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Life is a Journey, RA just makes it an Adventure!

I had been hospitalized in October of 2013 for 6 days with Pneumonia…

I think that was the beginning of this journey!!! After that, it really took off. Dermatologist said I had Lichen Planus, my primary care doc said I had Tennis elbow?

After I requested that I be referred to a Rheumatologist, my adventure began. Methotrexate, Enbrel, Simponi, Arava… now I am on Orencia infusions and plaquenil.

I had to change some of the meds because of reactions and also concern for the lungs. My “pneumonia” was more than typical pneumonia!!!

I have lots of morning stiffness, pain in my elbows, feet, knees, hips, wrists and oh yes..also osteoporosis!

Sound familiar to anyone? Please tell me anything that rings a bell!!!

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Comments

  • Heather Wysong
    5 years ago

    Hello I too feel like I’m lost I don’t have the labs to say it’s RA but I do have all the symptoms! Steroids cause my blood sugars to go to high but they do help immensely with break through pain so with that being said they don’t want me on them all the time! I take enbrel and hydrocodone for pain 7.5 mcg/325mg of Tylenol three times a day! Most days I’ve taken the full dose by three in the afternoon! My right hip lower back on both sides and right hand and knee are affected! With the cold snap in TN I am heading back to my rhuemetologist Friday! I am so tired of feeling like I’m old when I’m only 52! Thank you everyone for sharing your experiences! It has helped me in dealing with this illness!

  • Sarah Mack
    5 years ago

    Yes I was diagnosed when I was 22! I have pain from my hips down and now has spread to my toes. I was also diagnosed with osteoporosis I’ve never been a pop drinking or very unhealthy eater. Makes it miserable trying to be my age and have fun when I hurt so bad. Methotrexate worked for a few months but now pains back so time for some new meds. I fear it’s going to be a long process but hope for finding something that will finally work.

  • Mariah Z. Leach moderator
    6 years ago

    Hi Melissa – Thank you so much for taking the time to share your story. I personally think one of the more frustrating aspects of having RA is how long it can take to find a treatment that works. It can be a long and frustrating process, but I can tell you from personal experience that if you are able to find a treatment that works it can make a major difference in your quality of life, so hang in there! I’m so glad that you have found our community! Please hang in there and remember that we are here to support you!

  • Melissa author
    5 years ago

    Mariah, so true!!! I never liked to complain but sometimes you just have to say how you feel and be heard!!

  • Mariah Z. Leach moderator
    6 years ago

    Hi Melissa – I understand what you mean. When people ask me how I am feeling I know they want to hear that I am feeling better, so it is hard to say when I am not. You are not a hypochondriac if you have been diagnosed with RA. RA is a very real, serious, systemic autoimmune disease. And I think it is important to remember that talking about how you feel is not necessarily the same thing as complaining about it. It is important to talk about it so we can let out our frustration and find some support. Hang in there!

  • Melissa author
    6 years ago

    Thanks Mariah, nice to hear some feedback. It is often easy to feel down and like no one really understands. I feel like i sound like a hypochondriac as I describe new or existing pains…I never ever complained about much but the occasional sinus infection.

  • Melissa author
    6 years ago

    Hey new RA friends, sounds like we all have our stories!!! Shari, I hope your pain lessons and they can find a new plan for you throughout the test. Teresa, I hope you have good results in your blood work. I have not had a appointment yet where the doc actually explains the numbers yet. Maybe they are waiting to know i am doing better first. Orencia and plaquenil seem to be helping more than anything. I hope to stay away from the pneumonia this year. Teresa, I have had a horrible headache/ neck ache the last few days… I wondered if that is common with RA? Thanks, Nice to compare notes with others because with NON RA people…it just sound like mis understood complaining! Let me hear from ya all again, I am still learning about this stuff so I love to read…Take care!

  • Cynthia Smith
    6 years ago

    I am so grateful for this forum and the opportunity it gives us to share our experiences, thoughts and feelings. I was diagnosed with RA in my mid forties but had symptoms starting in my early 40’s. I have just turned 60. What happened initially is that I had begun experiencing intense hand pain and swelling that made using my hands very difficult. I had never experienced anything like it. Eventually the pain and swelling decreased and almost went away. I thought it was very odd and caused me some concern, but it did improve and I went along my merry way. I was very puzzled by it though. Looking back I think I was in denial. There was a part of me that recognized on some level that this wasn’t normal and worried me. Then a few weeks after that incident I experienced another episode of acute pain in my joints that I knew was serious, and could not be ignored. It was Christmas Eve and I was up very late wrapping presents. I was standing at the kitchen counter wrapping away and my knees,feet and legs began to ache and stiffen. So much so that after the course of 2-3 hours I could no longer stand. I didn’t know what was happening and it frightened me. One minute I was ok and in a couple of hours I could barely get around. I sat through Christmas Day while my husband took care of our two young boys. The day after Christmas, I went to my family physician who ran some tests and referred me to a rheumatologist. I was diagnosed with RA. Since those many years ago I’ve been on many RA drugs. I had a severe, life threatening reaction to having taken Enbrel and then Remicaide, 6 years ago. My cardiologist took me off of it and said I can never take that drug again after it caused me to develop severe, conjestive heart failure. I was faced with the possibility of a heart transplant had I not responded as well as I did to the treatment prescribed by my cardiologist. After serious treatment, my heart function returned to normal thank God. This is a rare but possible adverse reaction to that class of drug. It is such a rare occurance that my physician felt the potential benefits outweighed the risk when he placed me on it. In my case that didn’t hold true. After that devastating experience, I went back to just taking Prednisone, Methotrexate and Folic Acid because I trusted these drugs from past experience and was afraid to try any drugs that could harm my heart again. After a couple of years I was having so many problems with my RA that I agreed to go on a newer drug called Orencia which is not the same class of drug as Enbrel, Humera or Remicaide. My physician assured me there was no risk of heart failure with Orencia and indeed after 2 1/2 years my heart function is still normal and my RA symptoms have improved. I currently take Methotrexate 8 tabs weekly, Folic Acid 1mg daily, Orencia subqtaneously 1x week and Prednisone 5mg daily. My quality of life has improved some since starting the Orencia and I am very grateful for that. I’m now on disability as I could no longer work due to my RA. I was sad to reach that point in my disease that I had to give up my career, but am trying to be grateful of all the positive things in my life and enjoy my early retirement when I can. I really do have a lot to be grateful for and I want to enjoy life as much as I can. I try not to let my disease control my life and I know there is hope for the future.

  • Teresa
    6 years ago

    I don’t have pneumonia at this time, but get it bad every year. Right now I am experiencing a lot of neck and shoulder pain, pain in my right arm and elbow. Tomorrow I go for blood work…can’t wait to see what my levels are and maybe get some answers and new medications!

  • Shari Jaster
    6 years ago

    I feel your pain. I am currently on Cimzia, which is all that is left to me. I have used every infusion, injection, oral drug out there. My pain eases then comes back with a vengeance. It never completely goes away. I have Cortisone injections in my shoulders to stop the pain in my elbows, forearms, etc. I take Prednisone when the pain is really intense. My skin is super-sensitive to touch, especially from my clothing and bedding. I cannot hold my arms up for longer than a couple seconds. I have nodules in my lungs and in my pancreas. I am super susceptible to infections, and the last lung infection I had lasted from May 4th through much of August this year. I also have painful and severe Osteoarthritis. The list goes on and on. I watch what I eat, I’m at a good weight, I rest and do exercise, but this disease is relentless. I’m 64 now and was first thought to have some form of arthritis when I was 16 years old. I’ve had a ton of surgeries dating back to 1965 all related to some form of infection destroying my organs. I’m currently in a study and hope it will shed light on this disease.

  • Roni Pidcock
    6 years ago

    Hi Melissa. Wow, I did not have pneumonia, but I had the oddest rash that no one, even still can figure out.Of course, when I read your story, I had to look up Lichen Planus. That is it, that is what I had. It started on my hands, then my arms. I had some spots on my legs and ankles and one big patch on the inside of my left foot, right near the heel. That one has never gone away completely and itches off and on. There is just one on my left ankle that is still raised and never goes away. It doesn’t bother me, but it is there. The ones on my hands seem to come back when I have a flare. They don’t itch, they actually make my hands sensitive to heat and they sting. The few I had on my legs left marks, but not too bad, thankfully I did not have many of them. My Dr’s thought maybe it was vasculitis.

    I thought I had tennis elbow in 2009,got the braces and never thought of it again. Just wore them and dealt with it. Then in June 2013, I started with the rash and by early July the elbow pain, this time it was disabling. It went all the way up to my shoulders, both sides.I went to the Dr, they gave me steroids. Made it go away completely. 7 days later, it came back full force. The pain attacked my whole body from neck to feet. I could not even get out of bed. It has affected all joints, but mainly my right wrist, left knee and ankle and hips.I am on Plaquenil and have Prednisone for back up in case I have a flare up. I cannot take the Mobic they gave me, it made me swell up. I actually take Turmeric for inflammation, it seems to help tremendously.

  • Melissa author
    6 years ago

    Hi Roni, wow, I wasn’t sure anyone actually read some of this stuff but me!I feel like any down time I spend it searching for information on R.A.. I think there is such a need to see what other R.A. people experience. So often those who don’t have it, really don’t get it! Love that prednisone for”tough” days!!I have been taking 10-15 mg per day for a few days now while new med takes over. Isn’t it amazing how terrible things can hurt and then it lessens a bit…and you wait to see whats next! I love to hear others stories. How do you feel now? I am still learning …do you ever feel “pain free” as the dr told me was her goal? I just wonder if that really happens. Keep in touch, Melissa

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