Wegener Newbie

[Rumson01]

Hi, I'm 46 years old and suffered with RA since 1996. In the last couple of years I've had worsening issues with veins and sinus. Resulted in two surgeries. I finally went for a second opinion and new lab tests showed borderline ANCA for Wegeners. This past June I started my first round of Rituxin. In December I start round two. I too have periodic foot pain and pinching pain in the thighs. I was relieved to hear in reading other posts that I'm not alone. And I am certainly not diabetic. I'm hoping to learn from this forum and hope my experiences might help someone else out. Has anyone found relief for the foot pain?

[Keithtim10]

Hi Rumson glad you have joined i too have ANCA Wegeners and i was diagnosed in 2015 i am 67 years old and thought what the hell is this.It also has left me wit Stage 3/4 CKD and my kidney function at the moment is stable at around 40 but i had a relapse nearly 12 months ago and i am coming up for my third batch of Rituximab.I am on steroids permanatly and up to a point these although dont cure other things they tend to hide them.In general though i have brilliant consultants who keep a close eye on me and react quickly.Overall i dont do too badly considering although get depressed sometimes but thankfully not that often.Interms of any other pain i get i just take paracetomel which seems to work.Hope this helps but keep talking on the site as thee a number of us i similar situation and if nothing else we cheer each other up.

[Rumson01 in reply to Keithtim10]

Sorry to hear of your troubles. Yes this site was a great find. I was on prednisone for 2 years just got off it in June now struggling with the weight gain I guess if it's not one thing it's another ugh

[vectra99]

Hi, I have been treated for GPA for about a year now and the worst of all the symptoms and treatment has been to do with the pain in my foot so compared to some on here I can consider myself lucky. It felt like my foot was wrapped in about a pound of cling film or bubble wrap and every minute or two someone would stick a cattle prod on it. this went on for 24 hours a day and the cattle prod made sure I didn't sleep more than a few minutes at a time.

At first I was given Amitriptyline which although got rid of the electric shock sensation changed my whole personalty and I went from an easy going happy person into a short tempered monster. I hated this and stopped the medication and was put on Gabapentin instead. I am now my old self again and the electric shocks in my foot have stopped although it still feels like it is wrapped in bubble wrap but I would describe it as an annoyance rather than a pain.

I hope you find some relief from your pain, I know there were times in the middle of the night that I just wanted them to remove my foot so I could get some relief

[Rumson01]

Ugh I understand. My foot pain isn't that bad yet but there have been a few rough bouts here and there. It's hard where the numbers say I'm borderline but DR thinks I'm more than borderline based on symptoms. I've heard and read the arguments on diet control. I guess u have to learn and understand your body to see what works, I just want to stay away from steroids as long as I can......

[tisme2]

Hi. I too was diagnosed with wegeners (GPA) two years ago now this month actually, for two years before that I was suffering with so much pain everywhere. I too now have CKD stage 3a but did go down to stage 4 in the early stages but after time has improved a little, I am told that the kidneys wont improve any more now.

I was never put on rituximab or any other similar treatment, just initially the steroids and mycophenolate. I was phased off the steroids after a year and been off them now a year, so now take the mycophenolate and blood pressure tablets, which I am told is a must have because high blood pressure with CKD is a definite no no!!

I too have had pain in the soles of my feet and tender heels but only first thing in the morning after that it seems to settle a bit throughout the day but comes back every morning first thing, I mentioned this to the doctor and wondered if it was a symptom of vasculitis but she didn't think so, but I don't think my doctor is educated in vasculitis diseases, she told me I am the only one she has ever treated. It was the nephrologist who finally diagnosed wegeners after a kidney biopsy was carried out.

I am now hoping that when I next see the nephrologist I can start to reduce the mycophenolate and then hope that I don't get any flair ups!

If only the diagnosis could be made sooner by the doctors and treatment started earlier maybe this disease could be stopped or at least reduced in severity, maybe one day!

I consider myself very lucky when I read the story of others who have had to deal with vasculitis for many years and some from such a young age too!

My best wishes to you all and hope things get better for you too and soon.

[Wendy-m]

Hi, I was diagnosed with wegners at around 17/18 ill from 15 I'm 49 now, I've had literally hundreds of operations and 4 tracheostomys, I have it in ear nose & throat. I'm still taking 100mg of Azathioprine a day and back up to 30mg of pred as my tracheae is closing in again and needs stretching again, which is now mighty painful, I'm finding the older I'm getting the worse I deal and recover from anything is, it's become where I have so many problems I feel like I'm being beaten slightly. It sometimes gives me slight hope though that 1 day I will still be given my magic pill and reduce my meds and know what it's like to be drug free, that's my dream but in reality it's different, But because of my experience and reading newer experiences I do feel we're getting better at awareness, diagnosis and treatment (although I am under no illusion that everyone with a vasculis disease suffers terribly, I just hope by reading your experiences that things are improving even a little) I wish you all the very best and hope you continue to get to a better more comfortable place until our magic pill arrives xx

[Lillybweggie]

Hi Wendy-m, I was diagnosed in 1990, I was 25. I am now 52. My wegeners is also in my ears, nose and throat, and my lungs. I have also had hundreds of surgeries and have taken so many different types of meds over the years, I am now suffering the effects of being on these meds for so long. I am on prednisone. If I stop taking it, I flare, so I stay on 5mg. always. If I start to flare anyway, I take a higher dose, and also usually get a Rituxum infusion. This has worked well for me when I need it. But the long term prednisone has caused me to have osteoporosis in my lower back. So now I have to take a daily injection of Forteo for the next 2 years. Then I go back to a once a month med. I am so sorry to hear of the problems you have with your trachea. So many have this problem, and say it is so painful. Its one thing that so far, I have not had. I hate being on so many meds. I am like you, waiting for a magic pill that will take care of everything!! I hate to say it, but when I was younger, I could really handle this disease like a champ. But now, with so much damage to my body from the disease AND the meds, I have to fight to live a daily enjoyable life, and I cannot do so many physical things I loved to do. I do suffer daily, but seem to hide it well. I wish you all the best, and let me know if you find that magic pill before I do! Blessings to you and all....

[tisme2]

Just a thought after reading the above posts, maybe the more clinically minded on here will know? it does seem to me that the younger you are being diagnosed with this health problem the more severe, and complicated it is?? Now that I look backwards to recall when my symptoms started which firstly was tinnitus, but I thought at the time that it had been caused by waxy ears and having them cleaned, and then later Reynard's started in my hands during cold snaps! to then having lung problems which I then had an xray and eventually led to me having a biopsy when it was confirmed that I had benign granules. I still didn't have the Wegener's diagnosis though till a year later after my kidney biopsy! At this time I was 67 years of age, so could it be that the older one is contracting this disease the lesser it affects you??

Reading the above from Wendy-m and Lillybweggie you poor souls have had this health issue for so long and that why I wondered if the medical monitors of this site have any data, regarding age related severity of this disease? (Just thinking out loud really)

[Rumson01]

Interesting. I was originally diagnosed with RA at age 25 now at 46 a specialist is wondering if it's all part of Wegeners