Annie

[poppet2]

Hi fellow sufferers. I was disagnosed with Wegeners GPA in June 2014 after suffering bad joint pain, swellings etc. for a couple of years and then 12 months or so before diagnosis it progressed with mega sinus problems, face and headaches and then hearing loss in both ears. Since then I have had grommets inserted in both ears on two occasions and the normal treatment of cyclophosphomide and prednisolone. Since August I have been taking methetrexate and am still on 10 mg of pred daily. However I have been having some blood loss from my nose since on the methx, at first just 1/2 weekly, but this week 1/2 daily and am wondering if anyone else has had this reaction? I am wondering if it is a reaction to the methx or just coincidental. I am due to see my rheumatologist again in 2 weeks and obviously will inform him.

[Hidden]

Hi, I sometimes still have nose bleeds. I have GPA since 2013 and I have been told I don't currently have any active vasculitis in my nose, it was checked about a month ago by ENT to make sure.

If you're getting nose bleeds that frequently you definitely need ENT to check yours and tell your rheumatologist about it.

I hope you get it sorted out soon.

[PCAD in reply to Hidden]

Agree completely. Nose bleeds are one of my on and off issues (no pun intended). An ENT consultant with Vasculitis experience would be the best option. But definitely push your Rheumy for referral.

[poppet2 in reply to Hidden]

Hi. Thanks for your reply. Bleeds seem to have eased off a bit now, only one in last 4/5 days thank goodness but I will inform the rheumatologist and ENT doc next week and will post again to let you kn.ow how I get on. Cheers

[Samcar]

Hi Annie, I too have Wegener disease. The bloody noses are a recurring problem. Be sure to see your ENT and rheumatologist so they can make sure that you're not having a vasculitis flare up. If you've had the heat on at home your nasal passages are probably drying out too making you more susceptible to bloody noses. Try using cool mist humidifiers in you home, especially the bedroom and living room. Also nice showers to get some steam into your nasal passages are also beneficial as is using a saline nasal spray. Let us know how you're doing.

[poppet2 in reply to Samcar]

Thanks will keep that in mind.

[John_Mills Volunteer]

Hello Annie,

The bleeding from the nose suggests that the WG is still not fully controlled. It will not be the mtx that causes bleeding. Do certainly tell your rheumatologist. I presume he/she will have some recent blood results to look at. If these show an upward trend in ESR, CPR or ANCA that would confirm that the mtx is not doing an adequate job.

John

[poppet2 in reply to John_Mills]

Hi John. Thanks for your reply. I am seeing rheumatologist next week so will keep you posted. Things seem to have improved a bit anyway, but hopefully he will check bloods etc. then. Best wishes, Ann.

[poppet2 in reply to John_Mills]

Hi John.

My rheumatologist did these blood tests last week, not sure how long it may take to get the results. He seems to think the bleeds maybe due to Avamys nasal spray I have used for 18 mths or more so have stopped using it and still wants me to start reducing pred after xmas. ENT have told me to use a nasal rinse twice daily which I am doing along with a nasal antibiotic cream. Since starting this last Saturday I haven't had any more bleeds (despite having 3 in 12 hours after coming home from ENT) However I immediately started with bad sinus symptoms -nose very stuffed up especially at night with some head and face pain. I thought I would wait a few days now to see if it improves or not before having to see my GP again! I try to think positively but sometimes it can be hard.

Thanks for your advice, Ann.

[John_Mills Volunteer in reply to poppet2]

The sinus pain/stuffed up nose are classic signs of active Wegeners. Are you still tapering the pred?

[poppet2]

Hi. No, I've not started reducing the pred. yet - I was advised to start after xmas, so am still on 10 mg daily, then due to reduce to 7.5. Today I have been to see GP and been given some Doxycycline antibiotics in case it will help along with co codamol. So we have decided leave off the nasal cream and rinses for now and give the doxycycline a chance, but at least I haven't had any more nose bleeds.

If I haven't seen any improvement before the new year I think maybe I will try and contact the rheumatologist to see if he has ANCA results before reducing the pred.

Do you have any idea how long results of ANCA blood tests can take?

Regards, Ann.