Reactive arthritis - does anyone have it?

rosiemay

Hello,

My boyfriend has just been diagnosed with reactive arthritis. He is very young (20's) and otherwise healthy and is finding the experience very hard. His symptoms are very severe - so much so that he was in hospital for 12 days while they determined a diagnosis. He has gone from being very fit, muscular and active to very weak and unable to do anything without getting exhausted.

It all started with pain and inflammation in his knees and a visit to A & E. At first they suspected gout, then septic arthritis. An aspiration of fluid from his knee came back clear, as did most of his tests, which ruled out gout and SA. The redness and swelling then spread to his ankles, toes, back, wrist and fingers, and levels of inflammation in his blood continued to rise. He had multiple blood tests, cultures, swabs, and MRIs and X-rays and the eventual diagnosis was reactive arthritis, most likely caused by a bowel infection (he had one about a week before hospital admission.) He was then discharged (two weeks ago now) with steroids, naproxen, omeprazole and paracetamol/co-codamol for the pain.

Day to day he is dealing with so much - all of this medication is very strong on his stomach, and his pain is very bad in the mornings and the evenings. He has lost weight and is very low. Some days he seems to be on the mend, and others he is very bad again. I know recovery is a long process - I wish there was more I could do to help, and that we had been given more information by the hospital/consultants! He lives in fear that this will get worse, and has been promised a follow-up appointment, which the doctors forgot to book in.

Does anybody deal with this condition that could offer me some advice on managing the emotional and physical aspects of it? Are there supplements he could take - omega 3, turmeric - to help, or does anybody have a similar story that I could share with him? He feels very alone and finds it difficult to talk about these things - I know he is unlikely to reach out for help himself, which is why I have posted on this forum.

Thanks in advance!

[Deleted User]

Dear Rosiemay, welcome to Arthritis Care Forums.

As mods we are here to help with any problems you may have using the forums.

Please click on the following link to see our factsheet on caring for someone with arthritis, https://www.arthritiscare.org.uk/emotional-wellbeing-and-arthritis/your-relationships

Please also click on the following link to see our factsheet on reactive arthritis, https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/236-reactive-arthritis

I hope the factsheet helps but, if you need more specific information, you can always contact our Helpline at: https://www.arthritiscare.org.uk/help-and-support/helpline

In addition to the above, there are many lovely people who use the forums with a wide range of experiences. Have a good look through the different forums and pick the ones you feel are best for the information you seek.

Best wishes,

ModEm

stickywicket

Rosiemay, your poor boyfriend has one really good thing going for him - you. What a kind, thoughtful, caring post!

I don't have ReA. Mine is RA but the effects are very similar. He will, indeed, feel as if he's been knocked for six and this will be doubly hard on him if, formerly, he was very fit and strong. To be honest, I think being a bloke doesn't help either. They almost feel under an obligation to be strong and aren't good at sharing negative feelings.

The medication he's been given shouldn't be too harsh on the stomach. The omeprazole is prescribed to help with that. If it is still giving him stomach ache he should maybe go back to his GP who might change something. One tip - I take all medication with a small amount of food, apart from my omeprazole which I take on an empty stomach.

I suggest he keeps away from supplements while things are so bad but, if he does want to take anything, he should always check with his GP or pharmacist first to ensure it won't make things worse and / or react with one of his prescribed meds.

How is he now? And, how are you? Watching those we care for suffering is very hard on the emotions.

oliviaalicerose

Hi

I can't believe how similar this story is to my own. I am 24 - young, fit and healthy. I am in the gym 6 times a week, I don't smoke rarely drink I eat well. I live a fulfilled and active lifestyle!

At the beginning of May I got sudden extreme pain in my knee out of the blue. It started to spread upwards to my hip. I went to docs twice and they sent me home! I ended up being taken via ambulance to A&E and I got admitted onto a ward for 2 weeks. They aspirated my knee twice and opened my hip and took fluid from there. They said all the same things to me as your boyfriend - they were worried about infection first and foremost. I was kept in for 2 weeks on an antibiotic drip whilst being tested for every kind of infection. I had none! I had a feeling the full time I was in there that I was being looked after by the wrong department.

Finally rheumatology came to see me and discharged me with steroids and tramadol etc. I have really struggled with the medication. It has not really brought down the swelling in my leg and the side effects from the tablets are awful.

I was referred to see a specialist rheumatologist who I finally saw last night after a long wait! She diagnosed me with reactive inflammatory arthritis. She thinks I have a defective gene (B27) and that I was always predisposed to this condition. I had a cold a few weeks before the attack which they think brought it on.

They gave me a steroid injection to reduce the swelling and im now going to be on methotrexate for life which will try to control the condition. Before this happened to me I thought arthritis was for older people! I know that is a massively naive thing to say but I was so in the dark. When they mentioned arthritis I thought surely not! But as Ive learnt more it turns out its an autoimmune disease - nothing to do with age, physical fitness etc.

I have found it really hard to come to terms with. I am too unable to keep weight on. The medication has got me down. But seeing the specialist has reassured me so much. It sounds like your boyfriend needs to see someone who is a specialist in the area. The steroids are only a temporary measure which reduce the inflammation in the short term! Perhaps he needs to be on a more long term medication like I am. It doesn't have any of the nasty side effects that steroids do and it gets on with most people.

I would go and see the GP and explain that he needs a referral to be seen. Otherwise it will likely keep flaring up again and again!

Good luck with your journey.. I know how hard my boyfriend has found it seeing me in this state but from my experience I know he will be so grateful that you are there for him.

[Deleted User]

Hi oliviaalicerose and welcome to the forums. This thread is over a year old now and the original poster hasn’t returned to the forum.

Sorry to hear of your reactive arthritis - as you point out, age has nothing to do with this disease :?

The web site holds a fact sheet on inflammatory arthritis which can be downloaded here: https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/236-reactive-arthritis

The site also holds lots of good information & advice if you need it. Do join in on the forums & let us know how you get on.

All best wishes
Brynmor

Dlu

oliviaalicerose wrote:

Hi

I can't believe how similar this story is to my own. I am 24 - young, fit and healthy. I am in the gym 6 times a week, I don't smoke rarely drink I eat well. I live a fulfilled and active lifestyle!

At the beginning of May I got sudden extreme pain in my knee out of the blue. It started to spread upwards to my hip. I went to docs twice and they sent me home! I ended up being taken via ambulance to A&E and I got admitted onto a ward for 2 weeks. They aspirated my knee twice and opened my hip and took fluid from there. They said all the same things to me as your boyfriend - they were worried about infection first and foremost. I was kept in for 2 weeks on an antibiotic drip whilst being tested for every kind of infection. I had none! I had a feeling the full time I was in there that I was being looked after by the wrong department.

Finally rheumatology came to see me and discharged me with steroids and tramadol etc. I have really struggled with the medication. It has not really brought down the swelling in my leg and the side effects from the tablets are awful.

I was referred to see a specialist rheumatologist who I finally saw last night after a long wait! She diagnosed me with reactive inflammatory arthritis. She thinks I have a defective gene (B27) and that I was always predisposed to this condition. I had a cold a few weeks before the attack which they think brought it on.

They gave me a steroid injection to reduce the swelling and im now going to be on methotrexate for life which will try to control the condition. Before this happened to me I thought arthritis was for older people! I know that is a massively naive thing to say but I was so in the dark. When they mentioned arthritis I thought surely not! But as Ive learnt more it turns out its an autoimmune disease - nothing to do with age, physical fitness etc.

I have found it really hard to come to terms with. I am too unable to keep weight on. The medication has got me down. But seeing the specialist has reassured me so much. It sounds like your boyfriend needs to see someone who is a specialist in the area. The steroids are only a temporary measure which reduce the inflammation in the short term! Perhaps he needs to be on a more long term medication like I am. It doesn't have any of the nasty side effects that steroids do and it gets on with most people.

I would go and see the GP and explain that he needs a referral to be seen. Otherwise it will likely keep flaring up again and again!

Good luck with your journey.. I know how hard my boyfriend has found it seeing me in this state but from my experience I know he will be so grateful that you are there for him.