I need to know if I’m crazy regarding my son’s JIA diagnosis and current treatment regimen. I’ll do my best to keep the story short and to the point… but I doubt it will be.

So one evening last December my wife noticed a very swollen toe on my then 6 yr old. He did not know if or how it was injured, (physically active and prolific tip-toe walker). For history, he has a dual diagnosis of low-scoring high-functioning Autism and ADHD. He’s strongly medicated for the latter on 100mg of Jornay daily. After about a week or so, she noticed a second toe beginning to also look swollen, and again, he wasn’t sure how it was injured. Onset of the swelling was notable with some typical bruising coloration present, (they weren’t just swollen in presentation), and after close to 2 weeks I took him to his doctor. His pediatrician ordered X-rays to check for fractures and none were found, so a referral to a pediatric rheumatologist was ordered at Children’s Hospital in Columbus, Oh.

His new Rheumatologist explained the criteria for a JIA diagnosis, which my son didn’t meet at the time because 6 weeks of swelling involving multiple joints, (I believe 4 is the magic number), had not been met yet. She started him on daily naproxen. She also order blood labs around the first appointment or so.

In late Jan or in Feb. my son accidentally stubbed a pinky toe on the vacuum. It was significant, turning very black and blue. After a few days the top of the pinky toe ulcerated and we went to an urgent care after a couple more days. The toe hurt of course, but my son was not overly put off or slowed down at all by the injury, but out of an abundance of caution we wanted to check. The UC Dr. said he likely contused or possibly fractured it, but it appeared as if it would/was resolving. At his next rheumatology appointment, his doctor said it was obvious trauma and that toe wouldn’t be factored into the JIA overall. It was around this time that the original toes were still not completely healed and exhibited a small amount of swelling still, so they were later imaged via ultrasound. Pneumonia joint had clear synovitis and fluid, the other was very minute. We scheduled a cortisone joint injection for the one joint, and the second being an open question, (both joints ended up getting injections).

So the OG toes completed healing pretty quickly after the cortisone injections. Where the naproxen had failed to make any notable improvement at all, the cortisone succeeded. He still had the pinky toe injury that was slowly healing, but then in March my now 7 yr old complained of a new achey toe after he and a friend played at Momiland, (and indoor jungle gym where kids rough tumble play). They ran, crawled, jumped, tumbled, wrestled, you name it, and ALL IN SOCKS. It wasn’t surprising he may have stubbed a new toe. One caveat though is this toe, while appearing mildly swollen compared to others, never presented as bruised or black and blue, etc.

I don’t recall exactly at which date or appointment his Rh doc officially gave him the JIA diagnosis, but it was anywhere around the Feb-March timeframe due to the unresolved swelling of these toe joints. It should also be noted that after his second set of labs showed elevated kidney values, (due to the naproxen course), AND the absence of any changes on the naproxen, my wife and I discontinued it for about a month before his Rh Dr told us to resume it. Also, his first set of labs, and then his second set reflected low values in a handful of areas. He had an elevated BUN due to the naproxen, but the trend seen in his labs showed some anemia that was likely due to low iron levels. The Rh Dr told me these were likely diet related and not worth pursuing. I wondered if the slow healing we’ve been noting this whole time could be the result of both the anemia caused by low iron, as well as him being a very active 7 yr old and tip-toe walker, etc. These were dismissed overall and JIA was still being considered as the primary cause for all of his symptoms.

After delaying for a bit longer, we decided to begin methotrexate at his mid-June appointment. The Rh Dr assured us that it was an extremely low dose and the main side effects would possibly be appetite issues on the first day, (once a week schedule), and maybe a susceptibility to colds due to his immune system being slightly suppressed. We started the medication beginning in July once we discovered a good way to get him to swallow the pills.

Over the next 3.5 months, the pinky toe and momiland toe showed nothing more than the slowest and most minor improvements. The pinky was mainly just a bit differently colored, (slightly rosier in general appearance compared to his other toes), and the momiland toe may have had the slightest bulbous look compared to others. If we ask my son if his hurt toes still ache, he would investigate by pushing hard on the joints. He usually would say that they still hurt under that condition, but rarely ever complained about them normally. He played baseball in the spring/summer, did sports camp over summer, then soccer over summer/fall. I recall a couple times maybe during month 2 or 3 during soccer where he complained his “hurt toes hurt,” after some soccer ball kicking.

We now just had his latest RH Dr appointment. The evening before my son reported his hurt toes were not hurting when he applied his pressure, though that morning at the bus stop he said one of his hurt toes was randomly hurting him. His pinky toe is still a bit rosey in appearance as well. At this current appointment I had planned to press his RH Dr a bit on everything. I wanted to know, (again as I had asked these questions at his June app), if there could be ANY OTHER cause for his exceeding slow joint healing that was not explained simply via “autoimmune” in origin. For example, his anemia has never been investigated nor Iron levels checked. As I see it, injuries seem to explain the initial joint involvements, which result in synovitis. Whether the synovitis is a result of longer than usual swelling or the injuries themselves, I don’t know. Then, something is causing the recovery of those joints to be slowed. Could it be autoimmune? I’m open to that. BUT I then ask why no notable change was ever seen on his long naproxen course, nor after 3.5 months on the methotrexate.

His Rh Dr commented that his joints have improved since the last appointment, and I agree with that statement. Where I disagree is regarding the cause of the improvement. I asked her how we know the improvements were not simply due to the passage of time. Had we not started methotrexate, we don’t know if those joints would have not healed to this point on their own. It’s obviously still very slow, but we don’t know they wouldn’t have healed to this point on their own. Further, if the methotrexate was the reason for the improvement, is 3.5 months an appropriate timeframe for such a modest improvement. Keep in mind, the momiland swollen toe at the time the Methotrexate was started was maybe 105-115% the size of the comparable toe. At a cursory glance, no one would have noticed any issue with it. They may have noticed the pinky toe due to its slightly more reddish appearance, but even then an uninitiated person would not note them without anyone drawing specific attention to it.

I also inquired about other JIA aspects and features. She said many cases arise due to unexplained and persistent joint swelling with no external cause. She also has apparently decided my son’s original toes, (the two cured by injection), were never injured. I found this highly suspect because not knowing a cause is very different than saying there was NO cause. IMO she does not have any evidence to make that assumption. I was further alarmed when she said nothing else could have caused my son’s synovitis in the joints. She was quite firm in the idea that the joints became swollen and an autoimmune issue caused the Synovitis seen on ultrasound in those toes and was slowing the healing process.

Anyway, I’m not sure if I presented the case or my concerns/arguments well or thoroughly. My wife wants to be compliant with the Rh Dr’s recommendations, which is currently to continue methotrexate but to now also add naproxen back. She said his pinky toe is about 85% healed, and we want to get to 100%. Why the methotrexate, which is working and the reason we are healed to this point in her opinion, is not sufficient enough I’m not sure. She seems to believe that despite no evidence naproxen did anything for his toes previously, it was probably doing “something.” Personally I think this makes zero sense. How can the methotrexate be working, (albeit so slowly we don’t know if it was the drug or the 3.5 months of time), but it’s not working enough and we need to add another drug, (that never seemed to be working but we will assume it must have been doing something). She also said that she believed if we stopped all meds that his joints would swell up again, (even though we have never seen a joint swell and KNEW there was no external cause).

She also ordered labs this time, and results are trickling in, but I doubt she ordered iron levels again. One other important caveat about ALL his labs is his ESR values. They’ve never been elevated, and had actually even dropped prior to him starting the methotrexate. He had 3 blood labs prior, and his ESR went from 3, to 2, to 1.

I have sereopositive RA and have been on HCQ for a year and MTX for 2 months. I just got off prednisone after a six month taper. Ive noticed these non-itchy red marks appear on my fingers. I don't know if it's related to RA or any of the meds, and I plan to ask my rheumatologist about this. But I wanted to see if anyone else here has experienced this. Thanks for your help!

Trying to gauge what's reasonable here. Thoughts?

I'm early-40s/F and my boyfriend/partner (there is no good term!) is early-40s/M. We're outside of Seattle. Been with him since early this year (about 9mos). He's lovely. I was diagnosed in 2020 and have coincidentally been single until this guy. We're on the same page about most things...until I've now found out he likes a cold house! Lol I'd had no chance to realize this since it wasn't too cold out when we began seeing each other, and then it was spring/summer. He's now told me he likes to keep his house at 65°. The other day I was over and my nose and fingers felt cold. I've jokingly referred to his freezing house, we've talked about our offices and how cold/warm they are, and now I've fully said I'm worried his house is too cold for me....but we got pulled away and couldn't finish that conversation. I know I need to properly address this.

So my question is...having only dated jerks and only pre-RA, and now with RA and a good partner....what's reasonable here? If I'm too cold I feel sick and my fingers will get stiff. My worry isn't unfounded. But should I just...suck it up? Does it seem reasonable to ask him to crank the heat if I'm over? (Probably only a few degrees?) It's not every day for sure, so not like he'd cook in a hot house. But our fall/winters get wet and cold & it really flares me- I want/need to be cozy! He's typically very good about my RA.

I know I'm overthinking this but I reeeeeally only dated jerks; can't stress that enough, haha.

My Rheumatologist is closing her practice the end of the year. I have to find a new one. She is easy to work with, takes her time, asks me questions and will write a prescription as needed.

I have to find a new one so I did, I met with him yesterday and he said that he’s completely opposite of her, he doesn’t like to prescribe medication and methotrexate and Enbrel can damage your liver, duh, like I don’t know it has a black box label…I get bloodwork done every 2 months already and he says it should be every 3 months. He says his goal is to get me off the medication and he goes by symptoms and not bloodwork. His office is super close.

Would you continue to go to him or look for another Rheumatologist? I walked out feeling like I was a hypochondriac. I was having a really, really good day yesterday so I looked like there was nothing wrong. My ankles are still swollen but not like before, I can actually walk faster and not look like my feet hurt. He said there’s no joints in your ankles it’s not rheumatoid arthritis.

What’s your opinion? What would you do? I probably already have my answer by just asking but I just want an outside prospective. My sister said I should keep looking and drive 30-1 hour to find a better one. I want a female doctor, I feel the younger male doctors are on a power trip and usually dismissive or their bedside manner needs help. I like my doctors either old and male or just female, that’s my preference, this guy is young and male and he’s already rubbed me the wrong way.

I’m 31F, have been having symptoms for a few years (some times much worse than others), and have a seropositive mom with RA. She’s the one who sees my symptoms and has been telling me to get seen by a rheumatologist.

But my medical provider refuses to do the RF or anti-ccp blood tests until damage to my joints becomes visible on an x-ray. That seems… backwards. Isn’t the goal to catch it before it does that kind of damage?

If she’d told me she wants it as a baseline, that’s one thing. But she’s using it as a gatekeeping technique for the bloodwork. If there is autoimmune inflammation, that’s something I want to know and get treated so I can go back to sailing for as long as my body will let me.

This isn’t a theory I’m pulling out of my butt; I have a first-degree relative with seropositive RA and I am progressing as she did. Is that not an indicator that testing would be smart?

So my doctor has prescribed me a folitrax (mtx)10 mg for once a week

And folvite 5mg twice a week

For eg. Mtx - Sunday

Folvite - Friday, Saturday

Which should we start first ?

I'm anaemic person tho

PS- not able to contact doctor online because of his leave .

Back around the beginning of sept, I started having joint pain, stiffness, and inflammation in my fingers bilaterally, worse in the morning right after waking up. I had a whole host of labs done including RF, anti-CCP, ESR, along with Lyme, Sjogren’s, and lupus antibodies. Everything came back normal. I saw an ortho hand specialist who did some X-rays that were normal, and he gave me a 3 week script for Celebrex. I’ve been taking it for almost 2 weeks, and I’ve felt little to no improvement in my pain, maybe some improvement in my inflammation but overall not much. Does this experience sound familiar to anyone else? Should I keep pushing for a seronegative RA diagnosis? I have an appointment with rheum in a few weeks

Today I had something strange happen. I had to stop lefluminide because it gave me neuropathy and then we believed it had stopped working because I started flaring and my number started increasing. During late spring and summer I noticed big time brain fog but I also was flaring badly because my medication stopped working. I started Orencia and had the three loading doses. Waiting to start injections. But recently I've noticed that words just don't come out the way they should. Today I had something scary happen where I said a word but it was messed up. I have noticed that happening off and on where I'm trying to get words out but they're not coming out the way they should. It's been a long time since I had a massive flare like this one. I just don't remember if this happened during it. Does this happen to anyone else? I also started having chin numbness and random neuropathy today. Just a weird day. I did get a steroid shot the other day for my knee and I know that can cause some weird things to happen too. This disease sucks.

So 2 days ago I was walking at work, twisted my knee and tore my meniscus literally in half. Called an ambulance and at the hospital they gave me an xray, CT and threw me out hopped up on iv painkillers and told me to get an mri outpatient and manage pain with ibuprofen. The trauma doc forced my knee in a kind of straight position and then was like okay bye bye.

Fast forward the first 24h were unbearable , got an emergency mri at a private clinic today and the tech told me that there’s a shit ton of fluid in my knee aka why I cant straighten it and why I’m in so much pain.

I was seriously in tears all day because of how bad the pain is. In my country no one cares that you tore a meniscus and will throw you out of the hospital without a second thought, anyone else gone through the same situation, with the fluid in your knee and a torn meniscus?? What did you do, did it heal?

Looking for supportive sneakers that are slip-on or easy to put on for hands that flare/hurt?

I have been on mtx for around 6 weeks and have been experiencing noticeable hair thinning. I am already on folic acid daily. Are there any treatments or suggestions anyone has for how to fix this????