Hi, I am so glad I've found this site as I am just at the start of my vasculitis journey and from what I read, seen and heard I will need all the help I can get. I suspect my immune system got triggered when I donated blood in August 2018 - I got really sick during the process. Nothing unusual, it happens. But few days later I felt numbness in left arm and waves of nausea while at work. It was so sudden and unusual for me that I hotfooted straight to A&E. They ran the tests for heart attack - my ticker came back perfect. Doctor thought I might be experiencing anxiety attack. I actually felt relieved, phew, nothing wrong with me. For few days felt fine, then one morning woke up with pain in lymph node on left side of my neck and blocked left ear. I did not go to GP for few weeks because I had one bout of Eustachian Tube Dysfunction in 2016 and knew there is not much they could do about it. But my ear got worse, so off to GP - she gave me steroid spray. Few weeks go by, both ears in pain and pain in bones right under the big toes. Trip to GP again, given antibiotics and medication for gout. About a month later ears still giving me grief - third GP insists it is ETD and gives me another steroid nose spray and tells me to use it for 3 months, if I do not see improvement by then to come back. In the mean time the body starts hurting - everywhere. Severe pain in shoulder - sometimes left, sometime right. Pain in my feet - soles, toes, ankles. Knees. Joints on my hands. I started waking up during the night covered in sweat. Some nights the pain would get so bad I could not find a position comfortable enough to fall asleep. I could not go through a day without painkillers. In hindsight it seems ridiculous that I went to see my GP three times for blocked ear but suffered all this pain and waited 6 weeks to see a GP about it. But I changed jobs in November and went from sitting in office to being on my feet a lot and joined the gym - I thought I pulled a muscle, overdid it, wore wrong shoes. I wanted to believe that, believe it will all go away. But it did not. I was getting more tired, even if I managed to get a full night sleep I'd wake up exhausted. Almost Christmas time, I thought I'll get some rest over holidays, I'll be fine. It got worse. By January I noticed I am getting really breathless after only one flight of stairs. But was not breathless otherwise, so I was not to alarmed, thought maybe I am just out of shape. I start spitting out blood - but I am convinced this is a post nasal drip, from my blocked ear and from using the steroid noise spray. Finally I get an appointment with GP at beginning of January who listens to my symptoms and does a blood test for arthritis. Calls me back in few days and says you are fine, tests are negative. I drive straight to GP surgery and ask if I can have few minutes to talk about it. Credit to him, he did agree to see me without appointment, not an easy feat these days. I told him in how much pain I was and how I felt, and regardless of my test results saying otherwise, I am not fine. He agrees to refer me to rheumatologist. I ask "will I have to wait long"? He says no, 2-3 weeks. I get my referral appointment date in the mail - end of March. 2-3 months more like it. First lucky break - I go on referral web site and find one appointment free on 11.02 and book it straight away. I struggle through January, pain in my joints is really bad now. I can barely walk, barely get out of bed. As soon as the effect of painkillers wears off I can barely move. I still think - this will go away, I just need a right treatment. I will be fine. Lucky break number two - I see the rheumatologist on 11th, she listens to my symptoms and tells me they are all over the place so she orders bunch of blood tests, chest, feet and hand x-rays. She asks for urine test, but I am on my period so we skip that. She gives me steroid injection and some medication and sends me home. Three weeks later I am back in her office, my tests came back. I tested RNP positive and c-ANCA PR3 positive. She suspects vasculitis but needs to do more tests. Sends me to ENT for my blocked ear, cardiology for echo and pulmonary function, and CT of my chest. Gives me another steroid injection and antibiotic. Few days later, surprisingly, I wake up feeling well. The pain in my joints subsided, they look almost normal. I am optimistic, feel good.
First appointment I get is for pulmonary function - and this is my third lucky (or maybe unlucky) break. During the test they ask me to breathe deeply - I get lightheaded, so they have to stop the test. I feel numbness down my left side, leg, arm, tingling, strange feeling on the left side of the face and head. Nurse thinks this is just anxiety after hyperventilating, but I don't feel better so they get a porter to drop me off at A&E. Someone will come to see me they say. I sit there for 45 minutes, slowly feeling better. I think, if I was that ill they would have seen me by now. If I am not, there is no need for me to sit here. So I tell the receptionist I am leaving and drive home. All I want to do is sleep. An hour later, doctor from hospital calls, almost pleads with me to come back. Reluctantly I agree. Ambulatory care, they take some bloods, send me for chest x-ray. I wait for what seems hours. They take me from ambulatory to acute unit. Finally someone talks to me - my hemoglobin level is to low and I need urgent blood transfusion, they can give it to me overnight. I beg them to let me go home, have a shower, come back rested in the morning for it. They are reluctant, I live alone, what if I faint, get worse. OK, I stay. And here things go into NHS hyper drive. In no time I am hooked up to IV, they are poking me and prodding me every couple of hours to take ops, the transfusion machine beeps, pump is not working, the night is a blur. I feel fine, but in the morning get nausea, they give me something through IV to counteract it and get a porter to wheel me to CT. I am leaning forward to stop feeling dizzy, looking at footprint stickers on the floor, grateful for change of air. CT nurse speaks to me but I cannot open my eyes, I speak to a voice without a face. They talk me through the procedure, I almost enjoy it, the air here is cool, fresh, I feel bit better. It does not take long, they get a porter who wheels me back to acute unit. Soon after at my bed side I am looking at a respiratory consultant, my rheumatologist, a GP trainee and someone from cardiology. They talk a lot, speak in language I can barely follow - but the gist of it is - I am bleeding from somewhere, there is change on my lungs, they think my lungs are bleeding. They want to know how long I have been breathless, am I coughing, want to know about spitting out blood. They will start me on this or that medication. More blood tests, urine test. I cannot hear them anymore, the noise, the air is full of bad smells and it is hot, to hot in there. I agree with my rheumatologist to receive further IV as long as I can go home after, I need to get a shower, I am wearing the same clothes for 48 hours, I need a moment to think. She manages to get me on Cytoxan straight away, they transfer me to renal unit, only specialized nurses can administer Cytoxan. I am on saline solution for 2 hours, they still have to give me Mycophenolate and only after that Cytoxan. That is roughly 5 hours of IV. They seem confused, don't know what they are supposed to give me, put another cannula in my ankle, then it turns out I don't need it. I am tired, I am angry, they said I can go home, I want to go home. I demand to speak to doctor, start having second thoughts about Cytoxan, this is to fast, to soon, let me think. Let me have a shower. Renal unit doctors agree - medication takes a while to kick in, so few days delay will not make a huge impact. Finally I get home. I am not stupid, I want to live. I know this condition is serious, and everything they did or wanted to do was to save my life and preserve as much of my health as possible. I just needed to take a breath, have a moment where I felt normal. Like when you have a nice, long, hot shower, put on fresh, clean clothes. Have a cup of favorite tea, look up all these medications they wanted to pump me with, get to grips with it all. I had two more rounds of Mycophenolate IV over the weekend, popping in to ambulatory care. Today I went to see my rheumatologist - she confirmed vasculitis - GPA as it affects my lungs and there is some evidence of protein in urine, even though my kidneys so far work fine, and I am still to see the ETN for my blocked ears. I started taking 60 mg Prednisolone today, and will have my first round of Cytoxan on Friday.
Sorry for such a long post, but I needed to get it off my chest, to make little bit of sense of it all. I know I am at the beginning of the process and so far I believe I was lucky - it could have taken longer to get diagnosed and at the moment I am still living a normal life. I am more cautious and observant of my symptoms and try to get enough rest, not stress out, keep my breathing level at all times. I do worry - about being able to work, pay the bills, how sick I will feel after Cytoxan, how I will react to Prednisolone, about living alone, feeling so sick and not being able to call for help. I worry about the damage my body already sustained - how bad is it, how bad it will get, will I get better?
I am glad this place exists, there is not many people I can talk to about this and I know I will get advice and support here, I really need that now.
Thank you for reading and I am looking forward to getting to know you all.
Recently diagnosed with ANCA Vasculitis.
Newly diagnosed - Vasculitis (Churg Strauss)
Newly diagnosed MPA pANCA vasculitis with PBC anitibodies
Diagnosed with GPA over 2 yrs ago.
GPA - Early Days Diagnosed 2 weeks ago
