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

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My grandma is 63 years old & she developed this horrible disease 1 year 1/2 ago.. She takes a list fof meds & has gotten 1 infusion in the past.. She has been getting sudden pain on her feet mostly. She gets sharp & sudden pain (electic like impulses) on her foot mainly the right one, her face is swollen, her feet swell as the day drags on (they get red & swollen), she sweats profusely, she cannot sleep at night (only for about a good hour)- I believe she is getting anxiety from this since once she is awake she cannot go back to sleep, & she is becoming very depressed.

Please share with me your stories so I can show her she isnt the only one fighting.. I also need reassurance cause I am crying as I am writing this.. Please..

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  • Posted

    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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  • Posted

    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

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  • Posted

    Steph! I have had my WG for approximately 7 years. I believe every case is different to a degree. My WG is mostly in my face and lung.. Most people have kidney problems some have lungs. I am also on a lot of medications. Expect her to have good and bad days.. at her age she will be more fatigue then normal. I am on steroids and Chemotherapy treatment myself..
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  • Posted

    Hi

    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.....

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  • Posted

    Hi stephanie80225,

    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

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  • Posted

    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.

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  • Posted

    Hi Stephanie smile

    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

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    • Posted

      Thank you for such positive words. I have had this dis-ease (love that) for 8 years. Just retired and have lots of plans so seeing you have kept strong for 20 years, gives me lots of hope.  Thank you again.
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  • Posted

    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 . 

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    • Posted

      Can I just say that 30 years ago I had vasculitis PAN which affected my kidneys which after 5 yrs I was off my tablets and in remission and then at 51yrs I contracted GPA which affects my lungs.  I have been on60 Mgs steroids imurans and other tablets I have also had numerous amounts of rituximab with no side effects and very little time off work. 
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    • Posted

      I also have two coin lesions on my lungs and a nose on my kidney 
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