has anyone been diagnosed without a lot of joint damage? The only thing that is very noticeable is my thumbs especially my right that is still swollen and looks deformed. I'm worried this isn't it because my doctor thought it was unusual. I've been on this roller-coaster for the last few years going back and forth between I have a real problem or I'm crazy/making it up. I really hope this is it.
My rhuemy and derm both seem to think biologics will be the way to go, but I know some insurances don't cover it? So what are the other options? I'm planning to call my insurance this week and running through what they'll cover. I just want to be fully prepared so I can discuss this with my doctor and know what'll be approved.
My story is below for more info;
A few years ago my husband noticed a weird patch of skin that looked odd on my feet. He pointed it out and I thought it was just super dry skin. I was very pregnant with twins and it was the middle of june. It was hot and I've always had some sensitive skin to heat. I shrugged it off, but it didn't go away and it got worse. Then soon came joint pain, swelling, and hot/redness. I saw one doctor who said it was all in my head and that I was anxious because I had recently given birth. I left almost in tears and decided not to go back. Then almost a year later I went to a GP for a physical who saw the skin she referred me to a derm and a Rhuemy. The derm basically said it wasn't psorasis and that it was just contact dermatitis and I was itching it too much. She gave me some kind of cream and sent me on my way. It didn't work and I didn't think it was going to...I had the thing for a year! A few months later I finally got my appointment with the Rhuemy, but he ran a bunch of tests couldn't find anything aside from a borderline ana test. X rays showed nothing and said at this point he wasn't willing to try anything, but physical therapy then to come back after 12 weeks of that. I did it, but it didn't help really. I didn't get the chance to go back because my husband lost his job thus our coverage.
A year later we have coverage...and my thumb became red, swollen, and painful. I couldn't use it and after two weeks I finally decided to see a doctor. I got my referrals and x-rays. The radiologist said that my x-rays looked like I injured it. Okay so I thought I injured myself except that by the time I saw my rhuemy it was still in the same shape. It had been that way for nearly 2 months at this point. The rhuemy took a look at the x-rays when I told her this and she said she sees maybe some joint damage. Order another set and some of my feet. She also sent me to a derm again and took more blood. I got the results today of the x-rays and she said there is some joint damage in the thumbs, but everything else looks good. She seemed a little surprised due to the fact I've had major stiffness and increase in symptoms this year. The derm took a sample of my skin and seems confident that it is psorisis. It's mainly on my feet, but also on my elbows and knees now. It definitely isn't dermatitis. I won't get that back for another week for sure. I have a high positive ana, but everything else came back good. My rhuemy is on board with the derm thinking it's probably psoriatic arthritis. So she put me on prednisone to see if it'll make a difference for my pain. Then once the results come back from the skin sample we'll talk about other treatments. I started with weird skin rash to painful hot/red swollen joints to major stiffness. My joints that are mostly effected are my hands, feet, knees.
I’ve had a lot of flare ups over the years and have had no joint damage at all. There doesn’t seem to be any logical explanation and my rheumatologist keeps sending me for X-rays as she doesn’t quite believe it!
Here's the thing, if you get diagnosed in a timely fashion, and/or your PsA progresses relatively slowly, it's perfectly possible to have little to no joint damage early on. I happen to have been diagnosed ridiculously early. I had just had a few fingers swell up and become quite painful. At this point, 5 years later, I am on a few medications, and have somewhat minimal permanent damage, and a lot of tendon issues.
Gwynneth- I'm curious why they keep doing x-rays. Would they make treatment changes based on the x-rays? If not, it just makes good sense to treat based on inflammation.
Sorry, should have given more info. It’s X-rays on different joints each time, not the same joint. My right knee is usually the worse but that came back all clear so we’ve now been working our way around the other joints that I’ve had swelling in. And my spine for good measure (the only part of the body not to suffer!). And why not, it’s free on the NHS
Thanks for both of your replies. Stoney that makes me feel a lot better. The first few doctors I saw were really unhelpful so sometimes I get nervous thinking unless I have a ton of symptoms or damage to show that they'll dismiss me. I shouldn't feel that way since my current doctors have never doubted my pain or anything. I definitely believe that whatever it is its early and going slow both good things, but still really frustrating as I have young children who still depend on me.
From the sounds of it, I'm guessing (only) that you are seeing Becki Danforth (great Kid) and Bob Korenenberg. They will treat you agrresively and early believing all the "damage" can be avoided. There are only two insurance companies who write in Montana, and they can handle both of them. Whether your biologic will come from the Dermo (easiest) or Rheumy (harder) The Fortis Group or BC/BS will cover it. Both physicians groups are VERY good at the assistance programs. Becki can be a bit brusque at times but as long as she is convinced you want to get better, she won't stop. Ask her for Hot Mammas balm for your hands....... (her mom a small town pharmacist developed it)
I am in a similar state. I was dx at 10 and the prediction was wheelchair by age 20, and multiple joint surgeries. Instead, I've had only mild damage (not quite full extension of my elbows, joint fusion in pinky DIP joint both hands). The rest of me has all the flares, pain, and snap crackle pop sounds you can imagine, but very little damage. Docs have never quite understood why.
So in response to your original question, thehart, you CAN be dx AND have the disease for a long time without joint damage...and the disease can still be severe.
GwynnethP said:
I've had a lot of flare ups over the years and have had no joint damage at all. There doesn't seem to be any logical explanation and my rheumatologist keeps sending me for X-rays as she doesn't quite believe it!
Isn't that funny Gwynneth? I'm going to the hand doctor in a few days, and I seem to have to specifically request x-rays if I need them. Even when I went in to the ortho last year with my ankles a disaster, no x-rays. And my poor swollen knee hasn't had any imaging done in almost 10 years, since I was getting PT for patella-femoral syndrome.
However, when I went in with neuro symptoms, for that I got mri's plus all sorts of different tests. Very exciting.
GwynnethP said:
Sorry, should have given more info. It's X-rays on different joints each time, not the same joint. My right knee is usually the worse but that came back all clear so we've now been working our way around the other joints that I've had swelling in. And my spine for good measure (the only part of the body not to suffer!). And why not, it's free on the NHS ;-)
Yes, I've been diagnosed without joint damage. However, the doctors are no have second thoughts. I don't have hot swollen joints. I had pain in my feet for 18 months, now in my hips, back, rib cage.
Despite this, I am starting Remicade next week. New rheumy ordered MRIs to look for inflammation.. I my lab work did show systemic inflammation and prednisone helps with the pain.
