Seeking Reactive Arthritis success stories

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Hi,

My hubby has been suffering from RA for over three months, but was only diagnosed about two months ago. Since then he's been taking Sulfasalazine tablets, 2X2 tablets a day for the last month. To manage pain, he takes Cataflam (50mg) 2X1 tablet a day.

He has bad and worse days, with severe pain in the morning gradually fading away as the painkiller kicks in. Then there are a few pain-free hours in the day so he manages to go to work (he's a teacher), but the pain returns gradually starting like a clockwork at around 4pm (although it seems to have returned earlier and earlier in the past few days).

We've been so hopeful that the meds would start working but there has been little or no improvement. His pain migrates around his body, from foot, to back,to chest, to jaw, to knee (a new pain), lower back, shoulders, often affecting more than one joint at a time.

In the past week he's also developed severe fatigue. He's been asleep before our little one-year-old son, who goes to bed at 8. He's been depressed too, partly because he's been putting on weight as he is not able to do exercise, and partly because he is losing hope for recovery and feeling down because he can't be the physically active daddy he'd like to be. Also, we're planning to try for another baby and while on Sulfasalazine, our chances are slim and there's also a risk of abnormalities. I know that many RA patients are on antidepressants, but we hope he can manage without them.

I've read that Sulfasalazine doesn't take effect for the first 12weeks. Is there anyone out there for whom this medication has been effective? How long was the recovery phase?

I know there's no way to predict how long my dear hubby will have to suffer this horrible disease, but reading success stories would help him keep the glimmer of hope that he will recover one day alive in him.

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  • Posted

    Hi Painful but Positive

    I have experienced so many peculiar feelings over these recent months, not sure about veins popping but had terrible muscle twitches, toxic hot sweat day and night. Even my skin felt odd, my face was puffy and waxy with swelling around eyes. I was grateful for the steroids initially to help with the pain but if you read the side effects and withdrawal effects they are awful. I found that when I started reducing I would have a flare and feel worse for a few days. the temptation was to increase again but the symptoms of a flare are the same as withdrawal. For that reason have persevered and am now down to 2mg. Have to go for blood tests on the 2nd but the way I feel now am hopeful the ESR and CRP will be normal. Will try to be off steroids before I go to see rheumatologist on the 30th. Keep trying to take your walks and build up those muscles again, I shall be strolling out later, also with a dog we are looking after. Take care, sending love and best wishes xxx

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  • Posted

    Hi Fat Fingers

    It is so weird today I have hardly any pain in my knees mostly in my left bicep, shoulder and finger joints, as have been out visiting friends so not much up and down like I usually do. Also not been followed by the dog we are also looking after for another week and almost tripping up over her as she is always on my heels. Avoiding low, low settees helps smile I have an appointment on the 24th January. I will look up cysts under the skin. Am not getting down in the dumps over this as am off out with hubby to night to friends should be quite a good do.

    See you soon painful but positive. smile x

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  • Posted

    Hi painful but Positive

    Hope you enjoy your night out, it is good that you are feeling well enough to go. Do you find you have good days and bad? That is how my illness has gone, some days have felt better and perhaps done too much only to suffer for it the next day. However am pleased to say having more good days than bad now, feeling positive myself at the moment. Lets hope the New Year brings us good health and we say cheerio to this awful ailment for good xxxxx

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  • Posted

    Welcome to 2014 Fat Fingers

    I experienced day sweats as from yesterday so needed fresh air and took Gracie out on my own as everyone was busy it was a slow walk, but I managed it. I rested for the rest of the day as I knew I had to walk back from our evening out. The evening was fun,

    The walk back was not so fun long and tiring. Spent most of the day in bed today recovering with aches and pains in my muscles (Calves).

    I looked up cyst under the skin but didn't come up with much so will investigate.

    I think your right it will be a case of good day - bad day until the bad day ceases. I will keep you posted.

    xxx

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  • Posted

    Hopefully your sweats will diminish as you get better and the steroids are reduced. Don't despair perhaps you just did a bit too much. I found that on a good day I tried to do things as normal and then paid for it the day after. It is very disappointing but hopefully, like me, you will soon start to have. More good than bad days. Today I have been on a 4 mile walk, could not have done that 2 weeks ago but have got pain in my lower back and buttocks now but am feeling positive. Thought I would never get back to work but am hopeful. You will get muscle aches because they are out of condition but will come good in the end. Don't despair. Hope we both have a healthier new year and I won't be calling myself fat fingers for much longer ! Lol xxxx
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  • Posted

    Hello to all my fellow Reactive Arthritis sufferers. I checked this forum back when I was first diagnosed to hear success stories so I owe it to others like me to follow up and share my own success story. I started having problems 7 months ago. At first it was severe lower back/hip pain (later we realized that it was probably the sacroiliac joint, but at the time it was hard to pinpoint) and was so bad that I couldn't walk without crutches and couldn't put any weight on my left side. This was followed a few days later by severe swelling of my knee. After that followed a long series of tests to figure out what was going on. Eventually after a positive HLA-B27 test and after ruling out other possibilities my doctor was able to say that I have Reactive Arthritis. Thankfully, I seem to have had a much easier time than others. After a course of prednisone in about two weeks the sacroiliac pain was much better. The knee swelling was much more of a problem. I have had pain in the knee that is only really going away now (although I still have some pain at night). I had back pains, pains along my spine in two spots, and tendon problems in my foot that made it very painful to walk. Praise God, all of these pains have gone away after 7 months. I am still taking a quarter of a 15mg meloxicam pill every day, but am hoping to be off that soon.

    I know that it is very discouraging when these pains don't seem to go away, but for me at least, there has been a light at the end of the tunnel. Don't give up hope and just be patient. Take joy in the small victories.

    Blessings,

    YankeeInRussia

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  • Posted

    Hi there I am also six months along in this sorry saga of ReA. Been on and off steroids several times but each time flared again. Back on prednisolone again at 10mg and to reduce very slowly over next ten months. Pain all but gone, some aches but not needing any pain killers. Fatigue is ongoing and fingers and toes swell from time to time. However am feeling that there is light at this very long dark tunnel at last! It really is the strangest condition ever!
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  • Posted

    Hi I have had this condition for 4 months have been on steroids and have taken Methitrixate. I only, have excruciating pain in my left hand when I try to bend or straighten my fingers, neck and spine.

    When I walk my spine hurts and then my breathing goes down hill. I have just seen my asthma team and they reckon that my breathing goes down because I can't carry myself when in pain through my spine.

    being tried doesn't help either, but I am trying to stay positive. All I can do is wait and see what will happen over the coming days/months.

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  • Posted

    Hi All,

    One year passed from this discussion.

    Hope you all feel much better by now.

    My knees and ankles are hurting for 8 months, it was harder in first few months. I could hardly walk only for few minutes and I was so depressed. My pain started with knees and then went to the ankles. I had some inflammation as well.

    Took several months till I was told I have reactive rheumatism. Nothing is visible from my blood test though. I feel better now but I have again good and bad days and mild fatigue. I am taking methotrexate 7.5 each week.

    I would like to know:

    1- if all of you diagnosed with reactive rheumatism had some infection detected and took antibiotics.

    2-did you have to take synovial fluid test?

    3- was anything visible in your MRI?

    4-are you ok now? How long you were or have been involved with reactive rheumatism?

    5- what natural remedies and diet helps you?

    Wish you all health

    Ambitious

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  • Posted

    I discovered that I had Reactive Arthritis just over 10 years ago. I was 19 and suffering with various symptoms, none of which I realised were linked. Initially, I had conjunctivitis and non-specific urethritis. I saw my GP about the former and went to the sexual health clinic about the latter, receiving successful treatments for both.

    Shortly after this I started having strong pain and stiffness in my lower back, to the point where some days it was a struggle to even get up out of bed. I started taking high strength Ibuprofen, but it had little to no effect. This symptoms then extended to my hands and feet. I saw my GP, who did some blood work and detected high inflammation, saying that we could possibly be looking at Rheumatoid Arthritis. He then put me on Diclofenac. This helped more than the Ibuprofen but the pain and inflammation was still very much there and it is also very harsh on the stomach.

    This was pretty much the situation for the best part of a year. I was signed off work and university for a year and didn't do a great deal besides sitting around being miserable. Daytime TV will do that to anybody! Anyway, I called the doctor's surgery, concerned about being on Diclofenac for such a prolonged period. I made an appointment at the same surgery but with a different GP. This time I mentioned everything. The joint pain, inflammation, conjunctivitis and NSU. I think this was probably out of sheer desperation at this point, just trying to find any cause or link. He said there's a very strong possibility that they are related and referred me to see a Rheumatologist at the hospital.

    I had some more blood work done at the hospital and then came the appointment. The Rheumatologist diagnosed me with Reactive Arthritis/Rieter's Disease right there and then. He proceeded to give me a cortisone shot in the back side, which was far from pleasant! Thankfully though, this was all that was needed.

    I am now 30 years old and have largely been syptom free since then, living a normal day to day life. I find that the only time I notice anything is if I let my body get run down. Thankfully these days I know what I'm dealing with so I know how to manage it. I try to eat healthy, do plenty of exercise and get plenty of rest. 

    I appreciate that this course of action will not be appropriate for everybody but if I can help at least one person then I'll be very happy. It can be possible to live a normal life with RA.

    All the best.

    Sam

     

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