I have asked the doctor what it is, and has it anything to do with Pollymyalgia he say no, but does not know what it is and has given me ear drops, they do help with the pain but I have a permanent swelling on my neck now, the swelling does not hurt, but the ear ache keeps returning.
Any help with this problem would be appreciated.
Do not leave it!!!Pursue it to answer from someone in medical profession.Meanwhile have word with your local pharmacist,very helpful and very experienced .Good luck and bless you.Soo.
I think a specialist opinion is called for - not ear drops! You can't tell what the swelling is just by looking - and the GP admits he doesn't know what it is.
Hi, I am new to pmr, I have had mild earache to my left ear for 2-3 years, slight swelling to base of ear (soft), also pain left jaw and my jaw cracks a lot. when doctor looks in my ear there is no inflammation or anything to see. I wonder if this is part of my pmr. hope you get it sorted x
Jaw claudication is a sign of GCA. Essential you see someone who knows what they are talking about. Best to go to A&E who treat this as an emergency. Good luck.
I had Jaw claudication. My doctor treated me as if I was mad. I missed blindness by a hair on a sheet of Plastic!
Hi vonne 123. I had the swollen shoulder but only slight ear ache about a year ago, my GP diagnosed a flare up of Temporal arteritis, increased my prednisolone to 60 mg and made an appointment for me to see visit the eye clinic the next day. You cannot take chances with your eye sight, insist on a second opinion. Good luck.
vonne123: I am so very sorry for your pain. I want you to know that the first symptom of my GCA was an ear ache. Shortly after developing it I went on a plane and was astonished that the pressure in the aircraft did not make it worse. However, about 3 weeks or so later, I was also going to bed with the ear pain and I guess other flu-like symptoms. I did not know I was sick and only got a "burst" of Prednisolone (4 mg over 6 days tapering 1 tablet a day from 6 to 0) for what I thought was a sinus infection. Shortly after I finished the Prednisolone burst my ear hurt again. "Involvement of the posterior auricular artery sometimes manifests as pain in the ear canal, pinna, or parotid gland." I remember often rubbing the glands in the neck under the ear as well and they seemed swollen to the touch. Before all of this I was not to in tune with my body. I did not notice whether this swelling was obvious to the eye. *Medscape reference Drugs Diseases & Procedures: Giant Cell Arteritis Clinical Presentation by Mythili Seetharaman, MD; Chief Editor: Herbert S. Diamond, M.D. Maybe this will help you. Got the article on the internet. emedicine.medscape.com/arti...
vonne123 & dillydally1: Dillydally1 please see my post of a few minutes ago to vonne123. I think that in Google Images you can get a picture of the parotid gland. When I thought about it, my pain was not really as much in the ear canal as just in front of the mid to lower part of the ear on the edge of my face. As I recall, this is where the parotid gland is.
Hi
I have swollen neck shoulders and back of neck, diagnosed gca December have been told its the steroids. Am now on 20mg from 60.
Has anyone else been told this
Do you mean the hump in the middle of your shoulders? And general puffiness all over? If so, yes it's the pred, it encourage fat deposits in specific places and that is one of them. It will go when you get to a low dose - mine has.
Is 20mg not low after being on 60.
All things are relative I know and yes, 20 is low compared to 60, but 20mg still counts as high dose pred! 10 to 20mg are regarded as moderate doses and below 10mg is low. Even at 10mg there are side effects but they are less important. I've never been above 20mg but I still developed the hump and the general fatness, especially around the midriff. Since changing to a different form of pred and getting down to 5mg I have lost 15kg, well over 30lbs - it has been hard work but it can be done!
Thanks for reply. Been on diets all my life, nice to have excuse not to be for a while.
Put on 6 pounds in 5 months which has gone on my back face and stomach so will now need to start eating properly, diet holiday over !!! How long have you been taking pred and well done for weight loss.
I've been on pred for 5 years nearly, the first sort I didn't put on more weight - I'd already put a lot on from not being able to exercise - but it redistributed. The second sort of pred was awful - loads of weight all over, muscle wasting, skin and hair went mad. Third time lucky - all back to normal nearly. Um - pred isn't an excuse not to watch what you eat! You need to be even more careful! I find cutting all processed carbs has worked well, if slowly. Most people will say you can't lose weight on pred - you can but it is quite hard work.
Hi again
What sort where you on and what are you on now if you don't mind me asking
At first ordinary and then enteric coated pred in the UK and then when I moved here to Italy I had to be switched to Medrol (methyl prednisolone) which I hated. It made me ill and didn't seem to be working so my GP tried me on a fairly new format called Lodotra which you take at 10pm and it releases during the night - the optimal time to take your pred. It is approved in the UK for rheumatoid arthritis but not yet for PMR and it is far more expensive than other forms - we don't have the same restrictions here though.
Tobytomtom, 20mg is still considered a high enough dose for the side effects of steroids to make themselves obvious, unfortunately. The swelling between my shoulder blades (aka the buffalo hump) stayed with me until well into single figure doses - I first noticed that it was diminishing when I suddenly became aware of being able to stand up completely straight again with my shoulders back - that was quite a revelation. However, this doesn't detract from the fact that you are doing very well having got down from 60mg to 20 - don't lose heart, the swelling will definitely disappear eventually.
Thanks all.
Is their a 'better' time to take pred. Was told to take around 5am and have been but means have to take stomache linner about 4.30, then take pred at 5pm with a yoghurt, then try and get back to sleep.... Down to 20mg
I take mine after breakfast each day. About 8 to 8.15.
Neck shoulders aches.
Neck ach 
Has anyone had back surgery?
Has anyone had to stop actemra?
