Search:

You sound almost identical to me...diagnosed in jan but had blocked ear nose bleeds severe sinus pain and lung nodules in november. Lung biopsy proved gpa. Yes thankfully no renal involvement and...

Hi Gab

Thanks for your response and hopefully your treatment is going well. The pathogenicity of GPA is extremely complex and there are various models of what occurs. Most likely there is more...

Also do you know if colds or post nasal drip makes the stenosis worse? That is if I improve the post nasal drip would that assist with the stenosis?

Yeah...I see my ENT guy in a months time again so will probably wait until then and see what he says regarding if it has stayed the same, got better or worsened. Do you have to undergo a general...

Thanks so much for your response. My ENT was a little concerned whereas my immunologist wasn't overly. The ENT estimated about 40-50% but I don't have any shortness of breath at rest or...

Yeah ok thanks for your response. So is it possible that it stays the same? Odd my immunologist responded that it is possible that it resolves on its own. Not sure how though.

Hi apologies firstly if this has been asked in the past but Im currently in remission with WG according to my dr but noted to my ent that at times when i do heavy exercise i wheeze a bit. He had a...

Great read...shame the trial didn't work. Yes immunology is complex whats more what occurs in one person may be different in another same with drugs. The problem with cytokine targeting is its...

Wow alot of questions alright and like most scientists don't know the answers to alot of your questions. The question relating to what cytokines cause neutrophil and monocytes too by the way is again...

Marta yep keep questioning things unfortunately targeting neutrophils is not the answer as noted in my previous message. As someone else mentioned prednisone can also cause increase in neutrophils....

Ok marta your epiphany is what drives scientific research. As some of you may know I am a pilot by trade but I did my PhD in Immunology particularly in the area of cytokines so I know a bit or two on...

Oh dear...when was your last ritiximab infusion?

Sent from my SM-G900I using Tapatalk

Hmm thats interesting...so do you still get pain in ears when flying? Yes I suspect conductive with eustachian tube dysfunction too...ive heard varying success with a device called ear popper that is...

Very informative thanks Max...out of interest did you have ear involvement? Im having an auditory assessment today to determine if conductive or not.

Sent from my SM-G900I using Tapatalk

Jaha
Yep Im in the same boat. Ritiximab in feb and my neutrophils and lymphocytes are elevated. Immunologist told me most likely prednisone in my case elevating them. Remember theres more to just...

Hi all well it has been 3 months since diagnosis and treatment now. Just to remind you all how I got diagnosed. I started with sinus pain in Sep last year which worsened to the point where I was...

Yeah I guess thats one blessing in disguise of this sh*tty disease

Sent from my SM-G900I using Tapatalk

Pretreatment I had excruciating teeth pain along with sinus pain as I know many of you have/had. All that pain has gone thank goodness since treatment however I now have really high sensitivity to...

Nose is no longer crusty...just a bit mucousy...crp only slightly elevated and wbc total has gone down slightly just that the lymphocytes have increased. Neutrophils stayed the same being slightly...

Yeah not much seems to come out hence the in frequency yet i can can hear it...maybe i need to increase it

Sent from my SM-G900I using Tapatalk

Yeah i do probably every 3rd or 4th day. I get temporary relief but then fills back up again

Sent from my SM-G900I using Tapatalk

Yeah feeling ok...apart from mucous in sinus and blocked ear but otherwise pretty good

Sent from my SM-G900I using Tapatalk

I just received my blood results which is about 8 weeks after treatment. I have a slight crp increase from 3 to 11..is this anything to worry about? Interestingly enough my white blood cells have...

Hmm ok..for some reason my ent specialist doesn't want to put them in.

Sent from my SM-G900I using Tapatalk

Thankfully only one ear is affected but hearing aid not really an option if I wish to pursue my occupation. Is grommets an option?

Sent from my SM-G900I using Tapatalk