Hey all, hope you’re all getting through the start of the holidays! I’m guessing there are several posts about Humira in here, but I couldn’t find a specific one to my side effects. I’m curious if anyone has a suggestion to help ease some of these symptoms. For me, I inject twice a month (every other week). I get horrible headaches, and throw up for about a week after injection. It’s almost worse than having an RA flare up. Anyone else?

Does Ra cause high BP?

Has anyone experienced these types of scars appearing in your RA journey? Having lived with RA for years and gone through many medications i developed my first Keloid scar about 18 months ago, followed by a hypertrophic scar following surgery a few months ago. Has anyone noticed any kind of relationship between these issues or thoughts on how to manage it? I can’t help but think it might be medication related but could be wrong.

Thanks in advance for your thoughts on this.

how was your experience in terms of any inflammation and recovery? thank you in advance.

Hello all,

First time poster, long time lurker. So, my backstory: I am a parent that worked as a nurse and was diagnosed when my youngest was just beginning school/kindergarten, classic textbook RA signs, so it didn't take as long as others (but also wasn't quick either).

It quickly became clear I could no longer do the long, stressful hours on my feet, among the worst germs, even with medical management from my rheumatologist, so I pivoted to shorter hours in the classroom as an assistant teacher. I absolutely loved this and wanted to get my MAT to teach, but was in pain every single day after work and coming home to care for my own family, could barely move, and I caught everything: covid, flu, strep, etc, even being fully vaccinated. However, somehow I mostly got sick on weekends or holidays, so I was a very reliable employee, but just.....suffering constantly.

So, then, a person not to give up? I finished out the years there, through June. I'm in school for computer science, did well for a while, but recently have had a flare for a few months that's making this complex work impossible with my recent fatigue and pain in my hands with the constant typing, etc. I contacted my rheum who is trying to help me get out of this flare.....

But, I am faced with: having a convo both with my school and with my doctor at the next appt. We do have my DHs income, but need a part time income next year, at least, in this economy. Obviously, my plan was to work in tech, entry level.

I....am able to parent well, and that's about it right now with my energy levels and pain. I found a disability lawyer (which, once successful, this forgives my student loans...as the only thing that does is disability or death).

I think my biggest mistake, though, was not accepting how debilated I was when I went to progressively making less and less money because of this disease.

I have already grieved this, and my hope is to be fully functional, enough to complete my degree.....but, truly? It's a tough degree for a normal person without fatigue, and I am only half way through because I cannot accelerate (it is asynchronous, have not been able to do any of it for 2 months). I figured it was my best hope of earning a living and working from home, because I had few/limited second career options with RA, and already being a parent once diagnosed.

I guess I'm just looking for some hope, and some commiseration. I never thought I would be a stay at home mom while my kids were school aged, but we can't afford to outsource on one income, so I would continue to be primary transport, grocery, social planner, cleaner, etc, and maybe it would help me just ....not overextend myself? I have a great husband who cooks and such when home, but works long hours. I cannot stand for extended periods without sitting. So, when I do the dishes, I then have to sit for 10 to 15 mins with a mug of tea before doing something else, usually laundry bc I can sit doing that.

My plan is to talk to my doctor at the next appt, and ensure documentation is up to snuff because I believe I have a case (clean slate, always great employee, 4.0 student, historically)....it's clear it's not gaming the system, but I also know most are denied the first time. I do plan on hiring a lawyer. It....was tough for me to realize, but I did literally everything I could. And, maybe in 5 years? Things will look different, for me, as treatments improve, but I am already 5 years into this and 3 eventual failed immune meds. But, right now, this is the reality, and I quite literally cannot do it all, even on treatment and sleeping enough, hydrating, ensuring B12 and iron are good, thyroid normal, etc. (I do have endometriosis that is maybe tied to RA, managed through my GYN).

Hugs to all of you out there! I'm trying not to feel like a loser, because it feels like I'm "giving up," but truthfully, I think I'm confronting the reality in front of me, that has been glaring for half a decade.

Thank you, all. I will add to comments here on things that have helped me (like anti fatigue mats for doing the dishes and such, and truly, the hot water feels good on my hands).

I'm thinking of doing small side job for a bit of income, like dog walking, for healthy exercise and a bit of stimulation, but I am not in a position to even add anything, right now. And I don't know how that affects disability anyway ...I wouldn't say 8 hrs a week of dog walking is gainful employment, but I also know the state is looking to deny people as often as possible, probably.

My arthritis had been a lot less problematic lately, but I took a collagen supplement 4 days ago and now I'm in agony. Am I crazy for thinking it was the collagen, or has this happened to anyone else?

Does anti ccp comes positive in gout? My ra factor is negative but ccp positive and uric acid level is 6. My Dr said it's gout and prescribed me febustat.

He has been with me from the start, 5 years now, and my biggest advocate.

He was the lead senior Rheumatologist in the trust I am in - I know I was very lucky.

I only found out this week whe emailed him about some problems and within his reply he added he's moving to a local private healthcare provider.

He is an older man I'd say 70's so he isprobably cutting down due to this. (And obv the money lol) anyway I feel lost. We had a great relationship. He has left me a email and mobile number to text for advice which I found very thoughtful.

Now im under some random Dr's team and before I even got to meet anybody our first appointment was cancelled with 4 days notice :(

I wish I could afford to see him in his new practice, but stupidly i was only 30 when became ill and private healthcare wasnt on my radar. Now, obv existing conditions are not covered.

I could cry

Advice? 😔

Share your stats, years since diagnosis and pain level.

Ill start - diagnosed 2 years ago.
CRP - 24
ESR - 50
RF - 32
Pain level - 3/10 overall, the worst part are my wrists atm, I cant ride my bicycle or hit the gym.

I had blood work done on 09.19.24 which showed my RF at 201 and anti-CCP at 81.

On 10.08.2024 (a few weeks later) my RF was 210, but my anti-CCP was <5.

My doctor called and said my labs looked okay, but I’m baffled. Can these values drop so quickly, and what does that usually mean?

I'm currently in the process of applying for disability – I have both Osteo and rheumatoid arthritis. I'm still working full-time, luckily my job has been understanding and have been very patient with me, but I can tell that they are becoming tired of my condition. I am a packer and a trainer, have been workinh here for over 10 years, I can no longer lift or work the way I used to. I have been suffering with this for over 10 years now. I got a call from the disability office and they told me I make too much money while working full-time… $100 too much money... I have a call with my local disability office on Monday and I just want to make sure I understand how the process works. I guess my question would be what is your story or process when you applied and got approved? Does one need to be working part-time or not working at all? Also, do they call the doctor to receive your medical transcript or do we provide it?

Hi! I’m 27f that has been recently diagnosed a few months ago. I have been taking sulfasalizine for a while but my pain is still pretty bad and my mobility is only getting a bit better. My rheumatologist has me on a prednisone taper and added MTX. I took it Friday and I am so nauseous. Anyways, my hair has been thinning out for some time now before I even started taking any medication for RA/PsA. Any recommendations for the hair thinning? I did get some blood work down by my pcp and I do have low iron. I have been taking iron supplements, biotin, and pumpkin seed oil but it continues to thin out. I really hate my body right now.

Has anyone on the methotrexate injection lose weight from it or helped you lose weight because you can exercise more with the pain subsiding?

Thank you in advance!!

I was recently given a prescription for Cyltezo which is a self-injection pen and stupidly I wasted the first pen.

After I injected it, I wasn't sure how painful it was going to be, and after the pain of the injection hit I instinctively pulled the needle away from my leg before I could even start counting to 10. The first pen I injected into my upper leg area if that helps.

I tried using an ice cube to numb the area but I could still feel the needle pierce the skin and I'm looking for something stronger than that.

I'm looking on Amazon for numbing creams/gels but I'm not sure which is the best type to go with. I see 5% lidocaine gels/creams but I wanna make sure wherever I inject the next douse is good and numb to the point where I can't feel anything in the injection area.

Does anyone who uses self-injectors have any recommendations for numbing creams/gels?

38f ra. So I'm on my 2nd week of enbrel and see about 20% reduction in swelling in my hands so far.

I've always been a little depressive, and having ra has of course made that worse. I used to think of suicide as something i could do far into the future, if it ever got bad enough. And I've had flares so bad in the past i could barely move, and suicide ideas went way up, but still wasn't that close to me, still a future thought.

The last week the suicidal thoughts have been ludicrously high like never before. The crazy part is i dont even feel that bad physically, like maybe pop an ibuprofen or 2 here and there, but not even eveyday. My symptoms are fairly mild right now quite honestly. So why are the suicidal thoughts crazy high? It feels like it started when it started taking enbrel. It'd be nice to blame side effects making my life worse, but really i dont have any side effects except a bit of a low grade headache...which is annoying but tolerable as I'm prone to migraines so a little light headache isn't bad. However i will say I haven't noticed it that effective except in my hands...my neck, base of skull (i think this is from my jaw pain), shoulders, blah blah blah still has pain, but again, not horrible.

So what the hell is the deal? Last night the suicidal thoughts got so bad as i was trying to go to sleep that i bolted upright and had a mild panic attack. Stayed up with my wonderful husband for 2 hours and told him all this while crying, which helped. But the thoughts got sooo bad that they didn't even feel like my own... that's never happened before and it was really scary. I dont know what my deal is, but shit needs to stop. The only factor that has really changed in my life is the enbrel. It seems to have started at the same time. However everywhere says that depression, suicidal thoughts are NOT a side effect of enbrel...so I'm wicked confused.

Anyone have any insights? And yes, it's on my list to contact a therapist on Monday.

Hi peeps, I just wanted a little bit of motivation and some words of encouragement due to being at a standstill with my rheumatologist. I'm 24/Female, in September I was admitted into the hospital after an ER visit for severe leg pain and numbness and tingling in both feet and severe eye pain, I had super high BP 160/110 and heart rate of 120 baseline but nothing showed up other than MY normal high readings in bloodwork. I was admitted because they suggested an MRI of my back because my doctor already had a plan for it after my physical therapy was completed. I did the MRI and they found a lot of desiccated and degenerated discs and when I say a lot I mean c-,2,3,4,5,6, T-7,8,9,10. a couple hemangiomas in my thoracic spine, loss of cervical lordosis and bulged disc on my L-5 & S-1. Degenerative disc disease runs on my father's side but the doctor said it still shouldn't have progressed so much. I also recently a couple weeks ago I had a large bump in the crack of my leg behind my knee and i went to my primary and they suspected it was a bakers cyst but they did an ultrasound to check and said it was a possible inflammatory process and prescribed me prednisolone and I'm going for more bloodwork soon and follow up. I'm at my wits end and the process is starting to make me feel so dramatic like my pain and well being is more important than everything else in my life and I know it is to an extent but I feel like it's my whole life trying to figure out what is wrong with me. I want to get on a plateau so I can start focusing on bettering my life and having fun with my kids without having to pause because of pain. Thank you for the rant ❤️

Hi everyone,

I am 25F and newly diagnosed with seronegative RA. I am on Meloxicam, Hydroxychloroquine, and just started Humira a few weeks ago. Due to not being able to exercise from RA and being 1 year postpartum and freshly done breastfeeding, I have gained a lot of weight.

I’m not sure if anyone here has seen a dietician for these things to help lose weight and eat a less inflammatory diet? Thoughts on this?

Well for the first time since being diagnosed I had to call in sick. We have a winter storm going on and I woke up to a migraine, my neck, shoulders and wrists feel broken. Today is my methotrexate day so I know I’m about to feel worse. As I was eating breakfast the power went out. My husband had to take my truck to work. I had 3 minutes left to call in so I said eff it and I did. I’m back in bed, on my phone, head aching with any movement (I’m sure I didn’t drink enough). RA. The gift that keeps on giving!

This is more just a rant. I’m so frustrated. I am newly diagnosed and I informed my coworkers of my diagnosis. A lot of them don’t vaccinate, they don’t believe covid is real, and they come to work sick. I work in a very small office, with absolutely no air flow, and I’m unable to leave that room for a shift. I know I should wear a mask...but I’m honestly scared to around them. They are very judgy and make fun of people who wear masks. They are the kind of people who have told me I can cure my aggressive form of RA with Cayenne pepper. Not dogging on alternative forms of care but that won’t help me. I know I have to just do it, wear the mask, but I also think I need to just find a new job with a better environment.

I’m not looking for anything….just wanted to vent to people who also deal with this. I mean it isn’t hard to just stay home if you’re sick!!! Even if I wasn’t immunocompromised I wouldn’t want to be around a sick person! So my boss was at work today hacking up a lung, with a sore throat, and now I’m laying in bed wondering if this feeling in my throat is me getting sick or just my anxiety/dry air. Haaaaa. I haven’t been sick since I started my medication….and I’m nervous for that first time.

Hi all, happy Thanksgiving! I had a Reddit account earlier this year and was lurking this thread for a bit to read people’s comments on their reactions to meds and symptoms. for a while, I’d search for threads about plaquenil and then get super anxious about taking the med because of what I read. I ended up deleting my account because it wasnt helping with my health anxiety in taking new meds. Anyway, a kind coworker of mine forced me to take one pill (200 mg of plaquenil- brand) and nothing terrible happened! Hurray! Some of the reasons why I was afraid of taking plaquenil because of hearing about heart issues, or weird dreams, or stomach issues.. and I am not experiencing any of that. My mom also has RA (among many other things) and does take meds for her heart and anxiety and takes the generic version of HCQ and the swelling in her hands went away in one month. She also takes half of the pill everyday and is doing well. I haven’t noticed major changes expect my fatigue has improved. I don’t have major swelling (just one thumb slightly) but have pain in my hands and also stiffness in all my other joints and neck/back (may not be related to RA). I hope this post helps you if you’re anxious about taking plaquenil and have been diagnosed recently. You got this! ❣️ Don’t be afraid! I know we all have different bodies.. but Be afraid of losing function of your hands instead! Hope this post helps you! I know many of you have helped me with encouraging responses when I had questions. Thank you!

I did a quick google search and have read that Humira can cause insomnia, but I want to hear it from real people because I'm exhausted and honestly just need some reassurance.

I had my second dose yesterday, and the last 5 or more days I just can't stay asleep, I wake up every two hours and then it takes several hours to get back to sleep for multiple reasons, not all linked to my RA. I've been on Humira before but it was many months ago now and I don't remember if it gave me insomnia then or not.

So I don't know if I have RA (currently looking into getting an appointment to get it checked), but have recently had a lot of issues with pain in my fingers/wrists, so I had to call in sick for my piano group class today and I just feel like a failure for not being able to attend. I've never really been one to back down from stuff because of pain, but this is just too much to handle even for me... Is this something that others in here did/do when the pain was/is too much?

Hi! I have an unusual situation and I didn't get any traction in the Psoirasis sub.

To make a long story short, I have a long standing rare vasculitis diagnosis. I've been on infliximab for about a year; before that, Humira. Both used off label and worked well-enough for my disease.

I moved abroad this summer and it took a few months to get infusions set up in my new country. During that time, I developed plaque psoriasis patches on my legs. Very small, but no doubt what they were. Not particularly surprising and I didn't think too hard of it. When I was finally getting prescribed my infliximab here, I mentioned them to the doctor and they told me that they could refer me to a dermatologist and wait for the formal diagnosis, or they could pretend they didn't see them and write the infliximab prescription now. I chose the latter.

I got my first infusion on 8 November and while the patches are a bit better, they're not healed yet. Plaque is mostly gone, but they're red, angry, and itchy still.

I am mostly asking here to see if anyone with plaque psoriasis is on Remicade/Infliximab, because I was curious how long it took for the patches to heal? I am mostly just really tired of going to the doctor because I've been poked at and run around a lot the last few months due to the move. Thus, if relief is just around the corner, I'd rather just sit tight. Especially since I don't speak the local language.

Thanks.

I have not told my family yet. Not even my husband. It's been 6 years since my first symptoms. In all this time, I've never received a diagnosis, but as of last week, all my labs now show it. Elevated RF, elevated CRP, elevated CCP (definitely positive and only two points away from what they label as strong positive), ESR, all the stuff.

I have managed 10/10 pain for a long time. Cared for our home and 3 young kids. Figured out other ways to pick them up when my hands wouldn't work, how to cook when I couldn't get things out of the oven, how to use other parts of my body to lift myself up and down on the floor to be a mom to them despite the seering pain, stifled my reactions to hobling up the stairs in the middle of the night when the kids needed me and leaned against the wall to inch one step at a time back down to go back to bed, managed to take them hiking, fishing, horseback riding, and all kinds of adventures. Most days my ankles feel like someone has cut my feet off and done the worst job sewing them back on - like all the severed parts are just rubbing together held on by thread like a character in Coraline. If I tell myself it's just pain I've been able to let it exist with me instead of stopping me. I don't want this diagnosis. I don't want to be forever sick. I don't want to have an autoimmune condition. Right now, the news isn't feeling like a relief or finally getting an answer that can be helped. After 6 years of no one knowing, I had hoped it would all just go away.

I don't want to spend months failing medications and dealing with side effects.

And then there's part of me that wonders - but will I be able to do more? Can I finally kick the 40lbs of inflammation and weight that won't come off - or will the meds make it worse? Will I finally be able to build muscle again? I've spent years fighting through the pain to workout and strength train. I'm strong, but have nearly no noticeable muscle definition despite it. I once had a personal trainer fire me as a client because even though she could see me getting stronger, she thought for sure I wasn't losing weight or gaining noticeable muscle because I surely must've been stuffing my face every second she wasn't with me. Will I lose my hair - it's beautiful and full and has always been something people noticed about me? Will I be able to ride and train horses again? Will hiking and exploring with my kids become something I enjoy again instead of something I fight through the pain to do for their sake?

I see so many posts about all the negative parts and med failures side effects. Did anyone's life get better? Did you ever get to restore the parts of you that RA side-lined?

UPDATE: in another flare now. On thanksgiving. Boo.

I’ve been in a weeks-long flare since ending my initial steroid taper. A few days after stopping the steroid, the swelling and pain returned with a vengeance. When the steroids ended, I began sulfasalazine. That was about six weeks ago.

A few days ago my fingers were so painful and swollen that I caved and took Aleve (I gave myself gastritis with NSAIDs when this disease first started, so I’ve been using it sparingly with marginal success). It took about eight hours for the pain and swelling to decrease, but when I woke up, it was all gone. It has not returned. It’s been three days.

I hope this means the meds are working. How long did it take for you to notice an improvement on sulfasalazine?

I've tried Remicade, Kineret, Enbrel, Orencia, & now Taltz (off label use) Now this makes me so angry, because I feel the Kineret really helped. Then I had to change doctors & he immediately switched to me to Enbrel for no given reason. Then he took me off the Enbrel & it's taken well more than a decade while progressing slowly but poorly to find another doctor to start me back on a biologic. I feel had he never taken me off the Kineret, I'd be so much better off. I wasn't having any side effects & unless he failed to mention it, my labs were fine too. So now I'm stuck going through the whole process again. I'd like to try Kineret again and we're wondering if any of you have had a similar experience & had a doctor that put you back on one that worked better, or at all, than the ones you rolled the dice at in order to garner better results?

38f RA. Im bored out of my mind. Staying modestly active with my treadmill, but its not the mental health thing i need. Ive always gone for walks\hikes outside all summer and the cold just makes my joints freeze up no matter how warmly i dress, making exercising way more arduous. I am immunosuppressed from the meds, has so many of us are so I wear a mask everywhere. So going to a gym to get a little bit more social interaction is not ideal. Ever tried to hit a treadmill with a mask on your face? Not fun.

Not just the exercise either, there's just a lot less to do without being able to go outside as much. So I guess I'm looking for any helpful tips or suggestions to occupy my mind and help my mental health while being stuck inside for the large majority of every day. And no I'm too damaged to work, so I don't get out that\have that focus that way either. I tend not to hang out with most of my friends as they all have kids AKA germ factories. Call me paranoid or whatever you want but my life is hard enough without getting horribly sick.

Currently I have a few games on my phone, obviously some TV shows, books and magazines I read, and I do puzzles. I do not own a four-wheel drive vehicle so options for driving places are limited as well. But the monotony of every day is starting to really grind on me and it's only the beginning of winter! Yikes!

I just turned forty six and moved to a new state when my JRA just seemed to start acting up full force again. It's never been in remission, but was the progression had been steadily controlled over the last 3 decades. I was diagnosed with juvenile onset rheumatoid arthritis back in 1986. I've always been a picky eater & doctors always said to eat what I will eat. Now that I'm getting older, feeling much older, & have very limited range of motion & weight bearing capabilities in my upper body with which limits building muscle, I was just wondering what has worked for my fellow community of RAer's? Thanks in advance ☺️

So I had a slow leak in a tire the other day, no biggie went to a gas station but didn't realize how difficult it was to twist off tire valve stem caps so I could fill the tire. Partly it was ridiculously more difficult because I had been off meds at the time and partly because it was 18°F. Bad combo for those with RA! So I'm scouring Google and Amazon looking for valve stem caps that are much longer so I can actually grip them easier, to no avail. The only things I found were valve stem extenders which are known to cause tire leaks that can lead to blowouts... Not interested in that! Other than that I have found funny things that go over the valve stem cap like colored dice or magic 8 balls or even tiny little penises which is hysterical! But not really helpful because they go over the cap and are not the cap themselves. If they were the actual cap and made it easier to take off, I'd gladly cruise around with little penises on my tires! So I was hoping maybe someone out there in the RA world has a tool or knows where to get valve stem caps that are longer so that I can actually take them off without swearing at my car for 20 minutes just to put air in my tires? Let me know thanks in advance!