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Consuming the Mind
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sabrinaplourde posted:
It seems unlike most people here that are posting found out they had it in a different way than I did. I had no idea that people my age (50) didn't feel the same way I did. For some reason I had it set in my mind that when you get close to 50 you're suppose to ache like hell in the mornings and getting up after sitting too long. My knees ached, on the side of my big toe, hips, neck, feet, thumb and all my fingers and hands if I did something too much. I was "50" for crying out loud. Wasn't this normal??
No, it's not normal but it took me getting really sick. They thought I had Valley Fever and one test confirmed it. Since it was confirmed, they did an additional test as well as a huge about of test. Only two test came back positive. One, my Rheumatoid Factor came in at 106 and my calcium serum at 10.9.
My doctor came in and the first thing he asked me was how I felt in the mornings when I woke up. I told him, "heck, I'm 50, I ache like hell, I can barely walked down the stairs". He then informed me I have RA and referred me to a specialist at UCLA.
I just yesterday it was confirmed I have RA. My RA Factor was 106, the Antinuclear was Positive and Cyclic Citrulline Ab LgG >16.
The only thing I know by these numbers and my Dr. sending me an email saying it's positive is, I have RA. But, what else does it mean? This is where I'd like to know more. I've tried to find answers on the internet but only found that it's determined by age and the numbers. Not knowing makes it worse. I'd like to know if my body has a good chance of going into remission or is it going to get worse in the next 5 yrs?? Even if things aren't good or they're great, it's good to know. My mind is consumed by all this, I just want to relax and take it one day at a time but...doing it to the best to what my body needs. My next appt with my RA Dr. isn't until June 17. That's a long time to wait. Anyone want to comment?? I'd sure appreciate it. Feeling alone and a little frustrated.
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phylra responded:
Sabrinaplourde, Please don't let this (RA) consume you. I understand completely how you thought the symptoms were just normal for your age. I am 55 yrs old & was diagnosed about 3yrs ago, but had all the symptoms for few yrs before that. Finally read something on WebMD that made me go to see my GP. Anyway - now that you know what's wrong you can take action. Today there are many options avail. to RA patients that are meant to reduce/eliminate pain & stiffness, and will slow the progression of RA. You are in control of what happens from here on. Be proactive and do what's best for YOU. It's imperative that you find a Rheumatologist that you can talk to, that offers you all the treatments avail. that are appropriate for you, & that is willing to sit & explain the things you don't understand or want to know. I do not know what all the lab results mean specifically, but I have bloodwork every 3 months & then see my Rheum. She explains the results, we talk bout what they mean to me & whether my treatment is working. I can ask as many ? as I need to, and if something comes up in between the ofc visit (every 3mo.), I can reach her by e-mail & she responds by next day. A good Rheum. will tell you bout all the treatments/meds that are avail. & suited to you. The whole idea is to slow or stop the progression of the disease & it's impact on your joints. Give yourself some time to adjust to this new challenge in your life. Then - get busy & learn what you need to know to help yourself as well as what your Doc can do. There's a ton of info & lots of support out there in various forms. An example: my insurance co. offers me free consultations w/an RN & a Therapist (by phone) if I have medical ? or if I'm struggling w/depression as a result of the impact of RA on everyday life. My Rheum. & I decided to treat w/Enbrel & the manufacturer I get it from offers many, many types of support from financial to Nursing or Pharmacist consults. Take advantage of what you find. Resolve to not let this thing pull you down. There are a lot of us here in this Community Forum & I've found very caring, very helpful answers to my requests. Take care. I believe you will be fine & actually feeling better than u have been.
 
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sabrinaplourde replied to phylra's response:
What a lovely response! Thank you! You were smart going in on your own, I just don't know how you figured it out. I kept my pain to myself, I didn't want to be looked at as a hypochondriac and I don't know anyone with this disease that might make me think about myself and what I'm feeling. Yesterday I had a complete eye exam and my eyes are healthy enough to start on the meds, placquenil. I'm sure once they kick in I'll feel better. I worry a little about my stomach, it's so darn sensitive to medicines, Rrrr! Generally I'm a positive person but, I must say, this caught me off guard and has gotten to me a bit. My insurance is changing July 1, I won't be able to see my Dr at UCLA after that, I will have Kaiser Ins., I've been told they have a good RA DR there, keeping my fingers crossed. I hope they have some kind of support group as well. If Kaiser doesn't work, I can change back in a year. It's just extremely expensive, a $40 co pay and 20% of the bill doesn't seem like much but when you're seeing so many different Dr's and all the test, it starts to get very costly. I don't know how anyone can keep up on their health with all the cost. I'm sure in time I will learn what's available for me in regards to support and finances. Your response was awesome, exactly what I was hoping for! I feel like I'm in my own little world dumping on people I don't even know. So glad you're here! Thank you! Sabrina
 
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gingerjennifer3 replied to sabrinaplourde's response:
Thank u for ur conversation.. It was just what I needed to read this morning... Just wrote a reply.. It was deleted before I sent it:( I'll try again. I'm about to turn 58 and too thought some of the aches and pains are normal for my age. I was diagnosed April 21st after about 15 months of pain, frozen shoulders and some flare ups, and lots of blood tests. Put on methotrexate along with the prednisone I was taking... not fond of taking the meds... But not fond of the pain etc. either... Had a bad flare up with my rt knee, may 18, 3 days after my twin grand babies were born.. My rheumy didn't think it was from the RA Then was diagnosed with mono June 13??????? I thought that was for the younger generation!!!!! Low grade fever and more fatigue...!!! I live for today!!! One day at a time. I have to tell myself every morning:) Everyday I open my eyes, is a good day I have the need for knowledge!!!!! All and whatever I can get.... I go back to my rheumy on tues... I want to have the courage to ask him to talk while I'm there... Just so much to take in and I wish the visits were a little longer... Will try to find support groups, it would b nice talk to people I can relate with, not that I would wish this on anyone, and c if there office offer RA classes. Feel like I'm rambling.. Thanks for ur conversation!!! Good luck to all -83D-E0E


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