Newly diagnosed

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I am 28.. I was diagnosed with Wegener on July 30th of this year. I had been to doc after doc cause I was coughing up blood. No one could tell me wjsy was wrong until my toes started turning blue. They had told me my kidneys failed.. after all that this disease attacked my heart. Any advice on how to get threw this?

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  • Posted

    I am so sorry to hear this are you on dialysis? How badly damaged is your heart? Unfortunately it's a day by day thing for recovery. It will get better but will take a while for you to get use to your body again and all the medication but there is light at the end of the tunnel

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  • Posted

    Just keep fighting.  Follow what your Doctors say and read some info.  It might take a few different meds but they will get it under control.

    You are young like my son.  He was diagnosed at 30.  Your body will recover its just a matter of getting the meds that work for you.  Hopefully you are on Prenidsone so there should be no more organ damage.  Are you getting dialysis and have your kidneys started working at all? How has it affected your heart.?   Keep your spirits up and stay away from crowded areas.  You do not need to get the flu or an infection now.

    Take care.

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  • Posted

    Really sorry to hear that, ...well... I've been with this disease over a year, It attacked my sinus, my nose, my lungs, my kidneys, my ears and my nerves in my left foot, today I'm still dealing with my right ear...I can barely hear on my right side and have fluid in the inner ear, thanks God no pain or infection for the last 6 months.

    I recommend you to get a good Rheumatologist in your area who really knows about the illness, not all doctors know about it, get educated, read a lot.

    My treatment was initially 4 doses of Rituximab, 1 each week, and a high dose of prednisone (85mg) per day for the first month and then taper it down 5mg every 10 days...  along with vitamin D/ calcium, lisinopril, alendronate, hidroclowhatever, and antibiotic to prevent lung infections, a healthy diet, lots of fruit, salads, not too much sugar, not too much salt. I have a rinoplasty surgery pending to fix my saddle nose (use to bleed a lot), the illness eat up my cartiladge, and still something wrong with my lungs that I'm short of breatness all the time.

    Lots of patience, probably you'll gain some weight if you are on steroids already, and the best thing I have a lot of people praying for my health around me, it was critical at one point but slowly I came out...lost almost 40 pounds. 

    I'm 41 years old and too young for this damn illness, at one point I was feeling like 80 plus years old, my wife helping me to dress, take a shower, really bad headaches, pain in my joints, sleepsless and sweatty nights...

    Just til a few weeks ago I could start feeling myself in my body again, it is a long slowly recovery process, keep the faith!!!!


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    • Posted

      thank you Alex. and it has been a rough journey for me as well. i have noticed i am on a lot of the same medications that you are on. i also had to have my husband help me get dressed get out of bed and everything. i am so tired and sometimes get tired of fighting this disease but my kids keep me going
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  • Posted

    I was diagnosed last week. I'm 32.  I was diagnosed purely because I couldn't be intubated while they were trying to investigate what is wrong with my lung. Even though I know that this has done the damage to my lung, nose  and windpipe I'm counting myself lucky as my windpipe is only open 30% a fact I was totally unaware of..                                                              I also suffer with Rhuematoid Arthritis and have done for 20 years and my experience living with that has taught me that its best to talk to people who are going through the same thing as you are because no one can understand you like they will.  This forum will help and there may be a Vasculitis organisation where you are. I would agree that you find a good doctor as this is rare disease/ I'm in the process myself of seeking a second ENT opinion as I don't think the current one I have is experienced enoigh. The positive I've taken from the forum is that it can be treated thats what I'm going to hold onto as stressing out will only make us ill. 

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  • Posted

    Hi. I was only diagnosed with this evil disease six weeks ago. I'm on steroids and Cyclo every two weeks just dropping down to three weeks. My respiratory system has been attached along with my ears and very slightly my kidneys. I've been sick on and off for about two years but was treated for pneumonia or chest infections etc.

    I am responding well to the teeatmntvand getting back to work next week. I will need investigation into if this has affected my heart too but later down the line.

    I'm sorry that you have been so badly affected by this but I think it's a case of each day is different and we just have to suck it up and see how we respond. Which isn't very helpful when you're feeling down and very ill.

    I hope they get this under control for you. I'm 50 but felt 100 most days. I'm a long distance runner and feel frustrated thatva walk tires me but I refuse to give up. I'm watching my diet too but allow myself a tear along the way. I think we suffer enough without depriving ourselves further.

    There appears to be little known about our illness but as time goes by more is being discovered. I've signed up to be a case study and hope my experience and tests can help others.

    Good luck, keep positive and strong.

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