Strict Dieting

[John S]

A few years ago I had a heart attack and got several stents installed. After that incident, I went on a strict diet and lost 50 pounds. I was feeling great. Shortly after that, I started getting massive headaches, I had double vision, then one eye swelled up to touch my eyeglasses, giant nasal crusts.... I was in and out of the hospital for several months and on Prednisone for these symptoms. The 50 pounds came back with a vengeance. It was another year before I was diagnosed with GPA.
Fast forward. I have been off of Prednisone for several months and I made a decision to try to lose weight again. I am now back on the diet. Also, I am diabetic.
This morning my waking blood sugar was 99. I had 2 cups of coffee and will drink 4-5 glasses of water before eating lunch at 11. I'll have one poached egg on wheat toast, 4-5 strawberries and some cantaloupe. Then take 5 units of fast acting Insulin. For dinner, I'll eat 10 sautéed shrimp, a piece of wheat toast with honey butter and more fruit. Followed with another 5 units of fast acting insulin. Lots more water throughout the day. One Diet Pepsi around 8:30. I'll test my blood sugar before bed and determine if any slow acting insulin is needed.

I've already lost about 15 pounds, the first pounds come easy.

Am I risking a flareup?

[Dirty Don]

I lost nearly 60 lbs after my debacle with GPA...docs wanted me to do it, I've never had a flare due to the weight loss. Feel so much better on a daily basis. Best to you.

[Pete]

You’re probably not risking a flare, but the Diet Pepsi isn’t doing you much good. Try sparkling water to get your fizzy fix.��

[John S]

You’re probably not risking a flare, but the Diet Pepsi isn’t doing you much good. Try sparkling water to get your fizzy fix.��

I'm going from 7-8 cans of diet pop a day. I like the flavor and I'm not dead yet. Losing about a pound a day now.

[Pete]

Whatever works for you, my friend!

[Masha]

John,
Congrats on the weight loss. The prednisone has caused me to balloon. In my wildest dreams I never expected to be a plump dumpling. I am coming down from high dose prednisone and want to see the numbers on the scale come down too. My appetite significantly decreases as the dosage decreases. This coupled with cooler walking weather in the south should help.
As far as the Pepsi goes, you have come a long way. I was able to eliminate pop a few years back when I read an article about bathroom cleaning. It said if you run out of toilet bowl cleaner, use a can of pop. So I did, it worked and I never drank the stuff again.
Keep up your hard work. What an inspiration!
Masha

[John S]

-22 pounds today

[John S]

-22 pounds today

Ever since I wrote that, my weight has stayed steady. Still eating small amounts and even started riding my bicycle again. I've been at these kind of plateaus before. It will pass and I'll start losing again (fingers crossed).

[Jaha]

John,
Congratulations on your weight loss! It is really hard to do, while in tx for DM and Weg's. Have you tried to eat more of the high protein, low carbs type diet? We can sometimes throw our bodies into starvation mode and that would not be good for people like us. I have been trying to lose weight for almost a year now. I have lost 40lbs so far and need to lose more, of course. I am wishing you all the best for getting off the plateau.

[MikeG-2012]

Ever since I wrote that, my weight has stayed steady. Still eating small amounts and even started riding my bicycle again. I've been at these kind of plateaus before. It will pass and I'll start losing again (fingers crossed).

The more active you become, the more muscle mass you will add on. I found out the hard way. Was losing about 5# a month (an lost a total of 60#) and summer 2017 came around and I was finding myself a lot more active and weight actually went up--and my eating habits had not changed! Talked to the doc, and he was not worried as I was gaining back lost muscle mass from 5 years of little or no activity.

I have went back to losing a few a month and have felt a lot stronger once I got active again. So, the trade off is feeling better with less weight loss. I think I can deal with that.

[John S]

I'm continuing to drop pounds, but slowly. A big advantage, however, has been the reduction of my blood sugar levels. Most nights, I don't need any insulin. No long term insuiulin last night and my waking blood sugar was 85.

[John S]

-30 now. I looked in the mirror. I don't see the missing pounds but I do see the pounds that still need to come off.

I'm coming up on 6 months since last RTX infusion. Headaches returned 3-4 weeks ago but so far no other symptoms.

[NatriceRomeo]

A few years ago I had a heart attack and got several stents installed. After that incident, I went on a strict diet and lost 50 pounds. I was feeling great. Shortly after that, I started getting massive headaches, I had double vision, then one eye swelled up to touch my eyeglasses, giant nasal crusts.... I was in and out of the hospital for several months and on Prednisone for these symptoms. The 50 pounds came back with a vengeance. It was another year before I was diagnosed with GPA.
Fast forward. I have been off of Prednisone for several months and I made a decision to try to lose weight again. I am now back on the diet. Also, I am diabetic.
This morning my waking blood sugar was 99. I had 2 cups of coffee and will drink 4-5 glasses of water before eating lunch at 11. I'll have one poached egg on wheat toast, 4-5 strawberries and some cantaloupe. Then take 5 units of fast acting Insulin. For dinner, I'll eat 10 sautéed shrimp, a piece of wheat toast with honey butter and more fruit. Followed with another 5 units of fast acting insulin. Lots more water throughout the day. One Diet Pepsi around 8:30. I'll test my blood sugar before bed and determine if any slow acting insulin is needed.

I've already lost about 15 pounds, the first pounds come easy.

Am I risking a flareup?


Hi John,
I don’t think this diet will trigger the WG. There is research that suggests fasting 12-16 hours & eating 8-12 hours a day is beneficial & helps with weight loss. I don’t know if fasting will trigger an immune response however. I do know that eating healthy such as the autoimmune diet can help a lot with inflammation. I personally try to keep close to the autoimmune diet but I find it extremely difficult. Please keep us updated. I am interested to know how you feel! Good luck
Natty


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[John S]

Hi John,
I don’t think this diet will trigger the WG. There is research that suggests fasting 12-16 hours & eating 8-12 hours a day is beneficial & helps with weight loss. I don’t know if fasting will trigger an immune response however. I do know that eating healthy such as the autoimmune diet can help a lot with inflammation. I personally try to keep close to the autoimmune diet but I find it extremely difficult. Please keep us updated. I am interested to know how you feel! Good luck
Natty


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My most recent blood test showed that my SED rate was much lower than the previous month.
I'm not following the Autoimmune Diet as I usually eat one egg and a piece of wheat bread daily. I am eating lots of fruit, drinking lots of water and trying to keep to 3-4 ounces of meat per day. No snacking. And I end the day with one, deliciously fabulous Fanny May Trinidad. I think next month, I'll switch that to a Pixie though.

[John S]

Still at -30. I hate being on a 2 week plateau. My blood sugar has been getting pretty low (70) and I've been feeling depleted so I have been slowly cutting back on insulin. For the last two days, I haven't had any insulin. I do take 1000 mg of Metformin twice a day.
My blood sugar is now hovering at 95-115. I'm feeling less run down now so I'm going to resume exercises today.

[Jaha]

A 30lb weight loss is great. It really gets harder as we have less to lose.
I am sure that it is even harder when you combine the DM, with weight loss. Keep up the good work and give yourself a pat on the back for the changes you are making!

[John S]

SED Rate is 9. Now hovering around -35 pounds. Current pants are loose but next smaller size is tight. This is what we call a "First World Problem".

[John S]

-40 today. The last ten pounds took 45 days. Sheesh. Put away some of my 3x shirts that were looking pretty baggy. Hello 2X, I haven't seen you for awhile. Now I can buy clothes from the regular mens department instead of the "Big & Tall" section.

[NatriceRomeo]

Look at you go!! Congratulations!


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[John S]

Look at you go!! Congratulations!


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When I do look at me, I see that my "Man Boobs" are still bigger than many women's. I see 60 more pounds that I need to shed.

[NatriceRomeo]

Don?t be too critical of yourself! This is a journey!


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[mishb]

Well done John.

Nothing wrong with a sense of humour either

Good luck with the next size drop, and enjoy the new clothes

[John S]

I have been hovering between -42 and -39. Thanksgiving was a challenge. Stuffing, pies, cookies and little bowls of snacks. Halloween saw little chocolate bars disppearing. Once I take one illicit bite, I go into cravings that I am powerless over. It's the first bite of the cookie that gets me, not the fourth cookie.
On the bright side, I have discontinued isosorbide mononitrate this month and cut my enalapril in half.

[Bing505z]

I have been hovering between -42 and -39. Thanksgiving was a challenge. Stuffing, pies, cookies and little bowls of snacks. Halloween saw little chocolate bars disppearing. Once I take one illicit bite, I go into cravings that I am powerless over. It's the first bite of the cookie that gets me, not the fourth cookie.
On the bright side, I have discontinued isosorbide mononitrate this month and cut my enalapril in half.

Ahhh. Enjoy. It's the Holidays!!! Cheers!!

[[email protected]]

My suggestion would be to switch to the anti-inflammatory Dr. Stephen Gundry “Plant Paradox” diet. After 20 years of relapsing Wegener’s/PAN the best results I’ve had yet are on this diet. I developed Type I Autoimmune Pancreatic Diabetes after being treated with huge amounts of Prednisone, also Sjogren’s, Hashimoto’s thyroiditis and Adrenal Insufficiency. If I venture off the diet I get worse. The diet doesn’t appear to stop WG/PAN recurrence entirely but it appears to help and to extend the length of Autoimmune disease free activity. I can’t recommend it highly enough. In addition to the books The Plant Paradox and The Plant Paradox Cookbook there are many helpful videos by Dr. Gundry at his website and on YouTube.

[John S]

My suggestion would be to switch to the anti-inflammatory Dr. Stephen Gundry “Plant Paradox” diet. After 20 years of relapsing Wegener’s/PAN the best results I’ve had yet are on this diet. I developed Type I Autoimmune Pancreatic Diabetes after being treated with huge amounts of Prednisone, also Sjogren’s, Hashimoto’s thyroiditis and Adrenal Insufficiency. If I venture off the diet I get worse. The diet doesn’t appear to stop WG/PAN recurrence entirely but it appears to help and to extend the length of Autoimmune disease free activity. I can’t recommend it highly enough. In addition to the books The Plant Paradox and The Plant Paradox Cookbook there are many helpful videos by Dr. Gundry at his website and on YouTube.


Thanks for the suggestion. My current diet is working for me. Fruit for breakfast, a light lunch with no meat and possibly one slice of bread, a small dinner with 3-5 ounces of meat. Very little caffeine, no snacks, and one piece of Trinidad, a delicious chocolate from Fannie May, before bed.

Also, riding a stationary bike for 30 minutes each day.

[[email protected]]

Sounds pretty healthy. Will just mention here that Plant Paradox diet is all about establishing the right gut bacteria with the scientific evidence that doing so leads to many health benefits including life extension, maximum relief from Autoimmune disease, weight gain, and aches and pains. This diet does restrict most fruits, gluten and other grains, and promotes certain vegetables, restricting others. It is based on seamless scientific research and brings relief of severe disease to thousands of patients. Thanks for your response.

[John S]

For Christmas, Santa brought me something that I had lost. Five pounds! Time to get back on the diet.

[John S]

It's pretty much stopped being "dieting" and become "lifestyle change". I'm currently hovering around minus 45 pounds. I find myself having more encounters with snacks than I want and giving into temptation too often.

I would like to lose another 10 by the end of March but it doesn't look like that is likely to happen.

[Bing505z]

Yup..exercise...eat right..you know, everything in moderation.....but do allow yourself to indulge occasionally. Takes 21 days to form a habit...takes 21 days to break a habit. You don't want to be too "female" about it...you know...the one who constantly whines about her weight LOL. You know...the size zero/two chick...the one you can place your hands completely around her waist...but is still obsessed with her weight...:smile1::lol:

[Stearman]

I'm going to get insulated hunting boots (https://www.villagevoice.com/best-insulated-hunting-boots/) and move from the stationary bike to the rowing machine today and see if I can burn a few more calories that way.

That's what I'm trying to accomplish too, Mike. I just feel the best way when I hit that sweet spot of slightly gaining muscle and losing weight.

[John S]

I'm going to move from the stationary bike to the rowing machine today and see if I can burn a few more calories that way.

[[email protected]]

I’m now convinced beyond a doubt that weight gain is often a fact of relapses and treatment (prednisone is the huge one) and of course the inactivity which can accompany a relapse such as the one aid just experienced with super high blood pressure, tachycardia, weakness and pain from polyneuropathy, not to mention the GI effects from having blood supply to one’s guts cut down tying them up in painful spasms.

What worka (for me) under these (and all other conditions) is a strict KetogenicHigh fat, low carbohydrate diet. I even purchased a kit to test blood ketones which I keep in a range of 13 or higher. If you go on Kindle, Audible or Amazon you will surely find a wide range of books on this subject. Or Google Ketogenic LCHF diets.

Please let let me know what you all think of this and I can provide considerable resources if you like.

[adrianwillson]

Eat Good Food and stay healthy.

[[email protected]]

Agreed Adrian & all of you managing to stay healthy with systemic Vasculitis. Knowing the source of food is important to me - purchasing sugar-free, NonGMO, gluten free, Organic, Grass-fed meats, non farm-raised fish (only those wild caught in the deep sea) - well the list goes on...

Science indicates that a sugar free, Very low Carb diet, with High fat ( the right kind), etc. is the single most important thing we can do for our health- sick or not.

Of course exercise is important- use it or lose it!

Humans evolved on this diet for millions of years and it is only very recently that our diet became full of sugar, grains, processed foods, & inflammatory foods which are killing us all off today. Anyway- I write too much.

Best to all of you who struggle with this as my son and I do. Thanks for sharing.♥️

[John S]

I fell off of the rowing machine. That brought a lot of attention from the gm staff. They were concerned that I might have hurt my head. Out of embarrassment, I slunk off to the stationary bikes again. Maybe next visit to the gym I'll ask how to do the rowing machine correctly.

:)

[Bing505z]

I’m now convinced beyond a doubt that weight gain is often a fact of relapses and treatment (prednisone is the huge one) and of course the inactivity which can accompany a relapse such as the one aid just experienced with super high blood pressure, tachycardia, weakness and pain from polyneuropathy, not to mention the GI effects from having blood supply to one’s guts cut down tying them up in painful spasms.

What worka (for me) under these (and all other conditions) is a strict KetogenicHigh fat, low carbohydrate diet. I even purchased a kit to test blood ketones which I keep in a range of 13 or higher. If you go on Kindle, Audible or Amazon you will surely find a wide range of books on this subject. Or Google Ketogenic LCHF diets.

Please let let me know what you all think of this and I can provide considerable resources if you like.

[email protected] With this diet are fruits (oranges, berries etc) that fight inflammation allowed? Also a note about prednisone and daily low doses of it = studies show it will decrease your testosterone levels. Low T = slow metabolism and muscle loss = weight gain. Plus men with Low T have increased risk of cardiovascular disease, diabetes and metabolic syndrome, osteoporosis and so much more. Low T = low sex drive. And don't kid yourself, it is apart of a high quality life, well being and happiness. The daily low dose pred is nonsensical.

[Alysia]

Eat Good Food and stay healthy.

Sorry, but it doesn't work like that with wg.
And I would be careful with every dramatic diet.

[Keith]

I dropped 35 lbs with Keto diet in 2 or 3 months which was great. Unfortunately, my cholesterol elevated much higher than a year prior. The doc gave me 60 days to correct with diet and test again.

This doesn't happen to everyone on Keto. Likely genetics, age (51) and too much red meat and bacon :laugh:. Needed more fish and chicken.

[[email protected]]

Agree Prednisone is unwarranted over long time periods (or perhaps at all). As patients who have been treated with prednisone, we no longer agree to take it at all. We’re successfully on Rituxan but must work out some medical care issues to find tune. As far as diet goes, yes this diet allows low carb fruits & anti inflammatory foods when combined with an overall Ketogenic practice.

[[email protected]]

I dropped 35 lbs with Keto diet in 2 or 3 months which was great. Unfortunately, my cholesterol elevated much higher than a year prior. The doc gave me 60 days to correct with diet and test again.

This doesn't happen to everyone on Keto. Likely genetics, age (51) and too much red meat and bacon :laugh:. Needed more fish and chicken.

You bring up a great point regarding Cholesterol! Unfortunately our doctors (like most everyone else) are uninformed/uneducated about nutrition. The new science on nutrition indicates that a cholesterol is not bad for us per se. The problem arises when we have high cholesterol, high carb, and sugar combined. This combination causes cholesterol to stick to the inside of our arteries in susceptible people. The Ketogenic diet is low carb, and nearly zero sugar. I haven’t had a craving for these foods since I began this. I will be happy to site references which prove this concept.After a recent Cardio angiogram my Cardiologist says my coronary arteries couldn’t look better (glad something does!).

[John S]

I had a flu, bronchitis thing this past week. Feeling much better now and hope to return to the gym today. While, ill, I lost my appetite, I am now down 50 pounds. It's a hell of a way to lose weight but I'll take what I can get. Half-way there.

[[email protected]]

Hi John,

Lucky you, I believe! As my liver goes haywire in relapses I usually gain weight.

[John S]

Hi John,

Lucky you, I believe! As my liver goes haywire in relapses I usually gain weight.

You'll be on the road to recovery soon. Getting off of Prednisone really helped kick start the weight loss.

[John S]

March was not good to my diet plan and lifestyle. I'm up around 5 pounds right now. Last week I took the extended family to Disney World. We had one of those meal plans and I am not one to waste meals that I've already paid for.
We had one day that was rainy and cold and I got a bit of a cold. Now I'm Feeling under the weather, massive sinus headaches and very exhausted feeling.
I'm back on the diet again.

[NatriceRomeo]

Don’t be too hard on yourself. It’s ok to fall off the wagon multiple times. You’re doing great! You’re trying & that’s what counts. We are all cheering for you! You got this!


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[John S]

I've lost all sense of diet and need to re calibrate my tongue. In the meantime, I hopped on the bike and rode 6 1/2 miles today. I haven't gone that far in a couple of years. I'm using a heart rate monitor and trying to stay around 90 bpm but it was up to 110 on a steep overpass.

[John S]

Diet? What diet? Gimme that box of donuts dammit!

After the holiday I need to get back to celery and water

[Pete]

John S

Absolutely hilarious!! Hope you’re doing well otherwise!!

[Masha]

I made us root beer floats for Independence Day. Used diet root beer , frozen yogurt, frosted mugs and PAPER straws.
Also had a yummy watermelon. Best news yet, my wegs mouth could handle the cold food.

[John S]

Hi John,

Lucky you, I believe! As my liver goes haywire in relapses I usually gain weight.

Nice guitar. National?

[John S]

Over the last few months, my old eating habits came back. One day I realized that I had packed 15 pounds back on. I've been on my strict habits again for 4 days and am determined to lose the 15 plus 20-30 more.