how bad is bad? | Arthritis Information
Hi everyone. hope you are OK.
I am still relatively new to RA, have just started on meds (hopefully they will work!), I was wondering how the disease could progress if they did not.
My blood tests came back positive for RA factor and CCP but all other tests were normal.
I have no joint damage at the moment so I know I'm lucky in that respect.
I have constant pains in my hands/wrists (especially in the mornings as you well know), I have intermitant pains in my shoulders, feet, ankles, hips and knees. The pains in my feet/ankles and knees scared me a little as I found it very difficult to get around at the time. If the meds don't work are these likely to become constant like those in my hands/wrists?
Would what I have at the moment be considered mild RA?
I would like to hear your experiences with the disease progression, although I appreciate everone is different i think it will help me to know what I can expect.
Hello Jay77, There are so many different kinds of meds for Ra, so if one does not
work there is something else to try. What meds are you on now?
When I first got Ra my Rd got it under control real fast,The meds he gave to me worked
great for about 2 years before we had to change to something else.
I try to keep my joints moving , the more I keep them going the less pain I am in.
I still have flares but no real dammage as of yet. 11 years and counting.
I try to keep a positive attitude as much as possible .
Hi miami
Thanks for the reply, its good to know someone who has had Ra for 11 years has not had bad joint damage, as this is what is worrying me at the moment. Although the internet is a great thing, you do come across a lot of stories where this is not the case.
I am on Sulphasalazine which I believe is one of the milder DMARDS, do you know anything about this?
What sort of exercise do you find best?
The first thing that I took was Sulphasalazine. And it worked great for 2 years.
I am now taking Arava and Enbrel and that seems to be doing ok.Lately I have
been flaring and I think my Rd is going to switch me to Orencia. But he wants to wait a bit longer.
You will come across alot of scary things on line. Just take care of your self and let your
Rd know when things are not going so good.
I love to swim and for years was still jogging and walking for 6-10 miles a day. But can't do that right now so I just hop on my stepper and do tons of stretches. And light weights.
Welcome Jay.
The first DMARD I was prescribed 14 years ago was Sulfersalizine. It worked pretty well for me for about two years also....then onto plaqinel then MTX then we added Humira. Every few years I've had to switch to stronger medications or more of the same medications to get the same results but all in all I've managed really well. Mine is now considered moderate and I do have some joint damage visable on MRI's & Xrays but nothing horrible and nothing noticable to the naked eye.
Like Maimi said a positive attitude will go a long way toward getting your through this new life. It's not going to go away so you learn to play the hand you're dealt; right? Depression is your worst ememy. Not all depression can be avoided; but sometimes folks sit around hating their life so much it just overwhelmes them. Work hard to avoid that. Life can be good....even with RA.
Hope you stick around.
Welcome Jay -
I'm not familiar with Sulphasalazine, so not sure how long it takes to start working, but if it's like most of the others, I would imagine a few months? If it doesn't work, a 2nd DMARD could be added. I'm just going into year two - started with mtx and added enbrel at month six and feeling pretty good. What you're feeling now may not continue and worsen - the key is patience until you find your right mix. Be sure you have a doctor that you trust and feel comfortable with as they will be with you for quite some time. Internet is informative, but you do have to be careful with what you read and don't take everything for gospel or you'll go nuts. I am a little lazy on exercise (always have been) but I do enjoy my walks and try to stretch a few times a week - there are range of motion exercises that are recommended - I just need to remember to do them. Link below has tips on exercise that may be helpful (maybe I'll even read it over more carefully)
Hi Jay.......my RD said that usually erosion occurs in RA when their is long term inflammation. So if you aren't experiencing that you can breathe a little easier. Like the others have said, if the meds you're trying now don't work, you will simply try another, or add one, or change the dose. I'm not sure what you take, but I started out on methotrexate alone and it didn't cut it. But when Enbrel was added to the mix, the very next day after my first dose I was pretty much back to normal. So be encouraged, their are many many stories of people living full or nearly full lives even with this disease. I am one of them. :)Hi Jay, I'm one of the ones with damage done over a period of about 15 years before I was diagnosed. Once I was diagnosed I tried antibiotics, MXT, Enbrel, Humira, Sulfasalazine, Remicade, and now with an increase in MXT I went back to Humira and I'm in clinical remission. Since you've already started meds you're on the fast track and most likely will have little damage and a quick remission prognosis. Each and every RA/PsA story on the forum is different.
My only advice is to keep your family and friends close and to keep a positive attitude. Humor heals so much. Lindy
Welcome Jay,
I'm in the first year of RA. Started out really bad but then responded very well to MTX and prednisone which I am tapering off of. My levels were of the charts high and now almost perfectly normal. I hope to stay this way.
Best of luck to you for a quick response and remission.
Welcome to the board, Jay.
Here's to hoping the meds kick in for you soon.
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