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Reactive Arthritis... Im going to stay positive

Posted , 10 users are following.

chriswestie
chriswestie

Hi everyone, I stumbled across this site while looking for some information on my reactive arthritis and like everyone who looks on here I have looked all over the internet about this terrible condition.

A bit about myself, my name is Chris, 24 and I am a outdoor activity instructor and overly active playing football 3 times a week, doing open water swimming twice a week and then just the general nature of my job keeping me fit.

My Storey...

I came down with reactive arthritis on the 18th June 2013 and its now 21st July 2013. I got the condition after having gastroenteritis for a week starting 11th June, after a couple of days I went back to work not 100% but well enough and noticed 3 days later that my knee had swollen up to a crazy size and was causing me untold pain. On the evening of the 18th I went to hospital and they straight away diagnosed it as reactive arthritis and drained my 3 times to test if it was infected (it wasn't). I stayed in hospital over night and they put me on diclofenac, pain killers and some stuff for my tummy which still wasn't right sent me on my way informing me all would be fine after a week of rest. I wasn't fine a week later and in fact was much worse with my feet swelling up and my right elbow and fingers. I went to my gp after days of crazy pain sometimes barely able to move or get out of bed he sent me to rheumatologist on the NHS that appointment was months away so to speed up process I decided to go private for an appointment to see what they would say. Straight away they took me off the diclofenac and put me on 20mg of prednisolone (4 tablets, steroids I believe) It was then the weekend and I was in untold pain with not being able to move and joints swelling up I went straight back to the rheumatologist after the weekend and they doubled my dose 40mg and added 2 tablets of sulfasalazine a day. This has helped, the pain is still there but no where near the extremes of what it was.

While all of this has been going on I have been booking an appointment with my gp every other week to keep him in the loop. I have had many blood tests that both my gp and rheumatologist look at and decide the next course of action. Reading stories id say that I am in the middle bracket of how serious my reactive arthritis is with the amount of pain but I feel that this may be because I have reacted quickly to each individual new symptom. I am also going physio on a weekly basis and as soon as I feel strong enough have been told to go swimming. I have lost a lot of muscle and strength due to not doing any real activity for a month which I feel is making me feel worse.

Now I am a month in and like everyone I guess we are all being told you will get better within 3-12 months. Also like everyone I have goodish days and terrible days I have lost my active lifestyle at the moment, I cant work and even going out to meet friends is a chore and have to call it a night early. I am not an idiot I no it will take time and I have had some very dark days in the last month where I have just thought what is the point this disease is to strong for me. I cant say 100% that i'll play football again like I did and be able to do everything at work like I use to, but I'm going to keep trying as you have to believe what the doctors are telling you.

If people are interested of how I get along who are in same position I will keep posting on here to update and hopefully will improve for us all!!

2 likes, 16 replies

16 Replies

  • chriswestie
    chriswestie

    Posted

    I'm into my 3rd month now and feel like i'm improving but that said I am on a crazy amount of drugs that could just be hiding the problems. Currently I have 30mg of prednisolone a day, 2000mg of sulazopyrin per a day and 10mg methotrexate a week.

    In the last 3 weeks I have been moving a lot more freely and with less pain. I do as much exercise as possible walking to the shops and swimming but as yet still unable to return to work as an outdoor activity instructor.

    You are a lot further along than I am but from what I hear its a long term thing and you can have good days/weeks and bad days/weeks as im sure you have found out. Stay strong and I really recommend swimming as I started feeling better and stronger when I started doing this twice a week.

    • Andy_Murray_95
      Andy_Murray_95 chriswestie

      Posted

      Hi chris I just been told I got reactive athritis it's been hell just read your foram how are you doing are there light at the tunnel I'm a nurse and never heard of this disease till I was diagnosed  how are you  are you back at work 
  • alexohio
    alexohio

    Posted

    Hi Chris. I have the same story as you and I am anxious to find out if you are doing better.

    I am 32, athletic female, with so far undiagnosed "stuff". I would love to share the whole story but in the US u have to restrict yourself a bit when you are in the middle of your medical process.

    It has been a month, two bouts of steroids and a trip to the ER so far. According to a ton of tests I am clean as a whistle... Days of emotional despair and feeling absolutely terrified about the future are mixed with tiny hope from other peoples experiences.

    I hope you are feeling better and that you continue to share your stubbornly positive outlook. I am an absolutely positive kind of person who truly believes that all matters of worry will work themselves out in the end, but this is hard to exist with. At least I can walk again. For now.

    Wishing you a bunch of good days

    • Andy_Murray_95
      Andy_Murray_95 alexohio

      Posted

      hi just been told I have reactive athritis it's been hell is there light at the end of this fight 
  • john66751
    john66751 chriswestie

    Posted

    Hey just thought id let you know my experience of ra, iwas diagnosed at around 24 im 44 now i still work in construction had a fairly normal 20 yesrs had to give up sports though well anything thats impacted based can still bike ride swim use cross trainers ect just no running 

    some advise i csn give you is never stop taking the sulphersalazine most likley on it for life ...i did a few months ago and im crippled now been bed ridden for 3 months both knees done in ,never had it im my knees before so i understand you pain the worsrt ive ever had .

    Also watch out for your eyes in the next few yesrs i almost lost my sight iritis is common get straight to an eye hospital and tell them youve RA esily treated with steroids if caught early 

    stay positive and remeber thier are people who would give thier anything to be in are position n rather than what they have ...it will get better being on the dmards early gives you a great chance of slowing its progression 

  • chestnutale
    chestnutale chriswestie

    Posted

    Hello there, 

    Just some experience from Spain. My name's Alex, I'm 33 and was diagnosed about 10 months ago. I started feeling extraordinary pain located in my back, left side, around my kidney, along with some right knee swelling. I obviously had no idea what was this about. I got to he hospital and, and then derived to the rheumatologist. After tons of tests, all doctors could be sure of is that swelling was taking place. No rheumatoid factor, no HLA positive, no anything. Just guessings about an urinary infection as a trigger for what happened next.

    So I began to take the so familiar bunch of pills, prednisone at first, sulfasalazyne joining later. I must say, the back pain almost kept me from walking, felt like being rigid as a stick. Before prednisone came to my life, I was infiltrated with intralumbar Inzitan injections, 6 in a row, 1 per week. Back pain vanished. Right knee swelling remained.

    For a month I could not walk unless I was on crutches, then I began walking on my own. I have never taken more than 12.5 mg prednisone and 3000 mg sulfasalazyne a day. I currently take only 2.5 mg prednisone and 3000 mg sulf. that is 6 tablets (though I feel its combined effect as mostly useless) along with ibuprofen (600 mg, once a day, only when needed, I mean, when morning stiffness gets quite unbearable). 

    I must admit I enjoy a near-to-normal life. I walk my dogs, I'm able to go to work on my own, I can take the car... Well, you know. But it doesn't receed at all. You all know how this curse behaves, some days gets worst, some others gets better, bu never actually good. I miss my knee as it was almost one year ago. I miss riding my bike, I miss mountaneering, I miss my outdoor life which I often fear to never come back.

    However, something quite interesting is happening lately: bad times are becoming sparser and quite not so intense, while good times are increasing, both in time lasting as in intensity. Not as noticeable as I wish, but it could be a start. I really wish it is.

    So I want to think ther is light at the end of the tunnel. I just wanted to let all you know how I'm going through this condition. Hope it helps.

    Never give up!

     

    • katenyc5
      katenyc5 chestnutale

      Posted

      Hi Chestnutale,

      I hope now that you are feeling better. I am 10 months in and related to everything that you said. I function but my life has changed. I was hoping my now that things would be easing and I have had periods where I felt that was happening but then it flares up again. Mine mostly affects my knees - left one worse - and on and off my spine. I am worried about damage to my left knee.

      Like you, I am an active person and really long for those days to come back. Taking Sulfasalazine and Naproxen and strongly considering Humira now.

      I would love to hear that you are feeling better.

  • e39900
    e39900 chriswestie

    Posted

    Just wondering if anyone has any updates on their symptoms.   I have had a similar experience with no answers.  Seems like all of us have similar stories very active, most tests negative, but whatever this is significantly effecting our lives.
    • katenyc5
      katenyc5 e39900

      Posted

      Hi Chris,

      I just posted above. I have had this for 10 months. I have the HLA gene. Other tests negative but I think that this persists because of the gene. Changed my diet to eliminate gluten, dairy and sugar. Taking Sulfasalazine and feeling ready but nervous to try Humira.

      My issue is mostly in my knees and it is sometimes hard to walk.

      Glad I found this site. This is not so common, I find.

      Kate

  • philippa26696
    philippa26696 chriswestie

    Posted

    Hi, I'm just over a year in now and over the last 4 months I've been about the same. I can do most things, I have two small children so can do most things for them, but not pain free and I can't go running which I love!

    It's better, but not right! Like everyone here!

    Trying to stay positive, praying for that day I wake up and can't feel my feet or knees or knuckles!

    Good luck everyone!!

  • megsflmngo
    megsflmngo chriswestie

    Posted

    Hi... I have had ReA now nearly a year. Found out last week during a flare that this is now a life long ordeal. Last year the same MD said to me I would be off prednisone by now and being on methotrexate would be may be a year or two.

    he told me that my body can not tolerate less than 5 mg of daily prednisone without going into flares. Use of the methotrexate will be longer. Now i have to decide on Humira or Enbrel to eventually replace methotrexate.

    My shins look like an explosion of varicose veins -- lumpy bumpy and swollen.

    My other sources of pain are toes and fingers on the right side and same withing right knee and some ribs.

    I work full time. I have 3 kids at home 15,11, and 4 1/2. Another nearly 20 lives away.

    • katenyc5
      katenyc5 megsflmngo

      Posted

      Hi. I have 3 kids too - ages 12 and 9 (twins). I work full time too but luckily I can work from home and have been doing so much so lately.

      I am same as you except right now flared up and walking funny (to me anyway). I am slower than normal. When I have a good day or days, it means it is not awful but it is not right either. Used to work out and still try but with limitations.

      Thinking of trying Humira but the side effects worry me. On Sulfasalazine since January. Not sure it is helping anymore. Don't want to attempt stopping it. My swelling is better but pain is not.

      I hope we all can put this behind us soon.

    • katenyc5
      katenyc5 megsflmngo

      Posted

      Please post if you decide to try Humira or Enbrel and how it works for you. Thanks.
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