Does anyone else have problems with their tongue

[Runrig01]

Hi Folks,

As you all know I have been having cramping in my jaws for a period of a few weeks off and on. My Rheumy says she finds it impossible to believe I could have Atypical GCA as well as Atypical PMR. For several nights over the last few weeks, my tongue has kept me awake. It is not painful but twitches, I can hear a tapping sound when it is occurring. It sounds like someone sending a Morse code message on my tongue. Does anyone else get this, it is stopping me sleeping. Could it be related to the steroids?. I notice that tongue claudication is a sign of GCA, but as I say there is no pain, just a small twitching sensation. Am due to see GP next week, as I dont feel my Rheumy has reassured me enough. The vague temple headache comes and goes now.

[ritter]

Hi runrig01 yes i have had a twitching in my tongue just happens occasionally its not all the time,and i too have the occasional temple headache,I assumed it was due to the steroids but have never asked the GP about it,as my GP has not even referred me to the Rheumy yet he his just writing to the hospital now and this is after 1 yr.what is tongue claudication?not heard of that before.ritter.

[Runrig01]

Hi Ritter, claudication is when you get a cramping pain or aching. As I said my tongue is not painful just twitches for hours on end, making a weird clicking noise that keeps me awake. I sometime wonder if you can have mild GCA?

Runrig

[adelle]

Hi Runrig01

I have had lots of problems with my tongue. I have never had it clicking,but I have had sores, growths, blocked taste glands, swelling and I find it painful to eat or drink. (especially first thing or if I have not had a drink for hours my tongue feels cracked and sore.)

My GP told me this was due to the steriods. I am now down to 7mg and things are improving. I still get days when I feel that the headaches are returning. I will put that down to stress as otherwise I can honestly say I feel fantastic, especially compared to this time last year. So on a happy note things are getting better every day and my energy levels are improving all the time headaches less and I can actually think.

Just got to sort the tongue so I stop biting it when I talk. (I do a lot of that)

Adelle

[Old_Bedfordian]

Hi again runrig,

An early symptom of mine, some months ago when on no med, and not diagnosed and never heard of GCA was a terrific pain at the end of my tongue. As always, it occurred between 2am and 4am. Several nights over months, and this a few weeks after the jaw pain on talking stopped. (please note I don't talk to myself at 2am, so the jaw pain was whenever I did talk.....that is, when I met someone who would listen!)

[Runrig01 in reply to Old_Bedfordian]

Wow, this is an old post. However I do still get tongue pains, have see Maxillary facial Drs who said it was GCA and my Rheumy should be treating it. The fact I have gone 2 yrs with GCA symptoms not being managed, I have only ever had low dose Pred for my PMR. I now have to "manage the symptoms" because the risks of increased steroids now outway the benefits. I have been given high dose Pregabalin which helps the pains inc the tongue, but there always there. When I wake in the morning I have intense burning till the Pred kicks in. Then pain right side of tongue returns later in the day but I have no choice but to persevere 😏

[Old_Bedfordian in reply to Runrig01]

Hi there again, Runrig01.

Why does incresed PRed outway the benefits. That is very interesting.

[Runrig01 in reply to Old_Bedfordian]

When I seen the Prof he said the chance of "a catastrophic event" from the GCA was low after having the symptoms for 2 years. He feels that increasing Pred would cause side effects like high cholesterol or diabetes, which could result in a stroke or heart attack, in addition to osteoporosis. I have also seen an expert in Leeds who agrees with this management. It does leave me with burning temples, tongue pain all be it not as severe as when it started or flared. Days when I work pains are worse.