Swelling on temples and below the eyes

[Poppy1647]

Has anyone ever experienced swelling around the temples and under the eyes accompanied by tenderness & headaches? Im unable to wear my eye glasses with no pain or discomfort

As some of you are aware, i have been waiting for a Petscan and at the same time reducing Pred pretty quickly, when I got down to 40mg from 60 in 3 weeks, these symptoms appeared after I had a week headache free whilst on 60mg but still had fatigue, muscle pain, sweats and generally feeling spaced out.

Now i have frequent headaches, ear pain, swelling around temples & below the eyes. Discomfort & Pain lying on the pillow

I had my Petscan yesterday so now waiting for the results. I was told by staff there that the dose I was on won't affect the results.

Rang my rheumatologist who asked me to send him a pic, which to be fair were not very good in showing the actual state of my face and he just put it down to a moon face which clearly it isn't. He stated he will wait for the results of petscan & bloods but doesn't think there's inflammation there so not keen to do much with meds at this point.

Im so lost with the amount of symptoms I have, most do fit GCA but he still thinks its not what it is.

Symptoms I experienced are

Headaches, fatigue, heavy legs, tingling in both legs and arms, craps on feet and hands, muscle pain, dizziness, sweats, now swelling of temples and under eye, pain in eyeball. Some of these are not present daily especially muscle ones, they seem to be different each day

Im so fed up now & I know I need to wait for the Petscan results but just needed to find out if anyone has been experiencing these too.

I have increased Pred today to 45mg to see if it helps .

[DorsetLady PMRGCAuk volunteer]

Sorry to hear you’re not getting as much support from your Rheumy as you would hope.

I would say the symptoms are very GCA like, particularly as the majority reduced at 60mg and returned when you reduced. At only a week the initial symptoms you describe at that dose are still possible and the spaced out feeling is due to the medication.

Nor really sure why he is dithering - but I guess he does.

Hopefully the increase will help,,and please keep us informed.

[Poppy1647 in reply to DorsetLady]

Thank you for the reply,

Forgot to add jaw pain when chewing which also went on 60mg.

[DorsetLady PMRGCAuk volunteer in reply to Poppy1647]

Typical GCA!

[PMRpro Ambassador in reply to Poppy1647]

That on its own should trigger suspicion of GCA. In combination with the other things - I'd be wanting a second opinion.

[Devoid]

These all sound very familiar from about a month in on steroids, particularly that the symptoms, pain was not the same every day, swelling around eyes started to reduce from 10 mg but is still there, worse as the day goes on , doctor thinks it’s fluid retention

[Poppy1647 in reply to Devoid]

I guess the fluid retention t would be the steroids. Its causing so much discomfort & ear ache.

[SnazzyD in reply to Poppy1647]

Try drastically cutting down on salt. My body, face and eyes were very affected by salt such that I couldn’t have anything with salt in it eg. Sauces, gravy, anything manufactured. Food became very boring for a long while but occasionally I would have something and then pay the consequences for a few days.

[Poppy1647 in reply to SnazzyD]

Thank you,

Surprisingly after increasing the Pred, swelling has gone down! Will see how I go in the next few days.

[SnazzyD in reply to Poppy1647]

Ah, oh. Keep an eye.