My Grandma has had Wegener's for about 1 year. What can I expect.. please help.

Hi Stephanie, so sorry to hear about your grandma. It is a very terrible disease. I've been battling the disease for the last 6 years since I was 27 (am now 33) and it hasn't been easy. The first few years I used to get very bad pain in my feet to the point to where I could barely walk and it would hurt to stand and be on my feet (sharp pain). My hands and feet would also swell up. Overtime, my feet got better and this symptom seemed to go away. I also experienced night sweats. Over the last few years the disease seems to have affected my ear and sinus. I've gone through 4 rounds of Ritxumab so far and am still on 20-30mg daily prednisone and am having trouble tapering down from it. I've been on other medications prior to Rituximab (methotrexate, cellcept, imuran and also currenlty taking Bactrim & plaqunil). Perhaps prednisone will help reduce her swelling? I've also found that acupuncture has helped to deal with my flare ups tremendously and I highly recommend it. I hear that it takes 1.5-2 years of chemo (rituximab) to really start to feel better. I've gotten a number of flare of still in my ear & sinus even after my rituxan so hoping my next year of chemo will be better. She can also join the Vasculitis Foundation for additional support. I like getting their monthly newsletters. There are also a number of Facebook and Instagram support groups. On FB, there's an active on called "Granulomatosis with Polyangitis Support" that I'm on and I'd recommend. Good luck to your grandma and tell her to hang in there!

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Hi Stephanie. I've only been diagnosed with this disease for a few months but I find the information in Vasculitis UK website helpful. You need to ask your Grandma if you can go to the Dr with her to get the answers. This really isn't the best way to get those as we all have very different experiences and symptoms even for the same disease.

It is very frightening when someone you love becomes ill and it's great you're trying to get answers but to be honest the Drs are your best resource.

Hope your grandma feels better soon.

Xxx

I have had PAN when i was 21 yrs and now GPA for the past 3 yrs, i think that it is probably different for each person on how or what organs it affects, but the medication these days is pretty good so i would expect the prospects for your grandma to be good.....

I was diagnosed with wegeners in 2015 and i am now 62 years old it has been a rollercoaster since then, I too have been left with foot pain along with some other things.

. Tell your Gran to join a support group and this can be very helpful to meet other people that is going through the same disease. Try not to be upset as your your gran is doing great  job fighting this disease   

Kind Regards

Nialler

Hi Stephanie, I've had Wegener's for almost a year. It will get better. We are fortunate to live in a time in which drugs are available that work to keep it under control. Rituxin is not chemotherapy, but antibody therapy that can be used with other drugs that are chemo. It works on the red blood cells that are responsible for causing our issues. It hit me out of nowhere. I was on the ventilator twice, and In the hospital 31 days. Since my release, I've had a few issues with infections, but thankfully nothing major. I am getting ready to go on vacation in the mountains at high altitude and expect my lungs to be fine, in spite of what happened a year ago. My kidneys weren't involved. So, hopefully his will encourage you and your Grandmother. She's very lucky to have you in her corner.

Hi Stephanie

I have had this dis-ease for over 20 years now, and i have been through the ups and downs with it. Not only is it difficult, confussing and scary, it can also be all of those things and more to those around your granma. 

Personally i take on eday at a time, and one issue at a time, i'm super relaxed now about things, and have a positive and carefree attitude towards my own health, but i know with this random disease, that you have to be very careful with yourself, and rest, and be as patient as you can with your body. If you ever need or would like someone to talk to and support you i am more than willing to talk on skype etc.

take care. Bella

Hello Stephanie,  my name is Scott and i was just diagnosed with Wegener's March 2018, i have had 2 infusions of Rituxan and 2 more left . I am also on 60mg of prednisone a day and also antibiotics.  It didn't get into my kidneys but maybe lungs. I have 8mm nodal in my right lung that they are keeping an eye on . Dr think it started in my nose . 

She needs to get plenty of rest and work on her anxiety, everything in this life has a cure, and the doctors will help her find it. The best thing she should do is pray, try painkillers, and also massage her foot, massage the pain away. Try ice cubes or ice spray. Try warmth and heat, this usually is a natural pain remedy. Except on teeth and gums.