Granulomatosis with polyangiitis and nose bleeds

[Wyllow]

Hi everyone, I am new to the site so please forgive me if this question has already been asked and answered. I have been suffering from various symptoms for just over a year and was diagnosed with Vasculitis - Granulomatosis with polyangiitis in mid 2021. I am still finding it very hard to come to terms with the fact I now have a lifelong condition that could get worse or better at any point, and am on many strong medications. My question is: my nose bleeds every time I blow it and it has done for months, I bring it up at most every doctors and specialist appointments. Has anyone with GPA experienced this and does it ever improve or does it just get worse? And has anyone had any treatment for it that works?

[Grizzly-bear]

I was also diagnosed mid last year and my nose bleeds have only just stopped. Before I started treatment (Cyclophosphamide, Rituximab and Prednisolone - I went into renal failure amongst other things which is why this combo was selected) my nose was constantly streaming and bleeding and I couldn’t smell anything or breathe through it. After starting treatment I was able to breathe and smell but the bleeding took a long time to stop and sometimes it still feels sore under the bridge of my nose. For me personally this is a huge improvement to what it was like but my symptoms definitely haven’t completely resolved. I also still have a whooshing sound in my ears and tinnitus, though I think these could be due to permanent damage after years of the condition not being recognised.

If you’re not seeing any improvements from when you were first diagnosed then I would talk to the consultant about maybe trying a different treatment option or adjusting your dosage. Everyone seems to be different with how this disease affects them so I think it’s important to set your own benchmarks for what good looks like for you and to communicate with your consultant when your symptoms are worrying you.

I’ll be starting azathioprine as my maintenance drug soon which I’m pretty nervous about as much current treatment has improved things so much I’m nervous to switch.

[Wyllow in reply to Grizzly-bear]

Hi Grizzly-bear, thank you so much for your reply. I hope your new treatment goes well and things continue to improve for you. I have another appointment soon and will bring it up again. I have various issues due to GPA but my nose has been a constant - I'm glad to hear it can improve slightly. It is always blocked on one side as well as the bleeding - complicated by a deviated septum. Best of luck with your new treatment, Wyllow

[Grizzly-bear in reply to Wyllow]

I hope you can find something that works for you. I think part of the problem with sinuses is that so many people with GPA go undiagnosed for such a long time that reversing the damage, or working out what might be permanent, takes a long time. I had sinus problems for 5 years before diagnosis which is why I think the issues I have now are potentially permanent but who knows, maybe they’ll improve over time!

Best of luck to you and sorry you joined the awful vasculitis club. I find this site incredibly comforting though I wish others didn’t have to suffer through it too.

[Wyllow in reply to Grizzly-bear]

Thank you, it is an awful club to be part of! I too have suffered for many years with just sinus problems, but then the progression to GPA and it's many symptoms. I'm glad I have found this site too, but as you say, it's a shame people have to go through this disease. It's the not knowing what is going to happen next that gets to me the most.

[Nadine99]

My husband has had GPA since 2010. Nose bleeds were one of the biggest problems to start with but have abated now with all the medication. A lot of people use a NeilMed bottle, to rinse out your nose. Check it out on the internet. You can also look at Vasculitis.org.uk website for a lot of help or come & join the FB pages.

[Wyllow in reply to Nadine99]

Thank you Nadine99, I haven't tried the NeilMed bottle, I use nasal sprays and Sterimar, but will give it ago, I go through phases of being able to breath properly but I always know it won't last more than a few hours as my nasal passages soon fill up again and the more I blow the more it bleeds. I am finding out more and more about GPA, thank you for the tips. When I discuss GPA and its many symptoms with my small family they try to be sympathetic but nobody has heard of it or come across it before, I hadn't until I ended up in hospital.

[Nadine99 in reply to Wyllow]

Vasculitis UK has some leaflets they can send you to give to family & friends

[Wyllow in reply to Nadine99]

Thank you!

[Main1234]

My OH has GPA and when he had a flare 2 years ago he had nose bleeds and hearing problems. His medication was changed to RTX and MMF and the nose bleeds have stopped. What medication are you on at present ? Are you on drug induced remission?

With treatment and a good consultant you will be able to get your vasculitis under control and have a “new normal life”

It can take a long time to come to terms with a chronic illness but you will get there.

Remember knowledge us power.

[AmyS1]

Nose bleeds can be a feature of GPA. Call the helpline and check that you are being seen at a vasculitis specialist centre.

[Investigator1]

Hi Wyllow. Loads of good advice here.I wasn’t as severe as you with nose bleeds just blood when I blew my nose. I think Main1234 is about spot on, it will get better to the point your life is little different but becomes the norm. It’s not all doom and gloom. There is a certain satisfaction dare I say in improving and calling the shots yourself.Difficult now for you but hang in there. Nick.

[zoe69 Moderator Volunteer Vasculitis UK]

I have GPA with nose involvement. Nose bleeds were one of my main symptoms when I first got diagnosed, but they stopped when I had the initial treatment (6 cyclophosphamide infusions and high dose of steroids). I occasionally get some blood when I blow my nose, but no nose bleeds anymore.

Have you been referred to ENT? Does your specialist think that your vasculitis is under control? May I ask what treatment you have had?

It is overwhelming to get diagnosed with a serious chronic illness. It took me a long time to accept it and I can admit that I haven't totally adjusted to my new norm- 6 years on, I still occasionally plan to do things and then realise it is impossible to do them in the time schedule I have planned. I sometimes push through, but I pay the price - getting fatigued for days.

On a brighter note, I have a very good life. I work, I have a social life. I travel. I just had to slow down, do a bit less and accept I cannot do things nonstop anymore. And that some days are worse than others.

[Rodelinda in reply to zoe69]

Agree with all the above. My nose bleeds have finally almost stopped after 8 years. I’ll occasionally get a bleed and think - am I doing too much? I still have tinnitus and occasional blocked ears but otherwise life is normal. You will get there.

[Wrigglymonkey]

Hello, I have Vasculitis and PML I have had nose bleeds to the extent that ENT did some surgery to close off a tiny artery in the nasal cavity but I found that the best thing was to keep the inside of the nose moisturised with Vaseline. The ENT consultant told me to put a small blob on the edge of the nostril and massage from the outside to work it in two or three times a day. It worked and the bleeds stopped. Good luck and let us know how you get on.

[Wyllow]

Thank you so much everyone for your replies, it's great to know there is support out there, I have felt very alone for the past 6 months since diagnosis. I am on Methotrexate, Prednisolone, Mycophenolate Mofetil, Rivaroxaban and a few others. My ANCA readings were at the highest level for 5 months but have been reducing lately. I see the specialist every few weeks for reviews. I will ask if I should be referred to an ENT at my next appointment. Best wishes to everyone!

[eh66]

To start at the end; Yes there is always hope with this condition. I am in remission from ANCA. I was wheeled into hospital just over a year ago unable to walk with skin, eye, joint and kidney complications, since then I have had 2 kidney biopsies, multiple Cyclophosphamide, Rituximab transfusions, but I am now off Prednisolone. I still have to take daily statin, blood pressure and low level antibiotic.

I had nose bleeds and found like someone else mentioned saline nose washes help a lot - I got mine from Amazon.

I suspect that my recovery is combination of severity of condition, precondition fitness, diet (plenty of fresh fruit, veg, live yogurt, fibre), and daily exercise. I have since March 2021 managed over 3000km walking and cycling. For me the exercise helps me mentally as wall as physically. I still have bad days but you don't beat yourself up over them, and do what your body will let you.

Use this forum and Vasculitis UK website, ask your consultant lots of questions - I usually go with a written list.

So to end as I began; Yes there's hope, but I think you can give your body a helping hand.

[GPASufferer]

Hello from across the pond Wyllow. So sorry to hear of your diagnosis. I was diagnosed in 2017. Yes, I also had spontaneous nosebleeds. Since my GPA primarily affects my sinuses, nose and ears, I see an Ear Nose and Throat (ENT) doctor here. He prescribes Budesonide, a nose wash. I’m not sure if it helps or my other meds kicked in, but my nosebleeds have lessened in frequency.

Here in the U.S. this disease is so rare it seems doctors don’t want to admit they “don’t know” so they brush over symptoms. So glad for this forum because I now know I’m not crazy and this is a real disease. Hope you find the treatment that works for. It seems to take a while but once you find that sweet spot things will be brighter. You will find the balance you can live with between the GPA symptoms and the side effects from the medicines.

Just a side note and FYI for anyone reading this - I recently saw a graph of my blood levels and my worst long flare DIRECTLY correlated with the most stressful time of my life. My blood levels shot straight up. I think for me this disease came on from emotional turmoil and stress.

Take care of yourself and carry on. There is light at the end of the tunnel! You will get there.

[Wyllow in reply to GPASufferer]

Thank you for your words of encouragement. I too suffer from stress and anxiety and have done for many years. The GPA diagnosis, symptoms and meds are definitely increasing this. Every time I see a general doctor I have to explain my GPA from the start as I can never get to see the same one as this is how the practices work in the UK, so this leaves little time for any new symptoms and they usually just tell me to discuss the problem with my specialist. Luckily he is very good! Hopefully he will refer me to an ENT specialist. I wish you all the best and good luck with your condition and stressful situation.

[Budapest]

I have GPA Vasculitis which mainly affected my upper airways and damaged my R nostril. I had nose bleeds prior to diagnosis in 2011. The bleeds stopped when I started Steroid treatment. I still get blood spotting & soreness in my R nostril; I treat this successfully with Vaseline (see WrigglyMonkey above) & a steroid nasal spray &, also, a nasal rinse. All these treatments were suggested/prescribed by the Vasculitis Unit at the hospital which I attend regularly.

[citygirl1234]

Hi, I also have GPA and used to have nose bleeds. My rheumatologist referred me to an ENT colleague who also specialises in vasculitis, and they helped me get it under control. They prescribed NeilMed sinus rinsing (which is kind of a gross concept but really does work) and an instranasal steroid spray which seems to do the trick in combination with the general treatment which my rheumatologist is in charge of. I sometimes have the occasional nose bleed during the summer as I have a fairly bad grass pollen allergy, but generally they’ve stopped now. Ask your vasculitis specialist if they can recommend a colleague in ENT - ideally you want to be seen by an ENT who is familiar with GPA and will work with your other specialists. My ENT has an MDT meeting with my rheumatologist every month where they talk about all of their vasculitis patients

[Bassace]

I have vasculitis and get nose bleeds sometimes. It comes and goes over time. When I start worrying about flare ups I think about the worst time a couple of years ago when I got nerve damage in my legs and a droopy eyelid. Sometimes it’s very difficult but try to be grateful that your symptoms are not as bad as they could be and live your best life every day, because it’s a gift.

[Wyllow]

Thank you to everyone who has commented, there are lots of tips for me to follow. I will definitely give them a go and speak to my specialist about a referral to an ENT who will hopefully also know about GPA.

[surreyjoe]

My first indication something was wrong was a 20 minute bout of sneezing. I was told that, as the sinuses are full of very small blood vessels, GPA appears here early on. My bleeding arose because my sinuses became dry and crusted and would bleed when I blew my nose. It was miserable for a very long time. I tried steroid spray, but my GP gave me a thicker liquid in small plastic sachets that you put in when your head was upside down. This really coated the sinuses and settled them down ( can't remember the name but I'm sure a doc will know ) I also used the Neilmed bottles with the salt and bicarbonate powder sachets twice a day. This really moistened the sinuses and got rid of the crusting. I maintained this by going to once a day. Now I only use it infrequently if needed. Please run this past your doctor though before trying.

[Wyllow in reply to surreyjoe]

Thank you surreyjoe, that's another good tip for me to try, my next apt is very soon so will bring it up with my specialist. Best wishes, Wyllow

[Dangee]

Hi Wyllow. Don’t worry, you’re not the only newby on here. I’ve got diagnosed with GPA in December. A year ago I went to Moorfields as I had started losing horizontal movement of one eye. Turns out the eye is fine but my socket has a hole in. Personally, after a horrendous year (as I’m a bit vain) I’m just glad it’s diagnosed & I seem to be in very good hands with very rapid appointments. I’ve been transferred to the Royal Free at the minute. A Dr Simon Gane who does 2 days a month at Moorfields picked up on me & has taken control of the way forward. As soon as he saw me he immediately put me on steroids & a steroid nasel spray & told me to twice daily flush with the NeilMed bottle. I’ve got my 1st IV infusion tomorrow (the one beginning with R? ) & another in 2 weeks. I have no idea currently what happens after this, everything is happening very very quickly. Unlike everyone on here, my condition was unknowingly self inflicted (cocaine use). I can’t dwell on that now, it is what it is.

Apparently Moorfields are forming a plan going forward regarding having some sort of flap to reform the eye socket then the eye can be straightened (yeah, great year I’ve had! I didn’t even want to leave the house for months) sort of got used to it now. I need a nose reconstruction & it seems to have recently (over the last couple of years) eaten away parts of my top row of teeth!!.

I’m very lucky to have a beautiful loving wife. (Who said what 1st attracted me to her was my dazzling smile & bright blue eyes) Damn I want this resolved ASAP but I know I’m in it for the long haul.

Anyway Wyllow. Thinking of you & remember….. it could be worse!

[Wyllow in reply to Dangee]

Hi Dangee, wow you have had a terrible time of it and more to look forward to! I’m glad your case seems to have been picked up by good specialists. My nose still bleeds every day but l haven’t been told I have to have any operations yet, still hoping all the medications keep my GPA stable and things don’t get any worse but who knows. All the best, Wyllow

[Dangee in reply to Wyllow]

Thanks Wyllow. 1st infusion tomorrow 8am!!! I called the vasculitus “helpline” today & the women I spoke to said the consultant I’m under is really really good. It’s reassured me. It’s all new to me… Wyllow, I always linked the nose bleeds with my “habit”. Have you tried the NeilMed bottle thingy? It actually really effective. Not pleasant, but I suppose I’ve stuck worse things up my nose in the past!

[Wyllow in reply to Dangee]

Good luck for tomorrow, I hope it all goes well. I use Sterimar and steroid nasal spray, still haven’t tried NeilMed I’ve read it can cause infections which put me off but lots of people here recommend it so probably should give it a go!