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Posted 4/8/2014 5:00 PM (GMT 0)
Hello, I am a new member recently diagnosed with (probably) having Reactive Arthritis (ReA). There have been quite a few posts on ReA which I have read but none describe a condition quite like my own so I am hoping for some advice from others that may have had similar experiences.

Nearly 3 months ago I had a stomach ache and diarrhea for about a week. Then a week afterwards I started to experience eye inflammation which turned out to be uveitis, something I have suffered from 6 or 7 times before. A few days later I started getting stiff in my right knee. Within a few days both knees were very swollen, incredibly painful and i couldn't walk. My doctor started me on Naproxen, referred me to a rheumatologist and gave me a leaflet on ReA. In the days following I also developed inflammation in my right shoulder, left elbow and right foot. Two of my toes swelled up like sausages. I have been tested as HLA-B27 +ve and Rheumatoid negative.

Within 2 weeks of the start of the attack and only mild relief gained from the Naproxen and a muscular Cortisone injection I was started on oral steroids, (Prednisolone). The initial dose of 10mg/day didn't have much effect, so it was increased to 30 at which stage I started to see significant improvements. Fairly soon I have been able to walk more or less normally (especially later in the day) and feel generally well apart from pain in my foot and continued mild stiffness in my knees. It has been about 8 weeks since I started on Prednisolone and I have now tapered down to 12.5mg/day, I feel I am improving but the speed of improvement has slowed to a snail's pace and my toes (dactylitus) are still very swollen.

Last week I felt like celebrating after getting blood test results showing my CRP was back to normal and ESR down to 30 (both had been above 100). However when I saw my rheumatologist he seemed quite pessimistic and felt that if I was experiencing a "normal" attack of ReA, the symptoms should have now gone and said that I am no longer in the "acute phase". I didn't understand this because everything I have read suggests ReA typically takes 3-6 months to go away?? He suggested that I would likely need to start on Sulfasalazine which I understood to be associated with a chronic form of the disease.

As a very active person, my life has been thrown upside down. The prospect of not being able to get back to some sort of normality is pretty depressing. I am hoping that someone may be able to offer some glimmer of hope having gone through a similar experience? Sorry for the long post. Thanks for your help.
Posted 4/8/2014 8:31 PM (GMT 0)
Hi English. I'm surprised your rheumy called this "reactive arthritis." You test positive for the gene associated with ankylosing spondylitis, and you presented with a history of uveitis and gastrointestinal symptoms. How have you not been referred to an Inflammatory Bowel specialist?

I think you need a colonoscopy to rule out UC or Crohn's. The kind of joint pain you describe is quite common with IBD. It's called enteritis arthritis and is not damaging to joints. On the other hand, ankylosing spondylitis can be quite damaging to the spine and it seems like you should work to rule that out.
Posted 4/8/2014 9:18 PM (GMT 0)
Hi kazbern,

Thanks for your reply. Actually he hasn't 100% confirmed it as ReA but hasn't ruled it out, hence why I said probably diagnosed. Whereas he has more or less ruled out ankylosing spondylitis (no back problems and x-Ray was clear). IBD was initially mentioned as a potential cause dependent on evolution of gastrointestinal symptoms but there haven't been any issues on that side for a couple of months and I had a test early on that was clear. Thanks for the suggestion though, I will ask about a colonoscopy.
Posted 4/8/2014 11:05 PM (GMT 0)
The fact that you have had uveitis that many times prior to the start of this attack says to me that you likely have had some form of spondyloarthropathy for some time. X-rays cannot always show inflammation in places like the SI joints until the damage is quite severe.

I have ankylosing spondylitis and I can do most things I did prior to the onset of my AS problems. I did have to stop snow skiing as my rheumatologist felt any falls could further damage tendons that have been damaged.
Posted 6/11/2014 11:23 PM (GMT 0)

I am a new to this so please forgive if I prattle on a bit.

Over the last few days I have noticed bruising on my right  hand for no reason mostly to my thumb and surrounding area-tonight it has spread across the back of my hand and is quite puce red colour with heat and a strange ache but not too painful more a slight tight feeling. I have noticed my wrist has been aching quite badly too for about 3 months especially in damp cold weather.

I seem to have so much wrong health wise and take medication for blood pressure, depression and an under active thyroid. I am also waiting to go into hospital for investigation under a general as to why I have kidney stones and numerous bladder infections, I also have spondylitis  of the spine which is not too much of a problem at the moment though I do get a lot of neck tension and headaches when tired. There is also a problem with blood sugar which has yet to be confirmed but I am hoping that I can control that with proper advice and diet as I dont want more medication if at all possible.

In the past I had no major health problems  apart from dental issues which have now been highlighted as possibly conected to my thyroid and blood sugar issues.

I had serious health issues though in pregnancy - fibroids , toxcemia pre emclampsia etc which resulted in the Neo natal death of my first baby. I then had a Myomectomy to remove the fibroids and have 2 C sections for my 2 boys

Approx 12 years ago I had a slipped disc also followed by back pain , which has largely been no problem - touch wood ! Arthitis runs in our family my Father had it, my Mother had it very bad and had a hip replaced and My Maternal Grandmother had it - so I expect it could be rearing its ugly head in me and another ailment to add to my huge list

Post Edited (chocolatec) : 6/11/2014 5:30:26 PM (GMT-6)

Posted 8/31/2014 8:44 AM (GMT 0)
Hi all...I'm new to this and desperate for some advice!
I'm a 34 year old woman who has until now been quite fit and healthy. My problem started 5 days after returning from a fabulous 2 week holiday in Turkey. I woke up at 4.15 on the morning of 15th August with the most horrendous stomach cramps and rushing for the toilet. I didn't feel ill and had no fever so put it down to IBS and continued with my normal daily activities including going to work. Over the next few days the diarreah became worse and so made an appointment to see my GP 19th August who requested a stool sample and sent me on my way. The following day I gradually started to feel what I can only describe as sciatic pain in my lower back which was bearable and didn't debilitate me. However, during the early hours of the following morning I was in excruciating pain and couldn't walk. I was literally crawling on all fours just to get to the bathroom crying in pain...there was even a point where my poor husband had to carry me because I couldn't bare any weight. I honestly thought I had a slipped disc and made an emergency appointment with chiropractor that evening. By the time I got to him the pain had spread to my neck. He massaged me, clicked me, told me I had muscle spasms and to arrange an appointment the following day to get some medication from my GP. Following his advice, I saw my GP the following morning. He examined me (which was unbearable) prescribed me co-codomol and an anti-inflammatory gel and sent me on my way. When I awoke the following morning my first finger on my right hand was extremely painful and started to swell. As it was a Saturday my only option was to ring NHS Direct. Unfortunately they wasn't very helpful and told me to go back to my GP surgery once they reopened. I was barely able to move and the swelling started to spread to the palm of my hand. On the morning of 17th August I was so distressed and in do much pain, my husband rushed me straight to A&E. I was there for a total of 9hrs and after having an x-Ray on my neck and back, urine test and blood tests I was diagnosed with and extremely severe and rare type kidney infection. I was put on IV antibiotics and sent home with a weeks course of oral antibiotics and more co-codomol and told to provide a urine sample at my GP surgery the following Friday so that they can check the antibiotics were working. At this point I was glad that I finally had a diagnosis. Whilst I understand it takes up to 48hrs for any medication to kick in, I didn't show any signs of improvement and returned to see my GP 19th August. He checked my hospital notes (by this time I started getting pain in my ribs and the swelling in my right hand had spread to my wrist) told me that I have Reactive Arthritis and to carry on with my medication. He signed me off work for a fortnight, but he made feel like I was wasting his time! By this point I was at my wits end. Less than 24hrs later I received a call from the hospital with the results of my stool sample and was told I had campylobacter and to make an emergency appointment with my GP to get the correct type of antibiotic to treat it. I rang my GP surgery and explained everything to the receptionist and asked if I could get a prescription instead of coming to see someone as it took every effort even to just get into the shower. She put me on the triage list and arranged for the doctor to ring me later that afternoon. When he rang, I once again had to go through everything. He told me that the antibiotics for my kidney infection would also clear the campylobacter. I literally had to argue with him telling him that I needed a specific type of antibiotic specifically for this type of infection. He reluctantly wrote a prescription for clarithromycin. After 2 days of starting this a felt a bit better and able to move around...albeit at a snails pace and holding in to someone or something for support, but at least I'm in my feet. I'm also applying cold and heat packs to my neck, back and hand which do only help for a short time. I've also started drinking 60mls aloe Vera gel as well as taking cod liver oil and glucosamine. Whilst I feel better in myself and more positive, I'm still concerned about the stiffness in my neck as it's affecting my swallowing, and my finger (which although still swollen and painful) looks dislocated. I'm going back to the doctors tomorrow for further advise/ treatment. He'll probably tell me to take ant-inflammatory's, but until the results of my urine sample comes back I can't take them as they can affect the kidneys.

Sorry for rambling on, but is there anyone who suffers with the issue in the neck as I've only read about people with it in their knees, ankles, eyes, back or hand. I'm desperate for any advice, as I literally have to support my neck with my left hand just to get in and out of bed. Any advice would be much appreciated.
Posted 8/31/2014 1:55 PM (GMT 0)
What a crazy story. I really don't have anything to offer you except my experience with a viral infection (parvovirus) that usually afflicts children. I got it when I was 42, and it was my first experience of a reactive arthritis. Viruses can do that (I didn't know bacterial infections like yours could!). I had swollen feet and hands for many weeks as the virus ran its course. A friend of mine also caught it (our kids went to the same nursery school) and she had pain primarily in her neck. I think it is a pretty random thing where the arthritis hits you.
Posted 9/2/2014 3:27 PM (GMT 0)
I thought I'd give you an update of my condition and how today's appointment with my GP went.

I still can't move about very much and the pain and swelling in my finger has now become unbearable. My GP has put me on Zapain to control the agonising pain I'm in and I can now take ibuprofen to help with the inflammation. She's also referring me to see a Rheumatologist to investigate/ treat me further. She has informed me that the fluid in my finger will need to be aspirated. Although I'm not looking forward to that, I'm glad that something's being done and hopefully I'll be back to my old self in no time.
Posted 9/8/2014 8:59 PM (GMT 0)
Well English first of all reactive arthritis can take a year to go away. is it swelling in the synovium or is it tendon swelling? I got the diagnosis of two auto immunes i have the hla b 27 gene and a positive ANA. double whammy. ugghh but before i got the spine arthritis in my upper back i had pain in both shoulders, uveitis (i thought it was pink eye) and achilles tendonitis. now i have spine arthritis hip and shoulder arthritis and severe tendonitis everywhere elbows, ankles, wrists, biceps. except my achilles is fine now. i didnt have it in my spine originally and odd enough it took a year to hit my sacroillacs joint. it first hit the place that i had injured in swimming (shoulders and upper back) and i also believe i got mine due to chronic sinus infections and a bunch of flea bites when my room mate brought in this infested dog. ever since i left the apartment i became sick and never got better. im also just starting the sulfa drug i started two weeks ago. just be glad its not in ur spine and i hope you get better. the sulfa drug is a good idea it works for peripheral joints but doesnt help the spine. i would try it if i was you since you have it in the peripheral joints. its also best better then methotrexate for ppl who have HLA B 27 from what i know. it also has antibiotic in it as well as antiinflammatory so maybe it will help if the bacteria problem is still there.
Posted 9/9/2014 2:53 AM (GMT 0)
Hi, Finfiacco have you tried a biologic?
I have positive ANA with ulcerative colitis and a positive antiribosomal antibody. I have not been tested for HLA B 27 but I would like to. I have moderate to severe debility from tendonitis/muscle inflammation s/p injury to my knees and gastroc. The pain and inflammation does not go away with prednisone, and I am starting Remicade on Friday.
English,
Arthritis associated with bowel inflammation is the real deal at least in me, it has totally consumed my active life progression of my career. I hope the biologics are the answer for me. Been on prednisone a month with only moderate relief. Hope you find something that works for you. Keep us updated. Good luck.
Posted 9/9/2014 12:16 PM (GMT 0)
Hey there!! You SHOULD get the HLA B 27 test. its a high indicator for developing Ankylosing spondylitis and it also is associated with reactive arthritis and arthritis related to bowel inflammation.

At my last appointment he brought up enbrel and i do think i wanna start it but i think my insurance requires i try one of those DMARDS first. i see him in 9 days and i am gonna ask about it. im still in agony. i also had an instance when i found a engorged tick on my kitchen floor right when this about started but my lymes test was neg. one doctor thinks its lyme even my test was neg but i thought with my gene and everything else i has AS and god knows. i just hope i get better. i made a mistake of trying to workout yesterday and today i cant move at all. its hard adjusting to the pace of a snail !

good luck :) i had no luck on prednisone myself. it only made my face chubby. no relief in pain. i did have some relief in my shortness of breath as well as my muscle twitching though.

=]
Posted 9/9/2014 8:10 PM (GMT 0)
Fnfiacco,
Good luck to you too...I hope we can all achieve a state of well being.
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