i was diagnosed last august. i was put on prednisolone 50mg for 8 months along with Imuran which i am still on. i feel better off prednisone. how ever i still have fatigue.
my blood tests show improvement. i question if my will a series of up and down. i would love to live a normal life. what is next?
Its not easy very few few days are the same mixed with the feeling of normality to very weak and lots of pain together or separately . the drugs make you feel funny with shakes sweats so much so its hard to tell the difference between the damage the drugs do or the disease.
it is a daily fight to work out what is right for you and making your life more livable , I have a 100micr fentayl patch morphine injections when then pain is to high and then there is the regular visits to hospital. keep away from sick people as the drugs you are on will lower your immune system so the Flu good do you a lot of damage as it has with me ( I get the flu injection)
Keep on the internet and search for for remedies and try and not let the disease control you but try and live normally as you would , it is a hard act and many times i feel like giving up . Its a lonely existence with these diseases , i just keep on telling myself that Children get cancer and that is the toughest thing of all , we have had a go at life so keep one foot going in front of the other , just keep trying and make the best of the good days also goggle the spoon theory for Lupus it is a great way to explain how you are each day and how you deal with each day. All the best brother it is a mongrel disease I would not wish it on anyone. Also seek other opinions and do what works for you do not let the medicos dictate , sure take there advice but the treatment has to be good for you , Instead of imurane I went on a chemo called methotrexate similar but different , and you will get done to between 5 to 10 mg of prednizone hang in there
so sorry you have been going through so much. i understand i to go through pain, fatigue,,and lack of doing things i would like to do. i try to keep a positive attitude and stay with a smile for all my family and friends. i do not want them to worry any more than do already. thank you for sharing with me.Hang in there and keep the faith.
Do you mean gpa - granulomatosis with polyangiitis? If so, have a look at the vasculitis uk website where you'll find very useful information on the disease and its treatment. If you do have gpa, Imuran is not the usual initial treatment here in the uk. Where are you being treated?
i live in the US i knew nothing about vasculitis until 9 months ago.my disease is vasculitis ,
granulomatous, polyangiitis
Thank you for information.
Bonnie
Hi 1943bonnie. I'm so sorry about your condition. Hope you can be better soon.
I have Rheumatoid Arthritis and Adult Onset Still's Disease with unresponsive with many medicines with a history of tumors and breast cysts because I have imbalance of estrogen.
So now I'm just trying to control my mind to always be calm and enjoy every moment of my time without thinking too much about my diseases as I believe about "Healing through positive thinking for your body".
I've been consuming imuran for 3 months and I got extreme fatigue. Imuran could only control the production of my stomach acid that lasted for 1 month only and everything returned as before. Imuran also made me having Atypical Lympho. Imuran can cause skin cancer and lymphoma especially people with Inflammatory Bowel Disease so you can not consume it constantly. You can read here about Imuran:
medlineplus.gov/druginfo/me...
Before I took Imuran, I had taken prednisolone but it lasted for only 2 month because prednisolone interfered with my estrogen stability. Prednisolone caused me to have uveitis and increased my eyes pressure that can cause glaucoma. So I stopped it.
Good luck and hope you can be better soon.
Cate
thank you Cate, i have been on Imuran for 9 months. i have extreme fatigue. my Dr. says it is not from the Vasculitis that my blood work is looking good. some day the pain in my joints and fatigue keeps me from doing any thing. is this the disease or med's? i try to be positive and not complain.i don't want to worry my children any more than they are.
thank you for your input.
Bonnie.
Hi Bonnie. I can see you've a high spirit and it's great for you to be survive.
Btw, do you have joint pain before or after taking imuran? If you already have it before taking imuran and you still have it even though you have taken imuran then your joint pain is caused by your disease and imuran cannot make you better. But if you have joint pain after taking imuran, then it can be caused by imuran. Muscle or joint pain is a rare side effect of Imuran. You can read it at the link below:
drugs.com/sfx/imuran-side-e...
You can try fish oil and do little exercise regularly to keep healthy your joints and prevent joints stiffness. EPA and DHA in fish oil can reduce inflammation, which causes swelling and pain in joints.
Well, I just wanna share you about my diseases.
I have Still's disease (AOSD) since I was 5-6 years old (in 1988) but I just found the correct diagnosis in 2017. In the same day I have diagnosed with RA too. I've spent 30 years with Still's disease. Still's disease is a rare systemic autoinflammatory disease. AOSD and RA are like a perfect team to attack me everyday. My days are like hell. They attack my whole body especially my internal organs.
It was so difficult to determine the exact diagnosis for Still's disease as there is no test to diagnose Still's disease, the symptoms of each person are different and the disease is rare. But the particular symptoms are spiking fever and pink rash. I have fever above 40 Celcius almost everyday and pink rashes on my arms, face, stomach, legs.
The following are the symptoms that I have during these 30 years due to my diseases and everything becomes horrible from mid-october 2016.
> inflammation of the digestive tract since my childhood, and I often vomited after eating since 2016. I have extreme pain in upper and lower abdomen, blood stools, constipation, hematemesis, and sometimes with diarrhea. My diseases cause my stomach acid production uncontrollable.
> impaired vision that made me having temporary blindness twice. I have floaters, and pain in my left eyeball especially when I wake up because of the high pressure of my left eye.
> headaches like having blood pressure or vertigo or migraine in my teenage and relapse again starting in 2012.
> tinnitus which sometimes makes me lose the hearing of one of my ears since 2015.
> tooth decay and that made me lose 6 teeths in 2003-2017.
> canker sores in 2012-2014.
> hair loss and dryness since 2015.
> urinary tract infections symptoms with negative nitrite in my urine test since 2013. It became worst when I took Imuran.
> my AST and ALT were high in 2017.
> pelvic inflammatory disease in 2012-2015 with unresponsive with antibiotics.
> bronchitis in 2012-2016 with unresponsive with antibiotics.
> stiffness and joint pain since 2014. I also having carpal tunnel syndrome since 2017.
> stroke symptoms since 2015.
> peripheral nervous system disorders like Guillain-Barré syndrome since 2015.
> severe back pain since 2015.
> kidney stone in 2015-2016.
> sore throats in 2012-2017.
> spiking fever between 40-43 celcius in my childhood, in 2002, and it came again since 2016 until now.
> pink rashes & red spots since 2013.
> vasculitis symptoms in 2016-2017.
> myalgia since 2014.
> shortness of breath since 2016.
> fatigue since 2015 and extreme fatigue since 2017.
> atypical lympho with symptoms like non-hodgkin lymphoma since 2017.
> since my childhood, my skin is always reddish like burning when exposed to the sun at noon and I always fainted when exposed to the sun at noon.
> I have imbalance of estrogen that makes me always in severe pain during menstruation. It also made me got breast tumors and breast cysts in 2009-2014. But this hormonal imbalance disorder recurred from last year. Imbalance estrogen can causes autoimmune disorders
I have a huge list of drugs and supplements as my diseases aren't responsive with drugs. Drugs and some supplements had the opposite effect on my diseases and caused my old diseases to recur again therefore many doctors who gave up to my condition.
Since there is no cure that can make me better, I finally start learning to process my mind by always thinking positive and enjoying every time. I believe miracles and I believe about "Healing our body with our mind". And this year I feel better even though my condition is still in severe pain every day with no painkillers that can relieve my pain. But I can feel better and survive until now with no more hospitalization. When I got a horrible pain, I talked to my body "I do not feel sick" and I imagined that "I am healthy" and the horrible pain was gone on its own or turned into a pain that I could still hold it. When I googled about "Healing our body with our mind", I found this great link:
dailymail.co.uk/health/arti...
There's a clear connection between the way your brain thinks and the way your body feels. Everyone has the ability to build mental strength. With practice, mental exercises could be the key to living a longer, happier life. You can try it.
Hopefully you get better soon, live healthy and happily with your children and family. Happy weekend for you and family 😍😊
Good luck and take care 😇💪
Cate
Vasculitis MPA 
Vasculitis 
Vasculitis & heart problems
Vasculitis – GPA
Retinal Vasculitis
