I'm new to RA and this board. You guys scare and inspire me.
I saw my RD for the first time recently, and probably won't see him again for two months, at which time I go on Plaquenil. I was having a fairly rough time last month but PCP gave me a prednisone dose pack which helped for a while.
Can you help me with some questions?
1. Is there value in taking NSAIDs (ibuprofen or celebrex) regularly even on better days?
I've read that taking NSAIDs regularly helps keep the swelling down, and also that it can take a couple of weeks of regular use to get the best effect from them.
On the other hand, on good days, or half-days, when the aching isn't too bad it seems like I should be giving my system a break from the pills.
I haven't tried the Celebrex samples my PCP gave me yet, scared off of the cox-2 warnings, but I'm about to get over that and break out the samples.
I'm a long-term ibuprofen user (for another problem that is mostly resolved now) so I'm already at risk for NSAID side effects, so I'm inclined to take as little as the pain will allow.
On the other hand, if skipping it is bad for the swelling in the long run.... Which leads to question #2.
2. Do you guys understand why NSAIDs, and for that matter steroids, do nothing for the disease process?
They say damage comes from the inflammation. NSAIDs and steroids reduce or control inflammation, yet they do nothing to prevent damage. What part of the formula am I missing?
3. Once you start on the DMARDs, how do you know if your RA is under control?
Is this determined only by blood tests? By appearance of the joints? By pain? I'm RF negative (so far, but I understand this will probably change). Joints look normal too so far except very occasional swelling and redness, though they almost always feel swollen, tender, achy, etc.
I wonder about this under-control thing because I'm trying to understand when you get advanced up the chain to the stronger drugs.
In other words, will I stay on plaquenil until there are signs of joint damage or poor lab results or the pain is too intense?
Last question:
4. How do you guys manage the RA mind game?
The article Roxy posted about arthritis and depression is great. It seems like mental discipline and strategies for a positive outlook make a huge difference.
But how do you keep yourself in the present?
If it's true that trying to think about your life and condition ten years in the future will make you crazy--and I see that it will--how do you turn off that natural impulse to look ahead?
RA takes away so much that makes us feel normal. Does it also take away that normal experience of thinking about our futures? If so, is that a gift or a curse?
Thanks for helping with these questions.
Hi
I know you must be scared and probably we get even more scared after we talk to the doctor. Its a long process....and it is a process I too started out with the lower end drugs....I had no erosions at first; however in a very short time...it progressed like wildfire. I entered a clinical research study for an IV drug called Orencia and since I had never been on methotrexate..the clinical study was with Orencia and metho......it called for a high dose of methotrexate and six months into the study I had to drop out because it really messed up my liver counts now I am on enbrel (self injection) and arava.
This really doesnt matter probably to you but I wanted to let you know that it can and does sometimes progress rapidly
It is true that The Nasids do not prevent progression of the disease and not all ra buddies progress rapidly soooo that may be a good thing for you.
I do get depressed over the constant pain.....but I try to look inside and to God......who has a plan for all of us.....sometimes it is sooooooooooooooo frustrating !!!...I would like to say take baby steps at first it can be so over whelming.....and although I am a Grandmother........I try not to look to a future with RA.....that is sometime more difficult than the pain.
What I can tell you is that you are not alone....everyone here supports and above all understands....
Welcome to the board! You will find great support and very knowledgeable people here.
There is some value in taking celebrex even when you are feeling good because it does help to prevent the swelling and aching. My personal feeling is that I am not going to wait until I'm feeling cruddy to take something. I would rather prevent feeling cruddy and take the meds. The pain and swelling from RA can pop up anytime. You could wake up feeling good and then a few hours later be down for the count.
NSAIDS and steroids do a little bit to help with the disease process by keeping down the inflammation that leads to joint damage. But they do not stop the progression of the disease. RA hits people differently. Some of us are progressing slowly while others have been hit by that RA truck. DMARDS may help to slow the progression by blocking TNF's (Tumor Necrosing Factors). TNF is the protein that the body produces when there is inflammation. The TNF promotes inflammation and signs of inflammation.
Many of us are RF negative but that does not mean you do not have the disease. That is only one tool in diagnosis. You will most likely stay on Plaquenil as long as it continues to work for you. It is a very mild medication. It can also take 3-6 months before seeing any change with Plaquenil. If you feel it is not working for you, then you need to call your doc and get in and discuss med changes. Usually you can tell that a med is not working for you by the 3 month mark. If you had no changes in swelling and pain then that med is most likely not working for you. Some of us have had immediate changes with meds, some of us a little slower, and some of us have gone thru a few different ones to get the one that worked best for them.
Ahhh yes, coping. There are good days and bad days. This board is great. Getting support by people that understand helps a lot. I use relaxation CD's, music, blog, vent, cry, try to keep my brain busy, and snuggling with my husband. Coping mechanisms are as unique as the individual. I try to find humor and silver lining in everything. My kids keep me in the present. My day to day life keeps me in the present. I have learned that I can't predict the future so I have stopped stressing about it. I just have to follow the path that has been laid out for me. And try not to do it kicking and screaming lol. Your future is what you make it to be. I feel that at one point we all get depressed over the pain. I had a total nuclear meltdown the other day. I felt soooooo much better after that. It can be cathartic and cleansing. It helps to talk to and with people that understand what you are going thru and all of us here do understand. You can post you are having a cruddy day and you be overflowing with well wishes and sometimes humor to help cheer you up.
Take everything day by day. If you feel like you need support there is no shame in that. If you are in pain and your pain meds are not working, call your doc. That is one of the hardest things to do. We are all embarrassed and find it hard to ask for pain meds. For me, it is because I feel like I am weak.
If you have any more questions, by all means ask them. You couldn't get better answers from more caring people anywhere else. I hope I helped you out somewhat.
Thanks Gram and Grammaskittles. One thing about you guys is you're honest, real, and still positive. I'm learning from every person's story.
Really good points about staying in the present. Accepting RA and what's in store is going to take time, but for now I need to keep my mind as busy on other things as I can. I don't have kids to distract or motivate me. I work at home some days and work away some days. The days I am home are often harder, mentally (I realize now that I read your comments), because there's not as much to distract me.
It's a catch-22, I suppose. It's a luxury to work at home some days and take rest breaks as I need them and do more to get comfortable. And yet the getting out is so important mentally.
Thanks for the advice on meds too. I'm going to start taking the celebrex regularly and hope it means more good days between now and starting the real drugs. I'm hoping to avoid steroids as much as I can, though I can see from some of your posts that it may not be possible. One day at a time, right?
RKGal
Hi Welcome! I hope you join us often.
NSAIDs may not be classified as DMARDS but they can improve the quality of life a great deal. It feels so much better when the swelling is gone and you are able to move with ease. The right nsaid can do that for many people. Keep trying until you find one that works and doesn't bother you. Always, always, always take with food!
I've had RA for 30 years. Came down with it my Jr year of college.The 1st decade the only treatment I had were nsaids. They were/are a god send!
I cannot look ten years down the road. Today is just too much. How do I control what is happening today? How can I improve it? What else can I try? Who can I talk too that can help me cope with this?
What can I do differently?
Coping is changing the patterns in your life. Oh, that is so hard to do. Especially for some of us, like me, that have to be doing everything no matter what our bodies have to say about it.
Most people respond well to the treatments. You have to keep that in mind. Then each of us have some particular thing that does not work right. Here comes a posting with questions. But then, someone else has already been through it.
I've learned more about my health in the last few months from this board than the years I've been reading about it.
Becoming educated and making friends that can understand where you are at really, really helps. I'd go off the deep end if I didn't have some special friends here.
Marian, thanks for the welcome and the advice about taking with food.
Deanna, your comments made me realize something. It's not just that having other things going on besides RA keeps us in the present. When it gets really bad, that keeps us in the present because the present takes all we have. I had forgotten that.
A couple of years ago I had a bad infection that caused so much pain that I could only stay in the moment. Sometimes it took everything just to get through the moment and to manage the minimal acts of living. Even recovering from major surgery this year (for something else) didn't keep me totally engaged the way that infection did.
I guess I've been in training for RA for a while.
And, I can see where this board is a great learning tool. I've already found answers here to a number of questions I had, even before I posted a question.
RKGal