Yes, I’m aware of how synovitus causes inflammation and damage it can cause. My ultrasound showed moderate-severe Synovitus and tendon thickening of both hands and feet but no damage to the bone or cartilage yet. I would have started treatment much earlier but as it is I am among the seronegative group and have had it for around 18 years undiagnosed until I had these ultrasounds done. I’ve been on methotrexate injections/leflunomide since my proper diagnosis, the pain has been lessened but the swelling around and between the joints has not gone down yet. My GP told me that Synovitus can come and go which confuses me because I was under the impression that the methotrexate is supposed to deal with that. Looking at my right hand right now it looks swollen like it did during a nasty flare up but without the severe pain I experienced before treatment.
Definitely recommend The Autoimmune Solution by Dr. Amy Myers to all my AI comrades. It has been the only bright light of hope in my last 4 years of undiagnosed AI darkness. Learned more about my body, disease, and diet from her book and website than my last 5 doctors!
Well I had to get checked for TB because Doctor isn’t happy how I’m responding to the DMARDS and wants me on Biologics now. I am waiting for a call from my new RA Doctor because I’ve relocated. I thought I was doing well on the DMARDS but doctor says that I consider even a little bit of pain relief is a milestone. She has recommended I cut the methotrexate dose in 1/2 to .04 and add a Biologic.
Did you notice any new or worsening symptoms when you started them?
DMARDS never worked for me. I’ve been on biologics for almost 20 years now. Remicaid was the first and was an infusion. It worked the best for me, then my insurance changed and wouldn’t pay for it. I was off of it long enough that I can’t go back on it due to antibodies. I tried many in the mean time, and then my doc prescribed simponi, which is the closest biologically to remicaid. It’s a monthly shot in the leg, with an auto injector pen. Easy peasy! These drugs don’t help my exhaustion, but they keep me in a medically induced remission!
Good luck to you!
I flunked Remicade with a bad allergic reaction. It was pretty early in treatment, although it already had started to work. Two years later I went on Humira, which was absolutely wonderful. It cut down on both pain and fatigue. I wish it would have worked forever. I did get 13 years out of it.
Orencia came next, and didn’t do much for me. Now I’m on Kevzara. My inflammation numbers are wonderful, but I still feel like I’ve been beaten repeatedly.
So is your relocation complete? How did the flight go?
Rebecca
My RA doc showed me the auto inject pen and I’m hoping I can get on it so I don’t have to go to a doctor once a week.
She says the DMARDS aren’t working for me either and feels bad that I was grasping at any little bit of pain relief. She said the Biologics should make a huge difference…here’s hoping!
All of the names you and Barn Mom mentioned sounds familiar to the list my doctor told me about. There’s a 2 1/2 year wait for an RA doctor here in Halifax but I’m getting triaged to the front of the line hopefully.
How do you find out your inflammation numbers?
Relocation is complete and the flight went very smoothly. All six cats and Bummy Bird travelled an hour to the airport and 2 hours of flight and were so well behaved I was dead proud of them.
Yay for your critters! They did great.
I get my inflammation numbers these days every time I see the rheumatologist. This doctor does things differently from my Colorado rheumatologist. There, I got tested every two months, regardless of when I saw the doctor. In both cases, I log into the lab’s site to see my results. Theoretically the doctor should call me with them, but that has not happened unless something was very bad, like when my kidneys decide not to play nicely.
I’m not very thrilled with only getting tested when I see the doctor. My next visit is four months after my last one, and the Kevzara manufacturer recommends more frequent testing. Additionally, testing every two months is pretty typical for methotrexate. I had an even longer gap last year–I saw the doctor at the beginning of summer, and didn’t see her again until January because she was on maternity leave when I was due for my next appointment. I asked my family practice doctor to run some of the tests in November, and she did so because she agreed that it was too long of a gap. I don’t get why my current rheumy wouldn’t just give me a lab order and ask another doctor to review it while she was on leave. I asked her to, and she said no with no explanation of why.
Rebecca
I will ask when I go in next if my inflammation numbers are being checked, I would assume they are and not being mentioned if low? I have to go every month for bloodwork to make sure liver and kidneys are good.
I found out Wednesday when I went in to get my meth shot that I don’t get my inflammation numbers checked because they don’t show up for people with seronegative RA.
I’ve heard conflicting opinions on whether inflammation numbers show up for seronegative people. Some have said seronegative folks have a normal rheumatoid factor but do show high inflammation markers, and some have said seronegative folks have both normal rheumatoid factor and normal inflammation markers. It’s good to get the second statement confirmed. I wonder if both scenarios are possible?
Rebecca
It was clear that something was very wrong because I went from being very active to having great difficulty walking. My family practice doctor first suspected plantar fasciitis, but when thing were just getting worse and worse, and knowing my mother had lupus and I’d already been diagnosed with Hashimoto’s, he ran the tests for rheumatoid factor and inflammation. My numbers were sky high. Luckily he knew a rheumatologist who was just going from teaching to a patient practice, and I was able to get in to see the rheumy very quickly. He immediately put me on plaquenil, and when that didn’t do a lot, tried all the other DMARDS (not all at once). That took more than a year. Around then, biologics were becoming available, and he started me down that path.
The timeline was that pain hit me like a ton of bricks in April 1997, when I was 38. Rheumatoid factor and inflammation tests were done in December 1997, and I first saw the rheumatologist in early January 1998.
These days, I have quite a lovely collection of these fun diseases–Hashimoto’s, RA, Sjogren’s, fibromyalgia, and maybe lupus. Fun times. But I must say, my original rheumy kept me going (creaky and in plenty of pain, but still working, biking, and playing with horses) for 20 years. I’ve since retired and moved to a warm climate, which necessitated finding a new rheumy. I get tempted sometimes to go back to Colorado to see my original rheumy. I could do it, but I would have to pay cash since my insurance won’t cover there.
Rebecca
The inflammation numbers you’re speaking of are done through a CRP blood test which is also the most common test used to diagnose RA, correct?
My CRP tests came back negative three times in 20 years so doctors say that inflammation numbers won’t show in my bloodwork, it was the moderate to severe Synovitus found with an ultrasound that caused my diagnosis. Yet a total protein blood test shows I have Monoclonal gammopathy of undetermined significance (MGUS)and need to have it checked once a year.
A large amount of moderate-severe chronic pain throughout my entire body went undiagnosed for the last almost 20 years. Because none of the tests were coming back positive all the doctors could do is offer me was years of anti inflammatories laced with steroid injections.
Like RMJacobs I also have RA, Sjogren’s, fibromayalgia and most likely Lupus. If the Lupus turns out to seronegative as well it may take awhile for the diagnosis.
I think there are a couple of tests for inflammation, of which CRP is one. My brain has left the building (again), but it seems to me I get three different inflammation tests (plus CBC and another one I can’t think of) when I see my rheumy. I hate it when I can’t think. I used to really value my brain. All I can say is it’s good I don’t work any more.
Rebecca
I’m sorry…you’re right, it really sucks.
This has been one of the hardest symptoms of diabetes and RA combined with a permanant brain injury, along with the side effects of the medications that help me to merely function that has been very difficult to accept and deal with.
My RA hit just before my 21st Birthday. All of a sudden my left knee was huge. I went to the ER, they did xrays, drained a ton of fluid off and told me I had arthritis. They said that it was because I’m female and the angles at which my hips, legs and knees came together. (Insert eye roll) While waiting for all of the tests to come back, it spread all over. I remember it vividly. It was similar to sitting outside on a fall day, and the way the temperature drops and kind of spreads through you. Only it was a massive RA flare. I was basically bed ridden for weeks. Narcotics were the only thing that made me functional, which was clearly not safe or sustainable. None of the DMARDS worked or they made me sick.
I had one doctor tell me that it was all on my head. And because I went into remission while I was pregnant with my daughter, I had another tell me that maybe I should stay pregnant…
Fast forward 10 years and I finally found a fabulous rheumy! More than likely I have juvenile RA and seronegative as well. He diagnosed me based on symptoms, joint damage, xrays and that mine is symmetrical in my fingers.
I will say that while I don’t test positive, I have bloodwork done regularly and even though my numbers are “normal” when I’m having a flare my numbers are in the higher range of “normal” or higher for
my normal.
Good luck to all of you trying to get a diagnosis, treatment that works and to all already traveling this road! I’m with y’all!!!
