Lessons Learned

**Sangye** · 06-24-2010, 11:17 AM

I saw Dr Seo today and got good news, bad news and answers to a lot of our questions. He's such a kind and compassionate doctor, so patient. I arrived in a pool of tears and spent the entire appointment crying, but he took time to answer my questions, explain everything and reassure me. I'm unbelievably lucky to have him. This week is my 4 year anniversary of being dx'ed, and I had hoped to be in good shape to celebrate it.

The good news: The rtx is working very well to contain the Wegs. His plan is to repeat it yearly, and he doesn't think I'll need to go on another immunosuppressant in the meantime. I thought he was going to put me back on Cellcept until the next round of rtx, so this was great news.

The bad news: When I dropped the pred below 1mg a few weeks ago, my adrenals couldn't kick in and I was in seriously bad shape. It took me several days to realize it (there were other things going on that confused the picture), and I've been bumping it back up ever since. I'm at 1.5mg but I still feel awful and have been pretty depressed the past several days. I couldn't figure out why I felt great at 1.5mg before but feel awful now. And I had no idea what to do about it.

Dr Seo explained that when you drop pred too low for your adrenals to kick in, you have to increase the dose all the way back up and leave it there for 6 months before trying to taper again. I was totally shocked to hear this.

Even though I started at 4mg, he wants me to go back on 3mg. I felt awful on 3mg, so he's willing to let me increase it slowly from 1.5mg to see if something below 3 works for me. He said that when I first noticed the 0.75mg was too low, if I had increased it to 1mg within 2 days I could have avoided this increase. Waiting 5 days was too long.

Fortunately, the pred drop did not wake up the Wegs. It just zapped my adrenals. The fact that I'm under constant high stress made it even worse, and may mean I can never get below 1mg. This didn't surprise me.

Now listen up, fellow taperers. The first sign I had that the pred dose was too low was a sudden feeling of extreme sleepiness in the afternoon the first day of the lower dose. It felt like someone gave me anaesthetic and wouldn't ease up. It happened the 2nd day, too. By the 3rd day it was constant. Dr Seo explained that when you get to these very low doses you might need to split the daily dose into morning and evening. The low doses of pred don't last long, so by the afternoon your adrenals are getting nothing.

As far as my future, Dr Seo said there are 2 areas to control: 1) Get Wegs under control and 2) Get adrenals functioning (off pred or on a dose that makes them happy). For 4 years we haven't had either area under control The Wegs is behaving and now we just need to get my adrenals happy. Then we'll be at "Ground Zero" and I can begin-- for the first time-- to get stronger. Through a lot of tears I asked if he thought I could ever work as a chiropractor again, and he said "Of course." That was so amazing to hear, because I really couldn't see how that could happen again.

I'll share the tons of info he gave me about Wegs and the drugs in the next post.

**Sangye** · 06-24-2010, 11:35 AM

Other info from Dr Seo:

1) About 35-40% of Weggies never go into remission.

2) People who flare tend to have repeat flares

3) The longest most people are able to stay in remission is 10 yrs.

4) Weggies with kidney-only involvement (even very severe) are easy to get into a solid, lasting remission.

5) Those with sinus involvement have the most difficulty controlling symptoms and disease activity in that area.

6) I asked about a trend I've noticed in our group. Many people with severe kidney (and sometimes lung) involvement who received pheresis seem to have gone into remission faster than others who didn't. He said he thinks it's due more to the ctx/pred they got along with the pheresis. Hitting the disease hard with major ctx and major pred is the best way to get Wegs into a solid remission (versus stringing it along with mtx or other mild treatments). The downside--incredible toxicity and risks of that treatment.

7) Study on using pheresis for moderate disease activity involving kidney and lung will be starting late this year. Pheresis is usually only used for kidney involvement.

There was more... I'm just pulling all this out of my head.

**elephant** · 06-24-2010, 11:50 AM

Congrats Sangye! That is amazing and wonderful news....so glad to hear that you will not be on cellcept and be able to go back to work some day. This is such a wonderful moment...I am so happy....that I have tears coming down on the computer.
Thanks so much for being there for us and giving all of us very educational information that we need.

**Sangye** · 06-24-2010, 11:53 AM

Aww Elephant, you are so kind. I don't feel like celebrating because of the pred thing (and because I feel unbelievably lousy) but it was good to hear the Wegs is finally playing nice. Halfway there.

**pberggren1** · 06-24-2010, 12:09 PM

WOW!!!

We are so blessed to have you Sangye!!!

That is very good information.

**Lightwarrior** · 06-24-2010, 12:24 PM

Originally Posted by Sangye

Aww Elephant, you are so kind. I don't feel like celebrating because of the pred thing (and because I feel unbelievably lousy) but it was good to hear the Wegs is finally playing nice. Halfway there.

Sangye, Thank goodness you saw Dr. Seo before you were in full blown adrenal crisis and past the point of no return. I know you feel badly now, but it is incredible news that you may return to work at doing what you love. I agree with phil and elephant, we are so blessed to have you, even as you are struggling you are teaching us. You are amazing. Namaste

**Sangye** · 06-24-2010, 01:17 PM

Thanks, you guys.

Dr Seo very kindly told me how lucky I am to be able to get rtx. He has patients whose insurance won't approve it. If I didn't have rtx, I wouldn't have survived because the ctx was destroying my bone marrow and not controlling the Wegs. Sometimes we need to be reminded of how blessed we are. And by "we" I mean "me."

**Jack** · 06-24-2010, 06:48 PM

Perhaps not the exact news you wanted to hear, but it still sounds like good progress. Even increasing your knowledge and understanding are a great move forward.

I can fully understand the Pred information because I've experienced it myself. After dropping my dose and encountering problems, it has taken months to fully recover. I have also been quite shocked at how short lived the effects of Pred are. As I have mentioned before, if I forget to take my dose, I feel unwell by the afternoon! I also tried splitting my dose once to see if it would help with the "slow to get started in the morning" syndrome. It did not seem to have any effect at the time, but perhaps I did not give it long enough.

I think I am a classic example of point 6 above. My Wegener's was treated very hard when first diagnose (I was near death!) and it work quickly and very well, but I'm probably suffering for it now.

Looking back now at my early years with this disease when I was having repeat relapses, I was woefully ignorant (pre-internet!). If I had known more, I would have been in a better position to help my docs with management by recognising symptoms earlier and having a good idea about the cause.