Palindromic Rheumatism

Posted , 3 users are following.

Need info on this type of ailment. I need specifics on this as opposed to RA or regular arthritis. This form comes in regular episodes about 5 weeks apart. It can develop into RA. In the early stages it is not an autoimmune disease. I believe I could be developing into RA at this point. It is possible that I have had this since 1990s. I don't believe it responds to diet, but if it does, I would like to know that. I can't take quinolones (hydroxycholoroquine) or turmeric with black pepper (allergic). Also allergic to pineapple. Argh! Up a creek here! Rheumatologist will be calling soon, need to know how to deal with this new doctor properly. The story of one of the RA patients who heard from her rheumatologist frequently was very endearing, but unbelieveable at the same time! A rarity! Lord, help me find one of those! Got lots of good info from all the writers on the forum. Never have taken anything as strong as Methotrexate. This has not been diagnosed by rheumatologist yet, but by another type of doctor off the top of his head. He is sending me to rheumatologist for workup. However, I have had this for 2 years and can identify the exact day it starts by repetitive symptoms and random attacks of inflammation. Each episode lasts 5-7 days. First attack began August 2015 and was the most severe. Episodes began diminishing in severity after 8 months or so, but have suddenly increased in March and April 2017. Would like to hear other alternative treatments besides the ones I have mentioned that I won't be able to take advantage of. This is attacking my intestines along with joints (knees, shoulders, feet, hands, back). Tongue burns most of the time. Thank you in advance, Forum writers!

0 likes, 12 replies

Report / Delete

12 Replies

  • Posted

    Hi leogirl

    I too have palendromic arthritis it all started for me around 18 months ago, it just came out the blue I have the worse imagination known to man and just thought it was the beginnings of an end for me. I was finally diagnosed and was shocked as I didn't think in a million years that my symptoms could be such a thing as arthritis. I was put straight onto methotrexate and the same day had a steroid injection which I may add gave me my life back. But however after a while I was told to come off it as my liver was showing raised enzymes. My goodness the pain in my hands came back with a vengeance, worse than before, so when I went back I got another injection and told to go back on it, that was the beginning of October last year and touch wood I have been great apart from a couple of days I have had stiff fingers which goes away as quick as it came.

    My rheumatologist very pleased with me, and said if I stay well then in August he will look at reducing my 6 tablets per week 15mg which is classed as a low dose anyway. I really don't know about alternatives but I do take vitamin d and fish oil maybe that's contributing I don't know, I am big on exercise too, so I am just going to keep on doing what I am doing cos for me it seems to be working, good luck anyway, there are other people on here with the same arthritis as us so hopefully we can both read what they say.

    Report / Delete Reply
    • Posted

      Hi shirlee...thank you for your story. This sounds like my first event 2 years ago except it was hands and feet and burning tongue. Couldn't use my hands or walk well. But each event every 5 weeks has been different attacking someplace else...miserable. This week it is knees and intestine. I didn't realize until I read up on it that intestine could be involved. Now I believe I could have had this many more years than 2. I hope to find a good doctor in the Phoenix area who treats Palindromic arthritis succesfully. Appreciate hearing the success of your regimen! Thank you.

      Report / Delete Reply
    • Posted

      Your welcome, do you know I didn't realise that it affected internal organs etc I have had so far shoulders, knee and hands which have been the worse, and I know the exact feeling I get and know damn well I will have a rough day the next day, it only lasted a few days at a time, I just think the other aches and pains I get are old age aches and pains as I will reach the big 60 next year, I have also read somewhere that it can go altogether on a small parentage of people, I don't like reading too much as sometimes ignorance can be bliss if you know what I mean. I live in Newcastle upon Tyne in north England and the hospital I go to is amazing they are so thorough which is peace of mind, Iets hope and pray that we are the small pacentage that it vanishes, instead of early warning signs of rheumatoid arthritis x

      Report / Delete Reply
    • Posted

      This is such interesting information. My heritage is English and maybe some Welch on both sides of my family. Makes me think there could be a connection there. My sister is showing signs of this, too, and I believe my mother had this and died never knowing about it. She developed all sorts of things that were unexplained. I believe that having this under control is important. And I am coming to believe that food is only a small part, if any. The severity I am experiencing in the past two years, may be the transition to rheumatoid. It was sudden and clearly obvious as was what I believe to be the beginning in the mid 1990's. Do you have ridgy fingernails?

      Report / Delete Reply
    • Posted

      My fingernails aren't bad but I get red spot things on my knuckles and have had a funny rash on the palms of my hands which has gone now I believe the steroid injection I had last October may have helped that, it's all to do with auto immune stuff, I had to have a biopsy and that's what it came back with. I also had alopecia when I was 24 for a year then steroid injections helped it to grow back, so I must have a very over active immune system the rheumatologist told me. The methotrexate certainly has helped though I don't like taking it but have no choice at the moment if I want to be pain free, my rheumatologist also told me that two auto immune things usually come together, I just hope mines under control now I try to take one day at a time, I also take a 5mg folic acid 6 days a week, that apparently helps to subside side effects that come with this drug, my hair has suffered but not noticeably to other people as yet

      Report / Delete Reply
    • Posted

      Oh, Lordy! You are striking a chord with me. My hair started falling out at the same time the episodes started 2 years ago. Five months ago I had to buy a wig because I couldn't style my hair anymore. It was just pitifully thin and unhealthy. It is still that way. I wear a very lightweight turban to bed just for warmth and at home around the house. And I wear the wig everyday outside the house. It is absolutely adorable and people just love it. They think it is my hair and that I am a new person! So I can't be upset with that! But I have thought recently that I should go to my dermatologist about my hair. Your letter tells me this is probably correct. Someone else told me about steroid injections for hair loss just within the past week.

      Report / Delete Reply
  • Posted

    Hi Leogirl:  This is a club that we would rather not be a member of, eh? Sorry about your palindromic RA. I have it as well but so far have been well controlled with a low dose of methotrexate and hydroxychloroquine. Right now, my palindromic RA has settled in my ribcage, causing inflammation where bone and cartiledge come together and is called chondritis. This has lasted for several months now and seems to be slowly getting better. There is nothing that one can do for it but wait it out. The pain can catch me by surprise. And my tongue looks funny but I never associated that with RA. I will ask my rheumatologist about it.

    All the best to you

     

    Report / Delete Reply
    • Posted

      Glad to find you on my thread, Timothy! Yeah, don't want to be the lead of a club like this. Such a variety of strange symptoms. Can't figure out how they connected all of these together! I think my father may have had what you are talking about. He was taken to the hospital for possible heart issue because of that pain. One time his potassium was way off along with it and another time it was called pericarditis. Interesting anyway. We'll keep searching for someone who comes to the site with an answer that hits home with all of us!

      Report / Delete Reply
  • Posted

    IMPORTANT: This is to all who post on this condition discussion! It may refer to Palindromic Rheumatoid Arthritis also as this is a consequence of Palindromic Rheumatism if gone untreated. I have posted on other conditions and have come to realize that some of the questions require responses that are country specific. Please make your country known if you are needing any kind of information that might have to do with benefits or medical requirements in your own country. I changed my profile to reflect my country. I love having conversations with all of the people in this forum. I believe it gives us a much broader scope of information. Thank you for sharing with this forum!
    Report / Delete Reply
    • Posted

      Good point! I was also getting a distinct " vibe" between those of us in the US and those in the UK. Medical practices and ease of access are very different. Thanks for point this out for all of us.

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up