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 food. 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

    Hello Timothy, I wonder whether you might have a larger response if you asked to have this moved to the RA group?

    I have heard other people mention turmeric & pineapple juice, in connection to other diseases, that is very interesting.

    I don't have RA but used to take MTX.  You're also right about there never being a dull moment,  I often wonder what my body is going to dream up next! lol

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  • Posted

    Hi

    Yes mine was presenting like that, I never had pain in two places at the same time it would move from one place to another, started in right shoulder then moved to left, then went to fingers and wrists moving from one side to the other, I was wondering what the heck was going on and found it scarey as my imagination is really bad, I was eventually diagnosed with RA and was out on methotrexate just over 3 weeks ago, started on 4 for the first two weeks and then up to six, I feel sick quite a lot but deal with it, I had an injection of steroid on diagnosis day as the methotrexate takes a good 3 months to start working and have had no pain since, so hopefully this will work for me I take tumeric too and swear by it

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    • Posted

      Hi Timothy

      I did a lot of research on tumeric the main ingredient is called curcumin and you can buy it on amazon in a high strength I have been on it for two years now and who knows if it works or not I hope it does, I take a few things about 7 every morning and seem to of had no pain for some 6 weeks or so I am on methotrexate too I have just taken my 4th lot

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  • Posted

    Hi, 

    I too have been diagnosed with Pallindromic RA since Feb this year. I'm 40yrs old and have suffered for about 3 years, but last year it got so bad having about 2 flare ups a week each lasting about 3 days. Mostly it's my wrists either single or both at the same time. Fingers, hands, left knee and now my elbow has started hurting! First time I experienced it it was in both my ankles and the pain was excruciating.

    I'm on  Hydroxychloroquine and and am starting my first weekly dose of Methotrexate tomorrow! I have been reading up and not looking forward to the side effects. Does this happen every week of will they die down the longer you're on the drug? I just know I'm gonna be one of the unfortunate ones.

    I will check out turmeric and the pineapple juice.

    Thank-you

    Claire X 

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  • Posted

    Hello,

    I am 18 and have been diagnosed with palindromic arthritis for two years. I take sulfasalazine and am about to start methotrexate injections. I was wondering if the turmeric was best in the supplement capsules or just added to cooking? How regularly should it be taken?

    Thanks

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  • Posted

    Hi Timothy

    I also have Pallindromic Arthritis. My symptoms are following a random pattern and not always symmetrical. I have been ill for one yr I feel bad for you as I know how bad things get. I was off sick for 7 months but have now been forced to retire early.

    I have flare ups that last from 5 minutes to months. My main joints and legaments effected are ankles left is very bad and is vibrating which is weird .I also have ongoing issues with lower back, hips the right mainly. My right elbow like my ankle feels like the pain is deep inside the joint; excruciating.

    My shoulders and hands have been v bad, I had a shoulder cuff op which helped on the right side and my right hand was also causing pain and swollen.

    Taking steroids has helped stop burning and swelling. Since retiring I am learning how to manage. There are few things I can't do apart from heavy jobs. I keep busy and sleep or sort of zone out / meditation when things get too much . I am trying to replace tramadol with paracetamol at moment.

    It is a crazy illness, hard for others to understand. I am starting pineapple and turmeric.

    All the best

    Julie

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    • Posted

      Hi Julie:

      Rest and meditation are certainly good things! Exercise is also very good. Your rheumatologist would help you sort out what exercises are good for you. I know for myself that exercise helps a great deal. Interesting you should mention your lower back, right side mainly. I get periodic pain in my lower back on the right side. I think the right side is involved because we are right-handed and we do everything with the body oriented a certain way.

      I always keep a 10-day "short burst" supply of prednisone handy. Every 9 months I get a new prescription and throw the last one out as it loses potency seriously by that time. If things get bad enough I use the short burst. What relief. I might use it once a year or twice a year. It interrupts the pain so that when I go off it I am good for quite a while.

      I am retired but do some consulting work part-time. Sitting down and working at a desk can be torture. Moving around, being active, exercising is my best defense.

      Have you experienced losing skin on your elbows from time to time??? I am in that condition right now. That is an indication of RA. Also, I am experiencing chondritis (inflammation of cartilage where it meets bone in my rib cage). Drives me nuts and there is only one thing to do for it.....wait it out.

      Frustrating disease, no?

       

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    • Posted

      Hi Timothy,

      Thanks for your reply, feels good to hear a fellow Pally Person!I hope you are coping. Interesting about the right handed comment I have been curious .My left ankle is however giving me continously problems. The ligaments are so sensative I can't put my foot on the mattress at times. Wondering if I have chondritis , I don't really know which bit is which!

      I take prednisone 25mg and 50 mg Tramadol per day. I have halved my tramadol. My Consultant and GP keep telling me to reduce steroids. Every time I get a break from flare ups ( a few days; four times in 6 months ) have reduced it but within 5 hours feel terrible. I tried going without for 2 1/2 days but full on symptoms second day by third my hands and feet swelled badly, so I resumed taking it.

      My September appointment at hospital is looming and I am concerned I will be prescribed methotrexate. My research has shown negative info regarding side effects ; am v concerned! Have you any experience or thoughts on methotrexate? The tramadol helps me to cope the slow release is amazing, it deals with continuous pains .

      I am v active walking and swimming are best exercise Accoring to my Physiotherapy. They refused to give me exercises as my joints are so weak . I suffer when I do too much; try to be normal and keep up with my partner!

      Nice to communicate

      Julie

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  • Posted

    Hi Timothy

    I noticed after reading again that you are taking mxx, how is that going?

    Also I did not reply re skin and elbow. My right elbow had a flare up for 5 months that has now finished, although terrible pain I have had no skin problem.

    Julie

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  • Posted

    Hi Timothy

    It is very encouraging to hear about your experience of taking mtx ( predicted text having field day! with messages). I am taking 8 00 grams of turmeric a day only taken for 2 days , but no flare ups and I feel well!! You never know. I also have very high cholesterol and IBS my research found turmeric is said to help these, although there is little available research. I have limited my dose as taking so many meds at moment. Hopefully I will be able to reduce steroids or stop altogether!

    How long have you taken turmeric for?

    Thanks for your support ☺

    Julie

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