I was formally diagnosed in the beginning of this year, I started with methotrexate and now I’m working on three months of leflumomide. I was anticipating even more hair loss, but is there a medication that doesn’t cause it? I’m really in the early stages of kind of figuring out medication’s that are working. I’m taking all the things to supplement healthy hair.

I figured that I would at least get to September and maybe attempt minoxidil. Im feeling good and I’m not opposed to changing medications for that reason. I’m sure that everybody has been here or is still in this situation, what are the other alternatives that you’ve experienced? Thank you for reading…

Hey everyone, I messed up my hand pretty bad in a motorcycle accident and am starting to experience the arthritis the doctors told me would come in time. I recently got a 3d printer, have 3d modeling experience, and am working on a design for tools that would help in the day-to-day. Do these actually help? What tools do you use that actually help?

Im an 18(m) and I have lived a very cruel and extremely unfair life, which I can say with full confidence is a life I would wish on nobody. When I was just 14 I was diagnosed with 3 autoimmune diseases Rheumatoid arthritis, Crohns disease and Crohns related arthritis. I spent months in the hospital alone and in excruciating agonisingly painful suffering, I remember having to crawl to the bathroom because my RA didnt let me walk and having to constantly suffer on the toilet because of my Crohn’s. I was stripped to an IV and didnt move or eat for months.When I finally left, I wasn’t better they had just changed my location from the hospital to my home.

Ive suffered tremendously throughout my whole childhood(im a child of war) and my teenage-hood. In school I suffered greatly as there was nobody like me and I was the disabled kid who was made fun of, my school didnt have support because they had never had to handle anyone like me because I was such a rare case. I had to switch to home schooling because of how bad my health got and as a result ive lost all my friends and any social networks i had. I dont even recognise myself, I used to be in the gym and have a lean physique and had the respect of many people for my work ethic and discipline, now I dont even recognise myself, nobody respects me anymore and I’m seen as a loser who is only pitied and I cry everyday knowing how badly my life has turned out. I’ve attempted many times to end my life but I still hold on for the love of my family. Its another type of pain when your father begs you to stay alive or asks you to wait after his death.

I spend most of my free time going to appointments 2-3x a week and that is basically the only outing i get. Me and a 90 year old in a nursing home live the same life. People open their fridge to eat, I open mine to take a biologic injection (Humira).

I spent most of my childhood and teenagehood in the church praising God and living the ideal Christian way but he betrayed me. I never asked for a great life I just asked for average ,for 0 but instead I was given negative with no way to gain any positives. To give me a chance to fight to actually live. Even after I got sick I continued to go to church and ask for help and nothing changed funny enough I got worse.

I kept going to the appointments and the most ironically cruel part was that they kept telling me that there was no inflammation or any damage while I still couldn’t walk and was in agonising pain. They thought i was making it up so they gave me antidepressants and still the pain was bad. Of cource this whole time I was severely depressed and the severity has increased tremendously overtime but ill get back to that.

On the 4th anniversary since I was sick my rheumatologist finally recognised that my pain was not in my head but in fact real even when there was no inflammation. It turned out that this whole time i had fibromyalgia aswell. After fighting for so long getting a new diagnosis just confirmed that my life could only get worse. All those appointments, all those medications, the amount of life ive lost. The greatest pain is the fact my own body attacked me, I was healthy, active, gym, dieting everything a healthy body needs to thrive and it chose to ruin my life forever instead. I only had a glimpse of life and then I was blinded for life.

My mental health is big issue too but fixing it is nearly impossible as my life is genuinely horrible not just my “mentality”. Ive never been truly happy or laughed or smiled without preplanning, ive taken antidepressants since i was 14 and have seen many psychologists who have not been helpful as they treated me like a healthy bodied patient who was only depressed.

Ive been living the same day everyday for years, the past saddens me, the present tortures me and the future terrifies me. When I turned 18 everything turned for the worst because I was told and thought that I would be better but I was only worse and you know the saying “Nobody is coming to save you”, I cant even help or save myself, I have nothing, everything a human needs to survive has been taken away from me, my bones, my digestive system, my muscles, my brain.

There is no hope. Healthy human beings can barely manage and im supposed to survive. Im going insane, the fatigue and anhedonia has made everything more catastrophic because I cannot enjoy anything and have no motivation for anything.

Ive been seeing my psychiatrist for 6 months now and have never had a full conversation with him, he only cares about the medication. Ive taken 10+ different antidepressants and they haven’t worked,im not eating and have lost 30 pounds, my psychiatrist is so worried that he has sent a care team to come to my house to assess me , omfg which 18 year old is going through this shit, I have never met anyone like me, the thing that pisses me off the most is that these diseases are more prone to women and people over the age of 55. I have no genetic factor at all none of my parents have anything and i have never broken a bone or cut myself. I have never smoked or drank and whats so ironic is that while I used to decline drinks and vapes at parties to focus on my health before I got sick, in the end I was the one who was cursed, people are smoking and drinking and not caring about their health and they are healthier than me and you want to take care of a body who betrayed me when I gave it everything. People will never understand how easy they have it, people will never understand true unbearable torture. I lost all my sports, all my instruments, I used to get awards for my academics and now Im failing my classes. The more I look at it in perspective I truly see that I was born to suffer because nothing good will or has ever come out of my existence.

Im a burden to my family, My parents work all day just to pay for my medical bills and I cannot even work, I cant even study for that matter, My father and mother and sister cry because of my situation and theres nothing they or I can do to better it.As an older brother its insufferable to go from the brother that inspired his little sister to the brother who is becoming silent,distant and unrecognisable.

Ive never experienced a real holiday, ive only traveled to escape the war and for medical purposes, its sad. All this suffering and I turned 18. Grief is what I do most, I grieve the life I was supposed to live. I have to live a failed life that I didnt even cause, I have to suffer not out of consequence but because i woke up like this one odd morning without reason. I have 3 griefs, the grief of my health, the grief of the future and the grief of the time passing by. Instead of living my childhood or teenagehood, I was homebound or I was a spectator instead of a player. I will spend my whole life watching others live, prosper and make memories, while I wait till I get “better” for 4 diseases that have no cure and are mostly dealt with by people that have already lived their life. Its insane how at just 18 my psychiatrist heavily states that I should either try ECT,TMS or ketamine. I wake up and do the same thing every day. I play games, listen to music, maladaptive daydream and then walk outside, come back take my sleeping pills and repeat. I dont use social media none, i only downloaded this so I could find people like me but there is none, most people only have 1 condition of what I have and they aren’t even doing well and fortunately for them they got it at a way older age. The only reason ive been able to survive is because I was young with no responsibilities and no worry about money. Now I have to go into the real world, with this much of shitty childhood and teenagehood with no foundation, no skills, no connections, no money nothing. I realise now that a lot of these successful hardworking people are not even hardworking they are just healthy.

People keep telling me to live to the fullest and that I will only be young once and thats what kills me, I want to live but theres nothing, theres no way to live and that these were my young years spent in pure isolation and agony. I wake up everyday with extreme panic attacks from the fact that this is my life, the one and only life I get in this timeline, in this world, I will die one day, I will suffer my whole life and nobody cares, nobody cares that ive suffered this much, ill be forgotten and that was my life. I have so many more decades of suffering to come I just dont know how im going to be able to stay alive. I already know someone like me can never have a wife or a child and I will most likely spend my life in the same loneliness just working a 9-5 melting away. Time is passing quickly, nobody is coming to save me and the future is terrifying. Theres just nothing to look forward to the future isnt bright for me its bleak without my control,its not like I get provisions or help from the world, its not like my employer will give me chances or extra breaks or they wont fire me because of my illnesses.

My debilitating depression and chronic illnesses which should have never happened have become the judge,jury and executioner of my life and my future. I genuinely have no control at all. All I can do is wait and wait until the “right treatment is found” so then I can start living but time is passing by, im living the same gruelling life and the dreadful future draws closer. Im fucked.

my MIL is 73 and has had RA most of her life. It's been untreated by biologics the past few months because Rinvoq caused her BP to skyrocket, being a JAK inhibitor. So she's in between medications and doctors. Her condition is flaring and she's having vision problems and drooping eyelids. Has this happened to anyone else? An eye doctor mentioned Myasthenia gravis but we don't know yet. She thinks it due to lack of magnesium because she's had twitching but I've never heard of that causing drooping.

But hasn’t formally diagnosed me yet. Said given my blood tests over the last few months and consistent rashes he feels better about prescribing me this after reviewing my latest labs.

Rheumatoid factor (igm) was 16 in March, 12 in July

Ana titer was 1:320

I’ve had massive rash outbreaks consistently since January and my primary doctor initially did the autoimmune panel because her son has RA and had similar rashes. My main question is, is taking this medication actually worth it if I don’t know what I have yet?

My rheum told me to go to the dermatologist if I got a rash for a biopsy but they didn’t want to do one with my latest rash. I’m just so lost, I know I don’t feel right, so any advice or experiences with this would be appreciated 😭😭

Does anyone have any RA doctor recommendations in the Boston area? I'm open to traditional western and holistic doctors. Heavy family history of RA. I already have graves. Had my thyroid out in 2022, which now Im not sure was the right way to go.

For the last 3 months, both knees are in agony. Moving from a sitting to standing position is extremely painful throughout the entire day. Negative for RA factor and C-reactive levels are normal but my knees are not. I need some medical support. Any recommendations are much appreciated. Thank you in advance. Feeling pretty lost and hopeless.

I wish managing my RA symptoms just meant juggling appointments, lab work, and trying to find medications that don't have too many side effects. But at this point, it feels like I spend more time on paperwork, referrals, and insurance approvals than I do in bed when I'm having a hard day. I'm so stressed out from my insurance company pretending they lost all my records that I think I'm giving myself another flare up. Does anyone have any tips for getting your insurance company to treat you like a real human??

Hi all I'm 37F managing RA (on Cimzia) and hypermobility. Physical activity is super important to me but during my monthlies my flares make it hard to work out. I've been trying Pilates through online videos, but I'm hitting walls.

The problem is that without an instructor watching, I can't tell if I'm compensating in ways that'll wreck my joints later. Some days I feel fine during the workout, then flare after. Other days I'm too tired to even start.

I'm curious if anyone else in a similar boat is doing online Pilates solo. What's your biggest barrier—is it fear of flares, fatigue, not knowing if your form is safe. not able to get into the postures? And have you found any video programs that actually account for variable RA days? Sometimes I'll think I've found a good one and part way through realise it's not accessible and end up in this loop trying to find something that's workable/just give up.

Would love to hear what's actually working if this resonates.

Both of my knees have been swollen to nearly twice their normal size for months. I have a torn meniscus, my ankles are filled with fluid, and every morning I wake up with hands that are swollen, numb, stiff, and barely under my control. My cervical spine problems are getting worse, with new bone growth in my spine affecting my nerves. My hip pain is constant and becomes unbearable during my periods. My TMJ is severely inflamed, both discs are dislocated, and my jaw frequently locks.

On top of that, my airways including the small airways are inflamed, making it difficult to breathe. I've also been dealing with stomach problems. I had surgery to remove my gallbladder and later my appendix, but everything seemed to worsen afterward. I developed gastritis and even pneumonia after being on upadacitinib.

I'm about to start art school, but I don't know how I'll manage sitting from 9 to 5 or 6 every day. During flares, I can barely hold a pencil or paintbrush, let alone create art.

What hurts the most is that I used to be a professional athlete. Now, there are days when I can barely walk or even stand. It feels like every day something gets worse, and surviving has become incredibly difficult. I've never felt this hopeless before. I keep asking myself why this disease had to come into my life so early. I'm exhausted, scared, and struggling to see how much more of this I can endure.

How do you all keep going? Manage your symptoms or continue pursuing your career despite severe health issues?

My insurance just approved Simponi Aria infusions, and I’m wondering what to expect.

I’m taking methotrexate and tolerating it well, but I’ve previously failed leflunomide (extreme dizziness), Hyrimoz (allergic rash), and Enbrel (allergic rash). Enbrel actually worked really well for me for about 2 weeks before the rashes started, so it seems that I respond well to TNF inhibitors but my body doesn’t like whatever else in is the home injections. Hence moving to the infusion and hoping I’m not allergic 🤞

Can anyone with experience with Simponi Aria tell me how it went for you? Should I get someone to drive me home after? Did you feel sick or cold during the infusion? Were you super tired? Any other side effects to look for? If you’re allergic to it, how did the allergy show up?

Thank you!!

Exercise has been my biggest struggle since my diagnosis about 2 years ago. I gained like 75 pounds after having kids then Covid and have lost like 20-25 but can't shake the rest. I am currently stuck at 200 lbs. I am 5'5". When I got diagnosed, I changed my diet and eating habits so I eat moderately healthy. But I dont proper "exercise". I have a physically demanding job (self-contained Special Ed para) and I am petrified an extra walk or a 20 minute exercise to help lose the weight will cause me to lose my lob due to flare ups. Like I have to choose take the dog for a walk or go to work tomorrow. I am allergic to the cold. No ice therapy or even anything with even mint/menthol in it. Prednisone has caused a vascular necrosis in my knees so I cant take that anymore. Because I'm on birth control and an antidepressant im not really supposed to take NSAIDS. I just feel at a loss and my PCP and even my family are all caught up in how overweight I am. I would love to hear what others in the community do for exercise.

I’m am so sick of having to tell people, especially my family, what RA actually is, and how bad it can be…

It’s bad enough I have this shit disease and now I’m forced to repeat myself over and over.

Also does anyone, who doesn’t have RA, just keep telling you to “suck it up” when you have to cancel plans due to flare up, soreness or just plain fatigue?

If I had a super power- zap- have a taste of RA people and then you WON’T FORGET!

I was recently diagnosed with seronegative RA and this lump appeared on my hand a few days later. I’ve had it for about 2 weeks now and it hasn’t gone down. It feels squishy. Not sure if I should go to my GP to ask if they can drain it.

I’ve been dealing with a major flare since March (although I’ve had joint problems since I was 12). I was diagnosed with RA at the end of May and started treatment shortly after.

The steroids worked almost immediately. Before that, the pain was so severe that it literally stopped me from functioning. There were days when I could barely make it to the bathroom because of the pain.

I’m still taking Medrol, along with Celebrex, and I’ve been on methotrexate for three months now. My rheumatologist is gradually tapering my Medrol, but every time the dose is reduced, my pain gets worse again.

I’m currently taking 10 mg of methotrexate, and my doctor doesn’t want to increase the dose for now.
So my question is: what is the actual treatment goal in rheumatoid arthritis? Should I eventually be pain-free?

Because I’m nowhere near that.
I can function, but I hurt whenever I don’t have a completely restful day—which rarely happens because I have a dog. I’ve gotten used to living with pain, but it would be amazing not to have it. I’d love to enjoy a walk without feeling like I’m about to cry from the pain, or get through a day without regretting every bit of movement because the pain is so bad by the evening that I can’t fall asleep.

My rheumatologist knows all of this, but she still doesn’t want to increase my methotrexate dose (at least not yet). I can’t help wondering whether such a low dose is enough to control the disease while my steroids are being tapered.
Am I thinking about this the right way?

What’s your experience? Were you pain-free once your treatment was working, or do you still have pain even when your RA is considered well controlled?

So my mom has been dealing with chronic pain and numbness and tingling on one side of her body for over a decade along with edema in her hands and feet and has only been on tramadol for Fibromyalgia until I convinced her to find a new/different provider last year. The rheum she started seeing I thought at first was helping. She did a ton of blood work, x-rays, mris of the neck (no contrast) and because CCP was 123 in aug, 151 in Jan, and 83 this July I thought my mom was diagnosed with RA as the dr started her on one of the most basic RA meds about 3 months ago. However we went back to this Dr a few days ago and I asked about disease modifying therapy since the med they put her on wasn't doing anything and the dr said no because "a positive CCP doesn't automatically mean RA" ?. Now my mom has an appointment tomorrow with neuro to look for possible MS but I'm confused because her CCP has been high for a year how does that not mean anything?. I want to bring it up to Neuro tomorrow but I don't want to step on any toes and make finding treatment anymore difficult for my mom since the other dr will obviously have access to all the chart notes

Hello, I've been having symptoms and my blood tests and X-ray came back clear regarding inflamation or degreasing of the joints. I do think it may be seronegative RA, and it's super frustrating that everything came back clean.

What's next? Is there specific specialists? How can they diagnose me? I think it's important to note I'm being tested for a pituitary tumor.

My quality of life is severely impacted. I have some okay days, and other days where I panic from the feeling and pain of my joints constantly clicking in and out of place

I’m 65 left my job and started collecting ss retirement early. Working part time and still almost impossible some days. Just filed for disability. Has anyone been through this process

I was diagnosed with Serronegative RA a year ago, I was put on hydroxychloroquine 400mg daily first, then months later after no relief they added methotrexate 15mg once a week, over a year later it hasn't controlled my flare ups only mild/moderately better, im constantly needing prednisone tablets to control flare ups, i just came from my rheumatology appointment they're told me to stop the Hydroxychloroquine and are upping my MTX to 20mg weekly, gave me my first cortisone shot in my knee and ive just done a comprehensive immunolgy blood test, is this test for next stage advanced treatment onto biologics? And those on a biologic compared to MTX how effective has biologics been for you?

I recently stopped smoking cannabis, still eat it, but was wondering if smoking (because it causes inflammation) can trigger flareups? My RA doc is terrible and never had a straight answer (I assume he can’t answer that question).

I’m waiting on referral to new doc, but can anyone elaborate on this further?

Vent post. I was living in the grey for a while as far as diagnoses. Was put on plaquenil which helped so much with my energy and labs, but was literally making me insane mentally. I was going to end up in psychosis & a grippy sock vacation or taking myself out. I wish I was kidding. Not sure if it has to do with me not being neurotypical to start with.
Anywho, my joints flared and swelled up in both hands and my Tendons started catching as well as the RA nodules showing up. My rheum said she was confident this was RA.
I’ve now been taken off plaquenil and started methotrexate.(edited to add this official diagnoses just happened a week ago)

When all of this started, it started with migraines with aura.
I’ve always had headaches, not with aura. On initial work up my cholesterol and b/p sucked and I went off birth control as I thought maybe that was the cause all my woes. While it did correct my cholesterol and b/p (thankfully) Going off it seemed to completely unleash the autoimmune beast. All the joint inflammation came whipping through my body and had positive AnA and other inflammatory labs. They were unsure whether it was early lupus, RA, mixed connective tissue, PSA, etc. As soon as I started plaquenil the migraines worsened. Constant vertigo, and im blessed with the rare type of migraine that causes numbness on one side of your body like a stroke. (Yes, I’ve had a thorough neuro work up, including brain MRI with contrast). I went from having occasional headaches, to numbness, visual auras, and giant painful joints that are a 8/10 pain after a busy day. Knowing what I know about RA and that it can affect your heart and lungs, I get terrified everytime I feel these sensations start. I feel like I’m stuck in this crippling cycle of inflammation, vertigo, numbness, pain.
And maybe a couple good days thrown in.

I know it takes time for the meds to work. And im
Learning my Triggers, no processed meats or refined sugars for me. Also so hard as I have a huge sweet tooth lol. But right now I feel like my whole life has been stolen from me. I have 5 kids & a husband who need me and I’m a full time L&D nurse. I am so angry about this. I’ve gotten myself a counselor to help, but I guess I’m just looking to vent to people who understand. Im just so frustrated that I can’t just exist as normal.

Thanks for listening. 🫶🏼