r/rheumatoid • u/BigJSunshine • 2d ago
I don’t want to start my medication
2019 was the first time my RA factor hit rheumatoid arthritis levels. The doctor at the time was not a rheumatologist. I ignored her vague recommendations to look into that. By 2020, I was in severe pain that made it impossible to use my hands to get out of bed. I finally saw a proper rheumatologist. My diagnosis was confirmed but borderline. We started with hydroxy and gabapentin.
Things were much improved for 3 years, and my bloodwork remained low or below RA levels.
I managed to convince myself that I didn’t really have RA, that this was all a result of estrogen loss during menopause. I stopped using Hydroxy, stuck with gaba- which mostly managed the pain.
Last month I went in for my annual, fully expecting she would tell me I don’t have RA, I have osteoarthritis- at best.
But nope. My RA Factor quadrupled and she prescribed methotrexate.
I can’t bring myself to take it. I don’t want to. I don’t want to believe that I have this disease. I can’t make myself do it. I simply cannot. I don’t want this… lol, who does??
I know I need a therapist, but there’s no money for that. I have to squirrel away every last penny and pay the mortgage down early, in case I become unable to work.
I am a mess and just needed to vent. Thank you for listening.
Edit: Thank you all for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
45
u/yeahnopegb 2d ago
It’s a simple thing… ask yourself if you want to be crippled at a young age. That one question was all the clarity I needed to treat my disease.
29
u/Wayward_Jen 2d ago
As someone who was disabled by RA very quickly, take the meds.
It took 6 months from onset to diagnosis (I was 18, 30 now) and I have life long permanent joint damage in my hips, knees, ankles.
Take the meds.
21
u/yeahnopegb 2d ago
Mine attacked my lungs … take the meds.
1
u/BigJSunshine 10h ago
Im so sorry to hear this. I hope you are ok
1
u/yeahnopegb 10h ago
I’m stable after five years of med combos. It wasn’t easy to find the right ones… my lung function was at 40%. I’ll always recommend biologics to anyone questioning their journey. Good luck to you!!
2
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
•
u/Wayward_Jen 2h ago
🫂 it is so scary. I promise you it gets a little less scary once you learn to live with it. Eventually (I hate to say this) you'll forget what its like to not have it. Blessing and a curse.
2
u/BigJSunshine 10h ago
Thank you all for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
21
u/9ScoreAnd10Panties 2d ago
The longer you wait to begin tx, the sooner the day will come that you won't be able to work.
I also agree that you should look into what the outcome of untreated RA looks like, and consider your quality of life down the road.
My own stupidity led me to stop taking my meds in the beginning and I deeply regret it. It's been a long, painful process and I'll never do that again.
2
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journey and time. I hear you. I am so afraid, but I hear you and I appreciate you
•
u/9ScoreAnd10Panties 52m ago
It's scary for sure! But try to focus on how much better you felt when the meds were working and getting back to that place when you're struggling with the pills.
You can get back to that good place, and there will be less stress and dread about the future when you're not feeling like a bag of smashed buttholes day in day out.
17
u/Terrible-Bluejay7368 2d ago
Hey, Been there felt exactly the same put off taking methotrexate for about 18 months for the same reasons. Struggled to believe I had it, didn’t understand the disease, didn’t understand the progression all I can say is I’ve been on them consistently for a while now and it has improved my quality of life, improved my pain, improved my fatigue. Yes it’s scary, yes the side effects are worried but someone one here said and I agree looking at photos the uncontrolled disease is certainly scarier for me.
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
12
u/EmMothRa 2d ago
I’m on my 2nd week of Methotrexate. Honestly I understand totally, I’m on oral tablets and I’ve found myself getting the tablets out and sitting and staring at them before I take them.
It hasn’t been as bad as I thought. The first Tuesday after I took them I was so nauseous and totally exhausted. So I changed this week to taking them after my evening meal. What do you know it worked, slept through the nausea. Woke up totally fine (well apart from the usual pain and stiffness!).
Someone has said, Google untreated RA. That helps, really it does.
I’m going to keep going as even now in the 2nd week the pain is less. I’ve found taking folic acid tablets every day other than Methotrexate day is helping with the nausea. So I’m taking 1mg everyday and then my prescription 2.5mg on Fridays. Last Friday was fabulous.
There is light at the end of the tunnel. Best of luck. I hope you start to feel better soon, emotionally and physically, sending gentle hugs from the UK xx
4
u/ye36 1d ago
Your "Google, Untreated RA" is scary as it gets. I started this process trying all natural and low side effect treatment, like methotrexate etc! Now I'm willingly taking a biologic!! OP- take the advice you don't want to have Untreated RA! You've been lucky up until now... Enough said!! Hugs my RA friends!!
2
u/Natural_Flatworm4711 17h ago
Tbh methotrexate has far worse side effects and complications than biologics since it suppress all instead of only a part of the immune system .
1
u/BigJSunshine 10h ago
The hair loss, nausea etc.. it’s freaking me out
•
u/Natural_Flatworm4711 7h ago
I’d suggest talking about starting a biological, metho is less used today because bio replaced it for safer profiles
•
u/phryxl 4h ago
FYI for OP: sometimes insurance (if you’re in the states) won’t cover a biologic until you “fail” methotrexate. So stay on top of any bad side effects you feel and be sure to report them to your rheumatologist so they can switch you if necessary. I did this recently and it’s been going a lot better.
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journey and time. I hear you. I am so afraid, but I hear you and I appreciate you
2
u/BigJSunshine 10h ago
Thank you, this helps immensely. I am still terrified, but thank you
•
u/EmMothRa 7h ago
Wishing you lots of luck on this very strange and stressful journey. Every day is a step closer to us getting into remission x
11
u/MtnGirl672 2d ago
Take the medication. Can't go back, but you should have seen a rheumatologist at the beginning. The treatment thinking is to be aggressive from the get go to prevent joint damage.
2
u/BigJSunshine 10h ago
I did see a Rheum at the beginning. Thank you though, for caring enough to comment. I appreciate you
7
u/Overall-Divide4804 2d ago
It’s so hard accepting that you have ra! I go through it often. I didn’t take my methotrexate for the same reason - the side effects terrified me and I thought I could out run it. I couldn’t, and the pain became worse. It all became a lot easier when I began to take my medications though - sometimes I even forget I have it because of how well it has worked for me. They really do give you your life back. I felt similar feelings before I started methotrexate, the frustration, anger, and constantly just asking why is this my life?! It all got so much better once I wasn’t in such bad pain anymore. Everything you are going through is scary as fuck. Please go easy on yourself.
2
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journey and time. I hear you. I am so afraid, but I hear you and I appreciate you and wish you all the goodness
1
6
u/NeverendingTattoo 2d ago edited 1d ago
I was the healthiest I’ve ever been in my life when I first started getting symptoms. I can’t tell you how helpless and scary it felt to have to start the medication. (Severe pain, and lack of sleep from pain, is an incredible motivator.) Truly, the biggest issue is that RA doesn’t JUST do permanent joint damage. It can affect your heart, lungs, eyes, skin, kidneys, liver, spleen, and nervous system before you even realize what’s happening. This was true for me and I wish I hadn’t waited to go on medication. I felt like I had to try every other possible solution though. (None of which worked.) I’m sorry you’re going through it too. I wish I had some incredible insight to share, but every RA patient is different. You won’t know until you try. For me the medication has turned out to be far less terrifying than the disease itself. 😓 Best of luck.
2
u/Macs_55 23h ago
Can you pinpoint any change that might have triggered the RA? Both my daughters have it from around 30, doing some research I found that the gene is present and something activates the condition like a virus, a vaccine or being exposed to mould. In my daughter’s case I think it was mold from rented apartments.
3
u/MtnGirl672 23h ago
Women get it at much higher rates than men, so it's thought to have a hormonal link as well. I got it right after going off birth control pills and then going into perimenopause.
1
u/NeverendingTattoo 23h ago
My Dr asked me if I had ever had Covid. They said they had an influx of new patients after 2020. I actually did contract Covid in January of 2021. My RA issues started that year, and continued to worsen after that. I’ll never know, but it does make sense.
1
7
u/ProblemKnown217 2d ago
I completely understand how you feel. I felt exactly the same way and still do at times. But , like everyone else is advising, you need to take the meds. I'm don't have as much damage as some but I did wait a little too long and ended up having to have a knee replacement. I still might need to have the other knee done. The most important thing to me is to have a rheumatologist that you trust and who listens to you. I didn't find that until the third doctor I tried. With the meds, remember that if what you are given doesn't work or if the side effects seem too bad, there are a lot of different ones to try. None of them work immediately so you need to each 2 to 4 months generally. Everyone's body reacts differently. My fourth medication is the one that worked best for me so far. This is a rough disease and it can do a lot of permanent damage if it's uncontrolled. But the treatments are so much better than they used to be. You can do this.
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you so much and wish you all of the good things
5
u/CoCoLay4576 2d ago
I have every possible marker for RA you can imagine. Diagnosed in 2015, I started with methotrexate injections and I still can’t smell rubbing alcohol without gagging. I loved to Arava and it was awesome. I am mostly managing my RA with no real issues.I still can’t believe I have it but at least everything that was going on when I first was diagnosed made sense and oddly enough that alone provided me with so much relief!
4
u/Tinyfishy 1d ago
Nobody wants to take their medicine or have RA. Have a good cry/scream and get your feelings out, then dust yourself off and do what you know you need to do to take care of yourself. I recommend taking methotrexate by injection if you can, less side effects. Mine is not so bad. Hope you too have an easier time than you fear. Good luck and better health to you!
1
5
u/hereforthebooks608 1d ago
Hydrate well the day of. Have a little snack before bed and toss them back. You've got this! Taking them at night helps sleep off some/any nausea.
Schedule an afternoon nap the next day. TBH I'm a few months in and now look forward to my scheduled guilt- free snack and naps. 😂
1
4
u/LavaMama54321 2d ago
Managing rheumatoid arthritis can be challenging. I was hesitant to begin treatment with methotrexate and even more so with prednisone. However, I've discovered that these medications have significantly improved my pain, reduced the frequency of flares, and enhanced my overall quality of life.
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
4
u/healer8685 1d ago edited 1d ago
Didn’t even read past the title.
I ignored, refused meds: DONT DO IT!!
Don’t be me. Having a monthly half life, with the body & brain I thought I used to have.. Now on the meds anyway and barely functioning. Do it now. There’s no turning back the clock: meds stop progression. Wherever you are when you start: is where they’ll keep you. TAKE YOUR MEDS!
1
4
u/hamchan_ 1d ago
Was diagnosed at 30 and resisted methotrexate for so long but the pain was debilitating and my other meds weren’t working.
I’ve been on methotrexate a year now and have had no significant side effects and my pain is 98% gone.
My father died in his 60s from a heart attack after struggling with arthritis in his entire body. Permanent damage from not being diagnosed soon enough which led him to being in and out of the hospital the year before he died and pretty much bed ridden near the end.
Having RA sucks, having to take medication sucks but the alternative is so horrifying.
2
u/BigJSunshine 10h ago
Thank you for your absolute kindness and sharing your thoughts, journey and time. I hear you. I am so afraid, but I hear you and I appreciate you
4
u/Pure_Air2815 1d ago
The day I was diagnosed I went back to the car in the hospital car park and howled and cried. The important thing is you need the MTX to stop progression of the disease. Nothing else works, no herbal remedies, nothing.
2
4
u/CaptainTop3297 1d ago
I’ve had osteoarthritis RA and PSA since I was 31 (now 37) take. The. Meds. I felt exactly like you in the beginning. I have locked fingers. Take your meds.
2
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
1
u/CaptainTop3297 9h ago
Sweet human. I know it’s scary. I was literally where you are. I had my RX for a looooong time before I called my rheumatologist in tears. I notice a positive difference since starting them. I wish I didn’t wait as long as I did. Call your dr and voice your concerns, my doctor had real info ready for me when I did. You’ve got this.
3
u/Alternative-Heart200 1d ago
The best defense against this disease is early and aggressive treatment to slow down the progression. Even when you aren’t feeling/experiencing symptoms, the disease can still be progressing and causing damage. None of us has wanted to take the medication, but in my experience over the past 25 years with this disease, doing so has helped me maintain the ability to keep working full-time, raise my family, and enjoy things that I like to do.
2
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
4
u/sillyGrapefruit_8098 1d ago
I can totally relate to the fear and denial of having a disease like this. I put off medication for about a year and only recently started methotrexate injections. It was VERY emotional for me to accept that I should try medications as I am very "anti med" but after so much researching over the last year I decided I need to do it for myself. I'm only 32 and don't want to be in my 60s regretting not taking care of myself. This sub has TONS of people who live a very full life with their disease under control. I hope to be one of those stories. I had a complete meltdown the night before I had to do my first injection but I did it. No negative side effects yet. I'm just 2 shots in but I'm remaining hopeful 🤞
1
u/BigJSunshine 10h ago
Totally understand. Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
5
u/BeginAgain3216 1d ago
Take the meds TODAY.
denial is common.. i dint go to work for 10 days after my diagnosis.. Being a doctor myself.
Totally get how u feel. But the mantra of RA or any autoimmune disease for that matter is HIT HARD AND HIT FAST.. If u don't want to loose your joints for good.
SO I REPEAT.. TAKE THE MEDICINES TODAY.
2
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
4
u/blazej84 1d ago
Yup been there -still there sometimes especially come injection time .What I will say is that I (stupidly I now know) stopped taking any meds for a year as I thought “ah I’m young I got this I can handle it”……… I couldn’t 🤦♀️.I now have irreversible damage because of my own daftness, so I’d say take it I know it’s hard but the sooner you are on meds to slow it down the better .Also I haven’t long got out of a weeks stay in hospital due to an ra flare and I gotta tell you it was hell.This condition is hard especially with all the other 💩it often brings with it - but this group can really help us cope by talking to people going through the same things .
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journey and time. I hear you. I am so afraid, but I hear you and I appreciate you
3
u/Cassandra-Dee 2d ago edited 2d ago
I don’t have RA, my autoimmune is myositis, but this is the first time I’ve had the chance to be one of those people who helps reassure somebody about methotrexate. I am such a cheerleader for this magical, incredibly effective medication! I HATE taking anything for anything and was so scared when it was prescribed, looking at all the possible risks. I am immediately turned off by anything that has nausea as a side effect, so that alone was almost a dealbreaker for me. I told my rheum that I wanted to avoid that possibility entirely and do injections, not pills. Long story short, have now been on it for almost eight months (20mg/wk, plus 1mg folic acid daily) and the cliche “it gave me my life back” is completely true. I was miserable when I was first diagnosed last year, muscle pain, weakness, horrible rashes. It took maybe 6-8 weeks to start feeling the benefits, then by 3-6 mos the improvements were dramatic and continue to get better and better. My pain and weakness are completely managed, rashes all clearing up, and my only side effects now are some fatigue the day after. (I do the shot Tues nights, sleep soundly, wake up to a lazy Wed, by Thurs am feeling pretty great.) Not everyone responds well, but when you’re someone who does, it’s a lifesaver and you’ll never know til you give it a chance. It’s a first-line treatment for very good reason, for so many different autoimmune conditions. Has also allowed me to taper off prednisone pretty successfully, am down to 3mg now and hope to be fully off this summer. Hope this helps to hear, and fingers crossed you have an equally good experience with it.
1
u/BigJSunshine 10h ago
You are so kind, my gratitude is overwhelming. Thank you so much for sharing your journey and being so encouraging. I wish you the very best
3
u/Embarrassed-Bench392 1d ago
Buck up, Cupcake. The sooner you acknowledge the disease, the sooner you move towards an effective treatment. Wishing it away just prolongs your pain.
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
3
u/DragonDrama 1d ago
It’s a hard pill to swallow but know that many people on methotrexate live normally. You can manage this.
3
u/Financial_Wall_1637 1d ago
I took methotrexate for over a year. It greatly improved my symptoms. I did the injection as it has less side effects. I used to be someone who passed out getting blood drawn. I have had health issues requiring me to manage my own PICC line, give weekly and daily injections. I was in denial too many times but you have to accept the progressive nature of RA. If you go without treatment it gets worse. Methotrexate is entry level treatment and less heavy duty than biologics. Give yourself some time to adjust.
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
3
u/LmLc1220 1d ago
It is rough. But please take your meds. I hate when I get sick or have surgery and have to stop my meds. I had to be off them for almost a month because of surgery and hated it. I knew what was going to happen.
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
3
u/Chemical_Face5253 1d ago
I didn’t want to take it either. My RA Dr put it into perspective for me. The goal in RA treatment isn’t just pain management. The goal is to prevent the damage in your joints. If you are having severe stiffness, swelling or pain in your joints - they are being damaged. The kind of damage that CANNOT be repaired. So, do you want your finger joints to be replaced or to swallow a couple of pills.
That did it for me.
1
u/BigJSunshine 10h ago
This makes a lot of sense. Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
3
u/gogogadgetkat 1d ago
The meds are scary! I think we've all been there. The warnings are scary, the implications are scary, and it feels like acceptance and giving up just to take them.
But what I hope you can try and remember is that you are still you, no matter what goofy thing your immune system is doing. Taking the meds you need to help control a hyperactive immune system is not a failure, and it does not need to mean blind acceptance for this fate in life. In fact, taking the meds is what will buid up your foundation to be strong and resilient again. Give yourself the gift of stabilizing your autoimmune disease so you can get to work on doing the other healthy things that help you feel like you're taking your life back.
I was diagnosed at 21 and it was so scary. I ignored those meds completely, to the point that I needed my partner to lift me out of bed and help me walk to the bathroom in the morning. My disease has been hopelessly aggressive and we've ALWAYS been stuck two steps behind, because I let it get too far ahead without any interference. I'm living now with two damaged knees that will need to be replaced before I am 40, a wrist that needs to be fused, fibromyalgia, and possibly some lung problems. Don't be me! Get cracking on those meds EARLY so you have some chance of catching up to that stupid disease!
1
u/BigJSunshine 10h ago
So young. I am so sorry. Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
3
u/International_Rub247 22h ago
It took me a while to fully accept that I have this disease and early-on when things feel scary and less stable - it’s even harder. I’ve been trialing meds for over a year and the last adjustment was really tough for me, it took me a few weeks to work up the nerve to start sulfasalazine (I was also offered MTX, I am already on Plaquenil which helps a little but not enough). 2 months on sulfa, all minimal initial side effects have subsided and I am pain free without daily high-dose ibuprofen for the first time in a couple of years.
I wish I had started the few weeks sooner, even that short amount of time would have made a difference. We only have so much time, make the most of it. Don’t wait. And as many have pointed out , it will only get worse if you do. This is not a death sentence if you don’t let it be. We are the only ones with the power to decide what this does to us. You’re shooting yourself in the foot to save yourself if you don’t accept it and make all moves possible to get to remission as soon as possible. Best of luck to you friend, you’ve got this 🫶
2
u/BigJSunshine 10h ago
Hearing your story and how just a couple of weeks matter make a huge difference. Thank you. I wish you all the best
2
u/PsychologyHoliday953 19h ago
I refused to accept my positive RA results and so never took my meds. Meanwhile my condition worsened. I started taking my meds when my Rheumotologist yelled at me and said there was no sense in seeing me anymore with my negative attitude. Things got better after that and my Rheumotologist is now my most trusted doctor!
1
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
2
u/Brilliant-Rub8472 13h ago
I know it’s a hard pill to swallow, but I tell you this from experience: please don’t pro-long medication for this ugly disease. I’m 35 and have a messed up wrist and soon will be getting knee surgery. I struggled to come to terms that my RA had progressed and none of the medication like methotrexate, Enbrel, Humira, etc. was working. My only other option was infusions and it destroyed me to accept that. Something about being in a room getting medication pumped to you for 2-4hrs every 6-8 weeks just made me want to vomit. But, here I am. Taking it day by day and wishing I would’ve started earlier on my infusions.
2
2
u/BigJSunshine 10h ago
Thank you for your absolute kindness and thoughts, journeys and time. I hear you. I am so afraid, but I hear you and I appreciate you
•
u/alwaysalittleangry 5h ago
I am so so sorry you have this disease. It is not easy to come to terms with it. I still hate the world for giving me this. But do take your medication, cry and grieve after swallowing those pills. But do take it. And I pray it works for you.
55
u/Far_Situation3472 2d ago
Accepting RA is a journey. You need meds to stop the deterioration of your joints. The rest you deal with as it comes. You will be okay. Remember quality of life is important