New from the UK

**Jack** · 08-24-2010, 03:51 AM

Be very careful which nasal spray you use and don't use any of those designed to relieve congestion. I did this before diagnosis and had terrible rebound effect which left me worse than when I started. Lubricants and wetting agents are OK,but I never found that I needed more than saline flushing.

**freakyschizogirl** · 08-24-2010, 04:00 AM

Yeah i know decongestants are the enemy...tho i did have a few weeks of taking em recently...was just in so much sinus pain...but i have a good friend who is a Pharmacy assistant and she put me on the straight and narrow...and the only nose spray i used is Sterimar. I wont take any spray someone suggests...not even the ENT these days cos they try and fob me off with stuff...i'm not paying out on Perscriptions for stuff that doesnt work.

**Sangye** · 08-24-2010, 05:02 AM

SO glad you're getting in tomorrow. I bet someone saw Wegs on your file.

**elephant** · 08-24-2010, 05:04 AM

Sam I am glad you are getting those done tomorrow too.

**freakyschizogirl** · 08-24-2010, 05:45 AM

thanks guys!! Just cant believe how quick they are acting...but they've been telling me for 3 years that there is nothing they can do for me and i'll just have to live with it! So angry i could sue

**Deanne Hull** · 08-24-2010, 09:59 AM

Hi again, as I am in Australia the product I use is called Nozoil and the other one is Fess, I am not sure if you can get in the UK but I am sure
there will be products at a pharmacy that will be similar.

I am so glad you are going to get this sorted, good luck.

**Terri** · 08-24-2010, 11:20 PM

Hi Sam,
Glad to hear you have appt. sooner, rather than later.

Listen to these people--BEST FRIENDS FOR LIFE (BFFL)
Hope the reply's make you feel a little better.

ps...andrew, I love these new emoticons!

**staystronglivelong** · 08-25-2010, 02:30 AM

Originally Posted by freakyschizogirl

Deanne what are the names of the sprays you use??

You wont all believe this but i got a phone call this morning i have an appointment with a chest consultant tomorrow followed by chest xray and ct scan...how quick is that!!

Hi Freakyschizogirl

Sorry you've had to come and join us. We are a good group and you will find excellent help and advice on here from people.

I'm wishing you all the best and hoping that you're tests are clear in other areas. Glad you are getting seen at last - you shouldn't have to wait till December, like others have said - you can't wait that long with Wegs, damage could be being done. When reading your story and others stories it makes me realise how lucky my husband was to be diagnosed so quickly. He has sinus only involvement. He started off with a cough at night, loss of taste and feeling unwell. It must have been 3 months before his diagnosis that he started to feel unwell. He seemed to have hayfever - thats what I thought it was - his nose was always blocked - worse at nightime. I'd say 3 weeks before his diagnosis he became very unwell - nightsweats where the bed would be soaked, EXTREME headaches that he couldn't bear, said it felt like his head was gonna explode. The headaches were always worse at night although they were always there. The top area of his nose swelled and would swell more at certain times of day but then go down slightly. He went to the doctors and was prescribed antibiotics, then more antibiotics and steroids, no change, he kept going back as the headaches where unbearable and he'd not been able to breath through his nose for such a long time. Also tiredness was a symptom of his, he would have naps on the sofa in the day as he could not sleep at night. Eventually when he went back to docs after he had finished his antibiotics she tried to look up his nose and said she'd never seen anything like it before, his nose was so swollen. He was referred to Ear, Nose and Throat at Queens Medical Centre, nottingham, the next day. Whilst there he was attended to by a nice lady who also could not see anything up his nose. So she soaked some cotton wool in a decongestant and anaesthetic and proceeded to shove this cotton wool right up his nose inflicting severe pain on him, so much so that he swore - and then apologised! It was terrible to watch, he was already in enough pain! She had to leave this up his nostrils for ten minutes, the idea being it may open up his airways so she could get a better look. She tried to look with a camera, but still could hardly see a thing. She took some blood in-case (she said it wouldn't be) it was an auto-immune problem. And made him an appt in 3 weeks time. I thought to myself how can he suffer like this for another 3 weeks? And hes not a mardy person. Anyway, a week later (and after some nagging on my part) he went back to the docs after he'd finished the double strength antibiotics. After the doc chased up his blood results (whilst he was there) she told him it was wegeners. She got him in at the qmc hosp that day to see Dr Courtney (don't know if hes a wegs specialist) - he might just be a rhematologist. And the doc wanted to admit him that day! He had a chest x-ray and more blood taken. My hubby didn't want to be admitted that day as he needed to get his head round it and see me and his daughter. So he was admitted next day and had intravenous steroids and lots of tests - ct scan, nose biopsy to confirm its Wegs. They decided to give him IV Cyclophosphamide which he started 2 days later (after the weekend). So, you can see how fast his treatment progressed. The doc also said the activity (the level of ANCA cells - I assume) had progressed rapidly within a week from one blood sample to the next. I wish you all the best. My hubby has had no ill effects from the chemo treatment apart from feeling tired for a couple of days afterwards. He has put on lots of weight and gotten loads of spots - unfortunate side effect from the prednisone steroid - although alot of people have to deal with worse side effects. I wish you all the best and hope you'll keep in touch and be feeling much better very soon. Thanks for listening to me drizzle on. x

**freakyschizogirl** · 08-26-2010, 05:30 AM

Well i had an interesting day at my appointment...i had a lovely physical exam which i wasn't really prepared for...and i've got blood tests, lung function or something tests, xrays and a lovely ct scan all to come in the next few weeks and i get to see my old friend the Rheumy. At the moment they seem to think it localised to my nose area, lucky me??
Oh and i gotta lose weight...why is it always the answer to EVERY illness and ailment.

So some fun filled weeks ahead for me.

Worst thing is hearing them refer to my nose as deformed....as if i dont feel stunning already!! I've always had a sadle nose so it doesnt bother me in the slightest...its the bridge of my nose where its collapsing that looks horrid to me and makes me feel like the Phantom of the opera...Or Phantess i suppose.