Reactive arthritis

Emmasknackeredjoints

Just wondering if anyone has been diagnosed with reactive arthritis and how your condition has evolved.

Been told don't worry it self resolves after 3 months but I'm 3.5 yrs in so it's so frustrating hearing that nonsense. The stigma of this condition is also frustrating as its linked to UTIs and STIs which in 2020 its more likey I developed its after having covid.

There is no help as medical staff either don't know much about it or to arrogant and can't be bothered to talk as " there are worse kinds of arthritis "

All very upsetting as I've lost near enough everything as a result . Including almost losing my home.

Life really is kicking the stuffing out of me.

Sorry for the depressing moan . Just be nice to hear someone else's story.

Thank u

Woofy

Hi there. Sorry I don’t know about your condition. I just wanted to say hang in there. Hopefully someone on here might be able to advise. Take care.

Emmasknackeredjoints

@Woofy thank you.

I'm happy to have advice from anyone really, especially inflammatory arthritis.

I think all forms of arthritis have similar issues for us .

jamieA

Hi @Emmasknackeredjoints

I wonder if you could ask to be referred to another rheumatologist for a 2nd opinion.

I was diagnosed with psoriatic arthritis in October 2020 after - according to a covid consultant - probably having had covid in March 2020. The PsA diagnosis at the time seemed to be based solely on a severely swollen left knee and inability to close my hands as well as the fact I had psoriasis. There was - and is - no concrete test to prove the diagnosis. After the PsA diagnosis I was admitted to hospital 5 times in 7 months for pneumonia and a heart condition as well as the PsA - all 3 were linked to covid as a possible source by consultants I saw. The hospital I was admitted to wasn't where my rheumatologist worked so I was seen by multiple rheumatologists during my month and a half of admissions. There were suggestions I had polymyalgia rheumatica, ankylosing spondylitis, osteoarthritis and even gout by the various rheumatologists I saw.

I spent my working life as an engineer - dealing in facts and absolutes - so it's never sat easily with me that there's no exact, defined test for what's wrong with me. I've since read quite a bit on the subject of arthritis and with well over one hundred different forms I can now maybe understand where incorrect diagnoses come from. The treatment side also seems to not be an exact science.

My initial rheumatologist was arrogant and dismissive so I wrote a letter to him saying if he wasn't prepared to help me I wanted referred to a different rhematologist. I also contacted my GP and made the same request. I'm now with a different rheumatologist who listens to me and is far more proactive in my treatment.

I hope you get help soon.

Emmasknackeredjoints

Thank you @jamieA . Unfortunately this is my 3rd rheumatologist already.

The 1st nhs rheumatologist took me off the steriods the gp had me on ( and the only drug which was helping) and told me it's reactive arthritis you will be fully recovered in 6 weeks, despite being in more pain when off steriods.

He then left me struggling and worsening for months, refusing to see me , didn't do any bloods, gave me wrong dx of my knee and didn't tell me I had hip dysplasia. Basically a total incompetent idiot.

I went private and she told me I didn't have a rheumatology issues and it was all orthopaedic, also told me there's to much to read and she would give me a copy of my report to read myself. When I did read it she failed to spot the fluid in spine , sacroiliac effusion and enthesitis in knees.

Long behold 2 weeks later I'm bedbound with a massive attack of bilateral knee pain, warm to touch , feeling of being crushed with a heavy brick, and pulled into a tight hold I can't realise for hrs ( anyone else had this?) I feel I get looked at like I'm making it up when I tell doctors.

This 3rd rheumatologist thinks seronegative, reactive arthritis but only bloods and nothing else. This is the same nhs hospital as the 1st rheumatologist where I complained to PALS so I feel it definitely has a negative impact on me.

What a nightmare rheumatology is. Wish a had a condition which was 1 test, boom there's the answer let's fix it.

stickywicket

"Wish a had a condition which was 1 test, boom there's the answer let's fix it."

Mm, I like the sound of that😁 Sign me up. Unfortunately, arthritis just isn't like that whatever kind we have and ReA can be a bit awkward. It can, in fact, over time, morph into an inflammatory arthritis. Have a read here

https://versusarthritis.org/about-arthritis/conditions/reactive-arthritis/

I would guess that, if this has happened with you, complicating factors might be;

1. maybe the spinal fluid and enthesitis might indicate a seró-negative type - harder to diagnose.
2. as I understand it (possibly wrongly) the hip dysplasia is unconnected and might therefore lead docs to conclude OA rather than RA or other inflammatory forms.

I'd suggest you read up as much as you can on ReA - from reliable sources only eg V.A. and NHS, not anecdotal stuff - annd formulate some questions for your next appt.

Good luck.

Emmasknackeredjoints

@stickywicket unfortunately there is very little known about reactive arthritis so there is next to little info on it. Same paragraph everywhere about chlamydia UTI or bowel infection. This information is so out dated.

I only read medical journals really as even the nhs has basic info. But very little is known. Mayb if I could spring into the yr 3000 id find answers lol

As for hip dysplasia thats nothing to do with inflammatory arthritis your right, but to not even be told I had it was ridiculous, it also took their attention away from inflammatory arthritis and more ortho . When in deed it turns out the inflammatory arthritis made the ortho condition worse. ( can't walk=loss of muscle strength + limping on on dysplastic hip = subluxted hip and labral tear , not a good mix)

Some of these doctors can not truly think well at all. No common sense or compassion, just tick boxes and write something different to what they say

Well that's my moan for the day over, time for yummy lunch. Lol 😆

How's your day going , up to anything fun

stickywicket

Nope, nothing fun. Just essentials. Aided by Classic fm plus the prospect of a (I'm an optimist) Leeds Utd win tomorrow.

So, here's what Johns Hopkins says about ReA. Much the same as VA and NHS really but they arè my go to site on medical matters and, for me, what they don't tell you is almost certainly unknown. https://www.hopkinsmedicine.org/health/conditions-and-diseases/arthritis/reactive-arthritis#:~:text=Reactive%20arthritis%20is%20a%20type,Reactive%20arthritis%20is%20not%20contagious.

Mind you, it's a US site so I doubt anyone here gets all those tests. Remember Americans pay for them.

Lorraine_24

Hello @Emmasknackeredjoints

Just thought I'd say hello, I'm on here as I've osteoarthritis in most my joints, one hip replacement in June and having second in a couple of weeks, but my 26 year old son has been diagnosed with reactive arthritis, he was on holiday in June, got food poisoning and the bacteria from that has caused the reactive arthritis, he spent a month in hospital, was on steroids now on methotrexate which is making him so sick and I can't see any improvement in him at all, like yourself we were told it should go away within 3 months, but if anything it's getting worse, I'm struggling to find someone who specialises in reactive arthritis , nobody seems to be able to give us proper information, we just get told take the medication and "SHOULD " get better, it's heartbreaking looking at him being this way, and as someone whom is riddled with arthritis I wouldn't wish it on anyone, so your not alone in frustration with medics not being very helpful and just told to get on with it

Emmasknackeredjoints

Hi @Lorraine_24

Apologies for the delay I've not been on here much .

How upsetting to hear of your son, on dealing with reactive arthritis. It's a horrible and very frustrating type of joint pain as there is no up to date medical information, every doctor seems to be reading the same textbooks that were written in 1960. ( slightly rude but I'm.sure you know where I'm coming from)

As a result of this, "it will self resolve in 3 months " i dont feel the condition is taken seriously at all.

I'm glad he has methotrexate after 3 months. Wow that's better than I had, I waited over 2 yrs to be started on sulfazalazine, despite steriods being the only drug which helped me. I kept getting fobbed of as knee injury! When there was no trauma at all.

I would say that painkillers were needed plus the DMARDS to achieve some relief. I had to find out myself as health care staff have not helped me much . One nurse laughed in my face , another said its only reactive arthritis it will resolve in 3 months ( at this point I was maybe 2.5 yrs in)

For now I'm on biologics and seems to getting relief, the drug is called adalimumab. Perhaps your son can ask about this when he next see the rheumatologist. There are risks to the drug but so does methotrexate.

I hope he recovers soon ..I wouldn't wish this on anyone.

Keep in touch with his progress

Em

Lorraine_24

Thank for your reply @Emmasknackeredjoints will mention that medication to consultant when he next sees him and let you know how he gets on

Lorraine

Pithy_username

Hi @Emmasknackeredjoints - I feel your frustration over the reactive arthritis diagnosis. I was given the same diagnosis in 2021, about a year after catching Covid. I had intense fatigue, hot and swollen joints, whole-body pain, brain fog and decreased mobility. Also chronic low grade fevers, palpitations etc. Long covid was emerging as a condition at the time and I was lucky enough to be referred to the new long covid clinic at UCLH. I happened to mention to the rheumatologist in charge that I’d had similar fatigue / joint pain symptoms over 30 years previously after catching glandular fever. At the time it was diagnosed as sero-negative arthritis with post-viral fatigue syndrome and treated with hydroxychloroquine and NSAIDs. After about 3 years, the symptoms gradually faded away. Sometimes I’d get a flare of joint pain if I caught a cold or other virus, but it mostly went away until Covid brought it all back with a vengeance. She tested me for the HLA-B27 gene variant, which is an indicator of the potential for reactive arthritis, and it was positive. I went back on hydroxychloroquine, which helped somewhat. I was so fatigued and debilitated that I had to give up work, but I’m relieved to say that the symptoms have all significantly abated in the past 3 months and I’m off the DMARDs and starting to work again. So unfortunately my experience suggests it’s more like 3 years that 6 weeks - but it does eventually get a lot better, even the second time around! I really hope you find some relief.

Emmasknackeredjoints

@markcass

Emmasknackeredjoints

@Lorraine_24 hi there how are you getting on with your THR. are you coping well

How's your son getting on, is he feeling any better

mosborn11

I'm so sad to hear about yours and lots of other people's experiences with the condition being dismissed. You always have the right to request a different doctor if you feel you're not being listened to <3

Before being referred to the consultant, my GP was like this, not even sure if it was 'worth a referral' as it would probably 'go away on it's own'. In reality, 4 months later, working with the consultant we're still not 100% sure if it's Rheumatoid or Reactive, but she has told me it's probably going to last a minimum of 3 years (if it isn't Rheumatoid). My consultant also told me that for Reactive arthritis that doesn't go away, inflammatory arthritis, rheumatoid etc it can all be treated by similar drugs and it's just about finding a drug that works for you.

I think when your blood work doesn't show anything crucial or clear, it can be a wait and see approach, but that doesn't mean anyone should be left in pain or dismissed etc. It seems to me that even the 'experts' aren't crystal clear on what causes these conditions, and sometimes even the distinctions between all the conditions.

Lorraine_24

Hi @Emmasknackeredjoints

My hip replacement got cancelled because my vitamin d levels were too low having done 1st march hopefully please god 🙏, no my son isn't getting better at all ,he was back with consultant last week took him off methotrexate said it wasn't working ( could have told him that months ago) also causing issues with his liver so put him back on steroids and giving his liver a break for a month before starting him on sulfasalazine, I am absolutely heart broken looking at him this way and knowing what he's going through, the lack of knowledge with reactive arthritis is ridiculous, doctors and consultant's all saying nothing really of any use except it should get better need to find right medication while I understand that I feel stuck I don't know where to turn for help for him because nobody in my opinion is actually listening, we're just another name and number in the system, I can only hope and pray the next lot of medication helps and until I get myself sorted I'm kinda stuck, also if I had my own mobility back, I'd be in a better position to help him and seek medical help further a field, hope you're doing ok at moment and thanks it's nice to speak to someone who knows exactly how my son is feeling and all the horrendous things that come hand in hand with reactive arthritis

Lorraine

Emmasknackeredjoints

@Lorraine_24 hi. How did your hip surgery go. Feeling better? Hope you get some relief finally.

Did your son start sulfazalazine? Any improvement?

Beest wishes

Lorraine_24

Hi @Emmasknackeredjoints , finally had my other hip replacement 3 weeks ago doing well thankfully, glad at long last to have them both done, yes he's started it a few months ago no improvement whatsoever in him, it's causing issues with his liver and they said he needs to come off it and try something else, currently waiting on appointment from consultant for this to happen, it will be coming up to a year soon that he got reactive arthritis and feeling devastated for him watching the way he is suffering, may I ask do you know of a reactive arthritis specialist ? I've been looking everywhere and can't find anyone who has any proper knowledge about his condition it's so frustrating because I honestly believe if they can find right combination of meds he would start to improve, and any improvement at all would be just fantastic, hoping and praying they will come up with something to help him soon

Best wishes

Lorraine

Emmasknackeredjoints

@Lorraine_24 glad you got it done and can recover. Great news

Emmasknackeredjoints

@marouko86

NSG2023

After my mum has a nasty chest infection and cold, her hands/wrists, both hands were swollen big time she could hardly use a spoon or fork, she couldn't lift the milk to pour it or make a cuppa. She was diagnosed with reactive arthritis, although it took several doctors and even A&E visits but she was finally referred to rumertology via A&E. She has spent the last 3 months not being able to work and on steroids every few weeks they reduced her dosage, she still has to take them for another 2months.

Most doctors don't understand reactive arthritis and its normally started due to other issues, it was only when she was referred to rumertology she started getting the right help and information.

Emmasknackeredjoints

@NSG2023

Yes it is very painful but even rheumatologist do not understand. I've seen 4 of them.

Hopefully the steriod work and there is no need to start other long term medication

shirmarsh

https://community.versusarthritis.org/discussion/comment/715930#Comment_715930

Hi @Emmasknackeredjoints - I completely understand your frustration with the reactive arthritis diagnosis. I experienced something similar after Covid in 2021, and it took about three years for my symptoms to significantly improve with the help of[xxx]. I hope you find relief soon—hang in there!

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