What really controlls your RA ? | Arthritis Information

Yes i would like to know who is actually well. This is for those that are getting better seeing true progress on the long term. What are you taking? How long did it take to make you feel better. I need some insperation and hope. For the most part, I feel pretty much normal. My left hip gives me some grief, but it doesn't stop me from wrestling with the kids, running up and down the stairs, doing yardwork, housework, etc. I do have to take at least one day on the weekend to vegetate, but I suspect that many non-RA working parents have to do the same.

Fish oil and plaquenil seem to be doing the trick for me.
Hi Milly, I have been doing pretty well for a few months after having this disease for about 3 years. I have been giving myself enbrel injections once a week. I still have some days when the weather changes that I take vicoden but my energy and stiffness have gotten so much better! AS you can see by the meds I am taking, I take xanax and I think that helps alot because for me stress is a big factor and makes things worse. I don't take it every day but alot of times I take it at bedtime because I have a hard time winding down. My mind goes 100 mph. Hang in there Milly, things will get better. Have faith. What meds are you on?

I hope you find the right combo. It's out there it's just not easy to find.

I wish you hope, and peace!

take care

Hey Cindee I think you mean 0.25mg Xanax. 25mg would be anywhere from 25 to 100 tablets, depending on the strength

Jasmine, yep it is 0.25mg. Sorry my bad. I would be a zombie if I took that much. LOL

Hi Milly, I'm in clinical remission; no inflammation, swelling, all labs are normal and it's only taken me 10 years to achieve this status!!!! Been on many dmards and biologics and when Remicade failed decided to work backwards and I went back on Humira along with MXT, Sulfazaline and I've been in remission for about 5 months. I still have flares from PsA and pain from damage but overall I feel great. Like CinDee said "it's just not easy to find".

Don't give up. I hope you have a great RD who will work with you. Lindy

Hey Milly!

I have been doing pretty good since I got my last infusion. I have very little pain, nothing like I was having, and a little bit of swelling, but again nothing like I have been having. It feels pretty good, to be able to see and feel my knee caps again. I will rub on my knees, just because I can feel the bones again!

Today when I was walking into Wal-Mart I saw my reflection in the door windows and I noticed that my arms were not all bent up like a T-Rex... they actually were hanging by my side and not in front of me.

I still have the fatigue... but better than the stiffness and pain. I do not gel that much now. It is pretty nice to be able to do things for myself and be able to get off the couch by myself.

Heck... I do not even count down the hours to take my next dose of prednisone. Where as before I would be extra stiff, swelled and in pain and still have 6 hours to go before my next prednisone dose. It was like that with my last infusion; I would not even think about when it was time to take the prednisone again.

I am very HAPPY with the way the Remicade/Imuran/Pred combo is working for me.

So... Milly... it took me 3 years to find something that actually worked and made me function; grant it... my right timing and dosage has not been found yet, but I am happy with the few weeks I do receive relief and able to function like a "normal" person to a certain extent.

I know you will find your combo really soon too.

Much Hugs!

Hi Milly

I'm going into year two (dx 2/07) and have been on mtx (20mg) and relafen (1500 mg) for a little over a year and Enbrel for 10 months. I'm still working fulltime and while there may be days that I'm tired, it's not as bad as when first diagnosed. I try to not over-schedule myself and enjoy my naps on the weekend. The stiffness and swelling is minimal - that doesn't mean it's totally gone, but close. The big clue for me that the meds were working was when I could open a binder clip at work this past fall and not use both hands to do it.

I hope you find your combo soon -

I am doing very well.. though not in remission as yet... with my dose of DayPro 1200 mg daily/MTX20mg per week/enbrel 50 mg/week. I have alot more energy... My disposition is MUCh better.. and I too can feel my knees.. I have a funny bump on the side of my left toe joint. Questioned the dr about the joint changing. He laughed and said.. it's no different than it's been... You can just feel the bump out now cause the inflammation is gone! My fingers are not like sausages.... I can see both sides of my ankle bones.. (nice to have dainty ankles again) My morning stiffness is still 15-20 minutes but getting much better than it was at almost an hour four months ago. So, according to the AMA parameters for improvement, I've improved 23% in 6 weeks!! I'll take that!!

I wish for you to find what works!! Milly I am a lucky one. Although initially I was a real mess and my doctor still refers to my RA as severe- I don't agree.

I am only 6 months into this and I feel I am doing very well on MTX & prednisone. Down to 8 Mgs. prednisone to date, next taper is tomorrow.

I work 2 jobs and have not missed a day of work since my medical leave-I returned 1/26. My hands, wrists, ankles are what bother me usually- but not enough to have to take anything for the most part. I get right out of bed in the morning. Sometimes after sitting for long periods at work I get a little stiff but I can get myself going quickly.

I wish everyone could have the success I've had in getting their RA under control. I don't care what my doctor says- I think my case is mild.

It's been one year since diagnosis for me, and I'm doing better than one year ago, but still working on some stubborn ear ringing and neuropathy. But when I look back, I can see I'm much better and my pain, though daily, is minimal and easily managed.

I have a better example for you. A woman who works where I do volunteer work was hit suddenly with RA. She was a mess, swollen everywhere, in horrible pain, and barely able to walk. After just a few days on MTX, pred. and a pain medication, she's nearly back to normal and will probably do even better once the MTX really kicks in. There are success stories out there, but many aren't as quick as we would like. Hang in there. We're so much more fortunate than those that came before us. And they didn't have this great forum for information and support either. Yep, overall I'd say we're leaps and bounds better off than earlier generations. Your day will come. I feel certain of it.

Rituxan is the first med that has ever come close to controlling my RA. I have been able to stop MTX and prednisone. There are treatments that work. The problem is finding the combo that works for a specific person. That can take some time...almost 9 years for me.

Hey-I say time and again that I am a prime example of an early dx and aggressive treatment. RA hit me out of nowhere in October, and hit hard. I had braces on both hands, could barely walk...My labs (RF, CCP) predict a very aggressive RA. Mid December I started plaquinel, and early January started MTX. By February I was pretty much back to normal. I have had one foot flare since, that's it.

I'm convinced of two things. One-if I had to wait months more, my body might not have responded as well to the meds. Two-the combination of MTX and plaquinel was the ticket. I believe it is one of the best starting points, then go from there.

Hey Milly -

For me it was Minocin. I am back to pre-PRA levels. No pain, no flares, only about 15 steps to the bathroom stiffness in the AM. I want that gone too.

Think about it, girl! I'll hold your hand.

Hugs,

Pip

I'm still in the waiting period trying to find my right combo, but I wanted to say thanks for starting this great thread, milly! I continue to be amazed at how different things work for different people...I truly believe the RA diagnosis actually contains about 10 different diseases that we just don't know enough about yet. And I also want to thank everyone who posted...it is good to see that there is a light at the end of the tunnel, even if it's a very, very long tunnel for some.
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