Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Hi! I'm Angie. I was diagnosed with RA two years ago and it seems it took forever to pin down a suitable treatment regimen. I have been on hydroxychloroquine since the beginning, then added methotrexate injections once a week, and after having an awful reaction to Humira injections I have been on Simponi Aria infusions every eight weeks for the past 6 months. I have finally gotten to a comfortable place; I just hate that I have to give myself chemo injections every week and put biologic drugs into my system to function. I am now researching diet changes, and it sounds like I may need to tame my sugar addiction... Any information on diet modifications for RA would be most welcome 🙂 Have a great day!

Hi,
I have been recently diagnosed ( July) with RA and experiencing the crippling flare up pain that it comes with. After many blood tests and X-rays I have been placed on 5 mg of prednisone and plaqunil.
Every joint in my body aching and find little relief, not even sleeping.
Just wondering other folks experiences when they were trying to find answers for trying to get to a balance of some quality of life

Hi,

New to the group. I am from rural Wi so it took quite some time, years to get a referral to a Rheumatologist.

After 15 years of suffering with severe pain and multiple joint issues and surgeries, including reconstructive surgery of both elbows and feet and a failed carpal tunnel surgery that left me disabled, my physical medicine doctor did an ANA and it was very high.

I was referred to a Rheumatologist. I was diagnosed with Undifferentiated Connective Tissue Disease and most likely RA. No positive labs. This diagnosis was in 2018. Plaquinal I was allergic to so started on methotrexate. Since 2018 we have maxed out on the medication. As long of 2 weeks ago MRI shows bone erosion in several of my joints and spine. Last week I started Cimzia, which caused significant nausea but I am told it can take 4 months to work so will to put up with it for now.

For pain I am on Celebrex for pain but even that does little for the pain. Allergic to Fentanyl and Morphine’s. Allergic to ibuprofen so have tried Tylenol up to 4 time daily most days.

I have been through the pain clinic at Rochester, which basically taught me to keep moving and decrease stress. I am now retired from my nursing career since 2018 and on SSDI and LTD.

I am on Dupixant from my dermatologist. So 3 autoimmune medication currently.

To say I am miserable is an understatement but I try to focus on 1 day at a time. I now spend winter away from my husband, in Arizona until April as I get really good relief there. My husband will retire in 2 years but I wonder if I will be in any shape to travel as we had always planned. I am losing more and more function each year. I was 40 when this started and now 58. I worry about my quality of life in the years to come especially since the pain is so bad already. Sleep is another big problem.

I do stay active and walk 3 to 5 miles most days of the week and really work to push through my pain. I bought a Peroxide hot tub last year and use it almost daily to exercise and relax my muscles. I have lost 30 pounds over the last couple years as recommended so exercise plays a big role in maintaining the weight loss.

What advice do any of you have about pain relief? I see a NP in Rheumatology as my Rheumatologist retired and we did not get a replacement.

I am struggling and could use support and ideas from this group!

Thank you,
Sheri

This is just my experience! I have had RA for many..many years and have been on many medications..and from the beginning I can tell if the medication is going to
work for me. The side effects start and I can either tolerate them or not. I weigh out
side effects vs pain relief I’m getting from the medication. When I’m still hurting and suffering from side effects I talk to my doctor about trying something different. I have always had good luck and years on the same medication with lots of time between flares. Good luck. Trust yourself no one but you knows how you feel. Diane.

Being on Prolia for quite a bit of time can make the bones in your mouth weak. I was on Prolia for I think 1 year or more? after my chemo, spent a fortune at the dentist. What I suggest is to go on line and read all you can about. I wish someone had told me, my Oncologist never did until my teeth were loose.

Welcome to Mayo Clinic Connect @fanning ! As you can see, there are many discussions going on and many members helping other members. I’m sure that by tomorrow, you’ll have several responses. You can find another rheumatologist if you feel that the NP is inadequate. I say that because you need to have a good talk with your doctor about quality of life. Are you anywhere near a big city? Or a comprehensive medical center or university hospital? You are more likely to find the doctors you need. You can also contact
NORD. National Organization for Rare Diseases https://rarediseases.org/
GARD. Genetic and Rare Diseases organization https://rarediseases.info.nih.gov/. The websites are very similar but the organizations are not. Both of them have list of specialty doctors and will help you find one in your area. I sure hope you’ll find one. I’m also going to ask the mentor who covers pain management to get in touch

Sounds VERY similar to my experience. Prednisone was my lifeline for quite a while until the methotrexate started working and then it was still rough until we found a biologic that worked for me in tandem with the methotrexate. I feel so much better now after two and a half years. I hope you find a treatment that brings you some relief soon.

Hello @fanning I'm sorry for all you're going through . You're not alone. I join you as a PRC graduate and graduated Jacksonville Florida's program 4 years ago. Understanding the principles of the PRC program, there is a lot built around scheduling moderation and modification, mindset, stress Management, exercise, sleep hygiene, healthy diet - while these aren't things that are going to necessarily take pain away ( I think we both understand chronic means just that - it's with us for life ) but these are tools to help manage or perhaps lesson symptoms. FYI I'm voice texting which is one way I use modification, in case you see typos.

Kudos to you on walking 3 to 5 miles that is amazing. Please give yourself credit. So often we get down on ourselves because of our obstacles and it's easy to lose sight of what is good what is positive and what we should be proud of. Sometimes this whole management thing is about reshaping mindset and reframing how to view obstacles - pulling in the viewfinder. These may not be the most popular tips and tools but at the end of the day sometimes that's all we got. It sounds like you're working at trying to keep yourself in the moment and not get ahead. That can be a tough one to do. I attached something that I find helpful in readjusting my mindset. At times I truly need positive distraction like doing something nice for someone or being impactful somehow to feel better about myself. I like to call it a brain vacation, getting mind off of symptoms. Do you resonate with these feelings too?

Is unreasonable to ask for a pain control plan for my RA? I am, thinking it would be much like an Asthma control plan? If so…
-who do I ask?
-where do I start?

No Rheumatologist but do have a CNP in Rheumatology. They don’t do any muscle relaxers or narcotics. I see pain clinic but just for denervation procedure on my back which is where much of my muscle cramping comes from especially in a flare, my back. Used to see physical medicine doctor, love her but she turned me over to the spinal specialist for denervation procedures.

I need advice

Than You Becky,soooo much! I will contact both rare diseases. No one that I know had autoimmune diseases?
I a have a good Rheumatologist finally! Between the Small Fiber Neuropathy Sojgrens I'm in pain all the time. Oh, forgot to mention, failed Laminectomy 5 levels, no day with out pain. Never had Ceverical spine pain, now I do. Few pain Meds work???????? My husband is very good to me but I can't get over the guilt.