Really need some advice | Arthritis Information

My daughter is 24 with JRA, diagnosed when she was 7. She's had her ups and downs over the years with a few flares a year, maybe lasting 5 to 7 days. However, she has been in the worst flare yet, lasting approx. 6 weeks. She did her second shot of Enbrel last Saturday and most of the fluid in her knee and ankle is gone. She has pain in all of her muscles. Maybe she has some fibro going on? She is also very weak and tired. Maybe just from all of the havoc on her body. She has been on injectable MTX for her uveitis for over 2 years. Her uveitis is great but the MTX never did much for her joints. She graduated from art school last May and just got her dream job about 8 months ago. Now she is on 30-day family medical leave. She went from being somewhat normal to being almost housebound. I know arthrits can progress like this, but I'm just wondering if maybe her new job brought this on. She has a two-hour each way commute with a lot of walking. Her job is very stressful. I keep thinking maybe something else is going on. Her last labs showed high wbc but her ophthalmologist and rheumatologist said it's probably from the oral prednisone she was on. Yes, her inflammation went down but she doesn't seem to be bouncing back. Her rheumy put her right on the Enbrel without trying anything less dangerous first. She is going to get second opinion in a few weeks. I do not like her being on the Enbrel. What about knee replacements? Does that really make the joint all better or does the arthritis just move to another joint? I'm sorry, I have so many questions. She has been in so much pain and discomfort and as a mother it is so hard to watch your child suffer and not be able to help. I have read sooo many of the posts on here, just trying to learn as much as I can. You guys seem to be so caring. Do you think she should call her rheumy and tell her of weakness and fatigue? She sees her again on 12/4. Thank you sooo much for any advice!

Ultimately, that 2nd opinion is the best strategy to take; it's very good idea.

My guess is that stress is having a time with your daughter. Change in schedule, the new job, the walking, the long days, the new meds...any one of those is at least somewhat stressful - all of them together can be quite a load to handle.

Fibromyalgia is perhaps a possibility. Anything here would be only conjecture...but I did get a diagnosis of fibro myself several years ago, as a kind of "it comes with the territory" rule. It's sort of like anemia or osteoporosis, in that fibro is more likely to be found when RA is in the picture.

Personally, I have been told to hold off on knee replacement for as long as humanly possible, and I am 39 years old. I have one pretty badly behaving right knee, and one slightly-less-bad left knee. The problem with replacement is that the artificial joint has a life span considerably shorter than the recipient. The last I heard, you're looking at another new knee in about 15 to 20 years after your first replacement, if you get the really good stuff. That's not so bad to those of us who deal with failing parts, but it's still important to remember that you're talking about serious surgery and in-organic stuff in the body. Good doctors - the ones not out to take your money - will advocate on the side of making what you already have work the best it can, for as long as you can stand it.

Has anyone talked to your daughter about hyaluronic acid knee injections? It is found under brand names like Orthovisc or Hyalgan. It really helped me, and has been key to postponing the consideration of knee replacements.

Back to the stress, which is important to handle no matter what. I'm sensing that your daughter it right at that phase of life where a lot of changes and shifts in direction are unavoidable. Going from college to career is a time where anybody, disabled or not, can get very stressed by a lot of choices to make (big and small) and the pressure of responsibility (real or imagined). So, I'm willing to bet that some of that pain and fatigue is stress-related.

You sound like an exceptionally cool and caring mom; you are quite possibly the very best medicine your daughter can have right now. You're someone she can talk to about all that's going on in her life; that's especially helpful since you've probably experienced those same or similar changes yourself. You're also someone who understands her condition, since you've already "been there" with her for that, too. Please continue to support her, especially emotionally. As one with this disease, I can't convey strongly enough just how vital it is to have a good emotional support system, as we contend with this condition. Whether it be a cheering section of one or a dozen, having that support is priceless.

Hi nailgirl,

I can't imagine watching my child go through the pain I suffer with this crap. *hugs* first and foremost for you...

A six week flare? It does explain a lot of the fatigue... it takes the body a while to bounce back. Enbrel from my understanding takes a while to work, from three weeks to a couple months, depending on the individual. The muscle pain could also be from some fibro, it's not uncommon for RA sufferers to also have it. Or it could just be the effects of the flare.

I'm not familiar with Prednisone, I told my dr. that unless it was an absolute necessity, I wasn't going that route because of the horrible side effects and difficulty getting off of it.

As you know, RA effects joints all through the body, some more than others. Joint replacement will help that particular joint, but it's not a cure for the disease itself.

Is your daughter on any anti inflammatory drugs like aleve or ibuprofen? I don't know what I would without mine... and what about pain relievers?   It does take the edge off.... I take vicoden, sometimes half a tablet, sometimes a whole.

The stress of the new job could aggravate RA, especially with the commute involved. Is it possible for her to move closer to work? I am very fortunate, as I still work full time, but I've had to make adjustments to methods.... and there are days that I have to come home and sleep for a bit before I can manage dinner and other family stuffs!!!

Please, continue to post, ask questions as often as you want....

WELCOME!!!   I'm sure that some of the others will post as well.... :)

Enbrel was a miracle drug for me - but it took 3 months to start working. All of the DMARDs (usually) take time to start working. http://en.wikipedia.org/wiki/Disease-modifying_antirheumatic _drug

All of your daughter's symptoms sound familar, I'm 37 and I was diagnosed at 18 months with JRA. When I was a kid the only meds they had were prednisone or aspirin!

I think the fatigue is the worst, and most disabling, part of a flare. Pain and deformity I can deal with, learn to work around, take medications. For fatigue there's nothing. In autoimmune diseases the fatigue is caused by the immune system gearing up to fight what it thinks is "the enemy", just as it would if you had a virus or the flu. I've heard active autoimmune diseases described as feeling like "having the flu permanently".

If it's anemia and your daughter (I'm guessing) probably has what's called "anemia of chronic illness", she might be able to boost her energy levels with a good multivitamin for women (in other words, with extra iron)

This link is to an info page on anemia of chronic illness. http://www.nlm.nih.gov/medlineplus/ency/article/000565.htm

I'm waiting to get my knees done. My rheumy says younger people (50-) have more trouble with them and they're constantly improving the mechanics of the faux joints, so why not wait if you can. (But then again, I'm not working and I don't have to walk much.) Unfortunately getting knee replacements won't "remove" the JRA, it can and will move on to other joints, unless you stop the progression of the disease with a DMARD.