Newly Diagnosed? READ HERE.

This disease is no joke.  I want you to understand that I don’t want to scare you, but you deserve the truth, without the pink frosted sugar coating.  A lot of what I’m about to tell you wasn’t told to me, I found out about it on my own.  But first, we’ll start with the basics.  I want to make sure I get every detail correct, so I’m writing this while fact checking at WebMD.

Rheumatoid Arthritis affects approx. 1% of the country.  It is a genetic disease, meaning that the genes were passed down to you from your parents.  It is most common in females in their thirties, but it can be triggered at any age.  Males who develop the disease usually have a harder time with it, but that is just a statistic.  Proper care of your body could greatly change your chances.

If you are diagnosed with RA before you are 18, it is referred to as Juvenile Rheumatoid Arthritis.  Again, you can get it at any age, even as a toddler.  I believe I had symptoms of RA around 8 years old, but it never fully developed until I was 15.  The good thing about contracting the disease so early is that you are more likely to grow out of it.  This I didn’t know.  However, I don’t want to get anyone’s hopes up.  I developed the disease at 15, and am now almost 20, and I still have it.  Just know that I could happen.

If you were diagnosed later in life, there is a 5% chance that you will go into a remission and not have to take any medications.  Again, this is not what I was told, and I only found out about this a couple months ago.  I thought there was a much greater chance of remission, and I was crushed when I found out.  But even though you mostly like won’t go into remission, if you take care of yourself and take your medications properly, you just might fall into that 5%.  And even if you don’t, you can greatly reduce the amount of pain you have.  Just because you are diagnosed with severe RA doesn’t mean it won’t eventually become moderate or mild.  There is always hope.

According to WebMD, it is very common in RA for the joints affected on one side of the body to also be affected on the other side.  While I do remember this occurring once in a while, it usually doesn’t last unless you are in the middle of a bad flare (a “flare” is an amount of time in which your RA symptoms are typically much worse than usual).  RA can also affect your skin, eyes, lungs, heart, blood, or nerves, but only in rare instances.  Your rheumatologist will, however, want you to see your eye doctor every year to make sure you aren’t experiencing any problems.

The regular symptoms of RA include stiffness (especially in the morning),  joint pain and swelling, and fatigue.

I classify joint pain as follows: level one – stiffness.  I include stiffness because not being able to move your joints makes them tender.  It is a dull-er pain than the other levels, but it still isn’t fun.  Level two – regular pain.  Sometimes your joints just ache.  It could be because you just got through writing an essay by hand, or because it’s raining outside.  Level three – throbbing.  This means you’re probably having some swelling.  Throbbing pain is not fun and can be very annoying.  When your joints are throbbing you need to minimize use of those joints as much  as possible.  Level four – burning.  This can be a dull burn or a explosion of fire.  If it continues for long amounts of time or turns into that “explosion” of fire, I suggest contacting your rheumatologist about whether you can take an extra painkiller or not (ALWAYS ALWAYS ALWAYS ASK FIRST!).

Instead of trying to explain what RA does to your joints exactly and risk missing a few details, I’m just going to steal it from WebMD:

“Once the immune system is triggered, immune cells migrate from the blood into the joints and joint-lining tissue, called synovium. There the immune cells produce inflammatory substances. The increased number of cells and inflammatory substances within the joint cause irritation, wearing down of cartilage (cushioning material at the end of bones), and swelling and inflammation of the joint lining. Inflammation of the joint lining stimulates it to produce excessive joint fluid within the joint.  As the cartilage wears down, the space between the bones narrows. If the condition worsens, the bones could rub against each other.  As the joint lining expands, it may invade into, or erode, the adjacent bone, resulting in bone damage that is referred to as erosions. All of these factors cause the joint to become very painful, swollen, and warm to the touch.”

Erosion of the joints is exactly what your rheumatologist will want to prevent, and thankfully, we have to medication to do it.  This is the great thing about being diagnosed with RA at this day and age. If you lived fifty years ago and contracted the disease, not much could be done for you.  My grandmother had to have gold shots.  Yes, real shots of gold.  And they weren’t that effective, either.  Today, there is much more hope for us.

Nine times out of ten your rheumatologist will put you on a TNF blocker and Methotrexate as soon as possible.  If your RA is not that severe, they might only put you on the TNF blocker.  There is a ton of information on TNF blockers, so get your knowledge on here. Methotrexate is a chemotherapy drug.  Now doesn’t that sound scary!  Don’t worry, you will be taking it in small doses.  Some people are nauseous after taking the drug, but you eventually get used to it.  Your rheumatologist will ease you into it, too.  For more info on methotrexate, click here.

When you’re done with that site, I also want you to click here. It’s important info about Methotrexate that I will discuss in my blog, but you need to know it asap.

Helping your loved ones understand what you are going through is key, so I strongly encourage you to take a look at the Don’t have RA?  READ HERE. page.  It is a letter I created for the non-arthritis community.  After you’ve read it, write your own letter, and give it to your family, your friends, your boyfriend/girlfriend.

Rheumatoid Arthritis is serious business.  It cannot be cured, but following your doctor’s instructions and implementing the  few tips I have up my sleeves for you will greatly increase your chances of living a healthy, active life.  So don’t be scared, always stay positive, and look to God in hard times.  You will make it through this, and I will help you.  🙂

20 Comments (+add yours?)

  1. Jennifer
    Feb 06, 2010 @ 14:54:04

    Hi…thank you for writing your blogs…I enjoyed reading them and it feels good to know that I’m not alone. I have just been diagnosed with RA and am petrified. I’m going to turn 30 this month and have a 13 month old daughter. I am trying to be strong and fight this. I am looking foward to reading more of your blogs. thanks again

    Reply

    • Cari Elliott
      Feb 07, 2010 @ 23:19:07

      Having someone else to talk to with RA can help tremendously, especially when first diagnosed. Let me know if you have any questions or concerns. I’m hoping to start a facebook fan page very soon so that we all will be able to contact each other much easier. Thanks for reading!

      Reply

  2. Krissy Fossing
    Feb 22, 2010 @ 14:24:22

    Thank you for your blog. It’s been helpful for me to understand & come to terms with this disease. I was diagnosed a week ago. It’s pretty scary. I am 30 & have a 21 month old. Some days I need help changing his diapers & can’t even pick him up. MN winters don’t seem to be so nice on my joints!
    Thanks again…you help lift my spirits!

    Reply

    • Cari Elliott
      Feb 22, 2010 @ 16:31:08

      I’m very glad my blog helped, Krissy. I can’t imagine having to deal with worse winter weather, however spring should be just around the corner. My mom pointed out to me a few days ago that the finches are starting to turn yellow again, a very good sign that warm temps are near! I’m so ready for nice weather. 🙂

      Reply

  3. Emma-Jane Holden
    Mar 13, 2010 @ 16:15:12

    Hi Cari, what a great little blog you have. I have RA, I’m only 38, and nearly fell over backwards when I discovered the reason why I couldn’t move my finger in the morning. RA. Most days are better than others, but this morning, wow, pretty painful.
    I’m about to start taking medication for it. And I can’t wait for the pain to stop.
    Your website is lovely, and it’s great to see you become so active in RA issues.
    I’ll keep checking your blog out, it’s brilliant, keep up the good work.
    Emma-Jane, Melbourne, Australia.

    Reply

    • Cari Elliott
      Mar 14, 2010 @ 16:24:35

      Hi Emma-Jane (I think it’s so awesome that you’re from Australia!). I hate that you’re still in so much pain, I’ll be praying that the medications help you. Thank you for your kind words, you’re very sweet. ^_^ Feel better soon!

      Reply

  4. Carmen
    Jun 21, 2010 @ 20:27:26

    Hi Cari….

    Thanks a ton for the information….just got diagnosed… at first it was really scary….Now I am more positive…and just want to take things one step at a time….It helps to know that I am not alone…

    Thanks Again,

    Carmen

    Reply

  5. Stacey
    Jul 03, 2010 @ 08:54:52

    I plan on getting one of the wax kits before winter sets back in. My grandma used to go into the hospital to have this done when she was diagnosed over 40 yrs ago. I think she will yell at me if I dont. Any other suggestions anyone has would be greatly appreciated. The only other person I know who has this is my grandma and she is from the grin and bear it generation.

    Reply

  6. pat
    Jun 17, 2012 @ 18:54:14

    Hello, My healthy 26 year old daughter was diagnosed a few weeks ago with RA. She was into many kinds of sports. she is really depressed and is so confussed about treatment. She is scared about the side effects of methotroxiate and hair falling out. She is thinking of acupuncture, anything to avoid drugs. she has never been marreid and has no children but would like to have children one day and still would like to live a active life. She is in much pain now but Dr will not start her on med untill her appt June 28th, so wend she is appt for accupuncture. my heart is breaking for her. Do you still work full time and lead a active life?

    Reply

    • Cari Elliott
      Jun 17, 2012 @ 19:54:33

      Hi patdar1965;

      I’m not on my blog much anymore, but I try hard to still respond to comments. I understand your daughter’s sadness as I had to give up many beloved hobbies as well. She will probably be sad for some time. I think it’s important to get those feelings out so that way you can let go and accept your life with RA. Losing those hobbies is hard, yes – but it also opens the door to many new hobbies. I think back at playing the drums, for example, and still miss it, but I’m able to let it go. Having RA will in no way ruin your life. In fact, I think having RA has helped me to become a more caring and compassionate person, and I’m much less quick to judge others in a rough latch in their lives. It is an adjustment, but your daughter will definitely be okay. 🙂 As for the medicine, I’m not a doctor so I can’t confidently advise your daughter. I have not tried acupuncture but if you both feel this is a good option then I would explore it. Methotrexate can be a harsh drug that can cause side effects, but most individuals do not experience much more than nausea. Hair loss is rare and, if I remember correctly, is only very minor when it does occur. This is important to keep in mind. And if she tries Methotrexate, tell her to talk with her doctor about eventually stopping it if she sees no improvement or if she wants to see how she does without it. You both should remember that just because your doctor wants you to try one method it doesn’t mean it is the right method for you. She should have the ultimate say in her treatment. Tell her to always remember that. And to remember that it is important to stay positive. That won’t happen right away, of course, but the right frame of mind will greatly impact your health. Tell her to stay as active as possible and to take care of herself, and she will be just fine. 🙂

      I am currently working full time at a local newspaper as a reporter/editor. I stay as active as possible by doing yoga, light Pilates, and I love playing different Kinect games for Xbox. Just last year I traveled to China, and this past March to New York City. Both trips required lots and lots of movement and the RA was completely manageable. I have had RA for 5.5 years. 🙂

      Always remember that there is hope. I will be praying for you and your daughter.

      Cari

      Sent from my iPhone

      Reply

  7. pat
    Jun 17, 2012 @ 18:56:18

    Her feet hurt and her hands and finger tips and thumb is bend a little.. Only tkaing aspirin and fish oil..

    Reply

  8. Nancy
    Sep 27, 2012 @ 01:19:32

    Diagnosed about two months ago. My grandmother had severe RA, diagnosed in her 20s, I only remember her always being in a wheelchair. My mother is now in her 80s and was diagnosed in her early 50s, she is doing well but severe joint deformity. And now me. It has always been something I have feared and now it has happened. I have been to physio, OT, started on 2 meds and then had a third, methotrexate injection 1x per week added three weeks ago. I work full time but have had days over the last two months when I had so little sleep due to throbbing pain at night and was so stiff and sore int the morning I didn’t want to get up but pushed myself to limp through the day. A few times I sat on the floor to pet my dog, difficult to get down but then took me about 10 minutes to get up, had to crawl on my sore knees to get to a chair to slowly try to pull myself up. All this in two months! Had a crying jag at the physio one day as I had just done a few days of normal cleaning to get ready for family visitors and I was so sore and stiff, I had “over done it” by doing something totally normal and I just couldn’t wrap my head around how I was going to function. And then a few weeks ago I started to feel a change, less stiffness, sore but not as sore, less throbbing, able to get up from a chair without wincing, more mobility, better sleep. Not perfect, but better. I give myself my 4th shot of methotrexate in a couple of days. I think the meds are starting to work. I am hoping for remission or something close to it. My mother did better with RA than my grandmother, and with new meds and treatment I will do even better. Wish I didn’t have it, but I can’t change that, I want to learn to live well with it. To Pat with the young daughter, she is so young I am so sorry she has to go through this but she can learn to live well, the meds will be important. I am in my early 50s and I am finding it so hard so I can only imagine for her, but treatment is so much better now!

    Reply

  9. Daisy
    Nov 21, 2012 @ 22:45:19

    I was diagnoised two years ago..i went to Puerto Rico for the summer and came back feeling fantastic..I insisted to my doctor that I was cured..7 months later..the stiffness started..September of this year I went back to the doctor..it is getting more difficult..sometimes i can not even walk..lift my arms..hold a toothbrush..he put me on Prednisone..Folic acid and the methotrexate..i took them for 1 week.I stopped..I am in denial..i cannot accept it..i am scared..i am depressed..i cry constantly..i am scared of the side affects of the medication…to top it off ..i have suffered from an eating disorder for over 40 years..although i would consider it to be under control..the thought of putting on weight with the prednisone is more than my mind can tolerate….i admire you ..i admire your approach…your accepting of your RA..i suffer quitely..alone…to think how crippling the RA can be,,just makes me ask God to call me…

    Reply

    • Donna Corvino
      Mar 27, 2013 @ 20:49:50

      Daisy, I just found this website and am wondering how you are doing? I am 51 and was diagnosed with RA a year ago. I am currently on prednisone and humera. My knee mostly remains twice its size and now my other knee is starting. My foot and right hand is mild. I am a dentist who cannot do half of what I used to and have to depend on associates to keep my practice going. I have 2 busy teenage daughters, the oldest who will be starting college in the fall. Their father does not pay support and has already said he will not pay a penny toward their college. It is more than stressful worrying about the money, especially on the days I can barely get ready for work, sometimes unable to get socks on and in tears driving there in pain. I am exhausted by 2 p.m. And still have to force myself to make dinner and attend their activities. I very occasionally get a good day…which if I can walk down steps like an adult instead of a toddler I am thrilled. I am sick of being on the prednisone…over 200 lbs now and feel like crap! I am generally an up person but find depressed days overriding happy days. I am sure the stress is not helping. I am fighting adding methyltrexate…the only hobby I have is home brewing (with help) and studied very hard to get my judging certification. I recently started a water exercise class but was too sore to even attempt this week. I am not sure where my future is headed but I know I have a huge bucket list and will be very upset if RA keeps me from achieving it! Right now, I will be happy just to get some projects done in my home which just keep piling up because I cannot do any of it. I hope you are doing better. Any advice that may have helped you?

      Reply

  10. Nancy
    Nov 22, 2012 @ 00:41:45

    Daisy, I’m sorry you are going through such a difficult time. I know it is hard and it is scary to have your body in pain and not know what the future holds. I just want to say don’t give up on the meds. It takes a few months for the methotrexate to fully kick in. I am on three other drugs in combo with the methotrexate. Four months ago I didn’t take anything more than a vitamin here and there, now I take a handful of pills twice a day and a weekly injection. I don’t like taking the meds but they are helping, even though it’s not perfect. I have seen my mother and grandmother go through RA when the drugs were not so good and they had a lot of joint damage. Now we can stop or slow down the damage with meds. Please don’t give up, give the meds a try for longer. If you don’t want the prednisone because of your eating issues, talk to your doc about getting something else. Maybe also try gentle massage to help you feel better as well, it helps on an emotional level as well as physical. Hold on to life, it’s worth it even with a condition like RA!

    Reply

  11. elizabeth conant
    Aug 21, 2013 @ 08:26:33

    Hi Cari – haven’t seen any posts in a while… still there? Hope to hear you haven’t given up the blog… til then will be reading back posts… Elizabeth Conant

    Reply

  12. Dawn Hammond
    Jan 19, 2014 @ 18:52:18

    Hi! I’m a 39 year old women, whom was just diagnosed with RA. Tonight I just took my first dose of MTX. I feel a little nausea, but I have a little anxiety about taking this medicine because of some of the blogs and sever side effects that I’ve read thus far. I’ve never really been sick so I’m in New territory. I had some inflammation and a little pain in my hands, but nothing real major just a tad bit uncomfortable. .. my RA factor test was high not off the chart though. ..but my rheumatologist felt as though we should deal with this aggressively early. I’m on taking 2.5 as of now and I’m feeling a little sick…. I don’t want to take this… it’s really scary…wondering if I did the right thing in taking it!!!

    Reply

  13. Mariliz
    Jan 09, 2017 @ 18:37:36

    Hi thabk you for sharing I have always wanted to share my story as well but always to shy too. I was diagnosed At my 30th birthday check up yes what great news not !!!!! I have all right along with Sjogren’s disease not the best of both worlds I guess so far I’m doing great under my doctors care but I read your story and remind me of my life thank you again for sharing .

    Reply

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