Those of you with vasculitis......

[Madbiker1]

how do you cope day to day?

I am waiting on tests - then no doubt more tests - I am fairly sure I will get a diagnosis of vasculitis.

I developed eosinophilic asthma and nasal polyps in my mid 40's. I had little response from biologics. Now at 50 I have a plethora of other symptoms.

I still work full time ( bobby) but I am mindful that this will have to change.

So how do you deal with your condition? Diet etc? Do you have support ie good family around you? I have two children - youngest is seven - he has downs syndrome and is a delightful chap - however he has more energy than me.

Best wishes.

[May7]

Hello Madbiker and welcome. This is a big question, to which you will find a variety of answers. Vasculitis, even a specific one like EGPA, affects different people differently. I'd never had asthma, but was suddenly hit with inexplicable breathing difficulties several years ago. After xrays, respiratory tests, and finally numerous blood tests revealing excess eosinophils, they diagnosed EGPA. Further tests showed that I didn't have asthma. What had happened, was that my immune system had gone into overdrive and damaged my lungs, together with my kidneys and a few other things. Once this was known, I was immediately put onto steroids, and further immunosuppressive meds. After trial and error, allergic reaction to azathioprine, they settled me on mycophenolate. Other patients have had different reactions and been put on other drugs. The sooner you are diagnosed and treated the better. With steroids you will need to be given calcium and vitamin D supplements and take care of your bones. Regular blood tests have been done, and regular checks with numerous consultants have taken place over the years. It's hard work, and you need to know that you are in for the long haul, and those around you need to know this. I am sure that your little downs boy will cheer you up with his happy disposition, but family will need to accept that you will probably feel more tired than the average person, so don't let him tire you out! Wishing you the best!

[AndrewT in reply to May7]

What a 'great' answer, you have given to Madbiker1. I will however Stress that it Will take TIME, and in 'Spades', for both him- and his Family. I might also suggest that he, and his Wife, contact the Vasculitis Helpline.

Above all they BOTH need to 'Talk' to Someone or, at least, have a person they can 'Turn To'. As you already know, the First few Months (Years) can be a VERY Steep 'Leaning Curve'... For EVERYONE involved, be it Doctors/ Consultants- or Family, and Friends.

I hope that you are reading this Madbiker1, please know that ALL of us- on here- Do Understand, what you are 'Going Through'. We are ALL 'Sailing The Same Choppy Waters', we are just a Bit Further Ahead. Incidentally we All 'Cope', for the same Reason As You.... We HAVE To! Don't 'worry' we ALL have your Back- actually Front, Sides, Underneath, Top, Bit Round The Back..... Seriously though, please feel free, to ask Any One of us Anything at all.

Take Care my friend, and Thanks again May7.

AndrewT

[AmyS1]

i feel for you my youngest was 9 when I was diagnosed. Hopefully with good treatment you will soon feel better.

[Investigator1]

Hi Madbiker1. Welcome to our club. The routine stuff like Doctors, medications, consultations take care of themselves and do differ case to case. The rest of it is about striving for normality. I was diagnosed only 2 months before Covid came upon us so only had 3 months of illness (GPA) in a “normal world”.

I didn’t have anybody but my wife, she was off work to protect me so she was my sounding board and brilliantly logical too. I walked or cycled every weekday (now about 3-4 times a week and adopted a low- carb lifestyle, firstly to counteract the steroids and secondly to keep my head right. Even though there were days I didn’t want to go out and I felt really ill I forced myself and both those changes worked for me.

During Covid we made Friday nights a “special” night and took turns doing Date night (where we dressed up), takeaway night, Gourmet night and treat night (ditched low card) it gave me a focus and something to look forward to.

There have been challenges and trials I admit that have tested me (us) but I got through them a better person. I was fortunate to work from home training people via Teams which gave me that social interface, risk free.

The best advise I can give you is take things day by day but have a plan, whether it’s exercise or doing something different. My aim was to take something from the experience or journey and become a better person. I have done that, I am more tolerant, respectful and compassionate about others but have a plan.

Nick

[Tbrz]

hi and others have said welcome to club no one wants to belong to! I was diagnosed with GPA in 2016 after 2 years of misdiagnosis, which left me close to death. Unfortunately, my journey to clinical remission has not been smooth and with the misdiagnosis I have been left multiple issues and has left me unable to work or finish my masters, which has been very hard to deal with. I manage now by having tasks to do through the week, some very small, as the smallest thing can knock me back for days or weeks. Currently, I have been suffering from my 6th Covid jab, so have really struggled doing very much last couple of weeks. I do try to take joy out of little things, so have enjoyed feeding birds and watching them feeding etc,. My life has been totally been turned upside down and I admit it’s not been easy, but I keep up the fight. Good luck with everything 😊