Welcome. Are you seeing a rheumatologist??? What are you taking for RA? Not for the pain, but for the disease - which is progressive and crippling. I only saw prednisone mentioned. NO methotrexate? No DMRAD? NO biologic?

RA is much more than pain. Without taking something to stop the progression of the disease, you can become crippled and it can also affect major organs like heart and lungs.

Pain meds hide and disguise the signal that your joints are inflamed and being damaged.

I think I get something similar where as soon as I get to see my Rheumy for my routine check ups any flare I "had" or weird little nags of pain almost instantly go away. I also notice the more I read, the more I study the more I think about it, the longer it tends to stick around.

Thank you for all your great replies!

I have been out of work on medical leave since July 2016, I had been working full time as an RN since 2006 when I was first diagnosed. I'm still technically employed, and can go back to my position, if and when I get my flare-up and severe chronic pain under control. My rheumy discussed Social Security disability with me years ago, I told her "I'll never stop, I'll never let this disease get the best of me". She smiled and said, "with your attitude and positive thinking, that's very possible".
I've been seeing a rheumy since being diagnosed. Started on Plaqeunil when I was first diagnosed, with no relief. Started methotrexate orally and due to nausea and vomitting, changed to injections and was on them for years until 2016. When I was first diagnosed my anti-CPP was extremely high and my rheumatoid factor was negative. Last year my rheumatoid factor became positive at 145, a strong positive (I'd have to look up the lab's normal values, but my rheumy said it was extremely high). I then started Leflunomide and have been on it since. So I've always taken RA medications to slow the progression of the disease, both DMARDS and biologics.
It's been my personal choice not to take Enbrel, Humeria, etc. as an RN I've personally seen and treated the patients that have suffered from the fatal side effects and decided the benefits were not worth the risk for me. It is a personal choice.
In April I agreed to try Humeria, however, we (my rheumy and I ) also decided I should get vaccinated against Hep A & B, before starting it. Being an RN, I'm often exposed to these diseases and felt it was too risky not get vaccinated prior to starting. The vaccines are completed over a six month period, so during that time, I've been researching other methods and choices available as I'm still very cautious about particular biologic medications and if I can find an alternative to Humeria, Embrel, etc. I would go that route first.

The pain management started when I left work in July 2016, I always took occasional pain medications and prednisone over the last 11 years in addition to the RA medications, however my pain increased to levels that were no longer tolerable. I could not sleep, eat, ambulate, etc. I had to be wheeled out in a wheelchair at the end of my shifts because I could no longer walk, the pain was excruciating! I modified my schedule, so I had a day off between shifts to "recover", etc.

My rheumy is great and highly respected in the field. She works closely with me, we talk openly and she understands and respects my decision and reasoning for refusing Embrel, Humeria, etc, for all those years.

When I started Leflunomide my liver functions took a dive, so we have to keep that in mind as well, my body does not do well with RA medications. I also suffer from Sjogrens Syndrome, Reynards disease and recently thyroid disease, I developed Graves Disease, as many RA and auto-immune patients do. I have genetic cardiac issues as well, so we also have to keep that in mind when choosing medicines. So I'm battling several diseases at once.

I've been living in constant pain since being diagnosed back in 2006, other then the two years I was completely symptom free, but I remained on my RA medications during that entire time, we just stopped all the pain meds and prednisone, as there thankfully was no need for them.

I agree, spending too much time dwelling, researching, etc can make things worse, yet I find that because of the constant pain, I want to resolve the pain, stop taking the pain Rxs, etc. I never even took Tylenol prior to RA. I have huge RA nodules, gained over 60 lbs from the prednisone, while eating a strict diet of 1200 calories or less daily consisting of proteins, veggies and fruits with minimal processed or fatty foods. My inability to exercise and the prednisone were the culprits.

It's hard to explain, as we each have such a different journey. Prior to RA, I walkedy dogs 10 miles a day (5 miles every morning and 5 miles every night, rain or shine), rode my horse every day, had huge vegetable and flower gardens, maintained a large property and huge Victorian home,
volunteered for dog rescues, fostered and trained dogs in my home, ran a successful antique business, all while raising an amazing young man as a single Mom and working full time as an RN, and loving every busy and active minute of my life.

The RA hit my like a brick. I woke up in pain one morning so bad I went to the ER. I called in to work for the very first time in years, my employer was shocked and concerned, because I never called in, I went to work even if I didn't feel good. My theory always was, "I can be home and sick or at work and sick, so I might as well go to work". I gave birth to my son naturally, because I didn't believe in pain medications, etc. So this is not me, this is not who I am. I'm am active, happy, positive, non stop person, I was never lazy and didn't enjoy lazy days, naps, etc. My idea of fun was always something active. I miss who I was and am just trying desperately to find my way back, even if just a little bit, to who I really am inside.

Welcome

It's really hard to have this disease severely impact an active and full life! I think a lot of us experience the same loss to some degree -- it's almost like a death in the family. The inconsistency and unpredictable nature of the disease makes it even worse. Hopefully this flare will let up and you can slowly get back to some of the things you used to do. It's nice that you have a great relationship with your rheum - I am sure a lot of folks on this forum would like to have that as not all rheums look alike.

Thank you for your warm welcome!

What you said about the disease's inconsistency and unpredictable nature is so very true!!!

I just want to at least get back to work. My rheumy didn't seem the least shocked that I discussed applying for SS Disability, I asked her "Should I apply for disability?" and she said "yes, I think that is reasonable at this time. ", I just didn't think I my RA would take my career and income. Hopefully, this flare ends some day. I have hope, I read about others in this fight that are able to work and be active, so there is hope! I am blessed to have such an amazing rheumy, I was lucky that my PCP knew her well, she was not taking new patients when I was diagnosed, yet she agreed to see me as a professional courtesy to my PCP and since I was in the medical field as well.

i like your individuality and how you have approached stuff with your own individual course of action based on your co-other-illnesses and stuff. I think it's funny that after a decade with this disease, I bet folks that just meet you feel like they should voice in on your current treatment plan. I get that a lot. I bet you do also. I find it humorous. We are all too intelligent after a decade with this disease. I want to add my own two cents tagged onto the end of your story. For SOME folks there is NO possibility for living on SSD. If you are the income and single parent - the only thing that can be modified for decades on end (however long it takes to get kids through college so call it 22 years) is one's approach to pain control and attitude and modifications and accommodations to diminishing function. Sometimes the choice is there is no choice. That's where I have used your quote above - I can be home and sick or at work and sick. I loved that you typed that. I also think my rheumatologist is amazing. It was nice to read that in your post. You have a partnership in this disease. I do also. Isn't it great? I get my medical information from her and my additional minimal adjunct you know i hate to say it but like ra lite support from online.

I also appreciate your frank feelings about the biologics, for you. I have the same feelings. I suffer from frequent lung infections the past decade always worse while on biologics. I also had a very close office mate die from a blood cancer after 3 years on remicaide for her auto immune (lymphoma). This does not mean I do not take biologics it just means I think and have to do what is best for me. It's function and pain versus co-illnesses and real warnings. I appreciate reading your point of view.

depot

Thank you for your kind and heat felt response. Yes, it's our journey in the end and we have to follow the roads that work for us.

About 9 years ago, I was caring for a patient. She just turned 50 and she was admitted due to uncontrolled pain with her RA. She was a single Mom with a 16 year old son and ran a successful real estate company. She was bubbly, outgoing and full of life. She was so active and busy, friends and co-workers were constantly visiting, her 16 year old son was there often as well, the room was full of life and happiness. After a few days, things changed, she was diagnosed with lymphoma. I asked he MD, my co-worker, "was it due you the biologic?", he responded, "yes, sadly, these are the possible side effects". He was cautious in his answer, he knew I had RA and he didn't want to scare me, he knew I was not on a biologic at that time.

That patient called me into her room one afternoon, this once beautiful, bubbly, lively lady patted the bed and said "sit down my RA friend, I want to talk to you. Promise me you never take this medication! If I knew I would die from it, I would have never started on it. I never thought I would be a statistic". She looked so defeated.
I watched attornies come and go, into her room, as they rushed to handle her end of life needs. I watched her devastated and confused son sit there as she tried to explain finances, business, etc. I decided for myself, then and there, I would never take a biologic, no medication was worth that side effect. For me personally, I would rather be in a wheelchair in pain and alive, than pain free and ambulating with the possibility of those side effects hanging over my life.

She passed before the planned transfer to a hospice facility was even completed.

I spoke recently with a high school friend who suffers from RA, she was in the hospital for over 3 weeks after she suffered infection after infection due to her RA treatment choice. She was 42 years old. She told me, the doctors actually suggested that her husband start to "get things in order and start planning for the end". She pulled through, against all odds and she said after that, she has decided she will longer take biologics and her rheumy agrees with her choice. She has three young girls, she suffers from pain every day and said she wouldn't change a thing, she "would rather spend a day home with her daughters in pain anyday, than the alternative."

For me personally, I have decided after 11 years to try a biologic. My rheumy, is supportive either way. I will hope for the best. Keep trying to find an answer or a choice in place of biologics. I will not need starting it for four months, until I have my last Hep B vaccine. But, I must say, my gut still screams "NO" and I'll never forget the advice I got one rainy afternoon in a hospital room from my new "RA friend".

I do not tell this story to scare anyone. The stats show that these side effects are infrequent and low, I just personally made a choice 11 years ago not to take that risk and be a statistic. Now the pain has become more than I can deal with. The other RA medications failed, one after another. Prior took this decision, I had personally decided I would rather suffer from side effects from taking pain medications and prednisone with a DMARD, than the side effects of taking biologics, however my choice has now changed, I have run out of options. I'll keep you up to date.

Take care my rheumy friends!

thanks for sharing this. my office buddy on remicaide who subsequently died from lymphoma took me aside when she was diagnosed and told me to stop MY biologic at the time. i know i compartmentalized her painful advice to me. i could not even tell my girlfriend then or my best friends or even my boss when he asked what was wrong at that time. it was easier NOT to think about it. too painful. these are memories we can not forget and they are not the statistics on the black box. stats are just stats until it is someone in your life. i guess I am up for rituxan review by my rheumie this summer. the pulmonologist has signed off. we'll see. keep on moving.

depotblue

I have never taken any biologics and truly do not know what signs to watch for. Your rheumy would be the best person to talk to about the possible sides effects and the risks versus the outcomes.
PLEASE understand, this is just my personal choice, don't stop what you and your doctor started!!
I made my decision after years of research, and experiences, but now I'm going to be starting a biologic in four months, because the other RA drugs are NOT working for me, so my back is to the wall and I've decided that I'm willing to take the risks based on hoping for a better outcome and a better quality of life.
I joined this site, only to discuss my experiences, we each have our own jouneys, and that is all I'm trying to do. I'm not giving any medical advice, just writing about my personal journey on this road they call RA and trying to learn from other people's journeys as well.
I'm sure your MD is guiding you correctly and that your decision and your personal medical care plan is right for you. There is no right answer for all of us, we each have different levels of the disease with other factors that effect the medical treatments our MDs feel use right for us as individuals.

Hello
After reading Jenny’s posts, I think I made a right choice for not taking any of the biologic drugs those were introduced to me by my RA Dr. and successfully taper off the Prednisone and completely off MTX. Right now I’m taking eastern medicine and feeling bit by bit better as I wake up every morning . 5 months ago , my body was locked up every morning. I couldn’t get out of bed without my wife help. Even with Prednisone and MTX, I still had great difficulty. I started Eastern Medicine around middle of March and begun to taper off the Prednisone. April 15th I stopped taking MTX and by the end of April I was completely off Prednisone. Now I can wake up without any kind of stiffness at my knees, hips, shoulders. The only joins I can feel some pain are my middle finger of my right hand and the left ankle. But the good news is this pain is minor and manageable. My family and friends can notice my improvement every day. I still have 2 months to go with this medicine. I have a lot of confidence with this medicine to cure this crazy disease. I thank God for guiding me through this journey .

linzsey
celebrate your remicade if it is giving you function as a gift. the best ra bud i have took remicaide for a long time years and years. her turnaround physically was incredible. she went from losing her business as a self employed middle aged success story to hospitalization to back to some semblance of life. success for her as a remicaide patient. we all balance. she knew about the risks. we all do. I have been on actemra, ,enbrel, orencia, humira, infusions and/or injections. your thoughts should also be discussed with your rheumatologist. It's better when it is further away and real life losses in our lives do not exist from these meds I do agree with that. It's easier to compartmentalize it that way, for me. From what I see on here, some folks do their own research, poll others, use Dr. Google, and talk to their rheumatologist and/or their specialists if they have co-illnesses. I was caught totally off guard when I had a doubled cholesterol, boils, and wacky blood work numbers from actemra within a couple months. I had not had allergic reactions to three prior biologics.

depot

Are you on any RA meds now? My RA is well managed by Riruxan now (9 1/2 yrs), but there was the day when I was taking 75 mg oxycontin, 3 x 600 mg ibuprofen and tapering from 30 mg prednisone. But it was all part of a process, stepping through this minefield.

An interesting note. I saw my RD yesterday, and after getting through the usual BS on timiming of my infusions, he asked me if I ever wondered if I could stop Rituxan, and if I was afraid to do that. No, I'm not afraid, but why kick a sleeping dog, and why do you keep (I get the question every couple of years)?

Hi linzsey. Try not to worry about what could go wrong with Remicade, but do pay attention and keep notes of anything weird. I found that I am allergic to it and had to stop (I'm happy to share if you want), but I had immediate relief when I started. I like the "embrace Remicade" approach.