GPA granulomatosis with polyangiitis

Hello @suska,

Welcome to Connect; we're glad you've joined us, and thank you for sharing your details.

I'd like to introduce you to a few members who have written about their experiences with methotrexate. Please meet @sstouten @brentdan67 @rickys @tomr @crhp194 @smiles2016 @blindeye @melperez1223 @kyjeanne @guzmanbarb @jewel8888; do you have any insights that you can share with @suska?

As you probably know, granulomatosis with polyangiitis, formerly called Wegener’s granulomatosis, falls in a group of blood vessel disorders called vasculitis. I also encourage you to view these discussions and stories on Connect:
– Looking for any food links regarding Vasculitis - Wegeners disease https://connect.mayoclinic.org/discussion/hello-looking-for-any-food-links-regarding-vasculitis-wegners-disease/
– https://sharing.mayoclinic.org/2017/01/03/diagnosis-and-treatment-for-a-rare-disease-brings-back-trish-byrds-hearing-and-optimism/

@suska, we sincerely look forward to getting to know you. May I ask what symptoms you have with this condition? Did the disease progress quickly?

Currently, my symptoms are skin lesions on lower legs bilaterally. They had become necrotic but have since healed with the medication protocol for GPA, and attending a local Wound Center. My GPA so far is limited to the vasculitis on my legs. As stated in my question, I am concerned about the side effects for my treatment. Insomnia has become more frequent. Also, I have developed anxiety about this disease, and, the anxiety is affecting my every day life and sleep. Wondering if this is common for GPA patients. I have scheduled and appointment with my rheumatologist to go over these issues.

@suska I have been on Methotrexate several years. I was having the sort of problems you have until I switched from pills to injectable. Then, not only did those symptoms go away, but my AL (probably Cystatin or Gelsolin) slowed way down in its progression.

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis - GPA. I am a white female. I was hospitalized until April 15, 2017. During my stay I had numerous blood tests, CAT scans, Ultrasounds, Endoscopy, Port put in my neck and then chest for dialysis, blood clots, 2 intestinal blockages, etc. My body was a toxic mess! I had 8 Plasmapheresis, numerous dialysis, and since October 2017 I now do daily in home dialysis using my peritoneal membrane. My kidneys produce urine and that's about all they do. It appears my nephrons were damaged by the ANCA that attacked the major blood vessels in both of my kidneys. My research shows that a large part of the kidney can repair itself, but nephrons never will. I am coming up on 10 months and I am still holding onto hope that my kidneys will come back eventually. I was told I had a very aggressive form of vasculitis. I am looking for other patients that have this exact same disease to share information and hope with. I have a brother that will donate a kidney to me, but I want to use that as a last resort option. I do not like the cons of a transplant. Rejection medicine for the rest of my life for 1 example. My last creatinine check was 2.77 and my BUN is 71. So, I am still in stage 4 kidney failure.Thank you in advance for any positive or hopeful feedback.

Good Afternoon! I was diagnosed with Wegener's 3 years ago. We pushed into remission with Citoxin and Prednisone. It has flared up again, like last time, with-in Sinus, Kidney's, and Lungs. Just finished Ritoxin without the results expected. We're waiting 6-8 weeks to see if there is improvement. I'm currently dealing with multiple Dr's focused on Lungs, Kidney's, and Sinus. My primary Dr. mentioned that I should reach out to a Specialist who deals mainly or primarily with Wegener's Patients. Is there any recommendation? Thank you!!

Hello @mikedurham34,

You may notice that I moved your discussion and combined it with this existing discussion on granulomatosis with polyangiitis, (formerly called Wegener’s granulomatosis). I did this as I thought it would be beneficial for you to be introduced to members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their or their loved ones' experiences.

I also thought you may wish to explore these two studies or clinical trials (open) at Mayo Clinic:
– http://www.mayo.edu/research/clinical-trials/cls-20343591
– http://www.mayo.edu/research/clinical-trials/cls-20315026

@mikedurham34, while you are waiting to see if there's been any improvement with Rituxan, may I ask how you are coping? Do you have significant side effects?

@suska Hi, Suska. I started on methotrexate tabs several years ago. After some time I began having the same sort of trouble you mention, so the doc put me on a weekly injection, which I give myself. It really slowed down all my autoimmune stuff. I am not cured, and I did not expect to be. But many issues are much better...creatinine, BUN, skin lesions, but I still have lots of bruising and bleeding continuing to progress. But I have no trouble with the methotrexate. My BUN is over 50 now and climbing, and my creatinine is over 2.5. But I am still alive and feeling pretty good, but for the pain everywhere.

Hi! I’m a 22 year old female diagnosed with GPA in October 2017, with the immunosuppressants that I am on, it made it real easy for me to catch valley fever and for that valley fever to turn into meningitis. Has anyone experienced meningitis with GPA?

Hi @jjtaylor95 -- Welcome to Connect. I don't have GPA or meningitis. I'm hoping a member with similar health experiences will share their experiences with you. I did a search and found a few links that may provide some helpful information until someone else responds to your question.

Merck Manual - Granulomatosis with Polyangiitis
-- https://www.merckmanuals.com/home/bone,-joint,-and-muscle-disorders/vasculitic-disorders/granulomatosis-with-polyangiitis

NIH - Central nervous system involvement of granulomatosis with polyangiitis: clinical-radiological presentation distinguishes different outcomes.
-- https://www.ncbi.nlm.nih.gov/pubmed/25187644

FDA - Finding and Learning about Side Effects (adverse reactions)
-- https://www.fda.gov/drugs/resourcesforyou/consumers/ucm196029.htm

@jjtaylor95 have you asked your doctor about the immunosuppressants that you are on? Just wondering if there may be a better substitute.

John

Hi. I have, or had ( I stay on a low dose of medications to prevent recurrence; they are well tolerated) what used to be called Wagner’s Granulomatosis. I think they changed the name to Vasculitis with Polyangitis and that may be the same as your GPA. It is either controlled or in remission at this point. While being diagnosed my rheumatologist started me on Methotrexate but upon diagnosis it was changed to cyclophosphamide and massive prednisone. As the symptoms abated (primarily the immune response indicators ANCA assays) the dosages were reduced. After a year I did develop an opportunistic infection (pneumocystis pneumonia). That was cleared using Bactria. I stayed on a prophylactic dose of an antibiotic for years to prevent recurrence. I never developed menengitis. I don’t think viral menengitis will be a concern because the part of the immune system that responds to viral infections is not the part being suppressed (check) with your doctor. Bacterial menegitis would be a concern. Ultimately I was transitioned to Mycophenylate (2000mg/day) along with prednisone (20mg/day). As time progressed the amounts of both were decreased. I never developed the noxious side effects to methotrexate (lesions, nerve damage). John Bishop’s advice seems good. Have your physician investigate whether Mycophenylate or at worst Cyclophosphamide might be a better alternative.