Newby

[Marli Hattingh]

Hi everyone, thanks for accepting me, i am new to this GPA, was admitted to hospital in April 2016, where they picked up that i have Tracheal Stenosis, as well as that i have a big cavity in the sinuses.... Did alot of tests, tested positive for C-Anca, they did not yet get it confirmed with a biopsy, bit they started me on Pulmison and Cytoxan, just want to find out, is there anything that i can change in my eating habits that will help? And is there any advice on drs in Gauteng, South Africa.

[andrew]

Hi Marli and welcome. Steroids and Cytoxan are standard treatment in most cases. There are lots of differing opinions on diet. If you have kidney involvement which I'm assuming you don't then a renal diet can help. At this point the best I can suggest is just eat healthy and give your body as much good stuff as you can. There are others on here with better diet advice than me though :)

For doctors, I'm sure there are several members from South Africa here - hopefully one of them will chime in.

[Alysia]

Welcome to the forum Marli.

Steroids and ctx are the common treatment for wg. Although there is also another treatment which is common, rituximab. It is more expensive so docs usually give it if other treatments couldnt help.

Eating healthy food is sure important. No sugars or perservatives or junk food. No alcohol.
Anyway, there is NOT any way to treat wg by any diet. We need the meds. No choice. Sorry.

We have Rose from South Africa. I didnt see her around already long time so I suggest you to send her pm. This is her profile http://www.wegeners-granulomatosis.com/forum/members/rose.html

As for tracheal stenosis there is subforum here for this issue: Tracheal Stenosis (http://www.wegeners-granulomatosis.com/forum/tracheal-stenosis/)

Good luck and please update us how are you doing.

[Alysia]

P.s. Karin is also from South Africa. Her mother has wg. This is her profile: http://www.wegeners-granulomatosis.com/forum/members/kieshara.html

[Green Grass & High Tides]

Hi Marli,

Great suggestions so far, I would just add that cytoxan can cause bladder issues so be sure to talk to the doctor about ways of protecting the bladder.

Wegs nearly took me a few times. I had to give up meat, alcohol, cigarettes, crap sugars, pesticide coated food... mostly all in small steps, one day at a time.

The one thing that had a noticeable difference for me is juicing farm fresh green veggies when my GI is inflamed and making nutrition rich smoothies when GI is doing ok.

Best wishes to you,
Tom

[Marli Hattingh]

Thanks to all of you, it is so special to get feedback, i will follow the advice and I will keep you all up to date, at this stage i am not feeling so great, and it feels like my kidneys are taking a bit of a strain, i am seeing the ENT and Pulminologist again on the 27th of June. Let this day begin, i will be juicing away:thumbup:

[Alysia]

at this stage i am not feeling so great, and it feels like my kidneys are taking a bit of a strain, i am seeing the ENT and Pulminologist again on the 27th of June.

How much is your creatinine ? We need to keep an eye on the kidneys. I hope yours are not involved.

[annekat]

Welcome, Marli. It sounds like you are taking a common sense approach. Every case is a little different. I, too, have the big cavity inside my nasal/sinus area, where the bony structures have been eroded by the disease. MY ENT says the upside to that is I'll not be bothered by sinus infections the rest of my life, as there are few places for mucus to collect and fester. I still have some collecting around the top of my nose, so must do the daily nasal saline rinses. Cytoxan can clear things up pretty fast, and it is best to be on it for not more than a few months, then they may switch to something milder like methotrexate or azathioprine. While on CTX, be sure to drink LOTS of water every day to keep your bladder flushed out so that the toxins cannot collect there, as there is a risk of bladder cancer later on. If WG is confined to your sinus area so far, that is good, and with early, aggressive treament, it may not appear in your lungs or kidneys. It is unpredictable though, so you are right to minimize the risks with a healthy and stress-free lifestyle, and be ever-vigilant, continue with regular blood testing even if you feel well. The c-Anca is not the most important indicator, as it is not always reliable, but the tests that measure your creatinine (kidneys) and your inflammation levels, as well as things like blood counts for anemia,and your glucose levels, are important to keep tabs on. Keep us posted on how it goes and feel free to ask anything anytime and blow off a little steam if you need to.

[Alysia]

I love your wise posts, Anne. Always a pleasure to read.

[annekat]

I love your wise posts, Anne. Always a pleasure to read.


Thanks, Alysia. My wisdom comes from reading this forum and learning from those wiser than I am! After awhile, things sort of sink in.

[Marli Hattingh]

Hi Ann

Thank you for your post, i am learning alot from you guys, as i start this treatment, i am two months in and still it feels like i am grabbing everywhere trying to understand it all better. I do not know what my creatinine counts is.... The dr only told me that my C-Anca was 10.. But when i see him on the 27th i will aks him about that, is all drs like mine? They do not tell me much and try to avoid my questions....

[Dirty Don]

They do not tell me much and try to avoid my questions....

I would seriously start looking for other docs if they avoid your questions. Best to you.

[annekat]

If they said nothing about your creatinine, it s probably OK, but it is one of the things that must be watched every time. A lot of us don't have kidney involvement, but WG can change its mind at the drop of a hat, and if your creatinine went up over the normal range, even a little, that would be a big concern. In 5 years, mine has never been above normal range.

[Alysia]

Hi Ann

Thank you for your post, i am learning alot from you guys, as i start this treatment, i am two months in and still it feels like i am grabbing everywhere trying to understand it all better. I do not know what my creatinine counts is.... The dr only told me that my C-Anca was 10.. But when i see him on the 27th i will aks him about that, is all drs like mine? They do not tell me much and try to avoid my questions....

I have seen worse docs and better ones... WG is serious enough to ask your dr. To give you all info, explanations and tests needed. You also deserve to ask him to consult with wg experts if he is not an expert, if things are complicated, if you want a second opinion etc. I guess that in South Africa, like in Israel, there are only very few weggies and most docs are ignorant. So it is perfectly ok to ask him to consult about your case. My WG dr. Consults with prof. Jayne in the UK, who is the wg dr. Of some friends here in the forum.
My beautiful Phil used to say that after all we need to be our own best docs.

[Alysia]

Here is one of My beautiful Phil's posts about being your own best dr. :

2442

[me2]

You have to be able to ask questions and get all of your questions answered. It is your life and your health on the line. When I first began the journey of this illness about forty years ago I was blown off by docs who didn't want to answer questions and because I was shy it almost cost me my life.

For my part I do a lot of thinking about my appointment ahead of time and write down my questions and organize my thoughts. I appreciate that docs are busy and often pressed for time.
Of course , in the course of the visit , other things will come up and then you will have questions about those things.

I remember a turning point for me was a doctor getting up to go because he was in a hurry and I said "We are not done yet I have more questions". He was not happy but sat down and we finished my questions.
This disease has been a crash course in assertiveness training for me. I am lucky that now I have docs that are really good about wanting to answer my questions.
Still, if I get a new one that waffles - I bring the hammer down on MY appointment- "We are not done yet I have more questions"

Another improvement in this area has been email. I am able to email my doc with questions and get a response a few days later. I work very hard to not abuse this privilege as I know it takes a lot of time for them to go through emails. Also , it helps a lot to have this group who can answer many, many questions- often better than some docs.

[drz]

Here is one of My beautiful Phil's posts about being your own best dr. :

2442

This was good advice I got from Phil shortly after I joined this forum. I was in a nursing home at the time working on recovery things like learning to walk again. I had just been transferred from a hospital where I spent three months just trying to survive. My last reply to this message seems to have disappeared so I will try repeat it.

i learned to follow my lab work and the doctors educated me on what tests were important to monitor my progress. I got copies of my results and stored them on my Ipod in a medical record program. I found other doctors I saw often appreciated this info especially on an ER visit.

I do get some updates on research from newsletters like the Vasculitis Foundation and Association for Rare Diseases and a few medical email lists. I generally rely on my doctors for pertinent info on research in this area. My treating doctor often attends the conferences and my consultant often is presenting on his research in this area at the conferences. And most important new developments in this field often end up posted here as we have some very sharp and knowledgeable here on this forum.

[Alysia]

Thanks a lot for sharing, drz ♡♡♡