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Discussion Starter · #1 ·
Hi all.
I have actually found how to do my own thread lol, haven't been able to find it.
Anyway. I Was sent to the maxi filo clinic for my jaw last week and found out that my jaw is wearing away.
I was shown my X-ray and had a shock to see part of my jaw bone wasn't there. Since I've had lupus, I have always had problems with my jaw locking and being very painful , along with my fingers and thumbs they always lock too.
Could this be because of my lupus or I now have RA (year)and fibro since March. Does anyone have this problem or had this problem, and what treatment there is for it.
Keep safe all
Wolf1
 

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I would have thought it to be RA rather than lupus. RA can tend to aggressively attack bones. You may need meds changed. methotrexate is what they normally use for RA
 

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Discussion Starter · #3 ·
Thanks for your reply but I can't take methotrexate it doesn't agree with me. I was given more cell cept but my body would not except it, so I'm being left alone for now. If it is down to RA, it's happening fast.
I'm not aloud to chew which isn't easy, I have to put things in a blender if I want chewy things.
Doesn't stop me talking tho lol.
Wolf1
 

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That sounds miserable :0( .... are the Drs saying it is down to the RA for sure ? Are you on anything at all to control the symptoms and effects ? When you say more Cellcept...what doses were or are you still on ? and my final question....how were you on Methotrexate that you say it didn't agree with you ? Only asking because I know some members that have struggled with it orally but been fine on it via injection or when they added in folic acid.....sorry to ask so many questions !!
 

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Discussion Starter · #5 ·
Hi Clare
I'm waiting for a phone call either Friday 21st or Monday 24th to find out what is going to happen they haven't yet said what has caused it. May have to have CT or MRI for the specialists to make decisions. Not supposed to chew any thing, must eat soft food or liquidise everything.
I am on cell cept 2 morning 2 night. I was given 1 extra in the morning to help with RA but made me ill and the world fell out of my bottom lol.
Methotrexate gave me a fast heart and kept throwing up so I was taken off them. It was the first med I was given. So still on cell cept 2morning 2 night for now.
Hopefully I'll hear by Monday what's going to happen. I'll keep in touch
Wolf1
 

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Hi again....so were you taking Methotrexate orally and ? with folic acid ............more questions !! Hope you get your phone call today so you can move it all forwards.
 

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Discussion Starter · #8 ·
Hi Claire, yes it was methotrexate tablet form with folic acid. Then I tried plaquenil, azathioprene(spelling). Steroids. These all went against me.
Cell cept has been good up to now as long as I stay on just the four a day.

I did have a phone call this morning and I have to have an MRI. I'll have to open and close my mouth when I'm in there to show how my ligament is moving in the jaw. They'll send me a letter soon with a date and its 6 to 8 weeks waiting. Hopefully before Christmas otherwise I'll b liquidising my dinner lol.

Hi lazylegs. Thanks for the read it was interesting, I have heard of TMJ before. When I had my X-ray, there was no signs if absus or any infections in the gum or teeth but it showed that one side of my jaw was missing, still gabbing tho lol.

When I hear any more I'll drop a line.
Wolf1
 

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I was just wondering if you could try the injectable form of Methotrexate to stop the vomiting...not sure if it would help the increased heart rate though :0(
 

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Discussion Starter · #10 ·
Hi Clare.
They won't give anything to do with wot I've already taken. One specialist wanted me to go on TNF infusions, she wanted me to think about it but I told her that I can't have it but she was pushing me to have it. I've been told no all the way through that there's no way that I will have it.
So I've been left alone as I am on the cell cept I'm taking and see how things go. I'm not seeing my specialist for 6 months unless I have problems.
Keep safe
Wolf1
 

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Discussion Starter · #11 ·
Hi all
Had my MRI today(22nd) for my jaw. I was in it for about half hour or more.
Glad that's over now. Have to wait 7 to 10 days for results. Hope they can do something for me coz I'm having a lot of trouble with it.
I'm still liquidising my food, on times I am chewing a little bit but the jaw gets sore then.
Will let you know when I here anything
Keep safe
Wolf1
 

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I hope they can do something for you, it must be difficult to deal with.
 

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Hi, just wanted to say I too have a lot of jaw problems due to inflammation around the joint as well as the muscles throughout my face and neck.Began wearing a mouth guard at night a few years ago which helps keep it in proper alignment reducing stress on the tendons and muscles but it is always tender.
 

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Discussion Starter · #15 ·
Hi mea
My dentist gave me a guard to ware at night.
My jaw is going to the left and found out now that part of my jaw bone has deteriorated, so the M R I I had yesterday was to see how far it has gone.
Hope you are feeling ok
Take care
Wolf1
 

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mea
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Hi mea
My dentist gave me a guard to ware at night.
My jaw is going to the left and found out now that part of my jaw bone has deteriorated, so the M R I I had yesterday was to see how far it has gone.
Hope you are feeling ok
Take care
Wolf1
I'm doing pretty good thanks. Actually one of my main reasons for needing the steroids was the facial swelling around my jaw and eyes. For some reason the imuran doesn't always keep it in check so was supplementing with anti inflams but rheumy has removed them and added low dose pred every day instead. Hope you get answers and help soon,I know how awful this problem can be.
 

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Discussion Starter · #17 ·
Hope you are feeling a lot better now. I've had an appointment in march in the maxifilo clinic, I still haven't been told what's going on so I'll just have to wait till march and hear what they have to say
Take care
Wolf1
 

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Discussion Starter · #18 ·
Hi
I have been seen by the maxifilo clinic and they have desided not to do anything for me other than give me physio to do on my jaw
If my jaw goes again they are thinking of cutting a piece of my top jaw out instead of going into my jaw for gristle to build it up.
Jaw operations are not alway the best way to go because it doesn't always work. So I just have to do my excercises for now and see how things go.
I am eating properly now instead of liquidising everything, as long as it's not to hard or I can't chew it. My jaw gets tired so with any luck I won't eat so much so I'll lose weight lol.
Fingers crossed phyz will work.
Wolf1
 

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Glad you have finally got some answers, it was a long wait. I hope it works for you.
 
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