What to do? In agony!

[Witchy789]

I have suffered from rheumatoid arthritis since I was 20 years old, so for 10+ years.

It has been quite bad at times and I’ve been on multiple courses of steroids and treatments over the years, but it went into remission about 2 years ago and I’ve not been on any treatment since.

Out of the blue, I’ve had 3 flare ups over the last 2 weeks. It’s now got to the point where my kneecaps are full of fluid, I can barely walk on one of my legs and I’m in agony with it - it’s waking me up at night and preventing me from sleeping, I was awake most of the night in tears because of the pain.

I can’t take steroids or ibuprofen because of stomach issues, I can only take 1 paracetamol at a time because I weigh under a certain amount, and hot and cold treatments are only taking a slight edge off.

I have a rheumatology appointment in 2 weeks time, but I honestly don’t know how I’m going to make it until then at this rate. I live alone, I have a child with a disability and additional needs who is now home for Easter, and I’m struggling to do anything - and that’s without now not sleeping because of being in agony!

I rang the rheumatology line to see if they had an appointment sooner, and no-one has got back to me, so I plan on ringing them again tomorrow and telling them how the pain has progressed.

If this isn’t successful, has anyone got any tips or advice on what to do next? I feel absolutely desperate for a solution!

I'm so sorry , that sounds awful.
Could your GP help ?
Maybe by contacting rheumatology on your behalf or suggesting a different pain relief,?
I didn't know that fluid on a joint was one of them symptoms of RA so that might need to be investigated.
Friend has fluid on knees due to psuedogout and iaspiration and steroid injection gave instant relief.
Keep ringing until you get a response

Gosh that sounds horrendous OP you poor thing. I know nothing about this but would acupuncture be an option? I believe it works for many people.
Failing that hot baths? Strong drink?

My rheumatology department will see you in emergencies without an appointment. I just turn up and say I need to see someone. I might have to wait but you'd probably benefit from a steroid injection.

In the meantime a bath with magnesium flakes and a heated throw might help.

I have RA and my knees get terribly swollen and painful. I find ice packs and topical voltarol cream helps. It won't affect your stomach. If you can get a private GP consult you could ask for eterocoxib tablets (arcoxia) which is a strong painkiller specially for RA and safe for your stomach. i have had less pain since starting methotrexate injections. They have to be prescribed by a rheumatologist.

Definitely ring the rheumatology helpline again tomorrow and stress how much pain you're in. You really should be seen asap and my department will see you straight away in an emergency. Failing that give your GP a call and see if they can help.
I hope you get something sorted - I know the pain is horrendous - fingers crossed for you 🤞

Can you share why you’ve advised etoricoxib is safe for the stomach ?

My rheumatologist assured me it is. I have had 3 gastric bleeds on prednisilone, can't take ibuprofen or naproxen, but am fine on arcoxia.

I have been on it for 2 years and find it reasonably effective.

Ibuprofen gel is apparently safe to use with stomach issues ds has massive gastro problems and everytime I take him intl they say HAVE YOU GIVEN HIM IBUPROFEN no just the gel as recommended by you...the last time I find it quite funny now I go in with him and before the Dr suggests anything I list everything we have done and ask for advice on next steps 😂

Pain relief gels will help and avoid stomach issues. If you dont get through on the phone I would try turning up and asking if someone could see you as an emergency

I only take it for acute flareups. Not constantly.

Sorry just seen it's an old post - hope you got everything sorted

Sorry I've just seen it's an old post - hopefully you've got everything sorted now