GPA flare sinus pain

[nicholson27]

Hi,

My GPA has recently flared up quite suddenly with severe sinus problems. To be honest I was stupid and left it too long before recognising the symptoms and kept telling myself that the daily sinus pain and bleeding was just a cold as everyone seems to have one at the minute. By the time I asked for help my PR3 ANCA had jumped from negative to 29 so a flare it was which led to a week in Addenbrookes on IV methyl prednisolone infusions followed by a gram of rituximab last Thursday.

As the GPA took so much treatment with cyclophosphamide and rituximab to get under control the first time around, my IGG is so low that I will now need to go on immunoglobulin replacement.

I am aware that rituximab takes time to work and have another infusion scheduled for next week but in the mean time I am finding the nightly sinus pain pretty unbearable and was wondering if any other members have had similar experience and might offer any advice or treatments that may have given them some relief?

I am on 40mg prednisolone a day which is clearly not controlling this so I try the usual things like steam, nasal washes, heat packs and pain killers such as paracetamol but little effect. As I’m on apixaban I don’t think I can take ibuprofen.

Any help gratefully received.

Thank you.

[Suzym2u Moderator Vasculitis UK]

Have you had a chat with Stella the specialist nurse at Addenbrooke’s - there maybe alternative pain killers available while it is settling???

[AmyS1]

Speak to the specialist nurses at Addenbrookes. They are always very helpful on the phone. They should be able to give you some good advice. Hope that you feel much better soon.

[foweraker in reply to AmyS1]

Sorry to hear your news, its a lesson to us all to listen to our symptoms and act upon them, I too was diagnosed 10years ago with limited Vasculitis affecting my sinuses ear nose eyes throat.

I was on 60mg of steroids when diagnosed as like you the pain coming from my sinuses and nose was unbearable. After trying many different treatments Rituximab finally bought my disease under control. I have been in remission for 5 years and off steroids for 3years.

I am always worried when I feel old symptoms coming back especially the old symptom of pain from the side of my nose.

The bridge of my nose collapsed before I was diagnosed and have only had my nose reconstructed a few years ago since being in remission.

I often have to be referred back to the ENT department at Addenbrooks to make sure there are no signs of disease activity.

This has happened several times.

I have also been put on antibiotics too, several times If I feel that my nose symptoms sinuses do not feel right.

Mainly as Im so scared of my nose collapsing again as there is always that risk.

Have you had a sinus flush in the past?

Do request an urgent appointment to see the ENT department if you haven’t already. wishing you well!

[foweraker]

Hi I replied to your post but sent it to Ami S1 by mistake, hope you can find the reply

[Mooka]

Hi I also suffer from ostrich syndrome (burying my head in the sand hoping it will go away). The only thing I can add to the sinus wash, steam and steroid spray is I was prescribed budesnide by ENT which is a steroid. I have put the drops in my nose and also the sinus rinse. Do ask for an urgent referral to Mr Marcus Martinez Del Pero. I think he’s at addenbrookes once a month but he’s based at west Suffolk and will sometimes see patients there or at Thetford. I hope you get some relief soon.

[Lauriescott1]

I have Wegeners Vasculitis (GPA) diagnosed in 2010 & imuno suppressed however my condition affects my joints rather than head/ sinus although it sounds as if our medication is similar.

I was started on cyclophosphamide & prednisone for 18 months then moved onto Azathiaprine, considered a less "dirty drug" - 2 years ago I started 6 monthly Rituximab infusions at which theme I stopped taking the Azathiaprine & started reducing my steroid Prednisolone intake - The Rituximab infusions, which take around 6 weeks to kick in, have worked well for me having had less flares in that time.

Since being diagnosed I've had several flares although, in my case, ther're easy to detect as I portray flu like symptoms, become very legathic, & show a rash to my legs. These occassionly require admission to hospital as the pain to my joints, legs, is such that at times I can't physically walk.

These are generally treated with steroid drips & ultimately increase to daily tablets - Been as high as 60mgs a day down to 5mgs however I recall that they used to prescribe 24/7 paracetamol with Tramadol to help keep the pain in check.

Hope this is helpful & you get some relief soon.