Update on my jaw (and reply to )

[Guest guest]

Hi all,

Firstly, I can totally relate to what you said. I'm also feeling the

change to Winter very much and this damp weather is really noticeable in my

joints. This happens every year. I think it's a very common thing. Doctors are

always telling me that their patients with arthritis are better at predicting

the weather forecast than some professionals!

I haven't posted lately but I just wanted to send a quick update. I'm not sure

where I was up to when I last posted but I had a very successful gallbladder

removal surgery at the start of September followed very quickly afterwards by a

TMJ (Jaw joint) replacement surgery 3 weeks ago. I had to travel to a hospital

about a 1.5hr drive from my home to have the surgery as they only take place in

specialist units which are dotted about the UK.

The surgery itself took a bit longer than planned as my salivery glands and

parotid (I think that's what he said) glands were very swollen from the

inflammatory process at the heart of stills disease, He had to make a deeper

incision than normal and he removed a lot of inflamed tissues and a lot of

muscle to get the new titanium joint into the correct position. When I woke up,

I was really upset to notice that the right side of my face was paralysed. My

eye won't close still to this day and the right corner of my mouth won't move so

I have a slanted smile. I looked like I'd had a stroke straight after the

surgery. My mouth has improved somewhat but my eye remains stuck. I have to tape

it down most of the time to stop things going into it and to keep the light out

which is quite painful. The surgeon was very apologetic that I'd got the

weakness but he's still hopeful that once all the swelling (which was severe)

has gone down that I'll get movement back. It could take a couple of months for

that to happen though he said. I'm trying to be very positive about it and think

that even if the worst happens and movement doesn't come back, at least the pain

from my jaw has gone and that is a true relief.

I feel a bit battered at the moment from 2 anaesthetics in a short space of time

but I'm glad it's all over. I was able to have my first infusion of Tocilizumab

(RoActemra) on Friday too and I'm keeping everything crossed that this will be

the drug for me. I haven't encountered any side effects from the first infusion

apart from feeling very hot but that could be from the frequent fevers anyway,

so that's promising.

Anyway, I hope everyone has had a resonable weekend. Welcome to all the new

people.....this truely is a wonderfully supportive site so you've come to the

right place!

Best wishes to all

Kate (UK)

Flares - what do you do?

I understand people flare at different stages and for a whole host of

different reasons.

Over here in England, UK I notice I often flare when Winter suddenly comes

in - it'll start lashing it down (raining hard) and over the years noticed a

pattern emerge. What I've also noticed is that I use the PC far far too much

and it really can tire me out.

I'm on MTX and take it on the Mondays and as the week progresses it slowly

makes me more and more tired. I'm only 31 years old and given the chance can

go to the gym and take my b vitamin tablet to try and counter act the

tiredness.

I've gone down to 4mg Pred and I'm on 12.5 MTX... I think I have to go up on

the MTX but also think if I chilled out.. and took it easy, then I'd be ok.

I spend far too much time on the computer and need to 'chill' out big time.

I'm far too apprehensive and stressed when working on the PC.

Can anybody relate to the above?