I originally had an Ent appointment . Then all of a sudden I have an autoimmune disease and multiple tests and treatments. I'm on steroids that gave immediate side effects I'm taking loads of tablets every day. Every letter that comes through my door has NHS written on it. I'm physically disfigured. I'm hardly leaving the house unless necessary. I already had depression now it borders on suicidal thoughts noone can tell me when this will be over and it gets harder and harder
Isolated: I originally had an Ent appointment... - Vasculitis UK
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Ellamaye
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You are not alone. You have done the right thing in joining us here, where we all have our stories to tell, and help each other through this mire. I have just woken up, so am not very coherent right now to write more. Hang in there and you will meet more lovely people on here soon. Best wishes for now from May x
Thanks for reply. I'm still navigating this site so no notifications and everyone seems to be from America. I'm gna keep trying to connect though...gotta do something
Go to email notification (tap on your avatar at the top right - scroll all the way up the page and your avatar will be in the top right corner with More under it). A menu comes up, 4th down is Email notifications - you can choose what you are told about by email.
This is a UK charity - but when the forums are good, they end up with members across the English-speaking world. The systems are different but the problems patients experience are the same. It is always a problem when you have a rare disease though and vasculitis is a rare disease.
You need to talk to your GP and ask for mental health support. Being diagnosed with a chronic condition that has no cure and requires long term management is a form of bereavement - you have lost the life you had before and the replacement isn't what you can call enjoyable or easy. In a year you will look back and see how far you have come - it sounds a long time but when you get there, it won't feel such a long time. However, in the meantime you need help to adjust, get your head around the changes and know how to deal with the hard bits. Tell the GP - a practice nurse will do if your wait for a GP is too long - exactly what you have said here,
There will also be local emergency mental health support teams, and the Samaritans provide a wonderful service that is there 24/7 at the end of a phone and online.
Mind is a great organisation
mind.org.uk/information-sup...
And this NHS page also lists options and where to ask.
nhs.uk/nhs-services/mental-...
This too shall pass xxxx
I can relate to you 100%
I know exactly what you’re going through and it is absolutely devastating.
I’ve had symptoms since 2021 then all of a sudden, like you. An appointment with ENT and now I have an autoimmune disease.
I have been diagnosed with c- ANCA vasculitis PR3. Lots and lots of test also picked up Osteopenia and Demyelination.
Again, like you I already had Depression and the steroids have made it 10x worse. I take so many tablets a day it’s unreal.
I’m here if you need to talk. I’m based in the UK (South) the Rheumatology department which I’m under isn’t the best. They don’t communicate at all. No one answers the phone. Replies to emails/phone calls. I can’t seem to get a repeat prescription. Zero. Nothing. I don’t even know what I’m supposed to be doing or what’s happening next. It’s very lonely and completely debilitating. The stress of trying to speak to someone or get some sort of support causes major flare ups which are just awful.
Stay strong. We can do this together.
Oh wow its opposite for me I feel overwhelmed by people ringing me up for this appointment and that blood test and as much as they explain I still don't truly understand. You know you have a right to choose your hospital ? so I think if your not happy with your care then don't settle.
You have a type of vasculitis? They just told me autoimmune problem then vasculitis.
I was supposed to have a surgery but can't because it wouldn't be successful because my immune system is attacking my healthy cells.
That's basically all I know as to why I'm suddenly on meds and visiting hospital all the time 😫.
Your right though sharing is good so any help I can be just ask 😊
You in Cornwall by any chance? The Rheumatology department there is absolutely awful ☹️
No I’m In West Sussex. I’m sorry to hear your experience is just as bad as mine.
It seems as though Rheumatology overall hasn’t got a good reputation for communication. I’ve complained to PALs. And I spoke to the manager of the department which went well. But while I was speaking to a nurse she hung up on me. So straight back to square 1.
I’ve had 2 prescriptions show up on the post this week. Neither which I asked for. And both different. No explanation as to what the meds are for or how to take them. So yeah. I won’t be 🙄
Yes I'm in Cornwall and know exactly what you mean. There is no way to contact Rheumatology - no one answers the phone, they don't reply to emails anymore. It's no good going through the secretary as there's no response apart from send an email to the 'team' which no one will reply to. The Monday to Friday 2hr Rheumatology nurse help line more often than not is not operational, that's if you can get through before getting cut off.If I have a problem now I write to the Consultant. I just hope there's nothing urgent......I have let him know the issues and have every confidence in his expertise when i do see him so at least that's something!
Have you contacted PALS?
I have contacted PALS in the past about something else but didn't get much of a result. In the end it saps energy with trying to get through the system.
Ah….I see Dr E and have absolutely no faith or respect for her. She focuses on the small stuff and ignores everything else. A consultant from another department who is also part of my care was furious that she has not followed me up. I had periorbital swelling and on my notes she put I had a rash on my face 🤷♀️
My bloods were ‘wrong’ for months before anyone contacted me!
I despair of the whole system here.
I hope you are ok?
"My bloods were ‘wrong’ for months before anyone contacted me"
That is why I always ask for numbers - not that I need to here, I get a code to log on to the lab results site.
I can interpret numbers too, I worked there once up on a time, and will always take a look at anyone else's to say they are OK or if you need to ask for an explanation. The computer flags anything outside normal range even if it is only 0.01 which is not usually a problem - but the uninitiated worry.
Hi Saltrock
Sorry to hear your experiences but all too common here. Good to hear from someone in Cornwall.
Regarding blood results, I am on a platform called Patients Know Best and the main results are put on here via RCHT. Originally I was on Patient View which was set up for me from the Renal Dept and now it's PKB. You can look up info on it and have a good idea about the results good or bad. They usually come up the same day as the blood test or the day after - very quick. I always check mine as I don't trust anyone to get back to me.
Regarding Depts, when I was diagnosed with GPA in 2016 I was under Rheumatology, Renal, Respiratory, ENT, Opthalmology (cataracts due to steroids) and Cardiology. Now I still come under all except the last 2.
Rhuematology has always been in charge of my case and have always had the same Consultant, apart from SHO's so have been 'lucky' in that respect. The Dept is very bad in making further appointments, as with other Depts, although I have found Renal and ENT to be very good. Respiratory are also very bad and I feel I've really had to push to get further appointments. I did complain to PALS but didn't get anywhere. Nowadays I know more what to expect regarding the effects of GPA but it can still be very frightening at times with no real support from anyone Medical apart from the designated reviews. It would be wonderful to be able to ring up a health professional when necessary and check whatever the issue is but I'm afraid it's not possible....Anyway I wish you well any feel free to contact again.
Hi I'm sorry your feeling so bad, but it does get better once they find the right treatment for you, I was diagnosed with GPA in 2018 but I had been suffering for more than two years before that, had all the test saw so many different Dr's all were baffled then sent to Norfolk and Norwich Hospital had a wonderful consultant who diagnosed me started Chemo the very next day and I really cannot fault the treatment and care I receive, hang it there once you get the treatment right for your body it will get better x
Hello Monicachandler.
Do not despair. This is the hardest part.
I have LV Vasculitis. I thought I would never see 'normal' life again.
I was treated at NNuH by a doc who has a special interest in Vasculitis. He was never afraid to answer my questions, and there were lots. The team were always there for me even at short notice if the was a problem.
It does mean you get a lot of appointments to begin with.
I have moved to the other side and been in remission for 2 years.
There are a few of these doctors around now and it sounds like you have one. Take care, seek support and just do what the doctor tells you. xxx
Hi Monicachandler. Please, please read what I have to say. I know how hard it is, most of us do but however bad it may seem it will get better. You have probably heard it loads of times before bit it will believe me. When I was diagnosed I was devastated, I couldn’t look forward but gradually you make little steps forward and yes I would be lying if I said there were not backwards steps along the way but you will deal with them better as time goes by. I found this forum by accident and it changed the way I felt about myself. We are all in it together and always will be and there will always be good advice from wonderful like minded people on here. You know where we are now and I can see you have had some fantastic advice already. Nick.
Thankyou nick and any help I can be to anyone just reach out
Hi!
The site Vasculitis UK has individual stories that might help you.
You are not alone in feeling fed up at times. I was very ill in 2018 with GPA Vasculitis and lived in our kitchen for five months as I could only manage the stairs to go to bed. Initially I could only come downstairs on my bottom! I could not walk to the end of the garden and could not get up from the toilet!!!
It took 5 months to get a diagnosis. No-one ever told me that I would feel well again and so I investigated walkers and asked my consultant about a Blue Badge. She said I would not need one. That was the only hint that I might get much better.
It takes ages to taper off the steroids but I have eventually managed it. I live a normal life and I am in remission. I have kidney and lung scarring so I will never be quite what I was, but you would never know it if you met me. I am just not as energetic as before.
Keep plodding along. It is a long journey, but gradually the number of pills will get less and you will see light at the end of the tunnel!
I live in Fife.
Take care!
It’s horrible isn’t it - I think most of us started our journey like yourself - the loneliness/feeling of isolation is the worst of it all I remember that feeling. It’s going to get better though, tell yourself that because it’s true, even though it doesn’t feel like it - have you joined the Vasculitis group on FB? It’s a UK group and it was a turning point for me, I didn’t find it until about 2 months after I was diagnosed and the support was amazing - and made me see that what I was going through wasn’t unusual and others could relate and advise me on lots of things, it was a relief to be honest to find them. I think it’s called something like “vasculitis support (UK)
Take the advice given and contact your GP or nurse, you need support right now, it always surprises me that it’s not offered automatically, it should be, but unfortunately I find myself chasing medical professionals for everything 🙄🙄. - Those NH S letters - they’re going to dwindle off - they really are!! They’re overwhelming aren’t they!! But they do eventually ease off thank god, (even your tablets will reduce somewhat over time as the steroids are reduced) it’ll be a new way of living for you but you’ll adjust (you’re already adjusting but it’s hard on your own) You’ll find your way though honestly xx
Thanks I had not realised there was a Vasculitis UK Facebook group... I'll head over there now.
Everyone here has offered you a lot of encouragement because it really does get better. The side effects of the steroids will reduce as you reduce the dose. Do you have a good doctor with knowledge of vasculitis? If not find out where there is one and ask your GP to refer you. The vasculitis U.K. helpline can help you with this. I’ve had vasculitis since 2010 and don’t take any medication for it. I’ve picked up a few other problems on my journey but I can deal with them. Do ask for help with your depression and come back here to let us know how you’re getting on. Take care of yourself.
Like you Monica i went from ENT to autoimmune diagnosis in 2017 after numerous years with problems. There were many tests in the first few months so the consultants could get base results and find the best treatment. Its trial at the beginning to see how your own system responds to the medications we are all so different what we can tolerate. As the others have said, find extra help for your mental state as its one of the main things that gets missed by professionals. Speak up and be listened to.
Take care, its certainly an ongoing learning curve and other sufferers are so helpful with advice and support.
Thanks and I'm glad my doctor told me to come on here now. As for mental state i already suffered with depression and intrusive thoughts but I made the mistake of admitting to suicidal thoughts 🙄 and even though I said it passed and I was OK I feel like I'm on some sort of suicide watch now 🙈 which has only increased the pressure. Sorry if oversharing
Hi Monica
It’s always a shock to learn you have an illness that is serious and needs careful medical care and management
You life changes and often the treatment has a profound effect inyour mood and lifestyle
Firstly if you are having suicidal thoughts you must talk about this with Doctor and other people who will take this seriously
Being depressed with such a change in your life is something many Vasculitis patients struggle with
You may need help in dealing with this
The fatigue you feel needs to be managed too …there are good day and bad days and you need to pace yourself
You also need to find things and interests you CAN do such as listening to music talks ( BBC sounds is good)
Support groups who will understand not pressure you to suddenly ‘get better ‘
Reading , music and gardening even if it’s Tess seeds on the window sill
Monica it may feel you are alone inthis but believe me you are not
Sending hugs and best wishes for the future
June x
Thankyou that's such a lovely reply. It was my doctor that sent me on here. Im glad now 😊
Hey Monica...it will get better. You do need your GP to be on board and refer you to hospital that knows about vasculitis. Once you start dropping the pred they should be seeking a steroid sparing solution for you with other drugs..they are all a bit different dependant in what type of vasculitis you have but typically the nhs will try the cheapest solution first. I was diagnosed with egpa in Nov 2019 after various misdiagnosis by the local hospital. Started on high doses of pred..lots of side effects which you do eventually get used to. Once I was down to 15mg/day it was combined with first mycophenalate and then azathioprine..I had a bad reaction to both and was not able to reduce pred further. Eventually I got onto Benralizumab and now I have reduced pred to 3mg/day and hopefully I can get off pred completely. Hang on in there and ask this forum loads of questions because there will almost certainly be someone who has been where are now. It's tough and a crappy club to join but you now have a diagnosis so bit by bit everything will improve. For myself I just write everything down and makes me feel a whole lot better and in control of my life. Good luck on the path. Lev
Thankyou and there's me thinking the only steroid was prednisone lol. I've had an infusion of ritiuximab aswell. So far
Prednisone and prednisolone are practically speaking the only steroids - none of the others are steroids, they are what are called steroid SPARERS, they hopefully allow you to manage on a lower dose of pred. In many forms of vasculitis there are options that do help get to a lower dose of pred but not all.
Hi. I too only seem to get NHS letters, but they also email them to me! I have a lovely nurse at the surgery. I can book a 30 minute appointment with her whenever I need it. We chat through lots of things, healthwise and more. Occasionally the GP will text me to see if I need a further hospital consultation to adjust meds. But I feel a part of a team, and my thoughts (whatever they are) are taken on board. The nurse is brilliant! I do hope you too can find a similar supportive person.
Hi Monica. Sorry to hear of your DX, it comes as a shock to anyone that has it. I've done a lot of reading about GPA Vasculitis and I was a member of the Facebook group for several years. It appears that for most people it starts in the ears and sinuses. Mine started with a left ear infection then a very bad sinus infection. I went for months and at least four doctors and no diagnosis. During those months, I had terrible joint pain body wide and my feet were swollen and painful. I was very lethargic and just laid on my bed for months falling in and out of sleep. I didn't have an appetite and lost 35 pounds. It got to the point where I was taking 800 mg of Ibuprofen and 1000 mg of Tylenol every 6 hours to combat the pain. I had CTs, MRIs, a Gallium scan, and a PET scan and still no diagnosis. I saw an infectious disease doctor who ordered 17 different blood tests and all of those were normal. It wasn't until a hematologist did labs and my kidney numbers were way off. She sent me to the ER where I was admitted. I was given a chest catheter ans started dialysis on day 1. A week later, a very good nephrologist who studied about and had seen GPA before is the one who DX me. He started me on high dose prednisone and Azathioprine the later down the road I had 8 infusions of Rituxan. I was on dialysis for 9 months and my kidneys improved enough to stop but I have been stage 4 for the past five years. I see my neph every 3 months and do labs before each appt. He checks my Anca titer every 6 months to make sure I'm not in a flare. He stopped all meds for the GPA in Sept 2019 and declared me in remission. I'm 71 and have terrible body aches every day when I get up. I'm left with patulous eaustachian tube in my left ear and have severe neuropathy in both feet. I'm pretty sure I have Fibromyalgia and RA but have not seen a rheumy for DX. One day at a time!
Ellamaye in reply to
Sounds like you've really been through hell so glad your in remission xx
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