Possible rheumatoid arthritis, awaiting first rheumatology app

[lou2891]

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?

[Hidden]

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.

[ruth_p]

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.

[lou2891 in reply to ruth_p]

did you get an easy diagnosis with no rheumatoid factor?

[ruth_p in reply to lou2891]

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.

[fusedesigns in reply to lou2891]

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

[lou2891 in reply to fusedesigns]

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

[fusedesigns in reply to lou2891]

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

[lou2891]

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

[lou2891]

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

[lou2891]

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?

[lou2891]

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

[Matilda_1922]

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.

[lou2891 in reply to Matilda_1922]

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

[Gnarli in reply to lou2891]

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

J

[fusedesigns]

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

[Rachfaul]

Hi Lou, sounds like we're at a similar point. I've been seen by rheumatologist and had a few tests. Got follow up appt on wed but spoke to consultant who diagnosed inflammatory arthritis, no rheumatoid factor in blood test. Plan is to discuss starting medication on wed. Hope you manage to get some answers xx

[lou2891 in reply to Rachfaul]

hi rachfaul, did they say what form of inflammatory arthritis?, I seen my rheumatoid doctor yesterday and thinking crohns/ inflammatory arthritis , no change in med yet for me, hand xrays done on my feet, hands and chest and more blood work, upto yet all my bloods are negative, have you had any positive tests?, how did your doc decide inflammatory arthritis and how long dud it take him?, hows your new med doing?

[Rachfaul in reply to lou2891]

Hi, I've now been given a diagnosis of psoriatic arthritis (I don't have psoriasis but my dad did). My blood test show no rheumatoid factor but increased inflammatory markers-CRP is 24. Ultrasound also showed inflammation in hands and wrists so that's what they used to give diagnosis. I had a steroid injection last wed but it doesn't seem to have done anything as no change in swelling/pain. Got another appt at the end of April to be started on Sulfasalazine.

Are they seeing you again once they've done more tests?

[lou2891 in reply to Rachfaul]

it all takes time don't it, their seeing me again in 6 weeks time hopefully my xray, scan results will show something.there's nothing worse than not knowing and thinking its all in my head and people think that your a hypochondriac, just want some sort of proff