r/rheumatoid

For context, today is Weds morning. I had my first dose of methotrexate last night. I followed all the tips I got from you guys and other threads. Don’t want to jump the gun too early but I can honestly say I don’t feel too shabby, apart from a little headache and tiredness. I’m on 15mg tablets for 2 weeks then upping to 20mg, with 5mg of folic acid every day but dose day.

My plan was:

Sunday / Monday - HYDRATION! 2+ litres of water, sipped on electrolytes throughout the day, lots of protein. 5mg folic acid.

Tuesday - HYDRATION! Sipped electrolytes in the evening, had a protein & carb heavy evening meal (chicken, rice, beans and veg) and some ginger biscuits before taking dose at 9pm. Kept sipping water until bedtime. Felt a bit itchy? But managed to sleep with no issues.

Today (Weds) - Woke up with a headache similar to a mild hangover but no nausea whatsoever! I’ve been sipping electrolytes, water and popped some paracetamol for the headache.

Hoping I don’t curse myself and feel awful later in the day or that the dose next week will be grim 🙃

BUT I hope this helps a few of you who are struggling with the side effects. Obviously we are all different and what works for me, won’t work for others.

Good luck everyone ❤️

Hey folks. I started MTX and my nausea and lack of appetite got BETTER, my fatigue got BETTER, and my hair has not fallen out and my hands and feet don’t hurt. Please please try to not go down all the rabbit holes of side effects and be open to the possibility that you might feel so much better on the meds. I honestly didn’t know how much longer I could survive before the prednisone and the MTX. I lost weight BEFORE my diagnosis and had horrible brain fog. My point is, please trust your doctor, because I see so many people saying “ I don’t want to start MTX because of all I’ve read.” Well, do you want your joints to be further destroyed? Don’t be afraid of side effect you might not even have. Eat a full meal with your meds and drink lots of water and remember that the benefit/risk ratio matters. 💕💕🌸

Was diagnosed 6 months ago after my elbow was locked for a year and couldn't straighten it anymore. Then came the knees and toes and fingers. I could somehow always work around the pain but hips is on a totally different scale. The pain is so bad I cannot eat much due to the pain or walk anymore without dibilating pain and hips locking. Had to quit my job as I could no longer attend the office.

I've been on MTX and Sulfasalazine for 4 months and getting worse. Had steroid shots and still nothing. I've lost close to 35lbs in 6 months. Used to be a big guy into the gym and now can't dress myself and looking at possible wheelchairs now, I can't put on socks or trouser, i feel my life is done and some days not worth living. Had dreams of starting a family one day.

I've just turrned 35, Doctor won't see me for another 3 weeks and has prescribed me the same drugs. Will this nightmare ever end? I drink alcohol daily for my mental health which isn't good but at least can escape this hell for a few hours a day, I'm not that bothered anymore about MTX and booze mix, would rather risk some relief. The only relief I had was from prednisolone on very high doses 25mg + but my blood pressure got so high they nearly sent me to ER, it seems one thing works but has 2x negative effects. It makes sense life expectancy is so low if the disease isn't in control. I read 26 years on average after diagnosis, I'd feel lucky to see another 5 years in this state.

I'm not really religious but sometimes think I'm being punished for something, it's strange. Sorry for the rant, I guess I am hoping there are anomilies out there who have somehow made it out or made a somewhat normal life from this horrific disease. If you are in remission take life with both hands and make the most of it.

What has your doctor said about weight loss drugs like Wegovy? Should I even bother asking?

Thank you!!

Does anyone else just feel so damn defeated by how little the people around you care that you're immunocompromised?

It's like they think that because you're young, it doesn't matter that you have no immune system anymore. That even with vaccination covid sent you to the hospital. That a flu lasted 2 months and left you wiped out for another.

"It's just allergies!" until it isn't, and then it's "just a cold!" Well sorry, but I don't want the cold either! Every time I get sick something about my health gets worse. I mask and wash hands and take precautions, but I can't survive when someone else brings it home and just doesn't *care*.

I'm just so tired. I wanted to go out for once today and try a new cafe, and now I'm going to Walmart to pick up Dayquil and vitamins to try and not get sick or at least be prepared.

I just want to cry. So much for all that crap society tried to spout about how my 30s would be better than my 20s.

For almost two years I’ve dealt with inflammation that’s spread through my foot, and in my left hand. Other joints are also compromised by compensation. Like I’m sore everywhere even if I didn’t work out. The baseline fluctuates but I’m never not in pain. Basically took the last of my teen years and followed me into adulthood. I’m supposed to deal with it until I see a rheumatologist in like 6 months. Though doctors suspect rheumatoid arthritis.

But I just feel so angry all the time. Even when I’m in a good mood the anger is there in the background. and my patience is gone for everyone, especially able bodied people— I know that’s not fair, it’s just a feeling. I don’t express these feelings outright or take them out on people, but I always wanna punch a wall.

My college friend even remarked that I’m different cause I “used to be the sweetest person ever” and now I’ll just randomly get sharp in ways they wouldn’t expect from me.

Just a rant, but if you’ve dealt with pain for a long period of time, have you found a way to manage the stress or anger that comes with it? or do you just channel it somewhere? any insight would help

So I'm taking my first dose tomorrow night. The doctor said 2.5mg so I thought that was the total but I'm dumb and she meant per tablet. So that's 15mg once a week for 6 weeks. She wants to be aggressive treating me even though I can handle the fatigue and pain with monsters and Tylenol.

Idk, I'm definitely doing what I've been told to do but it seems like a lot compared to what I'm currently experiencing? I'm also taking 15mg prednisone tapering down by 5mg to nothing for 3 weeks.

My other questions are: is 6 weeks long enough to suffer hair loss? I'm taking 1mg of folic acid

How bad has your experience been regarding fatigue? My job is stressful so I really want to enjoy my weekends. Just wondering if I need to be ready to call out/my choice of timing will be a mistake lol

After the 6 weeks I'll be stopping with no taper. Is this typical and will any side effects I'll be experiencing go away immediately? Thank you for taking the time to answer

EDIT: Just wanted to say a BIG thank you to everyone who has commented so far/will comment. I've learnt a lot already and I am making a list of things to ask my doctor when I see her next. Still a little scared of what the future holds but I'm grateful to have found this supportive community. Thank you for helping and answering my dumb questions! ❤️‍🩹

Just had my first rheumatology appointment and feel so incredibly defeated. Two doctors (my doctor brought in another doctor at the very end of the appointment) determined I just have tendinitis and need to do physical therapy. They also said that it’s possible I have fibromyalgia and made me do a check list which I scored low on because the options for areas of pain did not correlate to where I’m feeling pain. I’m thinking about getting a second opinion but I would like to know if that’s crazy from you guys. Here’s a brief rundown:

- 2 months ago I started to get really bad pain in my toes and ankles. I didn’t think much of it because I work on my feet all day.
- 2 weeks later everything got very painful. EVERYTHING. Every joint in my hands, especially my thumbs, my shoulders, elbows, hips, knees, neck, ankles, and toes. Everything bilateral. I couldn’t move without being in pain. Nothing was swollen.
- A week of no relief I went to urgent care. They ran some basic tests. Everything was fine except I had a high crp.
- I followed up with my pcp. She ordered more test. Everything fine. I requested a rheumatology referral.
- Waiting for my rheum. appointment I’m still in pain constantly. Can’t work properly, can’t keep up with house work, can’t sleep, can’t have a fulfilling social life. Ibuprofen and Tylenol do absolutely nothing. The lowest pain I experience is a 4/10 and no longer than a day. Usually it’s a 6 or 7 with 8 being on bad days. I spend so many days in bed because I can’t do anything

I don’t know what else to do but I’m desperate. I can’t keep doing this. They said I need to be more active but I’m so worn out and in so much pain after work that I can’t do anything.

Hey all, I’ve had pretty severe RA pain in the metatarsal joints of my right foot for about 2 years now and I’d love to know what you all do to help with that? I have a medical boot I wear when the pain flares up pretty bad because that’s the only thing I know that makes it stop hurting after a few days. I also wear compression socks/braces almost everyday as that sometimes will help with the pain and definitely helps with swelling. Any particular brands of footwear or orthotics that might be helpful? Also it is just in my right foot and it makes me wonder if it is because I drive with my right foot? Every time I hit the gas or brakes I feel pain which makes me wonder if I should learn to drive with my other foot for a while? Please help, I am so miserable!

I have ra at 20 (had symptoms since 12 though) and I was wondering if you guys have any tips for pain? I take medicine for it but recently its not helping and im getting really bad pain. I do sometimes take thc/cbd for pain but not all the time since I take meds

Hello! I am on two RA meds (hydroxychloroquine and sulfasalazine) that cause my skin to be very sensitive to the sun, and I burn very quickly. This is my second summer being on them, and I had two bad facial sunburns last year, even with re-applying sunscreen often. I want to avoid getting another as much as possible!

I always wear sunglasses and try to stay out of the sun because I am also very pale, but I'm looking for a sunscreen, preferably one made for the face, that I'm planning to wear both in the shade and the occasions when I will be in the sun.

If it's helpful, I'm from New York State, and I would say I have sensitive, combination skin. I typically wear SPF 50, but am open to a higher SPF! I'm not picky about chemical/mineral. I just want to find something that works :)

I (21F) have a friends 21st birthday party on Friday. I haven't drank since before starting methotrexate (roughly a year) but I would really like to have a drink or two at my friends birthday. Friday is my injection day (and also the day I'm increasing my dose from 17.5 to 20mg), and I was wondering if it would be okay to have a drink or two before taking/or moving my dose to Saturday? I would really appreciate any opinions!

Just over a year ago I was finally diagnosed with RA after some issues with my skin and also gallbladder, though I’ve had symptoms that were written off since I was a child. Due to already having liver fibrosis and an extensive amount of allergies my Rheumatologist put me on Humira right away, but also can’t/wont give me much else to go with it. Methotrexate is out because of my liver, and I can’t take Sulfa drugs due to allergies.

The issue is that when I was diagnosed I would say symptoms were mild, even if they were in most joints. I would get moments of intense pain, but generally very little swelling and I could still function fine. Pain would last for a day or two. Now, however, I have experience some type of pain and swelling in at least one new joint every 3-5 days. And it’s swelling to the point I can hardly move the affected joint. Last week my knuckles swelled so bad they bruised. Today I had to get my ankle brace out and take my shoes off at work because my ankle started swelling.

Clearly the medication isn’t really working (it really only did for the first three ish months) but I’m also really concerned about the speed at which this has progressed. It took years to get to the point I was at before starting meds and now just over a year later I’m significantly worse off than I was before.

Outside of just venting, has this happened to anyone else? I’ve also been wondering if I could possibly have more than one autoimmune issue? I’m going to be seeing the doctor soon but doctors tend to be a bit clinical and like to hear others actual experiences.

What kind of condition causes bilateral elbow pain inner and outer (bruise like to touch), same with both shoulders mostly ac joints, inner side of shins on both legs, outer side of knees of both legs, lumbar region pain after being in forward bent position for a few seconds and then goes away after straightening the back. Same with elbows- pains when doing shampooing, grabbing something from cupboard for a good few seconds with arms in the air etc but pain goes away after dropping arms down- all tests negative (Blood works, MRI, X-rays).
Rheumatologist put me on Dulexotine for a few months suspecting Fibromyalgia, but except for making me sleepy the whole day, it didn’t do anything for my pain.

P.S Way back in 2019, I experienced a sharp wrist pain under the line of pinky finger and next day woke up with high fever and pain all over the body. And the pain has been consistent ever since then (no swelling, redness or any changes in the joints).

Pls help pour in all your thoughts as I’m exhausted running for answers for the last 7 years! 😕

I’m just venting. I don’t need advice. I just need to bitch about human nature. People really need to learn how to be empathetic when we have a flare. So my voice sounds fine over the phone? That has nothing to do with my joints or the fact that letting my chihuahua out to pee leaves me exhausted. Thanks for understanding. 😡😡😡 I’ve lived with chronic fatigue for 30 years and now RA and sometimes I just want to punch people for how STUPID they are.

Hi all,

I was wondering if I could get some advice as my partner is currently going through what we believe is early signs of RA (waking up in the morning with very stiff knuckles, swollen index finger and joints etc). This only recently happened (3 weeks ago) but she said she may have noticed very slight stiffness since the start of the year but nowhere near as bad as this.

She has been given Vimovo and recently got Ketoprofen gel which doesn't seem to be relieving any sort of pain. She has gotten a referral to see a Rheumatologist so just waiting to hear back.

In the meantime, is there any sort of tips/tricks she can use to gain some relief? So far we have tried an ice pack which gives temporary relief anyway.

Thanks!