Newbie

[55MC]

Just been formally diagnosed with RA and Just joined this site to help me understand my condition. I haven't even started the Methetrexate yet. I thought last week that I was experiencing a mild flare, however getting worse as each day goes by. My feet and hands are affected mainly, together with feeling exhausted. However the weekend has started with pain at my jawbone?? My teeth are ok and had my hearing checked, so can only assume it is connected? Anyone else experience this?

[EmmaS-NRAS NRAS]

Dear 55MC,

Sorry to hear about your recent diagnosis but pleased that you have found the NRAS HU community - you will find lots of useful information from others on here. Hopefully you will get started on the Methotrexate soon and it will start to work for you. In the meantime, NRAS has a section on its website about RA and the jaw which you may find helpful. nras.org.uk/jaw-problems

If you have any other concerns, don't forget the NRAS Helpline can be contact on freephone 0800 298 7650 or email [e-mail]

Kind regards

EmmaS-NRAS

[55MC in reply to EmmaS-NRAS]

Thank you Emma. Reassured (or resigned), that it is the RA. Have a lot to learn about how this manifests itself and will certainly be using the NRAS website more.

Margaret

[nomoreheels]

Hiya Margaret & welcome. I'm sorry you've had need to join but be assured you'll find us a helpful, caring & friendly lot who'll help you understand any aspect of the disease through our own experiences.

I hope that MTX works as well for you as it has for me. I've been on it 7 years, 6 of those by injection & diagnosed 8 years ago seropositive, along with OA. It does take a good few weeks to notice changes on MTX but by 12 weeks or thereabouts you should see some improvement.

I've fortunately not had trouble with RD affecting my jaw (RD = Rheumatoid Disease.... some of us choose to call it this rather than RA, it's a common misconception that RA is the same as OA) but others here have so I'm sure someone will be along to help.

If you have any questions just ask away, there's little we haven't discussed & not much surprises us!

[55MC in reply to nomoreheels]

Thank you. It's like studying at Uni again!! So much to find out.

[nomoreheels in reply to 55MC]

You're welcome. It is like studying at uni, that's a good analogy but like most things there's good & bad information so do choose wisely & keep to reputable sites. Remember too what works for one person doesn't necessarily mean it will work for another so it's best to research & ask if unsure.

[Mandalou]

Hi 55MC

Welcome and so sorry you have been diagnosed with RA/RD as Nomoreheels explains the terminology people choose differs from individual to individual but it all amounts to the same rotten autoimmune disease.

I'm a year in since diagnosis, which was after sudden and severe symptoms in multiple joints. Fingers, hands, wrists, knees, feet, and one of the most uncomfortable which was the jaw. I also suffered from Inflamation at the base of my skull. Which apparently is actually the very top of the spine. RA usually spares the spine mostly.

I couldn't close my mouth or chew for approximately a month.

As I was completely disabled at onset I was given large doses of oral steroids which got me walking and able to look after myself again and took away the inflammation pretty much everywhere.

I failed all DMARD's except Hydroxychloroquine either due to allergy or intolerance ( liver said no)

So for the last six months have been injecting the Biologic Enbrel once a week.

Have been back at work now for a while after being off sick for 11months which is very good news. Though not always easy.

Good luck with the Methotrexate it is the first line of treatment for many and also people do really well on it more often than not.

I sympathise with you greatly regards your jaw and can only advise you from personal experience to try and relax your facial muscles as much as possible which helped me. I hope you have a good relationship with your GP who gives you some good anti inflammatories to help until the DMARD kicks in.

It's just the most uncomfortable grim experience and I'm sending you all my best wishes for you to get some relief very soon.

[Hidden]

Welcome to the site 55MC. This is an amazing site for help, knowledge and support.

RA is a strange disease as it effects people in so many different ways. I liken my RA as a pinball machine gone wild. One moment I have severe pain in my feet and the next moment I have severe pain in my knees. The only constant pain is in my hands

This disease is awful, and I hope the MTX works for you.

Take care

Sue

[55MC in reply to Hidden]

Thanks of your response suzannedale.

[Sheila_G]

Sorry you have been struck with this dreaded disease. Welcome to this site which will be invaluable to you. You will get lots of friendly advice, tips, compassion and sympathy here. I have had RD for 14 years and been on methotrexate all the time. I was on a combination at first but for the past 8 years or so just methotrexate. Early in my disease I experienced terrible pain in my jaw and couldn't eat it was so painful. I have not had a problem with it since so don't think you are going to have it forever. I hope that methotrexate works as well for you as it does for me. Good luck.

[55MC]

Thank you Kai, I feel like everyone around me (except my hubby he is very supportive), is sympathising but doesn't really know what it's about. I know it is going to be a huge learning curve, with many highs and lows. I am a fairly positive thinker so just need to get myself over the initial low everyone feels I am sure, when newly diagnosed. Appreciate the links attached.

Margaret👍

[55MC]

Thank you Sheila. It is really encouraging to get lovely and informative responses. 😀

[jell]

I was told at RNHRD that my jaw etc had nothing to do with RD. It's got to the stage where I can't open my mouth wide enough now and often stab my lips with my fork by mistake ouch!

[farm123]

When my condition is not under control with meds I find my left jaw joint (near ear) is painful. I have to choose what to eat at times. Sometimes heat helps to loosen it. Hopefully once you can start on meds things will settle although it can take some time for them to work (up to 12 weeks). Farm

[jaclyn11305]

I too was just diagnosed in may which started with swollen hands in morning now every joi@t in my body has been hurting along with my jaw bone started 2days ago along with bad pressure in my head when i bend. I can only assume it's all related to RA I mean my arms hands feet knees shoulders and back are really bad I have nodules all over already too. I hope you find treatment that works soon sweetie I know how unbearable this can be.