Weggie Survival Tips

(I don't have kidney involvement, so I don't have any kidney WG survival tips of my own, but there are some links below that may help)

Calcium:
Take 4 hours away from pred (prednisone). Pred reduces calcium and calcium reduces the effectiveness of pred – so they need to be taken 4 hours apart.

For Fatigue:
Emergen-C - it even helps with mental fog; Vit E, Vit C, apples, naps and rest. Light exercise, if and when possible.

For Insomnia, including prednisone induced insomnia:
I will tell you what works very well for ME. Take all of your pred early in the morning. Do not have anything that contains caffeine at all. Take Calms Forte an hour before bedtime - 3 work wonders for me, you may need 4. Hyland's Calms Forte is availble at Health Food Stores and online - it's natural with no side effects. This works for ME - others say it does not work for them, but if you have coffee, even de-caf, it will counteract the Calms and it won't work.

For Cough:
Sinus irrigation
Nebulizer with pure straight saline
Saline nasal spray
Zicam Mist
Cherry Bark
Cough syrup with codeine
Rotate these

For Mucous Reduction:
Bromelain
Nebulizer with saline
Sinus Irrigation

For Memory:
Ginkgo

For leg/toe/foot/finger cramps/distortions caused by prednisone:
Vit E 600iu/day

For Inflammation:
Anti-inflammatory diet & supplements

For assisting your treatment and when the doc takes you off treatment:
Glutithione
Anti-oxidant complex
CO-Q 10
Vit E
Vit C
Anit-inflammatory foods & supplements

For Pred Weight and Moonface:
Sugars and carbohydrates raise the blood glucose level which is inflammatory.
Cut out refined white foods: sugar, flour, rice, bread - and the bad fats. Eat whole grains: brown rice, whole grain bread breads & cereals, etc. Eat the good fats: omega 3’s – they help break down fat and carry it out of your body, in addition to fighting the inflammation caused by WG.
Use portion control – hard on high dose pred, but try. Eat veggies if you are hungry – not bad carbs, eat the good carbs.
Munch on celery rather than cookies or chips. Celery is negative calories! You burn more calories eating it, than it contains!
Drink water or green tea (unsweetened) rather than soda.
I lost 30 pounds on pred using a basic diabetic & anti-inflammatory diet.
Plus a diabetic diet is a good idea on pred - as pred can cause diabetes. The diet will reduce the odds of developing diabetes and keep the weight off.
Green tea is anti-inflammatory and promotes weight loss. Most of the anti-inflammatory foods/supplements promote weight loss.
When you are able, walk as much as you can without overdoing it. When you are able, exercise as much as you can without overdoing it.
For more support in this area, please join:
http://health.groups.yahoo.com/group/weggies4weightloss/

Pred Reduction:
For lower doses of pred tapering, I was having a hard time with it - so I did this...going from 10 to 9 - I did 9 one day and 10 the next, then 9 then 10...I did it for 10 days then went to 9 everyday. I stayed at 9 for a month, then did 8 one day and 9 the next, then 8 for 10 days...and so on & so forth & it was great! I never felt cranky or tired or sluggish or achey or anything! I didn't feel the taper at all. The other thing I did was really implented anti-inflammatory foods & supplements - because pred is an anti-inflammatory and my thinking is I needed something to off-set the taper - where the pred would leave off the foods/supplements would help, I was hoping...and it really seems to have worked miraculously well in my case!
I have learned over the years that winter is not the best time to reduce prednisone. I can not successfully do it in the winter. I need warm weather for successful pred reduction. And then I learned to do every-other-day dosing each time I taper, even at 1 mg tapering - going from 1 to 0, I think I would do 1mg every-other-day and 1/2mg every other day for awhile - then 1/2mg everyday for awhile, then 0 every-other-day with 1/2mg every other day until it feels ok to go to 0.
Also Emergen-C is a great product to help with the energy lows of tapering. 2-3 packets a day as needed. 2-3 works well for me. And I have been known to use caffiene medicinally when tapering.
I am on 7mg - tried to go to 6 during the winter and felt great doing every-other-day tapering to get to 6mg - no withdrawls whatsoever! No need for caffiene, Emergen-C or anything (I do take vitamins everyday).
But then - being winter - after a few weeks on 6, I got all kinds of symptoms & infections & wound up back on 7mg. I will stay at 7 another month or so until spring has sprung then I will taper again. That's when I see my rheumy again too.
This is what has worked well for me over the years.

Grapefruit & Grapefruit juice:
Avoid while on cytoxan – it makes cytoxan more toxic. Check it against other meds, as well.

Coping:
Count your blessing everyday.
WG is treatable – many diseases aren’t.
If you can’t think of your blessings, I will help you. Contact me.
Know that with the right docs, treatment and lifestyle changes, you can achieve improved health and live a normal life. It may not be the life you had before – but you can and will enjoy life again.
Accept and respect your limitations.
Rest. Rest before your body tells you to.
Don’t push yourself.
On your good days, do something you enjoy without pushing yourself.
On your bad days, read, watch TV, rest and take lots of naps. Your immune system heals when you sleep – so take lots of naps and go to bed early knowing that you are helping your immune system heal and beat WG.
Don’t let the disease define who you are as a human being. You are so much more than the disease. You are bigger than it is.
You can and will get thru it.

Support:
http://www.weareb.org/mailman/listinfo/wg-discussion

Emergency Info:
List your doctors names and phone numbers. List your medications and the dosages and schedule. List contact people (family or friends) with phone numbers. List everythting you would need an ER doc to know in case you are unable to communicate. If you don't have a good WG doc yet, a list of WG consultants should be on your list. A link to the consultant list is below.
Keep a copy of your emergency info in your glove box and a copy in your purse or wallet.

Limited WG:
There’s really no such thing.
Limited WG is an outdated term that most if not all WG experts do not use anymore.
Limited WG is just as life threatening as any WG.
All it really means is WG without kidney involvement. It is not a guarantee that the kidneues will not become involved at some point. Limited WG needs to be treated aggressively.

Conventional Treatment vs Alternative/Natural Remedies:
I have gone complelety conventional and I have gone compleltey non-conventional.
I now do both. I believe that both play an important role in fighting WG and getting better.
I believe that going completely non-conventional could be very dangerous.
I also believe that going completely conventional is not as effective as implementing natural remedies, such as an anti-inflammatory diet.

Doctors:
Stay closely monitored the rest of your life, even in times of remission. You must have knowledgeable docs or at least a doc who will consult with a WG expert – if not, get one who will. Don’t take the docs word for it that he/she is knowledgeable. I took the docs word for it and the doc told me I didn’t have WG because I didn’t have kidney involvement, he told me he was WG knowledgeable and I believed him. Learn enough about WG so that you can tell if the doc knows WG or not. If he/she says stuff that doesn’t add up according to your research on WG, find a doc who will be honest with you about their limited knowledge and will consult with an expert and follow their recommendations for your care. It is imperitive.

Learn More:

http://www.wgassociation.org/

http://www.wegenersgranulomatosis.net/

WG Consultants (WG expert docs) who will guide your doctor anywhere in the world FREE of charge:

http://www.wgassociation.org/aboutwga/consultants.html

Another weggie's blog site:
Cynthia E Bagley, I am at:
http://cynbagley.blogspot.com