New diagnosis - struggling to find support

Vee123

Morning folks :)

My partner (50) has just been diagnosed with ‘seronegative polyarthritis’. He underwent tests for rheumatoid but all negative. He has flare-ups every couple of months, including: random swollen hot painful joints (could be shoulder, pinkie finger (!), ankle, wrist) and a distinctive rash - raised round bumps like hives all over his torso and arms. During these he is exhausted, drained and struggles with life.

I am a healthcare professional (no experience with this) and I feel like we’ve been overlooked and ignored. A private rheumatologist started him on sulfasalazine which we’ve tried twice and had to give up on. The side effects were intense, fevers (with actual high temperatures), rigors/shaking, fatigue and abdominal pain. I pushed him to persevere and try a second time but he had identical side-effects and he just can’t. I called 111 as I understand serious but rare reactions can occur but they were not in the least interested. His bloods after 2 weeks were ok.

Back to square one and now offered methotrexate. Partner is understandably nervous about another drug, but I don’t see any other option?

I also feel that the diagnosis is a bit of a cop-out - seronegative arthritis just says ‘bloods are negative but he’s definitely swollen/sore’ rather than an actual cause? I would love to hear from anyone with this specific ’diagnosis’.

We are really concerned and feel that nobody else cares. It’s affecting his mental health and I’m so worried. He used to run marathons, hike and cycle and now he can hardly walk sometimes.

Thank you for reading my anxious brain dump xxx

noddingtonpete

Hello @Vee123 and welcome to the Community. We are a friendly and supportive group so you are among people who care now.

I understand that your partner has been prescribed Methotrexate - have a look at the following information which might help.

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

and the following story might help

https://www.versusarthritis.org/news/2020/december/self-care-and-finding-a-passion-candice-s-story/

I don't take methotrexate myself but a lot of our members do, see some of the discussions on here (try searching the community with the magnifying glass at the top).

Please keep posting and let us know how it is progressing and hopefully the medication will make improvements soon.

With best wishes,

Peter (moderator)

stickywicket

It's hard. When things are tough we all want a nice, clear diagnosis and meds that will sort it. It's not that simple with inflammatory forms of arthritis. Some are sero-positive - RA usually, but not always is: some are sero-negative - PsA is one. Many people live for years with a broad diagnosis such as your partner's. Occasionally, something happens to make it clearer. The good thing is that the meds are the same.

If your partner has had a bad experience with sulfasalazine I can understand his reluctance to take another DMARD but, really, the dangers of an untreated inflammatory arthritis can put DMARD side-effects in the shade and there's no saying a different one will affect him for the worse. I've been on methotrexate and hydroxychloroquine for years and they've made a huge difference. (Original diagnosis Stills Disease but it morphed into RA.)

I suggest you take photos of the rash and any swelling to show to your consultant next time. It might be worth checking out Lyme Disease which can be mistaken for inflammatory arthritis. https://www.gov.uk/government/publications/lyme-disease-signs-and-symptoms/lyme-disease-signs-and-symptoms

I don't know if any of this will help https://www.versusarthritis.org/about-arthritis/ but do keep asking questions and we'll try.

(Really, not a 'brain dump'😀)