Hi,
In early August I was diagnosed with RA. My rheumy put me on methotrexate and naprosyn and told me to come back in November (or earlier if needed). It's now getting towards the end of October and I'm wondering what I should be expecting. I still get occassional flares and have new joints becoming active. Yet, I have experienced relief from the worst of it. Do I need to be more patient and expect the the methotextrate still needs time to become effective? Should I hope to become pain-free, or expect that I will likely always experience some level of pain?
On another note, it's interesting how my perception of pain has changed over the last few months. Pain that may have stopped me months ago has become almost background noise in my life.
Thanks for taking the time to read this,
Joy
Joy, I wish we could have answers for you but RA effects everyone very differently. For many many people methotrexate (mtx) is very effective. It takes time for your flares to be controlled. Are you tolerating your meds well? If so, that is good news already. Just remember RA teaches patience whether you like it or not. It also teaches "pain tolerance". Things that used to hurt me, I just ignore anymore. I have not been tolerant to my meds so my RA has never been under control but better for a few days with Enbrel.
I don't know if you ever become pain free with RA unless you are one of the few lucky ones that go into remission. There are different categories of RA also - mild, moderate, severe. I think there is one more but I forgot. The meds have ruined my memory. Anyway, you will find out soon enough what category you fit in.
Anyone remember the website Wayney gave us that tells you how to categorize your RA? Mine is considered severe because it is uncontrolled and I have continuing damage. I am going to physical therapy with water therapy. That helps me a lot.
Good news you came here. You will find many answers and tons of support. Welcome to AI.
I'm unmedicated right now, save for some home treatment with Aleve from time to time. I still have little flares, and achey spots, and things that go pop. (lol!) I really think its to be expected to a certain extent. With something like this I think it's a bit too much to expect to be pain free 100% of the time. But that's not to say you should let the pain interfere with your life, or inhibit you in any way. If it's too much you should always talk to your doctor.
Pain can also be a good thing. Pain is your body's natural response, don't forget that. If participating in an activity that you usually do, and you find that it's starting to become painful, it's probably time to stop. And that's okay, you don't want to hurt anything more than it already is!
You sound like you're doing pretty good so far. Keep up the communication with your doctor! That is vital! :) You know, since you are newly diagnosed, and you seem to have some questions, you might want to go ahead and book an appt before Nov. What's the harm? You're new at this, and you deserve to be able to speak with your doctor when you feel the need. He did say you could come in earlier, and I don't see the harm.
Good luck to you!
Katie
Thank you, Katie. I do have list for my dr. next time I see him! Up to now I've been mostly asking my questions to my contact at the Arthritis Society. I've been trying to stay patient until November to put less stress on our medical systsem. It can take months to see a rheumy here (Canada) and I know that there are so many who are much worse off than I. As such, I thought I'd post my concerns here to get input from the compassionate experts on this forum. I've been reading the postings here for some time and knew that I could count on you all for some informed advice.:) Not a problem! I understand what you're saying about not wanting to tie up the health care - but think of it like this:
Go ahead and do everything you need appt-wise until you feel comfortable with the disease. Once you do, hopefull you'll be able to go to the Dr less, and do more of your own medications and more self help, then you won't be "tying them up" OTHERWISE....if you wait too long, and are missing something important that needs to be taken care of(like joint damage that needs to be addressed) and you don't go in and it doesn't get caught, you could be much worse off and end up as one of the people who "needs it" more than you do! What a twist! LoL
Just food for thought! :)
Katie
Hi Joy...welcome!
What amount of mtx are you taking?
I'm in Ontario...where in Canada are you?
Kelly
continue taking your medications and taking care of yourself. I had my first symptoms in april 2004, and didnt get diagnosed to august 2004. At that time I was still running. Soon -- around december 2004, and Jan-march 2005 the condition had gotten crippling. I wasnt staying on my medications at the time.. because not only did I not understand RA, I was too fearful of these new medications.Welcome Joy!
Ra affects everyone differently. I do Humira and Methotrexate. I have found a good amount of relief but still occaisonally flare on bad weather days, when I'm stressed, sick, or overdo it.
I keep a daily journal that I print out and take with me to my doc appointments to better track how I feel and how well the meds are working.
You deserve to feel as well as you possibly can, have your questions answered, and be as informed as possible so please don't think you are tieing up the health system.
Good luck to you and keep us posted on how you are doing!
Joy, I love hiking, biking and cross country skiing. I now love swimming. I am an eternal optimist. I have not given up hope that I can return to the things I loved, maybe in moderation or MAYBE the way it was. GO FOR IT, FORGET EVERYTHING ELSE AND KICK ASS Liz & Katie: Thank you both for the important ideas. I promise to keep you all posted on the thoughts of my dr. when I do visit him (sooner or later Hi Joy!
Hi Joy -
I think everyones experience is different. I would always continue to push your RD and get as much help as you can.
Grammaskittles: Great idea on keeping a daily log - VERY smart! I'm gonna start that today.
I'm in St.Thomas...near London...it's been cold and rainy here. My children both lived in Ottawa a few years back while going to Algonquin College.
I'm thinking that at 15 mg of mtx, your doctor may just increase that a bit if you're still having pain. Or maybe add plaquenil. It's good that you've tolerated the mtx well.
I was diagnosed just about a year ago. At first I thought I had carpal tunnel syndrome, but then things just didn't get better. It got to the point that I couldn't write, open a door, etc.
I went to a RA doctor and he clinincally diagnosed me the first meeting. I started on MTX and very shortly afterwards Remicade. The transformation was amazing and I was back to doing all my old activities. I flare now and then, but the treatments are effective.
Best wishes to you,
Randy
California
I am glad that the meds are working for you......
I have only been diagnosed a little over a year. I participated in a blind clinical study for orencia....I saw no relief and because I was taking methotrex I had to be taken out of the study a few months ago because my liver enzymes went out of control....I have begun enbrel.....and have yet to see any relief....trying to be patient because I know none of these meds are really fast acting.
I will pray that you are one of the lucky ones and actually see relief soon.
My daughter lives in Canada too....where are you in Canada.
Take care my friend
I
Hi Joy Welcome.
I have a cousin named Joy. 9 days out of 10 she looks like she just sucked on a very sour lemon! I'm not kidding!!!Hi there! I was diagnosed in April or so of this year. I thought I had Lyme's disease initially but the blood tests proved otherwise. I was at a point where walking in the morning was impossible (sliding down the stairs on my butt was the norm - then I new I was in trouble). The Dr. started me on Mtx and naprosyn too but they hurt my stomach terribly, diarreah, loss of appetite and horrible cramps. The mouth sores (even on the folic acid) were enough to make me not eat. Now I'm on Enbrel and have been (proudly) giving myself injections for the past 4 months or so. I still have aches but no where near as I was last spring. I have good days and bad. I have days where I can climb a mountain and days (most) where I can't get up off the couch. I take the mountain days and walk walk walk. I walked three miles the other day with my friend - granted I was dragging my left leg by the end of the evening but the freedom of walking was worth it.
My advice to you is listen to your body. If you feel good, REST ANYWAY - don't push it. I find the key to dealing w/ the RA now anyway is REST REST REST! Anyway, it's nice to meet you, welcome.
HoneyWelcome Joy! Stay positive.. and remember you will know the most about your body and how this disease affects you. I remember someone told me it would take one full year until my meds were stable. That was true.....for me. Good luck to you!!Thanks again for your kind welcomes and thoughts! Update: I've taken your advice and have moved up my dr. appt by 2 weeks. I do have many questions that I need answered ... plus am starting to become concerned about the "bump" that popped up a couple of weeks ago on the outside of my right baby toe.
- Joy
Joy, it could be a nodule. Usually nothing to worry about, but def. something you want to show your Doc. Just don't panic yet! LoL :)
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