I'd like to get your thoughts on the medications we take and how/when you decide it's time to add to or increase your meds. I know your doctors have a lot to do with the decision, but I want to know what you think. More specifically, if you're on medication but you still have occasional pain which indicates your disease isn't completely under control, how do you know if it's safe to just treat the occasional pain episode with a pain killer or if you need to up the meds? How do you know when you're taking enough to ensure no additional damage? Does even the occasional bout of pain, stiffness, spasms, what-have-you always mean there's still damage occuring or is it just a harmless symptom of the disease that can safely be treated by just addressing the pain symptom itself?
I and many of the newly diagnosed people here will no doubt have to make future decisions about increasing medication and it would be so helpful to hear from the veterans who have been dealing with this issue for some time. I've been struggling with the decision to ask the RD for more medication because I still have occasional pain but was really trying to avoid it because I'm not sure which is more dangerous in the end, the meds or the chance of more damage. It wasn't until I started with the ringing ear problem that I knew I had no choice and I'll have to increase the meds if the RD or neuro suggests it. BTW, my RD was able to get me in to see the neuro in three weeks instead of the three months I would have had to wait if making the appointment on my own. I see him next Friday. Hopefully he'll be more helpful than the ENT doctor was.
Even after this episode, I and others will have to decide our medication futures and I can tell you, right now it feels very daunting. The need for the increase may not always be as obvious as it is now, with my hearing problem, and it may not be obvious for others as they try to decide. Your thoughts on this would be helpful. Thanks.
Joy, that's a good question. I'd like to know the answer to that too.
Wysone, you're right. The key is a great doctor. But if we're not 100 percent sure about his/her recommendations, or if we really need to feel in control, we'll still need to make some decisions on our own. I'm so glad you have a doctor you trust. Reading about you having RA since 18 months was so sad. To think of any child having to deal with this or any serious illness just breaks my heart. Finally, yes, yes, yes, you're so right about the research. We need more, not only to find better drugs, but to find a way to deal with RA without drugs, since they have their own problems.
Thank you for posting this Jesse. I have been wondering the exact same thing. I am so confused when it comes to whether or not the aches and pains I feel are just that.. "normal" aches and pains that need just some pain med to feel better or if they are serious enough to need a change in medication.
Yes it is important to have a great doctor, but its so important to know your own body, but how do you truly communicate what you are feeling, when you aren't even sure yourself? I used to know my body pretty well until this damn disease entered my life...now I feel like I don't know my body at all.
1. Find an RD you can communicate with. 2. Research the disease. 3. Keep a daily journal (especially important for the newly diagnosed) and take that journal with you when you go to the RD. Jasminerain on this forum has a great journal outline that she uses. It's simple and easy to read. 4. Know your body. 5. Question your RD, don't take a med unless you know why it's being used, what it's supposed to do, side effects and interactions with other meds. 6. Don't be afraid to change RDs if your current one isn't performing to a certain set of standards or if you think you need a second opinion. 7. Take someone with you to your appointments. 8. You're your own best advocate.
The most horrible decisions I've had to make concerned starting biologics. I was terrified when I started them but I was more terrified of being in a wheelchair. So far my side effects have been minimal and the meds have made it possible for me to have most of my old life back. I can do just about everything I did before RA but for shorter periods of time. I can't ski any longer, nor get down on the floor for yoga but I can golf, hike, and travel.
No matter how long we've had RA, none of us truly knows our body anymore. It changes rapidly, and just when we're comfortable thinking that the pain in our wrists is RA then the pain moves, sometimes fleetingly to another part of our body. Somedays, every joint in our body hurts and most are inflammed, then the next day only our index finger hurts. All you can assume is that you're flaring and it may or be time for a medication adjustment. I personally take pain meds when I'm flaring and have a medication adjustment. You'll have to phone your RD or get an appointment. For some of us, it may mean an increase in MXT/Avara/Plaq./Sulfa or any of the biologics. If you're flaring then damage is being done. For some of us it means an increase in steroids.
For some the pain is from damage. Xrays will show how much damage and rountine xrays will show the progression of the damage. Some people have pain and inflammation, others don't have inflammation, just pain.
There are no pat answers on how to deal with RA. It's an individual process and only experience with the disease over time will give you the answers that you seek - MAYBE. Lindy
I get xrays of hands and feet each year to monitor the progress of any permanent damage, which show up as bone erosions. My RD strongly believes in agressive therapy to prevent permanent damage...even if the pain is under control and swelling is minimal. So, it isn't just a question of how you feel. Frankly, my experience with the biologics, Humira in my case, has been a lot more benign than my experience with the DMARDS, MTX and Arava for me...fewer side effects and more effective relief of RA symptoms, including progressive joint damage. So, I'm not convinced "going up the meds ladder" is adding risk, in fact I boldly predict that a few years from now the biologics will be viewed as lower risk than many of the DMARDS because they are a more narrowly targeted drug rather than a drug that broadly suppresses the immune system...just an opinion for what it's worth.
Alan
Thanks Lindy and Alan. You definitely made some good points. I have so much to learn and this site has been my main source of help. May I ask how long you have had RA?Six years...I'm now 52.
I also think people tend to underestimate the risk of untreated RA. It's not just about pain or potential disability; RA is a systemic disease that can lead to dangerous heart and lung inflammation so not agressively treating the disease also has significant long term risk and "side effects"...an important consideration when thinking about the risks of the meds.
Alan
PS (Time of my life): Stopping by Woods on a Snowy Evening by Robert Frost...great poem!
Alan
I was diagnosed in 1998 with RA but had symptoms about 10 years prior to diagnosis. Was diagnosed with PA and OA 2 years ago. Have also developed pulmonary complications. I'm 62 years old.
Now that being said, there are worse things than the medications that we're taking.....damage from the auto immune diseases is worse. I realize that there are exceptions and there are some who have had a life threatening medical emergency from either a DMARD or biologic, but I feel that's rare. Uncontrolled RA/PA causes irrepairable damage to the lungs and can cause various cardiac issues. Mine was uncontrolled for about 5 years and I developed joint damage and pulmonary damage in those 5 years. Since I've been on medications the damage has slowed and I'm near remission.
If you're having pain and/or inflammation then you're uncontrolled and damage is taking place. Don't hesitate to talk to your doctor about adjusting medication or changing meds. Lindy
Lin, Alan, thank you for your posts. I knew we'd get some good information here. In fact, I'm going to print out this thread to refer to in the future as a reminder when I start to re-think and re-question concerns I thought I had the answers to. As time goes by I sometimes need a "refresher" in topics we've previously discussed and this will help.
Time, you said it so well when you said you don't really know your body anymore. That really does make it difficult to assess what's really going on.