just need to know this - is anyone's meds actually working long term for them - they (doc's)are always going on about treatment options for ra but from what i can see here everyone is still in pain, flaring and getting worse, or better for a tiny while before something stops working and there are a lot of people on strong pain killers so i guess the meds don't work - please tell me i'm wrong. Listen, please don't take this the wrong way, i know that sounds negative but i am genuinely wondering because it would be reassuring - does anyone every get better on the meds - i know you can't cure ra but what can i expect when i start these drugs - do any of them actually work well for a long time - everyone's experiences would be very welcome - just a bit of hope, you know. thanks guys - ps. don't hold back if things haven't been working out for you - its just to get an idea of how people respond to meds. Oh Julie. I have gotten so much better than when I first got symptoms. I was hospitalized, in so much pain, no sleep, always crying and my good days were very few. Yes, I have a lot of pain SOMETIMES but I also push my limits and probably always will. The Enbrel is working wonders for me and is going to continue to work wonders. I want you to know that I started out on plaquenil and relafin. It did help some and when it was not enough, rd continued to put me on more meds. Now remember. My RA is aggressive. I have more good days than bad and I am getting more and more good days. Most people really respond to the meds. They have some great ones out there, you just have to start somewhere.
Life with RA and any related disease is an unpredicable rollercoaster of good days and bad; of disease control, generally grottiness and different scales of flaring. It's a case of adapting and learning how to judge your strengths and weaknesses.
Best Wishes,
Moonie x
Hey Julie!! You finally posted something I can reply to...lol.
To answer your question, yes, many of us are much better with our meds. BUT many like roxy and you that have never had RA until now. It will seem like you are never getting better. It is because you are so use to being full of life and being able to do anything you wanted without limitations. And now you have to learn your limits, and are probably no longer able to do some of the things you were able to do. In many people's minds to them that is not getting better.
If you look at Roxy, like she said she was hospitalized and was unable to walk and now with her current arsonl of meds she is able to walk, not without a limp (she plans to get rid of the limp soon). But it is better then be hospitalized and unable to walk.
See, with meds your body builds up a tolerance to them, over a course of time. In turn to that the meds will not work as well, as they did in the beginning. That is why so many have been from meds to meds.
The only reason you keep hearing about pain, flaring, and getting worst, is because:
This is just how I see it, Julie. Many of others might have their views on your question. Which is probably better then mine. I'am not new to RA, but I still do not know much about it, medcial wise. So, in a sense I am still "new" to all of this just like you and the many of others.
I hope many more answer your question and give a better answer then I have provided. I was just so happy that I could finally reply to a post and actually "share" some of my thoughts and opinions.
going to try to make it over to www.rafriends.com while i can stay online. in case i don't make it...wanted to say hi and miss you - all of you.
Thanks Hula!! I hope your connection will stay soon! I really miss ya!! Everyone is different and in a different stage of the disease. I firmly believe because I caught this in the early stages and my rheumy treated it aggressively that I am in the good shape I'm in today. THANK YOU, MY RHEUMY! Just saw him today. I love that guy!!
Susan Julie, I have been on AP for six years and Plaquenil for 12, and the last three years have been great. I can wake up and know exactly how I am going to be feeling compared to the old days when I was scared to get out of the bed, not knowing what new pains and challenges faced me. The only pain that I experience on a regular basis is past damage. If I get a new twinge, it usually goes away overnight. My joint damage halted two years ago. I often forget that I have RA unless I move a damaged joint in a direction that it doesn't want to be moved, or if I walk too much. Great energy, no fevers, rarely sick, no morning stiffness ( I used to cement at night!), anemia has gone away, and I move great. It is like a miracle from where I have been in the past. I mean I was so bad off, I went to bed with my shoes on to avoid walking barefooted to having to pull the covers up with my teeth. Almost evey joint seemed affected. I could go on and on, but won't. Just to let you know that things can get better! Julie, will second everybodies YES, the meds work and all they said too. I think Joonies absolutely right on about us who get this later in life, after being able to do everything we really wanted too. I even spent 7 years in AK deep in the "boonies" no water (running), electricity, or tv, or phone. and loved it, boy, i sure couldnt do it now. I've had this disease for about 2 years and until last june, every minute not working was spent in bed, couldn't sit because my knees would lock up and I'd fall and i spent several hours on the floor because my shoulders (both) were as bad as my knees and hands and i couldn't get up. i also have a blood disease called essential thromboceptemia (i think) where my bone marrow produces way too many platelets, normal around 400,000 mine last week were over a million. the reason i brought this up is that specialist is the one who first suspected ra (my gp insisted it was only oa). and he sent me to the rd who has changed my life, just a little so far, but i'm so greatful for feeling this much better. he added plaquenil, then mtx, and i expect my first remicade infusion at the end of october. should be a whole lot better then. My only fear right now is that my platelet count up so high might interphere with my treatment, because the only treatment is another chemo called hydroxyurea and i was taken of of it in june for all the ra meds. I know i'm making thisa little long, but the reason i'm always around when nobody else is, i work 3rd shift, and the dr. wants me to basically stay on it 7 days a week because its not so hard on the body. OK. enough, already, julie, the meds work, they'll find the right ones for you. mary Hi Julie, Yes the meds do work. And you also know when they need to be bumped up. I started back on methotrexate in June and was doing GREAT until recently again. My rt wrist will not flex (cannot open jars, etc) and my left ankle and foot feel "broken" (to explain how achy it feels). I see my rheum doc on Tues and will see how to tweak my meds so they cover the pain and AM stiffness. My AM stiffness used to last a very short time, but it's now mid morning or lunch before I stop feeling like the "Tin Man" in Oz on a quest for his can of oil so he could start moving again. Take heart in what everyone here has told you. Overdoing it (as Joonie suggested) will bring on more pain, fatigue...and we're all subject to flares in varying degrees.. Above all keep in touch with your doctor so the two of you can collaborate on your needs and desired results. Take care! Molly Bee I can only agree with everyone. When this flare started in Feb 04, I couldn't walk, I fell down the stairs twice, I was so swollen I couldn't wear gloves or socks. I also used to pull the covers up with my teeth... I'm not great, not back to mormal, but I am so much better than I was. We are still tweaking my meds. Plaquinil didn't do any thing, low dose MTX did nothing, Enbrel didn't work. Humira works, sort of, but needed higher doses of MTX .. Right now they have cut my MTX back, due to severe bruising, so I don't know how well the Humira will work. My RD has asked my insurance to approve weekly Humira.. I figure tweaking is something we have to live with til we find the right combinations. I also over do, and throw myself into flares.. There is a lot of denial going on, which makes all us want to try to push ourselves.. Maybe we have to decide "THIS" is normal. the way we are most of the time is what normal looks like for us.. I agree totally. The meds work. It's a way of life for us. Yes, there comes a time when the meds lose their effects...but that doesn't come as a surprise to any of us. I've been on many different medications over the years. Almost all worked for a time....then I'd either add more or switch to something else. That's just the way it goes for us. We accept that as a way of life; and for the most part we're very grateful for it.
Then recently I saw a new RD here in Orlando, I was seeing my internal
medicine doc but he wanted me to see a RD. This new RD cut back my
prednisone, added more MTX . After much tweeking of the meds...and
realizing that the regular meds weren't wroking for me anymore he
started me on humira. I feel like I've gotten my life back, not a
totally normal life, but much better than it was. I can finally work
out in the yard and clean my house the way I think it should be done..I
don't feel that it can get much better than it is or I wouldn't have RA
anymore
The doctors and the patient have to play w/meds to see what really works, and it takes much time and patience.
Leslie, What is AP?
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