Is anyone else here afraid to use RA medication?

Bella14,
I understand your concerns. It is scary when you look at the side effects.
It helped me to look at benefits vs side effects. Kind of like a pros and cons list.
You are still young and have years to live. What kind of life do you want to have?
The goal with RA treatment is to stop the damage to your joints and organs. Only the medications can do that.
For myself, the medications are the only way I can live a life beyond a bed and a wheelchair. My pain level and fatigue without medication left me bedbound for 4 months.
I am now able to work a full-time job with some flexibility and considerations, due to the medications.
Yes, the medications have risks. NOT taking the medications also has risks. Risk of joint deformities, organ failure, etc.
The meds take time to figure out, but for me it's worth it to have a life.
I hope this helps and I'm glad you reached out.
Virtual hugs,
Mary Sophia (team member)

Hi ,

Thanks so much for posting your question! Yes, I definitely understand not wanting to take meds. I am coming up on the 20-year anniversary of my diagnosis, and I was only 22 at the time. I’ve been both grateful for and wary of meds for two decades now. Back then, there were fewer medication options. I was desperate when I got diagnosed, in so much pain that I had to drop all of my college courses, and it killed my social life. So I did whatever the doctor told me.

In 2000 I started Enbrel, and it gave me my life back and I was able to not only finish that college degree but complete a master’s to boot. I honestly think that would have been impossible without biologic treatment (methotrexate and DMARDS did little for me).

Yet, I’ve always worried about side effects and increased risk of infection. Because of that, my rheumatologists have always worked with me to adjust my medications to the minimum I can take and still have a decent quality of life. When I’m having flares, we tweak my regimen. When there’s so much inflammation over a period of time that my doctor worries about joint damage (prolonged inflammation can lead to joint deterioration), we add meds. When I’m doing well and able to stay active, we decrease them.

I was on Orencia until February. I was due for my monthly IV treatment in March but contracted Covid so I didn’t get it. Before that I’d wondered if I was doing well enough to stop the Orencia, so after I recovered from Covid I decided not go back on it. I saw my rheumatologist this week and told him I’d prefer to stay off the Orencia and just take my low dose of plaquenil, as I feel pretty good these days with pain staying in the mild-moderate range (usually mild) with no severe swelling. He said I have more inflammation and tenderness than I did while on Orencia, but he is fine with me staying off Orencia in my current state.

After 20 years of diagnosed RA, I have good range of motion, some minor joint deformity, and I have not needed surgery. I do credit meds for slowing down this degenerative disease.

So for me, it hasn’t been a question of whether or not to take meds, but rather which meds and how high of dosages. I have frank conversations with my rheumatologist about my concerns about meds, and he works with me to adjust my treatment plan to something that slows joint damage and decreases pain and inflammation, but is as minimal as possible.

This is a very personal decision. Hopefully your doctor is patient-oriented and takes your concerns into consideration. Talk through the medications with him/her and ask about the risks and benefits of each in determining what you feel most comfortable with.

I wish you all the best as you contend with pain. I know that is hard!

Gentle hugs,
Tamara

I am still afraid of them at 65 I never took anything. I think the doctors should clean out the leaky gut and clear the inflammation which causes RA. I don’t know I’ll give it to God as my faith is strong. Thank you for responding.

At 62, I am most frightened of prolonged and increased pain and disability. I am afraid if I don’t get my RD under control I will not have the life in retirement I dream of with my husband, family and grandkids. I don’t want to be sidelined. I tried for years to get the right diagnosis so I could begin to treat the cause of my symptoms. I sought out help. For me this does mean taking medications. I educate myself on each med and diligently follow any monitoring guidelines. I check the frequency that scary side effects happen - are they truly rare? I am thankful for being led to skilled and gifted medical professionals to assist me. I believe they were purposely placed in my life, and I thank God for them.