anyone here with Rhematoid or oseto arthritis?

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13

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  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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    HLA-B27 was the test done on me in 1976 that ruled in my AS diagnosed. Both kids tested positive for HLA-B27 in our family.
  • Angiefit4life
    Angiefit4life Posts: 210 Member
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    @CarvedTones you’re correct! I’m also positive for the gene.
  • doceo
    doceo Posts: 46 Member
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    Hi all. I finally got the results from the blood work I pushed my pcp to do. Can anyone give me info on these? I see the rheumatolgist Dec 17
    My CCP was >250
    rheumatoid factor 11
    SED rate 17
    ANA 1.30
    ANA titer was negative
  • cyndit1
    cyndit1 Posts: 170 Member
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    Angiefit4life wrote: »
    singingflutelady wrote: »
    Lots of Humira folks! I don't have arthritis but I take it for Crohn's. I find it painful and I also get an injection site reaction so itchy!


    Always ask your dr but I was advised to let it sit on the counter for about 15 mins before. And stomach injections hurt way less than thigh. Sounds weird but I promise. And the itchy site reaction does stop. I’m assuming you haven’t been on it long.

    I inject Cimzia and Mtx for RA and stomach hurts WAY less than thigh.
  • Angiefit4life
    Angiefit4life Posts: 210 Member
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    doceo wrote: »
    Hi all. I finally got the results from the blood work I pushed my pcp to do. Can anyone give me info on these? I see the rheumatolgist Dec 17
    My CCP was >250
    rheumatoid factor 11
    SED rate 17
    ANA 1.30
    ANA titer was negative


    I’m not knowledgeable enough so all I would add is ask to be put on the waiting list if they have any cancellations. Feel better soon.
  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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    doceo wrote: »
    Hi all. I finally got the results from the blood work I pushed my pcp to do. Can anyone give me info on these? I see the rheumatolgist Dec 17
    My CCP was >250
    rheumatoid factor 11
    SED rate 17
    ANA 1.30
    ANA titer was negative

    @doceo just go to your post and highlight one of your 5 results line at time and right click and do a Google search to get some answers for starters. That is assuming you use Google. You may read how our results can vary greatly so comparing numbers with another's lab work can be meaningless. Keep in mind healthcare providers do not have ready made solutions as a general rule and often fail to nail our issues with only one name. At the age of 67 I have been told many names for my arthritis so do not concern myself with a name any longer and just focus on the things that I eat and drink and how they make me feel the next day, week, etc.

    On a hunch with health failing fast in Oct 2014 I cut out all energy sources containing added sugar and or any form of any grain as a last ditch effort to avoid starting Enbrel injections scheduled to start as of Nov 2014. I got lucky because in 30 days my high levels of pain of the last 30 years had started dropping like a rock and continued to do so over the next year so I have been relative pain free and RX med free for the last three years.

    Last month I was told to come back for my annual in 12 months because she saw no pending medical issues based on her physical and my detail lab workup from the week before.

    This is just my personal case having lived with arthritis for the past 50 years. For some reason high carb Way Of Eating was causing my inflammation levels to go high but I am OK on my current WOE of keeping my total daily carbs down to about 50 grams.

    Again we are all different and have to find over time what may or may not help us diet wise.

    Best of success in learning your way forward. You already know you have to push for the info you want. Find your cause for the inflammation in YOUR body and drill down on the details from that point. After I found out I had a form of arthritis I went to college and earned my OD degree from SCO Memphis in 1986. The healthcare professions just do not have fixes for us setting on a shelf. Some that I was given turned out to be worse than the arthritis itself.

    Since Oct 2014 my health continues to improve and now wish I had changed my Way Of Eating 40 years ago instead of 4 years ago. My arthritis I think as caused my wife and kids that turn 21 next week more pain than it as me. They are happy to see me regaining my health and not being so dependent on them.
  • CarvedTones
    CarvedTones Posts: 2,340 Member
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    The way my diet has helped me the most was by maintaining a deficit for a long while and losing 68 pounds. With my BMI under 25 I have not had a major flare and I eat plenty of grain, refined sugar and pretty much whatever I want as long as I stay under calories burned. But a flare could sideline me tomorrow and make me eat those words; you never know. And I chose the term "major flare" because I do still have some minor osteo pain in various joints and the bulging discs, degeneration and spinal stenosis cause some manageable (heat and NSAIDs; no pain killers) pain. But the pain is not as intense or frequent as it was when I was overweight/obese.
  • MHarper522
    MHarper522 Posts: 108 Member
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    Yes :( just officially diagnosed at 33, but in pain for years. Used to be a skater and genetics from my dad problaby made it spring up faster than it would have.

  • doceo
    doceo Posts: 46 Member
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    MHarper522 wrote: »
    Yes :( just officially diagnosed at 33, but in pain for years. Used to be a skater and genetics from my dad problaby made it spring up faster than it would have.
    :'(
  • ruqayyahsmum
    ruqayyahsmum Posts: 1,514 Member
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    MHarper522 wrote: »
    Yes :( just officially diagnosed at 33, but in pain for years. Used to be a skater and genetics from my dad problaby made it spring up faster than it would have.

    I'm an ex dancer and my dad has arthritis and AS

    I'm 36 now and people still keep telling me I'm too young for it to be that including my physio before he read my file
  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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    @ruqayyahsmum AS runs in my past and current family based on being HLB-27 positive. I was 26 before I found a doctor that pinned it down to AS. I remember getting in trouble limping due to my left knee when I got off the school bus in the fourth grade and it just got worse year my year but it was about 28 when the fusing started limiting my range of motion. At age 40 I had both hips replaced the same day.

    Fast forward to Oct 2014 at the age of 63 when my mobility seriously limited my life and the pain was over the top all time on a hunch I cut out all foods containing added sugar and or any form of any grain. Within 30 days with no Rx Meds my pain level of 40 years was dropping like a rock and still is very low as of Nov 2018. Some of my spine upper body joints are starting to unfuse giving me some new range of motion and taking some of the hunch out of my back as I now stand more upright. All health markers are now normal with no Rx Meds for anything at the age of 67.

    Not sure if this would be helpful to anyone else or not but I think if I had changed my way of eating at the age of 23 that my physical deformations would not have happened.

    By the way my daughter started dancing around 4 years old and had to stop at age 16 due to joint inflammation.

    Best of success at finding a Way Of Eat that helps manage your AS.
  • CarvedTones
    CarvedTones Posts: 2,340 Member
    edited October 2018
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    @GaleHawkins Have you looked at The London AS Diet on KickAS.org? It does seem to have some science behind it. Your cutting out grain tracks with what is suggested there. The science behind it is specific to the HLA B27 blood antigen.
  • ruqayyahsmum
    ruqayyahsmum Posts: 1,514 Member
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    @GaleHawkins
    It was suggested by arthritis research org that I adopt a vegetarian diet so I've cut out all meat and fish

    I've cut back on sugar but it's a difficult one as I have hypoglycemia which I've tried to rectify with cheese, plain yogurt and fruit but often have to resort to toast and jam to get my numbers up. Pure sugar doesn't work for me, sets off dumping syndrome.
    I'll have a look at the resource the other poster has mentioned, I already have 3 curves in my spine including a lovely hunch at shoulder level that's been there since about age 10, my dance teacher was forever telling me to stand properly
  • GaleHawkins
    GaleHawkins Posts: 8,160 Member
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    @CarvedTones I have seen the KickAS.org site but I will review it again. Now that I have been reading about AS for years info clicks better now. :)

    @ruqayyahsmum I think the main thing is just start at any point and do more of what works for one and less of what does not work for one.

    I woke up one morning back in the fall of 2014 with a clear understanding that if I wanted to avoid starting Enbrel injections in 30 days as per my MD's advice I had to cut out all foods containing sugar and or any form of any grain.. My brain and wife were saying NO.

    Since I had already burned through 60 days of the 90 days when I was scheduled to start the injections I knew I had to leave carbs cold turkey. While the first two weeks were hellish for me it worked quickly and four years later is working even better.

    While over many years I have come to learn the answers that come overnight for a given crisis can be trusted so I acted.

    Worse than my failing health were our then 16 year old twins having to help me get dressed, in and out of cars, etc wondering if this was what their future was going to be like. They are not keto but at least they have watched my health recover and knows how well and simple it is to do. Both have become more mindful eaters however.
  • lesockie
    lesockie Posts: 80 Member
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    Did any of you experience tendonitis before being diagnosed with RA?
  • Marbles93
    Marbles93 Posts: 11 Member
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    lesockie wrote: »
    Did any of you experience tendonitis before being diagnosed with RA?

    Inflammation in the tendons is common with inflammatory arthritis. My daughter and I have Juvenile Idiopathic Arthritis and both get tenosynovitis.
  • sivyaleah
    sivyaleah Posts: 51 Member
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    OA, both knees due to meniscus removals. Right knee much worse. Some minor issues in my neck due to aging. I've been told I have arthritis in my big toe but so far so good, no problems that I've noticed. I have good range of motion, it's just this deep seated pain which is the problem because of bone on bone contact.

    Hot humid weather kills me as does cold damp weather. I tend to do fairly ok if the humidity is low regardless of temperature.

    I'm currently about 17 pounds off my high weight and it's made moving easier. I hope as time goes by and more is taken off it will impact my pain levels. I'm currently eating a healthy diet - nothing weird or faddish, just normal eating - limiting calories and being more mindful of what I eat. Overall feeling better but that's more due to losing the pounds and taking the pressure off of my knees.

    I try not to take anything for the pain unless I really need it. I'm currently on an anti-inflammatory drug called sulindac (Clinoril) which is the only medication that has brought me relief for the knee pain in all the years I've had this problem. Not one over the counter drug helped. Seeing a rheumatologist, who took my pain seriously, was a huge step forward for me. Unfortunately doesn't help my neck pain but that is less concerning as it isn't constant - more of a fleeting, momentary thing a few times a day.

  • CarvedTones
    CarvedTones Posts: 2,340 Member
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    Weather is weird in how it affects us differently. Most of my worst flares happened when it was cold and damp, but I have never had one when it is hot and humid. I have had them in dry cold weather and I live in the south so hot dry weather is a myth. :smiley:
  • GottaBurnEmAll
    GottaBurnEmAll Posts: 7,722 Member
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    My flares seem unconnected with the weather and just ... happen.

    I have osteo and PsA.

    I don't seem to tolerate extremes on either end of the spectrum, temperature-wise.
  • CarvedTones
    CarvedTones Posts: 2,340 Member
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    GottaBurnEmAll wrote: »
    My flares seem unconnected with the weather and just ... happen.

    I have osteo and PsA.

    I don't seem to tolerate extremes on either end of the spectrum, temperature-wise.

    It's confusing to me and docs. Flares seem consistent with osteo (weather effect and it's rarely the red puffy inflammation) except for being systemic and symmetric, which are signs of something rheumatic. Blood work is inconclusive; spikes within normal range like sed rate going from 8 to 18. But high normal is still normal. I have some full time osteo without the flares but it isn't as bad. The bursitis is bones bumping without much between them which doesn't feel great but usually doesn't get badly inflamed. The herniated discs, DDD and stenosis are painful sometimes but are not debilitating. If I can dodge the flares, everything is stuff I can deal with.

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