New member diagnosed 8 months ago

[bmull67]

Hello everyone,

I am a 69 year old male recently diagnosed.

I recently found this group and have been scanning posts on the forum for information to better understand what this whole GPA thing is all about. I'm still struggling with the idea that I have a chronic, likely life long, disease (but I'm getting there)

My own GPA diagnosis is focused in my orbits where inflammation has affected my vision but has not spread to other organs. My journey started about three years ago with chronic sinus infections and multiple sinus surgeries. Early last year I began having vision problems. ENT and ophthalmologists could find nothing. My personal doctor sent me for an MRI of the orbits where enlarged tissue growth was seen. Surgical biopsy removed some of the tissue and after an agonizing month, all doctors came to agreement it was GPA and that the sinus issues were probably caused by GPA, not the other way around.

My new rheumatologist recommended treatment with rituximab infusions every 6 months and put me on 40 mg per day of prednisone with eventual tapering.

The problem I am having is with tapering off the prednisone. In July and again in October, once the daily prednisone was reduced to around 20 mg, the inflammation in the orbits flared up and vision was impacted, Another MRI and pulse infusions of 1000 mg per day for 3 days restored vison in both cases. Same again in October.

I am now at a key point. I had my second 6 month rituximab infusions about 2 weeks ago and am starting to taper off prednisone and down to 25 mg per day right now. We'll see if going lower again causes a flare up and there appears to no way to know if it will happen. The rheumatologist says that if GPA was in kidneys or lungs, blood work would tell us a lot more but the orbits are different and more difficult to see how things are progressing.

I post this tale of woe to see if anyone has had an similar experiences, I searched the forum for problems in the orbit but like most things with this disease, it seems everyone's experience is different.

Thanks for listening and I hope to both learn from and contribute to this forum

[drz]

Inflammation of the eyelids is my main residual symptom of GPA. It does affect my vision as it compounds my dry eye problem and the side effects of Rocklatan eye drops I need to take for glaucoma.

I also had a big taper of pred meds after my diagnosis 14 years ago. My peak was 1000 units of Solumedrol which equates to 1650 units of pred meds. That dosage usually results in a steroid psychotic episode.

Once I got out the ICU and rehab hospitals into a Nursing home I was still on 60-80 units of Pred meds but begin a taper down and eventually reach a daily dosage of 5 per day. My taper was done very slowly for regular daily dosage, usually about 5% every two weeks but this prevented any big flares for about ten years.

This took about two years. This often had to be increased for short periods when the residual symptoms increased. I was still considered in a drug induced remission because I didn't appear to need RTX meds yet and was being maintained with high dosage of AZA.

When I got vaccinations for Covid it caused a big flare and lot more lung damage and i had to switch to RTX every six months. And I never got below 8.5 units of pred meds for past couple years. i also lost what little hearing I had left for a short time till higher Pred restored it partially.

Higher dosages do relieve my residual GPA symptoms (inflammation of eyelids, heavy fatigue and bloody crusts in nose) but raise my blood glucose levels over 400 so I choose to suffer the Weg symptoms to help manage my diabetes. They give a 100 units of Solumedrol with the RTX infusions which reduce any Weg symptoms for a couple days

[John S]

I’ve been on Rituxin since 2017. I was able to slowly eliminate prednisone from my daily routine.
Prior to diagnosis, I was treated for headaches, double vision, orbital pseudo tumors and sores that covered both hands. Dr. Villa Forte went over my medical history and had my biopsies re-examined before making diagnosis and setting me on a treatment path.
Before diagnosis, I had rewritten my will, sold my business and said goodbye to friends and family. Now I am active in retirement, leading folk music get together, treasurer for an arc club and a city Commisioner.
TRUST THE PROCESS.