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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 64
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Dear Everyone
I have posted about this before, I have just recovered from having a painful left jaw. Two weeks ago I had the problem in my right jaw. I have taken morphine slow release tablets on both occasions and I am now back to normal (for the time being). I asked the specialist (registrar) when I had my 6 monthly check up in Dec about this jaw problem and he didnt seem to be interested in it. He said if it comes back on a regular basis then they could refer me to the Ear, nose and throat department. My own thoughts are that the RA medication needs to be increased (MTX 25mgs and Hydrox tablet daily) I have managed to rise above most of the RA pain, however the jaw problem is extremely painful and also very frightening. I have to go on soup and yoghurts for at least 2 days. I have researched this on the internet and find that only 17% of RA patients get it in the jaw and that it is usually the last joint in the body to get it. I am so scared that I am going to get this on regular basis that I am panicking and if I do I dont know what I shall do.
Any suggestions please.
Wishing you all a Happy and Healthy New Year
Val
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Val,
I sympathise with you, I too had it in my left jaw for the first time approx a month ago and it took longer than the other joints to clear up, is it a larger joint ?
I have an appointment with the rhummy on the 12th January and it is on my list of questions.
So at this moment in time I have no suggestions but hopefully others will.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Hi Val,
I've had a painful left and right jaw but not for very long only a couple of days of chronic pain and then left with the dull ache for a few more days. I can sympathise with the soup and yoghurt diet they seem to be the only things which don't sit in my stomach like a stone and are easy to eat as well. I find talking and smiling for a long time painful, it was especially bad after New Year's Eve, and sometimes when eating my jaw almost seems to come out of alignment and I get that horrid clicking and shooting pain feeling! I've only mentioned it to my GP so far who said it was probably the RA and was a bit dismissive about it, I'm a bit new to this game so I thought the jaw thing was just par for the course not anything out of the ordinary. I'm only 8 weeks in on the MTX and waiting for it to kick in so I can't be of much help really only to say I can sympathise and like Anne its on my list of questions too. Hope you're feeling better soon.
Sara
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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I've had problems with my jaw several times - in fact it was one of the early joints to cause me significant pain. I only mentioned it to my consultant as an afterthought as I assumed it was a dental problem and I was about to contact my dentist. She said that RA does affect the jaw - for a minority of us. It makes eating and talking difficult - but fortunately only for 2 or 3 days. When the pain is in your head it does seem worse somehow.
I am now trying very hard not to clench my jaw - something I tend to do when stressed as I am sure that set it off last time.
Good luck
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Val
About five years before the onset of my RA ( have had it for two years in April ) I suffered with severe jaw ache on the odd occasion - couldn t eat etc and had no idea until recent times that it was basically the onset of my RA - good job I didn t know either. My RA still isn t under control, started infliximab about nine weeks ago - so fingers crossed. When I have had a very severe flare up my jaws decides to kick in and one night took myself up to A E as it was so dreadful, I have relied on steroids throughout to relieve the problems. I feel that it is an intermittent problem for us and hopefully it will calm down for you.
Keep us posted, take care, Julia x
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Rank: Advanced Member
Groups: Registered
Joined: 3/24/2010
Posts: 102
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Hi all Happy new year to all. I too, have had jaw pain and been affected so badly I have not been able to eat for a couple of days.  I have to say - so far, since I have been having infliximab infusions (since Aug 09) I have not suffered any incidents of jaw pain (big relief!) I am at the point with infusions where I might have to stop  and am very concerned about an alternative med, as infliximab has been so very effective. The thought of returning to all the severe aches and pains is very worrying (especially as I have a new- 4 day old grandson!) 
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello
I just wanted to say that I feel for you. It sounds most uncomfortable and must be
horrible having a diet of yogurt and soup.
I hope you get answers soon
Rose
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Rank: Member  Groups: Registered
Joined: 1/4/2011 Posts: 14 Location: London
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Hi Val When my RA was not as well controlled as it is now I also had pain in my jaw which made it painful to eat. Unlike the other joints it was less often in pain - I hope you are not going to suffer for too long with the pain :( xx Francesca x
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Val, I too had terrible pain in my jaw when first diagnosed 3 years ago, RA affected every joint in my body but now that my RA is well controlled I no longer have pain in my jaw at all. Don't worry once you get the meds sorted out you should be fine. Try not to worry ( I know that's hard )  Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 64
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Just to update you all. I have had a medication review with the specialist this week. She has agreed that my current medication is not working (25mg MTX by injection, 200 mg plaqenil) they have now added in 10mg of Leflunomide. I feel as though I am in 'the last chance saloon' for this type of medication. I have been told that I will probably have to go on the Anti TNF treatment if this doesn't work. I will keep you updated, I would be interested to here if anyone else in on this triple therapy and if so is it working.
Regards Val
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Val,
Best wishes I hope lefluno works well for you. Fingers crossed.
I am waiting to start TNF very shortly.
Good luck
Rose
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