New to reactive arthritis

OdamL
OdamL Bots Posts: 11
edited 13. Apr 2015, 15:26 in Living with Arthritis archive
Hi new to the forum and to the world of arthritis. I am 35 years old, diagnosed with reactive arthritis 3 months back. It was long wait before getting diagnosed, after several blood tests and X rays; doc finally came to conclusion and prescribed me sulfasalzine after NSAID failed to manage pain, initially. How long it will take to show its benefits? Things are just Ok to no improvement as of now and I have swelling and inflamed joints almost every day, especially knees, ankle and wrist. I am about to ask for steroid injections in my next appointment, hoping it helps. Anyone here with experience of steroid jabs, please, I need an opinion from real ReA followers?? Or should I give more time for sulfa, I am taking it for 1.5 months now.
It has limited my mobility to great extent and my work life has affected heavily as I used to work as outdoor activity instructor which seems now impossible with this horrified condition!!! It scares me lot when I think about my future with this debilitating condition

P.S : I have been long time reader of this forum, and I guess this forum is more responsive than say hello , so posting here directly, hope mods don't mind.

Odam.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hello OdamL

    Welcome to Arthritis Care Forums. As mods we are here to help with any problems you may have on the message boards.

    There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

    I look forward to seeing you posting on the boards.

    All best wishes
    Mod B
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I have heard of this form but cheerfully admit I know little about it. I gather it is triggered as a result of an infection but I believe it can clear: as to how long that may take I don't know and of course it comes back when another infection is contracted. I have psoriatic and osteoarthritis so am affected all the time, with no remission and no promise of a reduction in pain levels etc. The meds for the psoriatic are keeping that under control but they do not affect the OA because that is a very different beast. I wish I could be of more help but, alas, I cannot. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello and welcome.

    I have RA, so like DD have no prospect of it disappearing from whence it came, and I don`t know anything about Reactive Arthritis, sorry.

    I do have some experience of sulphasalazine, as it was the first DMARD I was prescribed. I was told it could take as long as 12 weeks for it to work - and was given the same time-frame for subsequent drugs/combinations of drugs.

    I`ve had numerous steroid injections, both general ones and into specific joints - sometimes they work and sometimes they don`t, but personally I would always have one, given the chance, if I was really struggling.

    Sorry I can`t be more helpful.
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hello OdamL Like the others I have no experience of ReA as mine is RA. As it can go away again, I do not think many people with it stay on here for long but if you put 'Reactive Arthritis' into the search engine box, other threads will appear.

    It's normal to wait around 12 weeks to seemof meds are working but, if yoi have a problem, you could always contact your rheumatology helpline.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Jaclyncollin
    Jaclyncollin Bots Posts: 36
    edited 30. Nov -1, 00:00
    OdamL wrote:
    I am about to ask for steroid injections in my next appointment, hoping it helps. Anyone here with experience of steroid jabs, please, I need an opinion from real ReA followers??
    Odam.

    Hi Odam,

    I don't have Rea, but RA for past 6 years. but as far as I know about this medicines, they could be very tricky in their individual response. Steroid injection effectiveness is very difficult to predict individually. However, in case of severely inflamed joints, it is one of the best options to consider. It is particularly true when there are large joints involved like knee joint. Though they are often very effective for short term, an injection can provide almost immediate relief for a tender, swollen and inflamed joint. However, this treatment can only be used rarely, since corticosteroids can weaken the cartilage and remove the minerals from (and therefore weaken) the bone, resulting in further joint weakness. There would be some dietary limitations while you undergo this therapy. Physical therapy also might help.

    It’s best to discuss and work with your healthcare team to choose right option for you.
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hello Odam
    And welcome to the forum,sorry I cant help has I don't take the meds,but glad you have joined us, ..its good to talk to others in similar circumstances... and I do wish you well for the future...
    Love
    Barbara
  • Barbieg
    Barbieg Member Posts: 40
    edited 30. Nov -1, 00:00
    I can't help as regards to your type of Arthritis as I have RA, but I have taken sulfasalazine since I was diagnosed in 2004. I was given a patient card/shared care booklet were they recorded all the results of my blood tests since starting the sulfasalazine. I've just had a look at it and I started with a reading of 96 ESR. I took at least 5 months to get down 38 ESR. I was able to see that I was improving each month by looking at my little book, even though I didn't feel as though I was, so please don't assume they are not working. It takes time, but they are still working for me thank goodness. I am one of the lucky ones I think. I'll never be as fit as I was before I was diagnosed, but I'm much better than I thought I would be. Hope this helps as I remember how frightening it is when you first start on the lovely Rheumy journey.
  • jdm
    jdm Member Posts: 17
    edited 30. Nov -1, 00:00
    Hello, I was diagnosed with reactive arthritis 20 years ago after a stomach bug. I was very unwell for the first year, then it disappered but keptcoming back until it settled into a permanent milder form. After 5 years I eventually managed to get on sulfaslazine and did not notice any real affect for a few months. I took sulfa for a couple of years and found my symptom continued to improve after stopping it. I was well enough to start exercising which in turn improved my symptoms and it became very manageable until I then had two children and had a massive flare and possibly developed AS as well. I amnow keeping fingers crossed that the 18 month long flare is subsiding otherwise will be trying methotrexate as tried and could not tolerate the side effects of sulfa again. I hope you are able to get your symptoms under control soon
  • Ladybrown
    Ladybrown Member Posts: 130
    edited 30. Nov -1, 00:00
    Hi
    I was diagnosed with Reactive Arthritis about 6-7 years ago (to go alongside the OA I already had in my knees). I didn't take any other meds than painkillers and had the Rea for about 2-3 years - it tended to flare up every time I got ill and was slightly less severe each time. I haven't seen anything of it in years, and hope you get a similar response.
    In terms of steroid injections, I had one which reduced the swelling and pain in my knee for a while but I had a bit of a bad reaction so it was really painful for 3-4 days afterwards. Plus i got 'red face' which was an embarrassing side effect! To be honest it's worth trying everything to see what works for you.
    Good luck
  • OdamL
    OdamL Bots Posts: 11
    edited 30. Nov -1, 00:00
    Hi ladybrown,
    Your reply gives me some hope. Yeah, my doc has given me an idea about flare up and told to be extra cautious to avoid infections. Even my research has shown that ReA do get better in most of the cases within 8-12 months. So I have all my hopes up. I still have my good and bad days but then things are looking promising from past one week. I have decided to go ahead with steroid injections, I hope it helps and I am keeping close eye on sulfa effects. Currently I am in process of identifying activities that flare my joint pain and doing my best to avoid them. My current short term goal is managing a fatigue and adding anti-inflammatory foods in my diet to see if it helps.

    Thank you all for your wonderful replies.

    Odam.