STOP. FIGHT BACK. WHY ME? THIS CANT BE RA, ARE YOU SURE? IM DONE! .........
ALL THOSE THOUGHTS RUN INTO OUR HEADS, AND NO ITS NOT BECAUSE WE ARE DEPRESSED. WE ARE TIRED. WE ARE PISSED. BUT WE ARE STRONG, AND WE, YOU WILL GET THROUGH IT. THINK ABOUT YOUR FAMILY. EVEN ON THE TOUGH DAYS. TAKE A LONG BATH, AND REST. YOU SO DESERVE IT, NO MATTER WHO IS AROUND, OR WHAT NEEDS TO BE DONE. I GOT TO WHERE I LITERALLY ROLLED OUT OF BED. JUST TO GO SIT ON THE COUCH. NOT FUN. WORST TIME OF MY LIFE. BUT I DIDNT GIVE UP. AND YES MEDS, BIOLOGICS ALL COME WITH DANGER SIGNS. BUT HEY, WAKING UP AND DRIVING IS DANGEROUS. WE HAVE TO LIVE LIFE. AND YOU HAVE TO STAY STRONG. WHO CARES ABOUT THE SIDE EFFECTS THEY HAVE, LIKE LAYING THERE LIMBO ISNT A BAD SIDE EFFECT. JUST BE CAREFUL AND STAY CLOSE TO YOU DOCTOR AND MOST IMPORTANT KEEP UP WITH YOUR BLOOD WORK, THAT'S THE NUMBER 1 THING! YOUR BLOOD WORK, AND YOUR MENTALITY!

" Going off meds should not be considered "giving up". You are simply "changing your focus" and trying to lead the best possible life despite an incurable and crippling disease. "

I love this comment from one of the earlier posts. Do I think you need to take all things into consideration, including your physician's input? Yes. But ultimately, we live with our body 24/7. It's personal....not just another patient that may or may not respond to the treatment plans that are typically used for patients with RA.

Yes...I've felt like just throwing my hands in the air before and screaming "stop the madness!" .....but then I come back to reality and try to share my concerns about any treatment with my physician. Thankfully, she is open to listenting to me.

I hope for you that you find a peace in your search for answers. We will always be here to support you in your journey, just as you support us.

-Caroline

hi, kim!

yeah, i can empathize completely. i think most of us here can. it seems the meds aren't working, and we're just getting worse and worse.

well, i can tell you for a fact, my meds are working! i had to go off my enbrel for several months due to finances. and, Lord, let me tell you-i was in agony! couldn't walk, missed more work than went to, massive amounts of pain!!! many times i thought seriously about pulling the trigger...but, here i am. back on my meds, and feeling a whole lot better! i can walk! i can get out of bed-without help! i'm nowhere near 100%, and am not likely to be anytime soon. but i am finding out i can have some life.

moral of the story: you gotta do what you feel is right for you. it takes a while to find the right cocktail, and it's a lot of trial and error. but from my point of view, some meds are better than no meds.

i wish you luck, lots of gentle hugs!
brat

Don't give up.

My own mantra during difficult days was "It will get better." And it did, for me. I know people for whom that's not true (yet), so I've modified that to "It can get better," when speaking to others. But, trust with your heart that it will. Do whatever you can to make it better. I waited a long time for dugs to start working, had some bad reactions and terrible gaps between, and probably owe most of my good fortune to finally finding a drug that works very well (others did, too, but at a cost) with very little downside.

But, I want to encourage you to try everything you can think of to try to make peace with what you're dealing with, and to try to find a state of mind where you can feel satisfaction in affecting your own healing. I'm not trying to suggest you're not doing that; just trying to affirm that there are things you can to do to make your situation better. I don't have all the answers, but I can tell you what has worked for me, anytime you're interested. If you do "give up on taking all these meds," do so as a choice to try to get better, rather than giving up on the notion that you can get better.

Anything good that happens in our lives is multiplied immensely when we have a hand it in, and everything is better when out hearts are in it. Trust with your heart that it can get better.

Best wishes for healing,
doug

Thank you to everyone for your input and advice.. its so helpful that people here can relate with whats happening to me because its happend or is happening to you all....some have asked what meds i have been on..plaqlinil (sp) Mtx still on it...embrel..now humeria..one other i cant think of the name..its like celebrex...also vitamins..folic acid....lets not forget pred...lol im off it now by choice..was on it 12 months....thanks to all of you and to this site everyone is so wonderful...maybe commin here will help me to see the light that i as of today cant seem to find


Kim

I am with you Kim. It is so difficult to live with these painful diseases, and so heartbreaking when each treatment does not bring the relief hoped for. Lets try to keep our heads up, and live just one day at a time.. Hang in there,

Heather