Coming off all my medication
Hi everyone I’m new I was diagnosed with aggressive rheumatoid arthritis 4 years ago. Iv been on methotrexate and 4 different biologic infusions. The side affects have been awful and having low immune aswell I have been constantly ill. So I decided at beginning of February to come off all of it. I just want my immune back and to feel well. Has anyone come off their meds that can advise me please
Hi Gypsie,
I'm sorry you've had a negative experience with medication. I totally understand where you are coming from. These drugs are no joke, very intense stuff. I never had as bad side effects on the meds as you did but after having used 10+ different medications in 10 years, I was pretty fed up and looking for alternative solutions.
After doing tons of research I got the idea that I could heal my arthritis with a holistic approach and that I didn't need the medication. I was so confident and excited to embark on this new path sans medication that I made the decision to come off the biologic (Actemra) I had been taking for 5 years... and I did this without talking to a doctor. I would definitely not recommend that to anyone and I honestly wish I could go back in time and take it back.
I started to consistently flare up a bit just a month later and then I got the COVID vaccine and I had the worst flare-up of my entire life. Every single joint in my body flared. I couldn't do anything by myself, my boyfriend was my full-time caretaker, and yet I still didn't want to get back on meds. I was determined to move past this on my own with strict diet and lifestyle changes.
I ended up having to take a short dose of steroids to help calm the inflammation but I didn't get back onto medication until a year later. That was when I finally realized that I made a mistake coming off of them. My joints/functionality had never been worse. My RA is/was too aggressive to improve without the medication.
I still believe there may be a world in which I have my disease under control with meds and I feel my best because of diet/lifestyle and then maybe I can taper off of them but I would only ever do this under the guidance of a doctor. I learned my lesson big time. I have permanent damage now that I didn't before. This disease and these meds are seriously no joke.
How have you been feeling since you came off of them? Are your joints worse or better? Do you see any improvement in your immunity/illness? It could be a matter of just trying a different medication. I know how frustrating that can be but unfortunately, it can take many meds and many years to find what works for you.
All the best,
Franki
thanks for the information 
@Marcela I have been on multiple different biologic medications. Honestly, I get a little anxious with the first dose each time. As I understand it, infusion reactions are way more common and rough with the first infusion. My reactions have only been with the first dose, been mild and responded well to slowing the rate. I Hope your next infusion goes smoothly and that Actemra brings you tons of relief! Jo
Hi Franki
Thank you so much for replying, I think I needed to hear this from someone who tried to come off meds,
It’s been 8 weeks since I came off my methotrexate and infusion and I am in agony.
I was determined to stay off but today I started my methotrexate again because the pain throughout my body is excruciating, hopefully when I speak to nurse I will start infusions again. I’d like to thank you very much for sharing your story and giving me an insight as to what to expect although I don’t believe I can cope for the length of time you stopped your medication.
Love
GypsyG (Gail)
Here is a great article from our own site!
https://rheumatoidarthritis.net/what-is-ra/stages-and-progression
In my personal experience, imaging helps determine the stage. And my doctor is the one who told me what stage I was in at diagnosis. I'd recommend asking your doctor what stage they feel you are in and how that affects the choices you need to make together for treatment. I'm hoping you are getting closer to treatment and those pesky teeth issues are behind you. JoThank you so much. I have started MTX ,increasing dosage weekly
Thank you so much for replying, you made me laugh and at the same time opened my eyes to the truth about natural remedies, I haven’t really tried the natural way but so many people tell me it’s the best remedy.
Obviously not but I will still endeavour to look for Big Foot.
Again thank you for talking the time to reply.
GailI had to quit methotrexate and couldn't afford biologics, I tried going no meds and it was not successful. In addition to constant pain, my joints were deteriorating, so my doc put me on Leflunomide. I am doing better with it. The side effects are not as bad, but during the cold damp winters I have to add steroids due to flares.
I respect the passion here for treating RA progression and symptoms with medication, but we also have to respect those who make other choices. Let's please continue to share information, but try to do so without passing judgment. Best wishes. - Lori (Team Member)
Ask your doctor about enrolling you in a free Humira (or other biologic) program. My doctor completed the paperwork and then Abbvie (Humira Pharma) contacted me. I had to complete a form they sent me and send a copy of my prior year’s taxes to them (you must not exceed aa certain household income). They approved me and shipped the meds to me every 3 months.
