Went to duke

Hey Everyone,
I haven’t posted much recently because I was making some changes in my treatment.
Right now I am one happy camper. They say you don’t know what you have been missing until you found it. In my case it would be Dr. Nancy Allen.
I needed to take a proactive approach to this thing we call Wergeners. Duke is a world class medical center, only 2 1/2 hours from my home. Dr. Allen was a pioneer in our disease. Since the early eighties she has been not only a clinician, researcher and trainer, she is so smart she doesn’t act it. She even went to a symposium where she met the actual DR. WEGENER. She has seen and treated cases of our disease I never thought possible, one being Wegeners of the breast.
Her nurse went over my medical history fo 45 minutes. Then Dr. Allen spent an hour with me. Not one question went unanswered. Some of the medications I may be on are ones I have heard mentioned on this site. My biggest problem is the number of infections I get, acute bronchitis & pneumonia. My second complaint is this prednisone is causing me a lot of problems. I won’t go into all of the specifics, because as we all know it is not one size fits all. Then she ordered a boat load of blood tests. Within 24 hours I had the results in my inbox. She wrote a note regarding each blood test, what it was for and where I stood. The plan is in action.
For the newbies, please listen to what Pete said. Try your best to get with a doctor who has a great deal of experience with this disease.
I am 69 and my husband is 76. He is not in great health (will be going to Duke for his procedures too). We were unsure about our time frame there, so we made plans to take our dogs and stay in a hotel. They are 6 lb. toy poodles, who are great little travelers. But they sensed this was not a vacation. When we got to the hotel and I opened my suitcase, Oscar got into it. Who says dogs aren’t good stress busters!
Be well,
Masha

@Masha

Glad to hear you found a great doc. Looking forward to more posts about continuous improvement!!!

Thanks for sharing, Masha. I am glad you've found a professional wg dr. I hope she will help you to feel better. I keep you in my thoughts and prayers.

A note: Wegener was Nazi. Please read here https://en.m.wikipedia.org/wiki/Friedrich_Wegener

So pleased you've found a Wegener's expert that seems to care and take time to listen.
She sounds very thorough.

Has she come up with a solution to the pred problems?

Yes, I am to start on Bactrim. If I can tolerate it, then I can begin the slow decrease in prednisone. I know others on this site are on it. Can’t remember who. One of the things the literature says is it fights reoccurring pneumonia. As soon as I slowly got from 10 mg to 9 mg the infections would start, then a bandage of antibiotics would follow with an increase in prednisone. This was the repeat circle I have been on since being diagnosed. I don’t know how well I can handle the Bactrim, because you read about all the side effects and it scares you. On the other hand the prednisone has not been kind to me either. Dr. Allen said she prefers the Bactrim, but if I can’t handle it, there are other drugs to try. After three weeks, she will start me on the next step of her plan.
I have tried to stay positive, and when I think of you I know how much worse it could be. But trying to avoid anyone with an infection is exhausting, like living in a gilded cage.
I was telling my husband about all the things I want to do and he said getting off the recliner would help! I don’t sleep on prednisone and remain in a constant state of exhaustion.

Thanks Alysia. I knew he was a Nazi. The article you gave me helped me understand the timeline. Sadly, the US brought many of their scientists here to pick their brain after WWII. We must never forget the atrocities committed.
On another note, my new doctor was part of the team that discovered the two large treatments of rituxumab are as affective as the four smaller doses. I think that is what you are on, right?
Prayers are everything. We must keep them up for each other.

Hi Masha,

I got 2000mg rtx split into 2 IV 2 weeks between since 2013. This week I went for another rtx round but my wg dr. And me have decided to try only 1000mg this time, because I am doing well and we want to keep the IgG from dropping below the normal.

Have you checked your IgG levels ? The numbers might explain recurrent infections if they are low.

As for bactrim, check this thread with some good info about it, written by @me2: in short, bactrim helps to treat wg, beyond of being just antibiotics.

https://www.wegeners-granulomatosis....hlight=Bactrim

I was on bactrim 2 years until it elavated my liver enzymes and I had to quit it. Just to mention that people who have G6PD deficiency are not allowed to take it (my sons and my father have it, so thats how I know it).

Alysia , quite right to watch the IgG levels. I had to quit taking Rituxan because of lung infection and my IgG is very low. I will be getting tested again in a couple of weeks to see if it is coming up . If not , then I will get IVIG treatment. Right now I am doing inhaled Tobramycin. 28 days on , 28 days off. I'm lucky that for now I have insurance that is paying for it. It is expensive.
Masha, you may ask about Tobramycin for pneumonia. I was in the hospital three times with it and the Tobramycin has been a blessing to me. Inhaled twice a day is easy to do and there is not the problems with taking a systemic antibiotic.

I am 8 months since my last Rituxan infusion and my WG is doing very well. My Rheumy says he is seeing quite a few people able to keep remission after a couple of years on Rituxan and then stopping.

Hi Masha,
Even when I'm in remission and not on any immunosuppressive treatment, I almost always have a mild chest infection and cold symptoms. My pulmonologist started me on bactrim, but stopped it as a precaution after I had a bad bleed (it was highly unlikely to be the cause of the bleed as I had started bruising easily before I started bactrim).
I restarted bactrim just over a month ago (the day after transplant) and I don't believe I'm suffering any side effects. I would certainly prefer bactrim over pred.
The transplant team currently have me on bactrim for 6 months post transplant, but if I'm doing well on it, I'll ask my vasculitis team to keep me on it.

I totally understand what you mean about avoiding people with infections. It's very young children that worry me, they become infectious before symptoms show and if they've had any immunisations they can pass these on to immune comprised people. As expected I'm very immunosuppressed at the moment.

Masha,

Great to hear you had great results. I believe Dr. Allen was one of the the 'supervisors' of my Doctor who was in residency for a year or so of my diagnosis. I saw him last week and he continues to impress with his knowledge and willingness to listen and answer all questions, even those I send through MyChart which they don't get paid for.

I too was on Bactrim a while to prevent pneumonia. My lungs were affected but luckily recovered nicely over time. Hoping it works well for you.

We are working to eventually get drug free over time. I know that is a subject of debate and really depends on each person as each case has similarities and differences. I've been down to 1 mg pred for a 2 or 3 weeks and was given the ok to stop it. Will get RTX in June, then maybe once more in Dec/Jan and if all still looks good see if I can go without it. Of coarse we will be monitoring blood tests every 3 months and I'll be paying attention to symptoms. I hope I can be lucky enough to go without it so I can save some money on my HSA account I will surely need in the future. I am thankful for it nonetheless.

Welcome fellow Dukee :laugh:

Thanks Keith. Like you, my goal is to be drug free someday. Time will tell. Duke is great! If it wasn’t for meeting you on this site, I might never have thought of it. I am seeing a light in my future. The drive up 485 was an easy one. Thanks again. One good thing about getting old- Medicare covers everything!
Masha