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Rheumatoid arthritis

charsue

hello

Well yesterday I was newly diagnosed with rheumatoid arthritis.
I was in crippling pain couldn’t walk get out the chair or even brush my own hair hoisptal as put me on 6 weeks of steroids till I start a once A week tablet and one daily tablet waiting for nurse to send me appointment it’s all very new to me and frightening I was wondering is there people on here that can relate to this any advise given would be much appreciated thank you x

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Freesia123

@charsue

Hi, sorry to hear you have been diagnosed with rheumatoid arthritis and that you have been in such a lot of pain. 😔 I hope the medication works for you.

I don't personally have rheumatoid, I have osteoarthritis but my late aunt did and I saw how it affected her.

Maybe take a look at some sites like these, I hope they help in some way x ………..

https://www.versusarthritis.org/about-arthritis/

https://rheumatoidarthritis.net/forums

mokki

https://forum.scope.org.uk/discussion/137495/rheumatoid-arthritis

Hi there,

Yes I have symptoms of RA also, I was actually referred to a specialist who only spoke to me over the phone, I had bloods take. Which showed a raised RH factor but the specialist decided, after a few rushed questions , that I didn’t have RA but had some arthritis present in my hands and feet (after an X-ray) I’ve since broke out in a rash all over my body pretty much which does happen with RA also.

So I agree, scary times as I also am completely incapacitated during flare ups.

charsue

https://forum.scope.org.uk/discussion/comment/1056738#Comment_1056738

thank you so much I will take a look x

yves

Hi Charsue,

I was diagnosed with RA in 2019 and it came on very fast. It started in my foot and within 3 months it had affected 20 joints. The steroids will help whilst you RA meds start to work. It can take a few months to for the RA meds to kick in, but they are definitely worth it. I have a weekly injection of methotrexate and 1 tablet daily of hydroxychlorlquine. Depending on what meds you get, also ask for folic acid as this helps with nausea. I have absolutely no side effects of my meds, but not everyone is the same. If you dont feel its working for you, do speak to your consultant as there are various meds out there. You will have to have regular blood tests, depending on what meds they start you on. Its just to keep a check on your RA levels, organs etc. I also had physiotherapy too, to help my joints and muscle loss due to not being mobile for months. RA meds are immunesuppresent"s, as with RA, its your immune system that is attacking your joints, not wear and tear. The meds suppress the immune system so it stops working basically. Its very overwhelming at first and theres a lot to take in but just take it one day at a time. Its a long journey but you will get there and feel better for it. If you have any questions, just ask.

charsue

I presented my self at AE as I did don’t what it was then found my self on a string of appointments

https://forum.scope.org.uk/discussion/comment/1056739#Comment_1056739

I presented my self at AE as I did not no what it was . And from there on a string of appointments till I got to see the consultant it might be worth you doing the same with your rash get a 2nd opinion I hope you get sorted the pain awfull I feel you x

charsue

https://forum.scope.org.uk/discussion/comment/1056743#Comment_1056743

thank you so much for taking time to write that the reassurance I got from from that was most welcoming thank you once again x

yves

No problem, im happy to help .

Billiegoat

Sorry to hear you have RA. I was diagnosed 2 years ago, a year and a half after it came on suddenly in what appeared to be overnight and couldn't walk and in dreadful pain all over.

It takes time to adjust. A long time. It takes a long time to learn about the condition.Sometimes I think to myself,

"no surely not, im just being lazy" but my legs are not lying or the intense exhsustion that comes on suddenly.

The steroids ive had to reduce high levels of inflammation quickly, but the best thing is to get your meds right. I've been plagued by low neutrophils preventing me from having any operation for osteoarthritis.

Think of it as a work in progress. It's been isolating because others will not understand and I'm sure I didn't understand before either. Everything changes, I get frustrated and angry A LOT! because other people look like they're getting on with their lives.

The positive is that I've slowed down and my stress levels are better because im not running around so my migraines which I had several days a week are now minimal. My relationship with my husband has improved, whenever minimises how I feel and i just started hydrotherapy.

Probably what's most frustrating are the constant wait for appointments and that department s at the hospital dont talk to each other. You have to manage your own case.

Hope you don't mind me writing so much but i don't know anyone with RA.

Hang in there x

charsue

hello billiecoat

No not at all am learning glad of anything you poor dear. You are going through it my nerves are through the roof with it all to be honest but am only a few days in I hope things get a lot easier for to you to come

Billiegoat

Well i wish you all the best charsue. Hopefully you'll get quick treatment and start to feel better soon because it can happen I know.

charsue

thank you chat anytime

tealhoneydew16

hi @charsue I too was diagnosed with RA after a fall on my wrist was broken I was in plaster cast working full time and whilst I was off work the pain of RA set in all over my shoulders to my toes excruciating pain… I was assessed at the doctors surgery had lots of bloods done and my gp at the time said the levels were very very high to indicate RA I was then referrred to a RA Consultant in Nov 2009 had to wait for the appointment (which whilst waiting for was the worst time of my pain levels brought on RA) I as then diagnosed at my first hospital visit in 2010 with Sero Positive Rheumatoid Arthritis. I at the time was 32 years of age & did not even know about RA and was very upset at the time but was given a high dose of steroids that day along with methotrexate and folic acid. I am now 15 years on my medications are Methotrexate Humira X2 fortnight injections co codamol I now only take 1 steroid which I can't not take as my flares start again. It's not easy at first to come to terms with but I'm quiet stabilised on my current meds 13 different ones along with the Humira Injections, please ask if somethings not right with your meds at your Consultant appointments as every person is different and each meds come with side affects that differ each person I'm still an outpatient at RA and have 3 monthly bloods at gp surgery to monitor as my meds are a lot, I was also then in 2016 diagnosed with secondary Fibromyalgia, then the next year Osteoperosis, so I have added meds since my first diagnosis in 2010 if you ever want to ask anything please do I'm here to help if I can also NRAS are good site I was referred to they have lots of information about RA and the effects. I wish you all the very best sending gentle hugs your way xx

charsue

thank you so much for your kind words I’ve been on steroids only a week swelling went down today it’s hurting and swelling is starting again is that normal please or should I go back gp why I wait for nurse to start me on the new medication please x

tealhoneydew16

your welcome I started on 6 steroids initially then they gradually reduced the dose I now currently take 1 steroid at 2.5 mg which I won't ever stop as it's back to square one. If you are waiting for a referral to the Consultant Rheumatologist at the hospital, I would ask for more steroids (if you just had a week course) or ask for naproxen that's what I was given although it didn't touch the sides until I got diagnosed…… but everyone is different when it comes to medications and side effects I hope you get your hospital appointment very soon it's awful that waiting time in between p…. I know and remember the pain, good luck.

charsue

thank you I have been diagnosed just waiting on a hoisptal nurse appointment for this once a week tablet and one daily tablet they gave me 6 weeks steroid’s reducing one tablet a week

Otteline

I'm not sure how old you are but the good news is that the treatment for RA has improved greatly. I was diagnosed 37 years ago and have been lucky to be under consultant care for all of that time (mainly due to other health conditions). Have a look at the Versus Arthritis site, they are a great society with a good helpline. Every case is different and people are affected in different ways.

After going through many many different drug regimes, I'm now well controlled on 6 monthly biologic (Rituximab) infusions along with methotrexate injections, anti-inflammatories and pain-killers. I have been on Humira and different biosimilars before I finally got to this place. Biologics help reduce inflammation and slow the progress of arthritis, so I think the key is getting the right drugs. I believe it is more difficult nowadays to get the referral to the right specialty. I went through orthopaedics to start with so ended up in Rheumatology in a roundabout way.

Unfortunately I developed OA in both knees and I'm about to have my first knee replacement which hopefully will help my mobility. Good luck, the pain can be debilatating and at times I would gladly have chopped off my hands 😔but once you get the right treatment there is light at the end of the tunnel.

I have taken advantage of all offers of NHS help (courses and suchlike) and you can develop coping mechanisms. There is quite a lot of help available if you know where to look. Like others I am happy to answer any questions.

First rule is to pace yourself! When you get a bit of respite from the pain it's easy to try and do everything in that little pocket of wellness. That's a mistake so please rest when you need to.

tealhoneydew16

Yes this is the problems faced until you are stable on any future meds or treatments that suit you, I had to try many different treatments before being on my current regime which although I'm stable for the meds front it's a sad reality with RA that's it's so complicated and misunderstood that I found it hard at first like the poster says above there are more treatments now than when I was first diagnosed in 2010 it's worth having a read on some of the RA charities and websites I found National Rheumatoid Arthritis Society (NRAS) a great help for reading what's about to happen with your appointments going forward and how to manage unfortunately your at the point now where it's the unknown when it comes to waiting for Hospital Consultant to see you. I hope you get seen very soon, and I wish you all the best and sending gentle hugs your way.

charsue

thank you very much for your kind words x

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