I’m new, confused and looking for support

[Pop_pop20]

Hi there, I’m new to the vasculitis group. What brought me to you guys is a possible diagnosis of GPA.

Long story short I was attending my endocrinology consultant appointment for a follow up but informed him of these ongoing symptoms. Thinking these were due to a poorly managed endocrinology condition but my consultant and his colleague have a strong suspicion that I may have GPA.

Ive had the following symptoms for over a year - these symptoms are; frequent multiple mouth ulcers (some very large), blocked sinuses/sinus pain a lot worse in the morning, rash on my face mainly around nose (which I thought was like a dermatitis or acne, i never really had acne, even as a teenager! I’m 33 now!), fatigue, frequent sore throats, livido reticular on legs - they go purple!, a weird goosebump sensation -randomly, abdominal pain, constipation, random ringing/ crackling in ears. Also recently a tight sensation in throat and chest - feel out of breath but not gasping for air (does that make sense). Notice a pain in between my shoulder blades at times when this happens. Also have backache, a lot of the time lower. Also noticed a burning sensation in my feet. My appetite has gone. I dipped my urine a while back and noticed a level of protein but didn’t think much of it.

I have SO many questions and no one to ask yet so hoping you guys can help.

Do my symptoms in you guys experience sound like a possible GPA?

Can your symptoms be worse and ease off to a point and flare up again? My symptoms never really leave but say some days I notice my sinus’ are bad but I may not have mouth ulcers on the go. Or I have 6 mouth ulcers but my rash seems not quite as wide spread. Does that make sense? Or did before diagnosis your symptoms consistent all the time and gradually always get worse?

I haven’t had relief of all symptoms for over a year, and I’ve noticed I’m getting more and more symptoms.

Anyone else experience the tightness in the throat and chest/breathing issues like what I’m experiencing? I’m just wondering if it is a symptom or am I just stressed with everything that’s going on.

Were you all strongly ANCA (is that right) positive?

The doctor mentioned a skin biopsy, but as mentioned sometimes my skin is really bad but it may settle a bit for a few weeks then flare again, so afraid this might not work out to plan. Anyone else had a biopsy?

What is the treatment options?

Can it damage nerves?

Anyone else have a rash on their face? Like a red raised spots and dry crusty and weeping areas around nose?

Anyone have new acne with it? That’s if that is what it is. Red raised spots very similar to acne mainly centre of face, does migrate out less severe. Sometimes in hair line.

Are there any centres of excellence for this condition in the UK?

Is there anything you advise I do whilst waiting for my Rheumatology appointment? As I see this can take up to 8 weeks ☹️

Any other advice very much appreciated.

Sorry for my long winded post. Thank you so much for reading. Here’s to getting my life back.

Lynsey

[Chezh]

I don't have GPA myself so unfortunately I can't answer most of your questions.

I'm sure somebody else will be along soon who can advise. But, in the meantime I would contact the Vasculitis helpline who will be able to help further.

Cheryl

[Pop_pop20 in reply to Chezh]

Thank you so much for taking the time to reply. I have sent them an email. Hoping to get some answers soon. 🤞🏻

[Nadine99]

Oh such a lot to take in and so many questions. Have you been to the Vasculitis UK site, it may answer a lot of your questions. There is also a help line to ring. Quite a lot goes on on Facebook, Vasculitis UK. It'll be a long journey but there's lot here to travel with you.

[Pop_pop20 in reply to Nadine99]

I wasn’t aware of it but I’ve had a look around. It’s a great resource. I think my mind won’t settle until I get some answers from a professional. Unfortunately it’s a waiting game at the moment. Thank you, I really appreciate your support. Means a lot.

[AmyS1]

Hello talk to vasculitis uk helpline to find your closest specialist centre. Chest pain can be due to different symptoms. Not all vasculitis do you have a positive ANCA test. Your GP can do an ANCA test while you wait but you and your GP need to know that there are many forms of ANCA negative vasculitis. Symptoms can come and go. You may have an overlap of different types of vasculitis. Do you have any issues with your eyes?? All your symptoms could easily be due to vasculitis. Good that you see a good consultant. Make sure that your Rheumatology appointment is with a vasculitis specialist centre or it will be useless.

[Pop_pop20 in reply to AmyS1]

I have emailed the vasculitis UK helpline asking where my closest specialist centre is. What are the waiting times for these do you know?

Not really dry gritty eyes at times and find when I’m tired I can’t seem to be able to focus properly. No infections or anything picked up by my optician. Thank you so much for your help, I really appreciate it.

[Chipper03]

I can’t add much to the advice already given, to use Vasculitis helpline and see a consultant. I had sinus issues, mouth ulcers and rashes and ended up with diagnosis of EGPA. I had asthma like symptoms as well. Blood tests will show if your eosinophils are raised and this was one of the details the consultant took into account. Hope you get answers from your health professionals soon.

[Pop_pop20 in reply to Chipper03]

Sorry what is EPGA? Ah ok, I’m waiting for blood tests to come back. All this waiting around is driving me mad, it’s only been a week! 😖 Thank you so much for your support and help. I really appreciate it.

[Chipper03 in reply to Pop_pop20]

EGPA is eosoniphilic granulamatosis with polyangitis (what a mouthful!), just the eosinophils bit extra to GPA. It used to be called Churg Strauss Syndrome. Lots of differing symptoms but as far as I can tell always has a respiratory element.

[Pop_pop20 in reply to Chipper03]

It’s so complicated isn’t it! My heads just bursting with everything. The sooner I know my blood results and see someone the better. My heads just spinning.

[Mooka]

Hi. I’m sorry you find yourself here but welcome anyway. Do go to the Vasculitis U.K. website and ring them for advice on a specialist clinic. You need a diagnosis and to start treatment as soon as possible as damage can be done in the meantime. Our symptoms are all different even if we have the same type of Vasculitis and most of us have to wait a long time to get a diagnosis. Don’t expect too much advice from your GP as many haven’t come across Vasculitis before. Most importantly come back here and ask your questions and let us know how you are getting on. Good luck.

[Pop_pop20 in reply to Mooka]

I will do. The waiting is the worst. I feel like things have been getting worse quicker these last few months. So anxious to get things sorted. Thank you so much for support and your kind words.

[kitkatmum]

Hello, can’t really add more than what others have posted. My GPA was diagnosed in November after being ill for weeks with sinus and ear infections, ears badly, coughing up blood, weird skin lumps that oozed and bled, weeks of different antibiotics did nothing and I had endless blood tests with GP. Only after two weeks in hospital and further blood tests did I get diagnosed so still new to the whole world of Vasculitis , GPA and autoimmune issues. My consultant referred me to Professor Bruce at Manchester Kellgren Center who I see in March . Don’t know if that’s of any help but I have definitely found this site and Vasculitis UK really helpful. All the best with your GPA journey.

[Pop_pop20 in reply to kitkatmum]

Thank you kitkatmum for sharing your story with me. I’m so glad you have your answers now and being referred to specialists who can manage your care the best. I hope you get some relief very soon. I’ve had a look around the vasculitis UK page, it’s really helped me get my head around a few things. I don’t think my mind will settle until I see a specialist but I understand these things take time. Take care. Thank you again for your support.

[kitkatmum]

You’re welcome and I hope you get the answers you need. It definitely takes time waiting for tests, appointments etc and this can be frustrating. I’ve found it hard when people say oh are you ok now? Having to explain everything. I say it’s like a rollercoaster, I don’t know what kind of ride it’s going to be and that’s scary but all I can do is wait for now.

[AmyS1]

Do phone the helpline number as talking may be beneficial.

[Pop_pop20 in reply to AmyS1]

I will do. I’m awaiting blood test results, so would like to phone once they return. As they may come with 101 questions. Thank you.

[jane1964]

Hello I have a diagnosis of vasculitis but it took years and a number of rheumatologists because my symptoms were unusual and I have a complicating other autoimmune disease.My ANCA was positive with MPO as well and a markers of inflammation CRP was also raised but none of these blood tests were that high apparently.I had episodes when I was worse and some times less bad but over time this increased to almost always being ill.My symptoms were widespread severe muscle pain swollen joints tendons vasculitis like sores on my fingers and burning feet.I also get rash/sores around my nose and episodic red eyes .Before my diagnosis I had the following misdiagnosis fibromyalgia from a rheumatologist, chest infection from an out of hours doctor, gout from a rheumatologist.These conditions are complex and other conditions like betchets, auto inflammatory conditions and a number of others were also considered before I was diagnosed you need a good experienced rheumatologist and to keep notes of every symptom with photographs were possible.I hope you find someone to help you.I am on treatment now and so much better.

[Pop_pop20 in reply to jane1964]

Hi Jane, thank you so much for sharing you’re story. I’m so glad you have your diagnosis and are feeling better.

You start to think your going mad with all the different symptoms and clueless doctors faces looking at you!

I really really really hope I don’t have to wait a few years for a diagnosis. I don’t think my body will hold up that long.

Thank you for your tips. I’ve been taking photos and keeping a symptom list as this definitely helped me get this far. Thank you again and take care.

[Dave-evans]

Hi gpa can be a scary place with everything it can throw at you ! The main priority in my experience is your medical support group being the best you can get. What area of the UK are you ? Maybe someone on here could recommend a consultant in the area as you can then ask your gp to refer you to them ? I know it's very worrying but managed effectively you will surprise yourself what can be done even living with something like this. I've had many ups and downs shall we say ! But am still here doing what I enjoy doing after 29 years of living and fighting with gpa the important thing is ask for help when your body needs it !! Don't wait for your mind to second guess your body as i and likely many others on here have tried and failed that approach!! Good luck and listen to your body even if people around you have doubts .

[Pop_pop20]

I live in the north east of Scotland. Vasculitis UK page has informed me of a vasculitis clinic in Aberdeen which is close by.

I can’t help but second guess everything, as so many doctors have made me feel like I’m crazy, or depressed or a hypochondriac. Thank you for your words of support, I really appreciate it.

[Dave-evans in reply to Pop_pop20]

My gp had over 25 years experience and was formally ent trained and had only met 1 person with GPA in his career before me ! A lot of doctors know little or nothing at all about this condition which in turn makes you feel this way. Many and probably most of us have or still feel like this I know I do if I meet a new doctor who has no experience with it. Keep your chin up and just trust your own instincts and if needed insist on seeing someone with experience.

[JGK99]

Manchester Royal and Addenbrookes both have specialised units for Vasculitis and your Rhuematologist can refer you there - good luck !

[Suzym2u Moderator Vasculitis UK]

Please do contact the VUK helpline. At Aberdeen you can ask for a referral to Dr Fluck or Dr Kidder.

[Theidealistrealist]

That's alot of questions, my two cents.

They can all flare up and down, you can try and figure out why, but you may be driven mad!

I have perfect bloods and blood pressure everytime. (I have PAN).

If you're new to all this, within reason, Google holds lots of answers.

8 weeks can seem a long time... It isn't, focus on doing a food diary, symptom diary, almost a synopsis of how it all began, was there a trigger etc... I ended up emailing all my through to my consultant before meeting

[Collie21]

Hiya,

Just reading your long post and it sounds nearly identical to me over a year ago now in September 2019!

Whole host of weird symptoms like yours for 3 months before I luckily got seen in a rheumatology clinic and admitted, diagnosed with GPA 3 days later (a lot quicker than most people it seems so I feel blessed in a way!) Reading your post reminded me of how anxious and stressful and dark this time was- but be assured when diagnosis and treatment begins you feel worlds better quite quickly.

Fast forward to now and I am in remission already :), with the only real damage being a small hole in my nose (my GPA started with an infected nose ring that then never healed and has left a permanent open hole) which I am having closed. Slight breathing issues due to narrowed airways from scarring from my illness, but this is being treated soon! 5mg of steroid which I barely feel, and lost a lot of my steroid weight as my strength has returned!

I know I was super lucky to be seen quickly and so this illness has not impacted me in the same way as other people on here, but I just wanted to share my situation with you, so you know you are not alone- and there is always light at the end of what feels like a never ending road of stress and anxiety.

Stay positive, your life will come back to you, mine did