Diet & suppliments

[Lucy65]

Hi!
My husband was just recently diagnosed with Wegeners/GPA.
We are wondering if anyone has changed their diets, ie Paleo, Mediterranean, anti-inflammatory and found relief?
Have you added supplements to your diet?
Thanks!

[Pete]

I take the following OTC meds/supplements with my doctors' blessings...

For sinus issues (allergies, congestion, etc.):
10 mg daily phenylephrine
10 mg daily loratidiene (claritin)

For nutrition:
Caltrate 600+D twice daily
Centrum Silver

For inflammation (in addition to 5 mg daily of prednisone):
Curamed 750 mg - Turmeric. This helps with an achy hip that doesn't like to power walk.
I add a tablespoon of coconut oil to my oatmeal each day.

I would ask your doctor before adding any supplements or OTC meds to your treatment regimen. Some supplements may have adverse interactions with prescription meds or may stimulate your immune system.

[Debbie C]

Hi Lucy.. I take a probiotic along with 2000 i.u. Vit D and 1200 Calcium

[Debbie C]

Oh... I also have changed my way of eating as have a few others on here. I don't eat much red meat,usally fish,chicken or I get the turkey off the bone in the deli.I don't eat any processed meat at all and I try to stay away from "white ingredients, like flour,sugar,white spaghetti . I can tell when I eat something that isn't good for me ..my stomach will get bloated !! But both the paleo and the med diet look good. Geoff had mentioned a Sirt food diet that I also want to check out. The cookbook is on Amazon.
Sorry to hear about your hubby,but you have found a great place to get many answers. What kind of involvement does he have ( sinuses,lungs,kidneys ? ) What meds is he on ?

[Lucy65]

We just got the diagnosis on Wednesday after a kidney biopsy.
We don't know if it was caught early or not. Cleveland Clinic Dr was going to try and get the IV infusion of rituxemab done locally.
If not, we will be traveling back there. Currently he is on prednisone and SMZ/TMP.
He's actually doing great! No aches or pains like he was having in July.
- It took a long time for anyone to figure out what was going on, thought it was RA initially.
RA Dr. did the right thing and sent him to a specialist.
Thanks for asking about him.

[Pete]

Hi Lucy,

Where are you guys from? I see Dr Villa Forte at Cleveland and have been able to get my rtx infusions at Ohio State here in Columbus. Good luck!!!

[vdub]

As others have said here, be careful with supplements. Many supplements actually have a medical effect, some bad, some good, but they are untested for the most part. Be sure your doctor is aware of what supplements you are taking since some don't play nice with prescribed drugs.

[renidrag]

I would also like to take supplements, although I do take Magnesium, B12 and Calcium w/D, many I can't because of being on Warfarin. Check closely and ask Doctor. By the way, had a major slip yesterday while shaving, no more goatee.
Dale

[Lucy65]

We are in the Sandusky area. The Clinic is a little over an hour away.
He is also seeing Dr. Forte.:smile1:

[Pete]

We are in the Sandusky area. The Clinic is a little over an hour away.
He is also seeing Dr. Forte.:smile1:

Dr Villa Forte worked with a nephrologist from the team who diagnosed me to supervise my rtx infusions. The OSU infusion center is about 20 minutes from home while Cleveland is 2+ hours one way. Getting it done here adds to the lead time, but it hasn't been an issue so far.

[Debbie C]

I also go to the CC but I see Dr. Carol Langford. He is in good hands there. Hope you are to get the infusion done soon as it usually takes a few months to actually kick in.

Dale...way to go !!

[MikeG-2012]

By the way, had a major slip yesterday while shaving, no more goatee.
Dale

But, you look so much younger without it Dale!! ROFL! Been there, done that, MANY times. (-8

[BookNut]

The advice to check with your doctor is a great one. I do NOT have Wegs...but have inflamation that cuases me severe sinus issues and persistent asthma. I have had great luck with a grain free diet. Pretty much Paleo, but I do eat small amounts of dairy products. I thought going grain free would be just horrible...but I have learned how to cook that way and it has become much easier. If you decide to go that route, you can send me private messages or post questions here and I will be happy to help. It has turned out that I am particularly sensitive to wheat and rice. I have cheated once with cookies and accidently ate soup thickened witn rice starch. Both times I broke out with a fiery whole body rash and had a serious breathing downturn. all of this began in my 60s. Anyway ... I am happy to help with recipes and substitutes for flour etc. if you need ideas.

[JustMe]

I changed my diet - anti-inflammatory. It's very strict and most would not want to do it since it does take out some of life's greatest enjoyments. :(

[gunnyl]

You should research this site and consult a doctor before taking supplements
https://www.opss.org/

[NatriceRomeo]

I was trying the anti inflammatory diet. To be quite honest with you all.. I was sick of basically eating bark and tuna. I decided to get an allergy test done. I sent in a few strands of hair & was tested for 800 common foods and allergies. It turns out that I am sensitive to preservatives, cocoa bean, pineapple, artichoke and a bunch of other things. So in a sense it?s made my life easier and harder. If anyone was interested I found a coupon for this testing on Groupon.


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