palindromic rheumatoid arthritis

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After about 10 years of observing my RA symptoms, my rheumatologist told me I have a fairly rare form of RA called palindromic RA. My symptoms are that the pain I experience is not necessarily symmetric (e.g. both wrists) but may occur on one side. Also, pain and swelling travels around in my body. For a month or more, it might be my right knee and not my left. Then I will have tendon inflammation in my groin for a couple of weeks. Then it might move on to my left foot. Never a dull moment trying to predict where it will be next week. Has anyone experienced this? I am currently on mtx and hydroxychloroquine. I have found that turmeric really helps and so does pineapple juice and blackcherry juice.

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  • Posted

    No never heard of that one! Mine is the boring common one. I am on those drugs too but they have not been helping of late hence been put on biologic drug. I hear tumeric is good and I have just bought a big bag of it to make some drinks with it. How do you take it? What black cherry juice? I adore cherries but haven't seen that. I guess pain is pain wherever it lays its nasty head.

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    • Posted

      I take turmeric capsules which I get in a health foods store. Drugstores carry it too. I take about 1000 mg a day depending on who makes the capsules. The cherry juice is Knudson's black cherry juice. With these I am taking one quarter of the MTX I used to take.

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    • Posted

      I don't know if you have any Wegman's grocery stores around you, but you can find it in the organic/health foods section. But Whole Foods has it and I believe most large chains have it but in the "healthy" section. I wonder if that means that the food in the rest of the store is "unhealthy:" :-}

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  • Posted

    You have it for 10 yrs? I was recently diagonised with RA. My pain is also usually not symmetric and is here and there around my body . Mostly on my right shoulder , then my right elbow, thrn my right knee , right ankle etc.. Left shoulder ... I'm also on methotrexate. How are you coping with it ?

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    • Posted

      My first few years were spent getting the MTX dose right and looking around for some more natural things I could take. Right now I take about a gram of turmeric each day in capsule form and pineapple juice and black cherry juice. They help a lot.  Also, I was using mobic for pain and inflammation which gave me microscopic blood in my urine. So I use those only if I really need to.
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    • Posted

      How do I cope.......

      First, this disease is the ONLY thing wrong with me, and I turn 70 in two weeks. 

      Second, I started to do some research which led me to taking turmeric in capsule form, krill oil, pineapple juice and black cherry juice. There is a body of research that supports these. They have helped me to reduce my MTX take from 12 tabs per week to 3 per week.

      Third, if I have a flareup (about once every 3 or 4 months) I take good care of myself to include rest, hot baths and a pain killer. These flareups last a few days to a couple of weeks and leave as quicckly as they come on.

      I am also fortunate in that my rheumatologist encourages me to call him whenever I have a problem. He makes a point to call me back that same day. How many patients can say that?

      And a sense of humor is okay, too. I was describing how I almost liked colds because my symptoms went away during the cold and the way I told my rheumatologist had him in stitches.

      Finally, I do yoga which helps center me and I feel much better after a session. 

      So many ways.....

       

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    • Posted

      That's amazing.. reducing from 12 tab to 3 tab... I'm turning 41 in two weeks ... I will try the black cherry in capsule soon... I hope it works the same for me ...I'm blessed to find this forum and able to share my experiences with all the kind people and have the same horrible disease ...

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    • Posted

      I have come across your posting for my sister....she has had RA for two years, nothing much the hospital has tried her on gives much relief....Methotrexate, affected her liver, she is now on Sulphalazine....but my question to you other than pain she suffers is....she gets extreme fatigue and dizziness....she has about 12 hours sleep (lucky her!) every night, but is still tired, is the the norm for RA?....  She has been tested for celiac, anaemia, thyroid, vit D, etc....all ok....

      ​Thank you for any suggestions!  (will tell her about your naturals that you take)

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    • Posted

      Thanks for your reply, my sister dosen`t seem to get " flare-ups" she is like it all the time, and in pain....this is what bothers me, and wonder if she has right diagnosis, or it`s side affects of Sulphalazine.....think we need to push further....thanks anyway...

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  • Posted

    I think I have the same form of RA as you. Mine is never symmetrical and travels around my body. The attacks of severe pain usually last a day or two at most. So far I have been able to maintain with hydroxychloroquine and Aleve. I worry about the long term effects of daily NSAIDS intake and wonder if it would be better for me to try the natural antiinflammatories like tumeric and pineapple. Thank you for sharing your information.
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    • Posted

      Yes my symptons also lasts for 1 to 2 days then It will go the other part of the body . I changed my diet by cutting down meat , no more coffee. It's good to try the natural remedies but I can't take the risk of stopping my medication. I haven't tried Tumeric though. But I use the lemongrass leaves to boil it with water and drink it as tea. Do tk care

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    • Posted

      I am vegetarian and rarely drink coffee but still have RA. I try to have a healthy diet but don't follow special regimes or natural remedies. I research certain things that can help like tumeric and believe there is some truth to this. But I refuse to buy supplements which make claims to cure. My meds are not working as well as I would like but I know there are drugs which will suit me and its just getting it right. Hopefully now the biological drugs.

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    • Posted

      Hi Tammy:

      I know what you mean. I would rather not have to take drugs either. And I talked to my rheumatologist about it. He told me that the disease is worse than the drugs, so it is a beneficial tradeoff. They monitor your blood so if you have any reaction to a drug they can switch you to another. So far I have not had to do that.

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    • Posted

      This is the arthritis I have too, I wondered what the heck was wrong with me I was really worried I never thought arthritis was anything like this, however I have been on methotrexate fire a few months and no problems apart from tiredness but the biggest thing is no pain
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