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Mild PA or RA ... debate over medication and next steps
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Date Joined Sep 2009
Total Posts : 2
Posted 9/11/2009 1:00 PM (GMT -7)
I also posted this in the psoriasis forum because it's unclear whether or not I'm dealing with RA or PA (Dr. says it's definitely not osteoarth given the joints involved).
I've been seeing a rheumatologist for about
3 years with mild arthritis symptoms. My Dr. is quick to prescribe meds, my goal is to minimize medications unless necessary. Her angle is that even if a mild form, long term I'll experience joint damage. I'm a photographer, working with my hands constantly and she wants to protect that functionality. My thought was intermittent pain/swelling/inflammation is a nuisance but not worth the side effects, cost, annoyance, risks of meds.
My question to you more experienced : Do you see downsides to taking a conservative/low med approach? Do any of you have mild PA diagnosed w/o significant skin/nail symptoms?
2006, Reyauds for many years. Starting in 2006, significant swelling and inflammation of 2 joints right hand, spinal pain/inflammation lower back (definitely not muscular), general malaise and aches. Lab work showed (slight?) elevation of RA Factor at 27. I didn't have any active skin involvement, though in the past had been diagnosed by a dermatologist with psoriasis of scalp. A second dermatologist said it wasn't psoriasis but seborrheic dermatitis. Mom and Bro have psoriasis. There was mild nail pitting and horizontal ridge, but not enough to say clearly related to PA.
2007, probably because of positive RA factor, Dr. diagnosed mild RA despite unilateral presentation. X-rays didn't show any joint damage. Prescribed plaquenil at relatively low dose.
2008 - 2009, joint symptoms dramatically reduced. I decided, with Dr.'s ok, to try going off plaquenil to see if remission was unrelated to meds. All good for about
a year. Then inflammation/pain/swelling returned in toes, elbow, knee, and same joints as initially involved in right hand.
2009, Dr. now thinks that unilateral inflammation pattern with elbow and knee tendonitis is more typical of PA. Still no significant skin involvement. I sometimes get extremely mild scalp rash that can last up to a month -- small (5mm or so), red raised bumps, flaky, itchy, but not obviously psoriasis like I've seen photos of) .
This week I started taking Sulfasalazine. So far, no stomach or other issues. I know, like plaquenil and other meds, it will take awhile to see improvement so for now it's Naproxen to deal with symptoms.
Psychologically, I feel "healthier" when I'm not on meds, even though I might be in more pain. I'm beginning to think I just don't want to accept I have a long-term AI disease and have been in denial. Being in this low-level, unclear diagnosis is a strange limbo. Having said that, I'm grateful whatever is going on is relatively mild. I'm so impressed with what many of you have to deal with on a daily basis and my heart goes out to you.
Thanks for any thoughts, experiences, stories, advice.
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Date Joined Sep 2008
Total Posts : 1670
Posted 9/12/2009 5:47 AM (GMT -7)
Hi Sue, I guess we are all different and I'm not a doctor, you have to weigh up quality of life vs treatment and med side effects. We all hated going on meds , I'm sure most of us were initially in denial, I was. But my symptoms just kept on getting progressively worse. My rheumy told me if I didn't treat my swelling I was leaving myself
open for permanent damage. I'm also an artist who really uses my hands alot and because of that heavy use I was copping it badly in my thumbs and wrists. I guess I was worried about
that damage and decided to opt for the western medicine. I found some meds harder on my system than others and have had many different cocktails over the last 3 years, but I know of people who go off their meds and seem fine without them for huge periods of time. Theres lots of alternative treatment out there, acupuncture is suppose to be good. Flared me horribly but I know it can work, definately affected me. I've tried vitamin supplements etc. I guess you have to find what works for you and what you feel comfortable with.
But believe me I understand what you're going through, the courage to start taking some of the more toxic meds is pretty huge, I guess I finally have accepted (and only recently) that I can't go back to how I was before the diagnosis. When I have a good day I just really enjoy it. Hope this helps? Golitho
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