ReA for last four years and not going away? Help

Ihavelostinlife
Ihavelostinlife Member Posts: 3
edited 30. May 2018, 08:59 in Living with Arthritis archive
For the last five years I have chronic Reactive Arthritis that is not going way despite NSAID / TNF blocker. It's to the point this arthritis has moved up to the spine.

Few days will pass I would feel good then few days later it's arthritis flares up for no reason.

I have taken countless abx for months and months nothing seems to work. Right now I'm on doxy for last 6 months and it helps with the pain and all but the arthritis keeps coming back.

Slight increase in any vitamins or any new herbal product will cause the flare up. This I would assume is cause by increase in immune production or something.

Any one have suggestion how they are battling this disease. If this disease continues then I'm afraid that it will impact the heart.

Please help.

Thanks
John

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hello John and welcome to the forums on behalf of the moderation team.

    I am so sorry to hear about your Reactive Arthritis which has gone on for such a long time despite treatment.

    I am attaching a link to Arthritis Research’s information on the subject which goes into issues such as self-help and daily living. Apologies if you already know much of the information.

    https://www.arthritisresearchuk.org/arthritis-information/conditions/reactive-arthritis/what-is-reactive-arthritis.aspx
    We have a great community here, who have lots of experience of arthritis, I know they will make you very welcome and help in any way they can.

    If you think it would help you would be very welcome to contact our helpline on: 0808 800 4050


    Best wishes,

    Ellen.
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello John and welcome to the forum
    I'm sorry I cant help with the ReA...but I see Ellen has given you a link..there is also the search button at the top of the forum..and just to say you can talk about things on here , and talking does help..
    I do hope you can get some help very soon, please keep on at your rheumy..shout and be heard I say..
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I am so sorry that things are rough for you, reactive is supposed to clear but with the vagaries of an over-active immune system being what they can be, I wonder if this has morphed into another form of auto-immune arthritis? I apologise because I don't understand some of your shorthand - what do you mean by countless abx and doxy?

    I have psoriatic arthritis and take injected methotrexate (a DMARD) and humira, an anti-TNF to deal with it: disease activity is controlled but it is still a threat and likes to flare every now and again despite the meds (I am emerging from a long one, it's been going on since late January). I have had limited results with NSAIDS - what are you taking? I do not use herbal junk or do anything to stimulate the immune system as its over-activity is the root cause of the trouble. The joint damage has led to osteo in some useful places and I soften that pain with cocodamol. Life became a deal easier to manage when being pain-free became a thing of the past and knowing that things are only going to deteriorate rather than improve does make a difference to dealing with the present. When are you next seeing your rheumatologist? DD
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    Hi John and welcome from me too. I have RA which has led to OA. Not many people on here have ReA maybe because it has got better for them. That's what it usually does but occasionally it will keep returning or, even more occasionally, morph into RA.

    Forgive me if I'm brief. It's been a long day. I'll just answer in a very basic fashion but do get back with any queries.

    1. You write that you've had it for five years. Does your rheumatologist think it's still ReA?

    2. You write of taking NSAIDS and anti-tnfs. NSAIDS are normal for ReA and I've heard of DMARDS such as methotrexate being used for it but I think anti-tnfs are not regularly prescribed for it. Yours must be very aggressive.

    3. You say it's 'moved up to the spine. From where? Where did it start?

    4. In my experience all inflammatory forms of arthritis flare 'for no reason'. It can be infuriating. And scary.

    5. By 'abx' do you mean antibiotics?

    6. Doxycycline(?) is a DMARD sometimes used for early RA. I didn't know it could be used for ReA though I guess it makes sense.

    7. Vitamins and herbal products? Have you considered they might be causing more trouble by interacting with your prescribed medication? Check with your local pharmacist. If you have a good, Mediterranean-type diet you shouldn't need them anyway.

    8. It's extremely unlikely that your heart will be affected. I know RA can, occasionally, affect internal organs. I've had it for well over 50 years and it hasn't with me. Nor have I heard of anyone with an affected heart.

    I really must go now but I suggest you read up on ReA from ARUK, our sister organisation and probably the most informative one you'll find. https://tinyurl.com/ydf9736e
  • Ihavelostinlife
    Ihavelostinlife Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi, thank you for the support. Yes, doxy = doxycycline. I don't tend to take nsaid daily as they seem to cause stomach issue in me so I take them off and on.

    I am located in U.S. I have been to so many doctors and none know the answer matter fact most doctors have never seen a case of Tea.

    I think my reactive arthritis has morph into AS or my rheum says there is new name for AS it's Seronegative spondalartrolhy

    The reason I say my heart is impacted is because I get heart arrhythmia, never had then before.

    I take metoprolol heart medicine to control my beats. Also, all 4 of my valves are leaking mild trace.

    2 years ago echo was perfect.

    your right the herbal junk and certain vitamins seem to increase immune system thus making arthritis worse.

    I sometime will do a quick prednisone taper.

    All of my problem started after me and my spouse used a imported massage oil from another country.

    Must have some bad bacteria or something.

    My urine culture and all testing for genital is normal negative. No virus or bacteria found.

    My symptoms are:

    chronic prostatitis, eye pain, chest pain, elbow. knee and ankle burning kind a like rug burn, depression, mood swings, fatigue, and who knows more stuff.

    Chronic inflammation has also started another autoimmune disease with muscle inflamed. doc trying to figure out what that is since ck levels are high.

    The spine pain is mostly mid spine and stiffness.

    Out 0f all this heart arrhythmia is the worst when heart arrithmyia occurs I feel hot flash, urge to bathroom, dizzy, and then heart will race.

    my holster monitor shows it's coming from sinus node with normal rythem.

    I blame everything to reactive arthritis never had a issue in life prior.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Enjoying good health is no guarantee that things will always be that way but people who have it naturally assume it always will and feel singled out when it isn't. Reactive arthritis is triggered by infection but there's no point in wondering about what caused it, whatever it is is here, possibly to stay and has to be dealt with. The major drawback of good health is that it does not prepare one in any way for things to go wrong, I was born with auto-immune issues so have no idea what good health is, let alone what it feels like.

    I don't know much about the American health care system but know that being unwell can be an expensive business. Private health insurance over here doesn't give cover for long term chronic conditions (they know on what side their financial bread is buttered). There are around three hundred auto-immune inflammatory conditions so ruling things out can be a time-consuming business. DD
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    You have a lot going on and it must be very difficult for you. I must emphasise that I have no medical training of any kind, just 56 years of rheumatoid arthritis and about 40 of osteo. I also have a son and grandson in USA so I have some knowledge of the difficulties with health insurance. You guys tend to get much quicker appointments than us but they can cost a lot, especially if things are not specifically diagnosed.

    I'm not really surprised that “most docs have never seen a case of ReA. I'm guessing it's much the same here, too. It's not very common. As for AS / seroneg spondyloarthropathy, I think both names tend to be used.

    I don't know how useful it is to try to determine the hows and whys of the start of things. I've no idea why my RA started though I did have asthma, another autoimmune disease and my mother had psoriasis. That;'s no real help to me. It's here. I've got it.

    You have an awful lot of symptoms and I guess it's hard to know which are 'original' and which have come as a result eg depression, mood swings, fatigue are all fairly normal reactions to having a lifelong disease. Pain is absolutely standard fare with arthritis of any kind.

    One of the things we all sometimes do is to blame everything that happens to us on either the disease or the medication. I wonder, is there any chance that the enlarged prostate is simply due to age? My husband has had one for, roughly, 10 years. The heart arrhythmia? Well, that can happen, too, just with age.

    I didn't actually say that vitamins and herbal supplements might make things worse by boosting your immune system. I just said they might make things worse. These things can interact both with each other and with prescribed medication. They are not regulated so can contain harmful substances which are not necessarily listed. In your shoes I'd drop any of them for starters.

    Prednisone is what I think of as a seductive monster. It can make us feel much better while quietly damaging internal stuff. Sometimes it's necessary but we're usually better off without it if possible. As for NSAIDS giving you stomach problems – they're notorious for it. Do you have a stomach-protecting med to take with them?

    Sorry, must go again.

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