Your Past Five Years | Arthritis Information

I was thinking about the many medications we take and I started wondering what the general treatment result is for this forum. If you've been treating RA and/or it's related diseases for the past five years, how has your treatment affected your condition? Would you say you've stopped the progression, just holding your own, or feel that you're slowing the progression but not really winning the battle? Do you feel better now than you did five years ago? Jesse882008-03-25 12:19:39I started MTX many years ago. I'd say 6 years ago now. It has made a huge difference for me after spending many years on weaker DMARDS with minimal success. I did have to add Humira and used that with great success for two years as well. I was taken off of it for unrelated problems (Long story) but managed a really good level of success without it for about a year and a half.

Slowly but surely though a lot of my symptoms are becoming more bothersome and I may have to add something back again soon. I go through spells where I think "Oh, here we go again." but then rally and do well for a while. SO; you never know. It's prety unpredictable.

To answer your exact questions; YES, I feel better than 5 years ago.

I feel I've slowed the progression. I've learned that with medication I've been able to slow the progression but not stop it all together. That's all the doctors promised me from the beginning.

I was one of those that did not respond at all to mtx. After being on it for nearly 9 years, along with many DMARDS, I got on enbrel two years ago. Until Enbrel, I felt my disease was progressing rapidly, (as evidenced by x-rays), but since enbrel, my x-rays show no additional joint destruction.

Five years ago I was barely participating in life. I feel so much better now, that I sometimes forget I have a disease at all.

Bizz~During that 9 year time frame on MTX what dose were you at and what other DMARDS did you use in connection with it?

I need to start thinking about what options I have. I might be able to go back on Humira; but to be honest.....I hate those injections. I've thought about this at times over the last year when I thought I wasn't going to be able to make it on only MTX but I've always turned a corner after a few weeks. This time I'm not so confident. Curious to your experience with other DMARDS.

I was just diagnosed in Jan. The meds have worked unbelievably well. I'm almost 100%.

So, could I just add to the question? I'm curious if anyone experienced instant relief with MTX, and then has it continued or eventually ceased to be effective?

Good question. I have a friend who used it successfully for eight years and just recently had to stop it. I know there are others here who have been using MTX for a long time too, with continued good results.

Why did she have to stop it? Was it due to lack of results or other problems?I've been using mtx for about 16 years now...I've had to add plaquenil and sulfasalazine, plus increase the mtx over the years. I'm getting to a point now where I think something else will be needed because in the last year I've been having more problems with flares. I really don't want to add anything though. I think I'd rather continue the way I have even though there is increased pain.

Over all of these years though, mtx has worked very well for me. But I have had a lot of damage to my feet and a bit in my hands which also causes pain.

MTX since August '06. Went up to 25 mg injections, I was near perfect. I've got issues with injections (totally mental, but real for me) so have switched to pills with Arava just added on last Thursday. Tooties are tender again and can feel it in my hands. Hoping to get as good as before. Still, waaaay better than when dx'd.
Lovie, my friend had to stop the MTX because her blood work was not good. She has issues with her pancreas (sp?) and the MTX was aggravating it. Unfortunately, she has multiple problems, some from working at a dry cleaning store when she was younger. Breathing in those chemicals really did a job on her. I feel so badly for her because the pain is coming back and the iris is getting inflamed again, threatening her vision. She's really out of options. She's been through them all. For over 5 years I have been using Enbrel and Arava. Every Fall ( Sept-Oct.) I have a small flare , hands or feet , thats when I add a small dose of predizone . That has worked wll for about 10 years .

This last Fall my Rd suggested that I try Humira instead of Enbrel . I was quite open to the idea of taking an injection once every 2 weeks instead of 2 a week.

Within about 1 week I was in so much pain it was like I have never been treated at all .

Of course I called my Rd and he aked me to try it longer because it takes time to get into my system .

Well 6 months later I was still not doing so well , my right knee and ankle are still so swollen and in tons of pain , that I told the doc that I needed to go back to Enbrel .

I have only done one injection so far but am real optimistic that I will be better real soon.

I am doing the once a week injection instead of the 2 a week .

I still work out but not as much as I use to . A light jog when I can , weights (light ones)

and walk a few miles when I can .

Maybe I just need a tropical vacation .

I'm surprised at the small number of people who have said they're doing pretty well years later. It's a little disturbing. Maybe those people just don't post because they're too busy living their lives. That would make sense.

AP has given me back the quality of life I took for granted before RA brought me to an almost complete stop! [QUOTE=Lovie]Bizz~During that 9 year time frame on MTX what dose were you at and what other DMARDS did you use in connection with it?

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I first started out on cyclosporine, until I was officially diagnosed with RA. I was then put on indocin (an NSAID), which gave me one helll of a seizure after my 3rd dose. I then went to mtx, working my way up from the lowest, to the highest dose for non-cancer patients (25mg). I tried the injections as well as the tablets. They made me horribly sick at my stomach for 2 days every week, and it was just interfering too much in my life. Besides, it wasn't slowing the progression of RA at all, so it was pointlessly only adding to my mysery. I also tried Arava, starting at 10mg a day, working up to 20mg a day, but it raised my liver profile to an unacceptable level, so I went back to mtx. While I was dancing back and forth between DMARDS, I was also taking 1500 mg a day of naproxyn, which, unbeknownst to me, was making me forgetful and in a fog. I only discovered this after going off of it.

When I finally broke down and decided to try the biologic route (enbrel), I didn't think I could learn to do self injections (my employee health nurse always did the mtx ones), but I tried....and 3 days after my first dose, my inflammation, stiffness, and joint pain were gone. It really happened that quickly! I'm now only taking enbrel...no other NSAID, no prednisone (I've always refused the steroid approach), and I've been virtually pain free for over two years now.

Bizz, that's encouraging. But your comment about a seizure really caught my attention. My sister with RA has been doing great on Plaquenil, a low dose of prednisone and Ultram daily for nine years. Recently she started having an occasional seizure and your post got me wondering if one of her meds could be the culprit. She was told Ultram could do this but after so many years, they didn't think so. She also had a minor accident a few months back and now we're wondering if it was a seizure that caused that or if the accident caused the seizures. She can't drive for 6 months now. Anyone else have problems with RA drugs and seizures?

The encouraging news about the AP therapy is an option I'm keeping in the back of my mind for future reference. It's good to know there's something else out there that may help when all the other RA drugs fail.

Jesse882008-03-26 11:08:30I have not had probs with seizures...but I do get these "ticks" things where my arm will jerk or my head will jerk to the side..... just outta the blue...that can be scary. THey are slight, notice them more in the evening, sometimes about 20 or 30 min after taking my vicodin. I need to start documenting I guess......I was on Humira weekly for two years and had really good results. My doctor eventually took me off of it though because i was having a lot of problem with numbness and tingling. Those are listed as some of the side effects of the medication so he thought if we stopped it they might go away. (He's seen patience where this was the case) But; it didn't so He sent me to a neurologist who discovered the B12 defincincy and after taking B12 injections the majority of those problems have gone away. He really thinks the B12 was the cause of those symptoms.

I was worried going off Humira because I was doing SO well I didn't want to back slide. I've done surprisingly well though. While on Humira we had decreased my MTX to 20mg but shortly after stopping Humira we had to increase it again to 25mg (Wish it could be higher). I've managed with minimal problems for a good while now.

It all comes in cycles I think. I spent years on weaker DMARDS like sulfersalizine and plaquinel before moving to MTX....then Humira. Even back then I had roller coaster results at times....and then long stretches where I did great.

I think one thing you should understand Jesse is that folks with RA manage far better than they did 20 years ago or more. Alot of things you read on these message boards are complaints. Folks looking for answers from folks who may have experienced problems simular to theirs in the past. Rarely do you see many threads bosting of good results. That's just typical. It doesn't mean there aren't plenty of success stories out here. A lot of times success is also in our minds; and as far as I'm concerned I'll continue to consider myself a success!

Lovie, I think you're right about there being more complaints, just because that's the nature of this board. People need a place to vent and get advice. I was just curious as to how the who RA thing plays out over time. I guess this isn't the place to get a true picture of what the average RA patient's results are after years of treatment. There are some success stories though, and I love to read about them. I haven't responded to anything but prednisone yet. If I could be on 10mg-15mg a day i would be in heaven. But they won't let me.

5mg gets me around with cane and riding buggies at the store.

Mtx was rejected by my body, i swelled and couldn't breathe.

Plaq did the same thing.

I can't take biologics due to a reoccuring infection.

Right now i have been on 10mg of arava for about 6months and so far no difference.

So, no changes really for me, just lots of damage, i have odd shaped body parts now.

Gosh, bubba, I'm sorry to hear that. Thank God there are new medications coming down the pike. bubba I am close to that. mtx made me really sick, and so far I have not been able to get biologics because of other health problems. I have funny looking joints too.its only been 4 years for me, but NOTHING worked until Enbrel combined with MTX, then when that pooped out Humira/mtx, then when THAT pooped out Remicade/MTX.. without the MTX the biologics might as well be water.

and though I have bad days and have NO days without significant pain, I'm far better now than I was 4 years ago.