Aggressive treatment for mild disease?
I know that aggressive treatment is highly recommended for newly diagnosed patients to ward off any permanent damage. However, I was diagnosed with JRA in the 90's, took aggressive treatment then, but spent most of my 20's on no DMARDs at all(this was supported by a rheumatologist who said that if it wasn't bothering me, avoiding the medications would be to my benefit.) Earlier this year I started having more pain so I went to a rheumatologist. X-rays 5 years ago and now show the same amount of barely noticeable erosion on my ulnar styloid process. I was in enough pain to start a DMARD, and we went with hydroxychloroquine because it has very mild side effects in general. However, I get the sense my rheum wants to start adding more even though I feel well. It seems like she's treating as a newly diagnosed patient who might suddenly sustain severe damage, when my RA has been mild for 25 years. I am having a hard time finding research or case studies similar to mine. If my disease is not progressing, I would prefer to take the minimum needed medications to keep pain and stiffness under control, but I also don't want to screw myself over for the future. Has anyone had a similar situation?
Hi
. There are so many factors involved in whether or not to take medication. Doctors tend to want to play it safe. They have seen the worst and they want to prevent it. So they will likely push you to take medication because they sincerely believe it is the best option. BUT ... RA medication can also have some serious long-term side effects for some people. With that in mind, people with mild progression do sometimes opt for no medication, figuring they will be able to take medication at a later age if they avoid it when they are young. No one can really tell you what to do. Your case is a bit unique because you have been in remission for a long time without taking medication. You will have to weight the benefits against the risks and make your own decision, but there is no need to rush anything if hydroxychloroquine is helping you now. You can wait a few months and see whether your pain increases, and then make a decision. Progression often starts with pain, and then begins showing up on x-rays, so pay close attention to your symptoms in the months ahead. You have a great opportunity to jump into prevention mode if you see your symptoms beginning to worsen. I hope that helps and that you get input from others in the community. Wishing you the best. - Lori (Team Member) thank you! That's somewhat reassuring. I'm not finding many examples of people avoiding medications, and some forums are adamant you should be on meds no matter what. It seems like a lot of people have a lot of pain upfront, which I didn't until recently. When I was a child I had horrible swelling and less range of motion than I currently have, but felt absolutely no pain. Now I feel like the swelling and range of motion is the best it's been in my life, so it's jarring to have my rheumatologist disagreeing, and she definitely seemed to be unhappy about the lack of medication in my 20's. Obviously I want to prevent further complications but I also take medications for bipolar which I consider completely necessary so I'd prefer to take as few as possible if I can. Hi
. One of my closest friends is in her 60s and takes no medication for her RA. She recently started having problems with her feet, so she might go on something soon, but her RA has also been slow to progress. So she has never felt the need before. My guess is that there are likely lots of people like you and my friend out there, but that they tend not to participate in support communities until or unless they begin to have issues. Educate yourself, take your doctor's advice into consideration, and then do what you believe is best for you. - Lori (Team Member)
Hi
. It is completely understandable to not want to take medications unnecessarily. There is a certain percentage of JIA/JRA patients who go into long-term or permanent remission (see: https://www.cdc.gov/arthritis/basics/childhood.htm). When a recurrence happens, there are some doctors who treat it as a new case of RA. I'm not saying this is what is occurring with your doctor, but don't hesitate to ask. Another possibility is, especially since you were in long-term remission once, that your doctor is hoping that early aggressive treatment may get you back to remission. Again, don't hesitate to ask the doctor directly questions about what they consider your disease (JIA or RA) and what the goals of treatment are and why it is believed a particular treatment approach is best. Wishing you the best and please feel free, if you like, to keep us posted on how things are going. Richard (RheumatoidArthritis.net Team) Hello, my situation with treatment is different then yours but truly understand the thoughts or reservations you are having about maybe changing or adding more medication to your treatment. Just because you might not be feeling any progression with your RA does not mean it is not progressing. Keep in mind this disease not only affects the joints but can affect your soft tissues ( tendons, ligaments, organs of all kinds etc..). With that said, may I suggest a test called Vectra DA, I know it is available in the US, not sure if available globally. It can help measure the activity level your RA which could give just a little more information on how your current treatment is helping you or not. Just a simple blood draw, but can be costly so check with your insurance and such. I hope what ever you choose to do that it works out for you.
May your day be a good one!
When I went to a major RA center for a consult, they used Ultrasound and nuclear med scan to evaluate my current disease activity. As I understand it, x-rays show erosive damage late. US can show active inflammation and synovitis prior to joint erosion thus more accurately show current disease state. Nuclear med showed in a more general way how wide spread the inflammation was in my body. Alternative imaging may be worth discussing with your doctor and help you decide on the most appropriate treatment plan? Jo
