Possible rheumatoid arthritis, awaiting first rheumatology app

Possible rheumatoid arthritis, awaiting first rheumatology app

hi all, about 3 years ago I started suffering with pain in both hands ,they went red and hot, this continued for a long time and I was back and forth to the docs, after numerous visits, blood tests I had a colonoscopy which showed crohns disease, treated started but the hand pain continued over time both my ankles , both my knees ( and now I'm limping), both shoulders , wrists, elbows etc started to hurt but no swellings docs kept on saying its crohns related as my r a facter test was negative and so was the crb levels, I have always had elevated white cells for past 7 years and increasing every year, last result being 15., but know I'm swelling on numerous joints, have heat spots, tiredness and i have lost flexibility in some joints, I find walking up/ down stairs difficult, using my hands to rinse clothes is painful and I'm forever dropping things, and I'm only 34 years old, for joint pain in on naproxen 1000mg, paracetamol, nothing seems to work, the prednisone which I was on for a year helped alittle but as soon as I was tempered off the pain is back, what do you guys/ girls think? Do you think its r a ?, and that I need stronger meds?

17 Replies

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  • I was diagnosed with RA in 1987 aged 36. I'm 66 now. My first symptoms started in my wrists and ankles. I could only get upstairs by dragging myself up by my elbows, then sitting on the top step to shuffle back down again on my bottom. At its worst, my ESR was 87 My RA factor was negative until 2015, positive now. I suspect that when you have been seen by a Rheumatologist you will be started on better drugs that should help whatever they will diagnose you with. There are lots of condition as well as RA which could cause your symptoms, I hope you get some answers soon.

  • I would push your GP for a referral to a rheumatologist to find out if it is RA or another inflammatory arthritis. If the swelling is left unchecked, regardless of whether you have RA or not, you could end up with permanent joint damage. I've had RA since 14 and I've never had a RF.

  • did you get an easy diagnosis with no rheumatoid factor?

  • I was 14 (and it was 21 years ago) so I was admitted to the hospital and got diagnosed pretty quickly. I was on the children's ward for 3 weeks and was then moved to the adult's rheumatology ward at a different hospital for 4 weeks.

  • My disease progression sounds very similar and I have a diagnosis of seronegative RA or another connective tissue disorder... Straight onto methotrexate.... Yes- push for a referral- my GP was slow but I kept pushing. You need to be with the experts!!!

    Good luck xx

  • thanks fusedesigns, hopefully I will start getting sorted soon, how did you find it on methotrexate?

  • Whoops sent too soon- fat fingers!!! Not as bad as feared- took it at night after big meal, slept through with wild dreams- fairly hot and achey/flulike but didnt throw up which was my main worry and felt reasonable by second day. The dose has increased and I feel more tired and nauseous through the week but it's not dreadful and I am handling it. I take it Sunday night and get a friend to take the kids to school on Monday and just sleep for a day then I can handle the rest of the week... Really hoping it all becomes less onerous soon. I think some of my joints (knees and hands are starting to feel a bit better (yay) still v tired but hard to know if that's the disease or the drugs!!! Does that help at all? Everyone is so different as is their response to drugs. I am not used to pharmalogical stuff- have always gone down a more natural route, diet acupuncture etc, but this thing has taken hold and I can't risk joint damage - too much to do!!! Have a good day- I'll be sleeping! Xxx

  • Many people with crohn's disease develop enteropathic arthritis, which can look and feel just like rheumatoid arthritis. The fact that prednisone helped with the pain would suggest high probability of inflammatory arthritis.

    Of course it's also possible to have crohn's and RA (and other autoimmune diseases), and it's also possible to have RA with negative blood tests.

    Your rheumatologist will know what to do, but don't expect all the answers on your first visit - they take their time.

    One thing, I'm sure you already know this, crohn's patients need to be careful with naproxen. Are you taking omeprazole with it?

  • hiya, when you say prednisone helped and it sounds strong possibility of inflammatory arthritis do you mean r a?, it took a Long time to work, had to go up to 40mg , then reduced slowly , I was fine at 20mg but any lower pain would return, docters took me off it in the end because they said the pain isn't crohns related and probably an infection as I had high white blood cells of 15, does That sound high to you?

  • Hi. There are lots of different kinds of inflammatory arthritis. RA is one of them. The treatment is generally the same.

    One of the ways some rheumatologists can tell if there is inflammation, in the absence of positive blood tests, is by gauging your response to steroids.

    However, no two people are the same so this has to be looked at in a much wider context. It's something to discuss with your rheumatologist. When do you see them?

    I'm afraid I'm not qualified to comment on your white blood cell count - I'd have no idea.

    Lots of luck!

  • April 5th, think I'm abit nervous about it all, its took 3 years of pain and going back and forth to the docs , trying different meds, and I'm abit scared the damage has all ready been done, but I bet most of us have been through this whole process before diagnosis

  • thanks all for your answers, yes I'm taking ratidine and omprezole at the moment, my first rheumatoid appointment is 5th April and it cant come sooner, I have weakness also, especially my knees and arms , which takes me ages to go up stairs and feels like alot of effort, I used to be a strong active person , now sometimes it hurts to lift my arms to brush my hair etc etc, when you say inflammatory arthritis do you mean like r a?, thanks again for your help it means alot

  • I also cant lean on my hands to push myself into bed as it hurts my wrists/hands, I think I've got to the point where I think it is r a

  • I have the same problem can't lean on my hands/wrists to push up too painful and taking 3 DMARDS. Have an appointment tomorrow with Rhuematology.

    Ranitidine and omeprazole help prevent gastric problems and do the same job. Shouldn't be on both Need to check with GP.

  • hiya, gp put me on ratidine first , then added omprezole afterwards as I was still having problems with reflux, yes its a right mission getting into/ out off bed have to shuffle my body out lol, I have issues raising my leg onto the other to put shoes on, my leg just stops and I have to move it with my hands

  • Satiny pyjamas makes turning and shimmying out of bed a blooming sight easier for me

    J

  • Well I was dreading it to be honest - my life felt challenging enough without side effects to deal with, so I put it off for a while( my mum was really ill in hospital, and I'm a single mum with two young children), but I tookbthe plunge 6 weeks ago

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