Pain back of nose

[Tailor]

Hi, have learnt a lot from you lovely people on this site, and now I have a question. It was first thought from the face ache and raised ESR 30, I had GCA, and was put on 60mgs of Pred, the GP and neuro now believe I haven't got GCA, so more blood tests on the cards. I have pain between ears and nose, blurred vision, numbness in my fingers and toes and sweat that much that my hair drips.

I've had an x-Ray on my head but nothing shows up said the ENT consultant. The GP noticed the lining of my nose was very red and prescribed ointment which took away the redness. But the pain is at the back of my nose. My sinuses are clear. I have a slight cold at the moment but last night I was in so much pain In my face I didn't know what to do and I was up at 4.00am.

After a while, being upright, I found the mucus from the cold was coming away from the back of my nose and the pain was easing a bit. The experts said my sinuses were clear. I have got a very tender area at the back of my nose and it's as if I'm imagining it because no-one can see anything wrong.

Has anyone else had these symptoms, it's made me a prisoner at home because of the pain, the steroids did help but they want me off those to do more blood tests, and on coming down, the pain is back. I've had this since last July.

Any advice would be very much appreciated, thanks.

Tailor.

[PMRpro Ambassador]

Does seem to me that they need to do a bit more imaging than just an x-ray - at least MRI or CT. Is that included in the further tests?

There was an article in one of the newspapers the other day about a woman who had a problem with blood vessels, and artery and a vein, just behind the nose that caused her terrific headaches - a fairly rare problem but was cured by a novel operation that was done through her nose rather than via the brain which reduced the risks. I'm darned if I can find it though. I don't really believe one half of the "health" articles in the media but this does ring bells with regard to you.

Got it!!!!

It was in the Daily Mail a couple of days ago - it was a vascular malformation and caused her memory loss in the end after years of headaches;

dailymail.co.uk/health/arti...

[Tailor in reply to PMRpro]

Thank you PMRpro, interesting article, I will take a copy to GP and I have also had a scan with dye that didn't show any abnormalities either, but my symptoms seem the same as that ladies, it's worth looking into,

Kind regards

Tailor.

[PMRpro Ambassador in reply to Tailor]

Do come back and tell me what it was when they find out! We have so many people on the forums looking for help because of headaches that doctors first think might be GCA, then decide it isn't and stop pred but don't look for other options or doctors who meet patients with headaches and simply don't do anything because they decide it isn't "typical GCA" - whatever that is! Another idea is always helpful.

[Lisa630 in reply to PMRpro]

This is exactly what's happened in my case . . ,

[Tailor in reply to Lisa630]

Hi, Lisa630

Sorry I cannot see your posting, please reply again, I value your comments, thanks, Tailor.

[Lisa630 in reply to Tailor]

"We have so many people on the forums looking for help because of headaches that doctors first think might be GCA, then decide it isn't and stop pred but don't look for other options or doctors who meet patients with headaches and simply don't do anything because they decide it isn't "typical GCA" - whatever that is! "

Sorry Tailor, I was simply indicating that what PMRpro had said was exactly what hack happened to me, they thought I had GCA . . Changed their mind after 9 wks on high doses of Pred, I'm now on 10mg and feeling much better, I wonder if I will ever know what I had that gave me CRP levels of 113 and similar symptoms of GCA . . X x

[Tailor in reply to Lisa630]

Thank you Lisa, yes you are right. I hope your feeling better now, the Pred does weird things to the body. Here's to a healthy 2015.

[Tailor]

Yes, will do, but just as you say, I will not hold my breath, it's bean going on for so long.

Thanks for your input.

[Hidden]

Tailor, I feel you pain literally! Jaw/ facial pain has been a really troublesome symptom of my illness. The pain is very hard to bear at it's worst, like you mine has been helped by steroids but no painkiller has ever helped ( have never tried morphine based drugs ).

I have had many tentative diagnosis's but have recently tested positive for the gene which causes ankylosing spondylitis ( 10% of patients with this will develop jaw/ facial pain ). I have also had bilateral hip and shoulder pain, thoracic spine pain, headache, blurry vision, fatigue, weight loss and abdominal problems.

I am not suggesting that AS is your diagnosis but as someone who has been on a 2 year journey to find a diagnosis all I can say is don't give up and keep pushing.

The problem is that so many things respond to steroids and although they are part of the solution their effects become part of the problem as well.

Good luck with it all.

[Tailor]

Thank you keys, will look into it.

[Celestee]

use steam to decongest. helps me. i too get pain in my face feels like sinus area, Dr says sinus are fine.