PDA

View Full Version : How to Beat Some of Pred's Side Effects



Sangye
07-18-2010, 01:16 AM
When I was first dx'ed in 2006, I was started on "pulse" steroids--1,000 mg IV solumedrol (equiv 1,560 mg oral pred) for 3 days. It was dropped to 60mg from there and gradually tapered off within about 8 months. I gained 40lbs in 4 months, was constantly soaked in sweat, constant hot flashes, had an unstoppable appetite (especially for salt, fat, dairy and heavy foods), alternated between rage and depression, couldn't sleep at all, had difficulty concentrating due to racing thoughts and retained enormous amounts of fluid. Typical list for someone on high-dose pred.

If you can believe it, my original local docs never told me about a single one of these side-effects. As a chiropractor (a physician not trained in drugs), I only knew pred would give me a moon face, make my tendons/ligaments more susceptible to injury, cause bone loss and damage my adrenals. None of my patients had been on high-dose steroids or I would have known more. I also had no internet access to support groups or google for the first 2.5 years after dx.

Once I was discharged on 60 mg pred, I noticed a huge increase in my appetite but thought it was because I was so depleted from the prolonged lung hemorrhaging and being on chemo, etc.... I thought it was like how cancer patients have to eat so much to keep up with chemo. So I ate what I craved, thinking I was feeding my body what it needed. It had always been accurate before.

The weight gain was unbearable and fast. Even when I asked my docs about what was happening to me, they dismissed it and told me I was overreacting. My leg literally burst open due to fluid retention and they still said it was all in my head. I've borne a considerable amount of resentment these 4 years about it, always wondering what it might have been like if I had just been informed. And maybe I wouldn't still have all that weight and another 20 lbs. I bet some of you can relate to being totally in the dark about these changes.

I never had the chance for a do-over (and was terrified to need one, of course), until now. But I've been back on high-doses the past 2 weeks and it's a different world because of what I now know. We can't beat all the side effects, no way. But I'm surprised at how much we can. I'm going to use this thread to list what I'm doing to get through this. It's working. And it ain't rocket science. :D

Jack
07-18-2010, 01:33 AM
Looking forward to your posts Sangye.
I've had weight gain, weight loss (muscle wastage), cataracts, osteoporosis, thin skin, darkened skin, sweating, moon face, joint pain and mood swings. Probably a load of other stuff too, but at least I'm still here. ;) I'm not sure that I could have done much about any of these.

Edit: and of course, my adrenals will never work properly again.

misskay
07-18-2010, 02:32 AM
oh boy... can I relate. I gained 6 pounds in 6 days on 60mg daily of Pred. I'm just starting to get puffy faced though. The sweats!!! OMG, cannot stand it. Feels as though I'm burning from the inside out. And the mood swings. I've told my husband that if something is actually wrong I'll tell him, but until then to just ignore the crazy lady in the corner who may burst into tears for no apparent reason.

Luckily my doc has warned me about the weight gain, but says until I'm back to my original (pre-sick) weight not to stress too much about it, but when I crave something to try to go for carrot sticks or something as often as possible. Not sure how I'll do trying to 'diet' while on the Pred, I've always been very thin and been able to eat whatever I wanted with no worries. I'm 5' 8" and pre sick weight was 130. (was at 104 2 weeks ago) So now that I may have to actually watch what I eat and be conscious of my caloric intake... yikes!

Sangye
07-18-2010, 02:47 AM
Luckily my doc has warned me about the weight gain, but says until I'm back to my original (pre-sick) weight not to stress too much about it, but when I crave something to try to go for carrot sticks or something as often as possible.

Unfortunately, that weight gain will all be fat. Pred destroys muscle and causes fat to be added. S/he is right about the carrots, though.

Jack
07-18-2010, 02:47 AM
oh boy... can I relate. I gained 6 pounds in 6 days on 60mg daily of Pred.
That sort of weight gain is fluid retention rather than fat. This can be caused by steroids, but you should also be having your kidney function monitored. If you are retaining too much fluid, you may need something like Furosemide to sort it.

Sangye
07-18-2010, 03:30 AM
The key is realizing that pred causes imbalances in certain elements that make up the body.

(If you're not familiar with such things, I did a thread about Ayurveda that has links to easy, background info. http://www.wegeners-granulomatosis.com/forum/general-wg-chat/788-wegs-ayurveda.html )

Basically our bodies are made of 5 different elements-- air, fire, water, earth and space. To use this info about pred, you really only need to know about Fire and Earth/Water and I'll explain what you need to do.

The two major imbalances that pred causes are:
1) Increase in the Fire element (Pitta) and
2) Increase in the Earth/Water element (Kapha).

Signs of excessive Fire (Pitta):
anger, impatience, frustration, short temper, voracious appetite, fluid retention, sweats, hot flashes and insomnia.

Signs of excessive Earth/Water (Kapha):
fluid retention, weight gain, depression, desire for heavy foods, desire to eat often

Doesn't that sound just like pred? :D

If you pacify excess Pitta while on pred you get:
calmer mind, ability to cope, patience, normal appetite, greatly reduced sweats, normal fluid retention, minimal hot flashes, sound sleep.

If you pacify excess Kapha while on pred you get:
normal fluid retention, minimal weight gain (if any), only hungry at mealtimes.

(Note: Both Pitta and Kapha excess will cause fluid retention.)

Okay. Just sit with that info for a bit and I'll be back on to explain what the heck to do with it. :D

Jack
07-18-2010, 04:10 AM
Its like being at school isn't it? ;)

me2
07-18-2010, 05:05 AM
I sit in the back of the class with the trouble makers.
I can relate so much to everything said here. Being kept in the dark by doctors, having doctors deny what I am going through, etc.
I am very interested to hear about tactics in the war against drugs. Ok, well, just in the war against prednisone side effects, leave the others for another time.
I remember fondly way back when , when I was in the dark and left to try and cope with little knowlege and no support, that I came up with a strategy that helped me at the time. It was not perfect but it was better than where I was headed. Food cravings were driving me insane.
A cruel fate since, like Sangye, I had been able to trust my inclinations in the past. Now, I had to do battle with them. So, I was craving sweets. As in interesting side note, let the record show that in all my life I had not been one to crave sweets. In fact it was rare for me to eat sweets.
Now , here I was buying candy bars. I felt like I was buying herion each time I would buy a Babe Ruth , or Twixt, or Hershey's dark chocolate with almonds.
So, as I begin to realize the seriousness of my disorder I knew I was loosing the battle of will power. Also , strange because in the food department I had always had fantastic will power. I could commit to strange diets at will and stick to them. I was a total vegetarian for over year once to see what it was like.
Now , here I was powerless before the angry god prednisone who wished to destroy my physique, my will and ultimately take down my heath some more notches. What could possibly save me?...
Pumpkin pie.

I know, I know, there are problems with that choice but compare it to Ben and Jerry's and frosted carrot cake. It was an improvement and it was readily available. I don't reccomend it but it was an improvement at the time.

This last winter I was able to improve on that choice by going closer to the source - always a good idea with food. Cut out the middle man.
I became a squash eating fanatic. Baked squash of all different types. mmmmmmmm I wish I could get some now. They are filling, nutritious, inexpensive and delicious. They satisfied my sugar craving and all I put on them was just oh so small a bit of butter.

Ok, I am talking too much in class now, I am going to get my fingers whacked with a ruler. I will be quiet for while.

misskay
07-18-2010, 06:09 AM
And you're making me hungry! (moves to the back row) ;)

Lightwarrior
07-18-2010, 06:14 AM
And you're making me hungry! (moves to the back row) ;)


LOL...think I'll move to the back row also...must be a refreshment table back there??? :D

Jack
07-18-2010, 06:39 AM
Everybody put the snacks away and sit down, she'll be back soon and then we'll all be in trouble. ;)

(sorry Sangye, I know this is a really serious subject, we just can't help it sometimes)

Sangye
07-18-2010, 07:27 AM
Jack and me2-- Absolutely hilarious. Now, where's my ruler? :D

Sangye
07-18-2010, 07:30 AM
(sorry Sangye, I know this is a really serious subject, we just can't help it sometimes)
It's not that serious-- we can get some good giggles out of it. As you were. :D

drz
07-18-2010, 10:11 AM
When I was first dx'ed in 2006, I was started on "pulse" steroids--1,000 mg IV solumedrol (equiv 1,560 mg oral pred) for 3 days. It was dropped to 60mg from there and gradually tapered off within about 8 months. I gained 40lbs in 4 months, was constantly soaked in sweat, constant hot flashes, had an unstoppable appetite (especially for salt, fat, dairy and heavy foods), alternated between rage and depression, couldn't sleep at all, had difficulty concentrating due to racing thoughts and retained enormous amounts of fluid. Typical list for someone on high-dose pred.

If you can believe it, my original local docs never told me about a single one of these side-effects. As a chiropractor (a physician not trained in drugs), I only knew pred would give me a moon face, make my tendons/ligaments more susceptible to injury, cause bone loss and damage my adrenals. None of my patients had been on high-dose steroids or I would have known more. I also had no internet access to support groups or google for the first 2.5 years after dx.


Once I was discharged on 60 mg pred, I noticed a huge increase in my appetite but thought it was because I was so depleted from the prolonged lung hemorrhaging and being on chemo, etc.... I thought it was like how cancer patients have to eat so much to keep up with chemo. So I ate what I craved, thinking I was feeding my body what it needed. It had always been accurate before.

The weight gain was unbearable and fast. Even when I asked my docs about what was happening to me, they dismissed it and told me I was overreacting. My leg literally burst open due to fluid retention and they still said it was all in my head. I've borne a considerable amount of resentment these 4 years about it, always wondering what it might have been like if I had just been informed. And maybe I wouldn't still have all that weight and another 20 lbs. I bet some of you can relate to being totally in the dark about these changes.

I never had the chance for a do-over (and was terrified to need one, of course), until now. But I've been back on high-doses the past 2 weeks and it's a different world because of what I now know. We can't beat all the side effects, no way. But I'm surprised at how much we can. I'm going to use this thread to list what I'm doing to get through this. It's working. And it ain't rocket science. :D

As Garfield said "I can resemble your comments". The doctors have generally acknowledge these symptoms when i ask about them, well most of them. One physician tries to blame my symptoms from RX with Prednisone and Cytoxan on my worrying excessively which he thinks causes me stress.

LisaMarie
07-18-2010, 11:13 AM
i use a milk dod and cheww a long time...i hate pred

LisaMarie
07-19-2010, 12:48 AM
seriously though i greatly apprexiatw any help or advise with pred and weight gain ..funny at times i am soo hungry and at others can not stand to eat...try ro snack on health stuff or stuff i have to chew for a long long long time...like celery or a milk duds but only one at a time lol....i hate the fat pad distributation and the water retention ...on 60 mg of pred now for a week no moon face yet...yeah...hopefully it will not come....thanks for all ya a do

elephant
07-20-2010, 12:13 PM
Just get some light exercise and not overdue it. Allow yourself something good to eat everyday, if you continue to resist then you end up eating a whole chocolate cake! I was on and off 60 of prednisone for a couple of years...and I ate three meals within three hours. I wrote it down and called my sister and said," guess what I just did?" She laughed when I told her how much I ate, but she was not judgemental...she new that I was having a hard time controlling my intake of food particles!

Jack
07-23-2010, 02:09 AM
Where has the teacher gone?
I bet she's in the Staff Room filling up on cigarettes and coffee! ;)

Lightwarrior
07-23-2010, 03:36 AM
Where has the teacher gone?
I bet she's in the Staff Room filling up on cigarettes and coffee! ;)

Or reinforcing her ruler lol. Poor Sangye, how did she get all of the troublemakers in one class?? :p

Sangye
07-23-2010, 04:58 AM
Okay, sit down you naughty kids. :D

I'm assuming everyone has thoroughly digested the info I already posted. I bet some of you are just waiting for me to list what to eat or not eat, but you've really got to understand the mechanics of the Fire and Earth/Water thing or you won't be able to make it work.

And it works, I can tell you that. I've lost 7 lbs in the last 2 weeks on 40-60mg pred (one week on each). I've hardly had any sweats, have slept soundly, have felt cheerful and hopeful, haven't swelled up, didn't get a moon face, my abdomen fat actually decreased, and I haven't had an increased appetite or any food cravings.

(For those who don't know, ever since the first course of pred in 2006 I've been extremely sensitive to it. Before this little experiment, even 5 mg gave me a moon face and all the other symptoms.)

Here's what I did:
1) I followed Ayurvedic principles (diet, lifestyle changes) that pacify both Fire and Earth/Water
I especially emphasized Fire reduction. I'll talk specifics later.

2) I eliminated all processed foods.
I had already been doing this for a few weeks, so that was a plus. (Processed = canned foods, pre-mixed things (eg rice mixes), pasta, etc....) I cooked like I used to-- real foods, my own spices, etc.... I did this while having ongoing vertigo and extreme weakness, a lousy refrigerator that kills fresh veggies in 3 days, no way to shop for myself and living on a very tight budget.

3) I eliminated all salty foods.
I added a very small amount of sea salt to one meal each day. I proved to myself that salt was a major culprit in the pred effects, because one day a friend treated me to Chinese food--full of salt. I kid you not, within 2 hours I got a moon face, swelled all over, was irritable all day, had major sweats all day and night and couldn't sleep that night. The next day I went back to no salt and it never happened again. Salt greatly increases both Fire and Earth/Water.

4) I didn't let myself even taste salty, dairy or sweet foods.
I had no desire for them, but on the 5th day a friend brought me some corn chips. While waiting for my dinner to cook I took a bite of one. I can't write WOW big enough. It lit up every pleasure center neuron in my brain, instantly. Like someone had given me a drug. I knew that if I ate another I wouldn't be able to stop. I got rid of them and never did it again. It was amazing to see that. If you are trying to eat healthier salty foods or just limit your salty snacks that's the trap. It'll keep you craving the salty foods, and it'll still make the pred side effects go wild.

Same with dairy and sweet foods. Pred stimulates the taste buds so if those foods hit your tongue, it's all over. The good thing is that if you avoid them for a day or two and follow the other guidelines, the cravings will disappear. Don't feed the stray cat and it won't keep coming back.

5) I took 40mg Lasix (furosemide) in the morning and evening.
Lasix is a common diuretic. It helps pull off some of the fluid retention with pred. Obviously talk this over with your doc. If you just take lasix but don't follow the other guidelines, it won't do much. The diet/ lifestyle stuff greatly outweighs what lasix can do. I was already on lasix to control lower extremity edema (from blood clots). Lasix depletes potassium so you need to know how to stay on top of that if you take it.

Okay. I know some of you are thinking exactly what I would have been if someone had posted this list a few months ago: "No way." or "I can't possibly do that." or "I can't white-knuckle the food cravings" or "Wegs has taken everything from me, and now you want me to give up my cookies?"

I might have even been nasty about it if someone had suggested all this to me! But I'm hoping that at least some of you will give it a try. I haven't had to use any will-power at all, I promise. And not having those hellish pred side effects has been amazing. Talk about quality of life.

I'll post next about the specifics of the Ayurvedic diet and lifestyle changes.

elephant
07-23-2010, 06:38 AM
Sangye, I plan on doing this 100%, but have not felt like doing it. I know that this is important for our health and to live a better life.
That is great you lost 7 pounds! Eating natural is the way to go!!

Sangye
07-25-2010, 11:09 PM
Sangye, I plan on doing this 100%, but have not felt like doing it. !

LOL-- That's a classic sign of imbalance in Ayurveda. Someone with too much Fire craves more Fire--foods, activities, etc.... To change that, you just have to sit down and do it. Then the imbalance starts to weaken a little and it's easier to lean towards balance. You have to stay on top of it though, or the imbalance will sneak in again.

elephant
07-25-2010, 11:17 PM
Mondays are always a good day to start diets. :) Starting tomorrow I will write down everything that I eat ( whole foods).

Jack
07-25-2010, 11:23 PM
Don't you mean "Tomorrow" is always a good time to start a diet? ;)

katarzena
07-25-2010, 11:30 PM
I believe these are the good advices but not for me. I don't eat any salty snacks anyway but my mom does add some salt in food. She minimized and I've realised how much it helped my moon face to go down. But if I went on a diet and stop eating any of the cookies or chocolate or anything sweet I would seriously become anorexic lol xD
I didn't gain any weight so my main concern is that I will lose some.
It's interesting how you didn't get the moon face on such a high dose I wish it would work for me if I ever get to go on such dose again. Hopefully I won't.

Sangye
07-26-2010, 12:15 AM
Okay, let's talk about how lifestyle affects Fire (Pitta). Remember, pred is stoking a big Fire all the time. There are easy things you can do to pacify an ongoing Fire imbalance. They might sound silly, but they make a big difference.

What you do on a particular day or on a daily basis really does count. If you store up a lot of Fire today, you'll suffer for days and days, maybe weeks. You'll have to work harder to put out that Fire, and depending on how much you aggravated it, you might not be able to without resorting to drastic measures.

Pitta governs summer. That means everyone is more likely to have excess Fire in the summer-- sunburns, prickly heat, rashes, heat stroke, etc... All classic Fire. People are generally more active in the summer because their Fire is increased.

Here are some lifestyle changes to pacify the Fire element:

1) Avoid the heat
Especially in summer. Sitting in the sun, working in a hot kitchen, etc.... Whatever time you spend in heat is stoking the Fire element.

2) Don't exercise midday during hot weather
The Fire element is most active from 10am to 2pm (and 10p to 2a). Ever see someone running at noon on a hot day? Bright red, puffy, looking like they're gonna drop dead of a stroke. They could, since they're stoking a Fire in their circulatory system.

3) No hot showers in the summer
Take lukewarm showers, even on the cool side. At first you'll miss the heat but you'll see how soothing the cool is. You won't turn bright red afterwards and if you're having pain it might go down considerably. The rest of the year, base your shower temp on how well you're controlling Pitta. If you're on high dose Pred, you should not be taking hot showers--way too much Fire.

4) Don't eat after 8:30 pm
Pitta starts increasing by 10 pm. If you start nibbling at night, you won't be able to stop. You're more likely to crave Fire-increasing foods too, especially salty.

5) Go to bed by 11:00
If you stay up later, you'll have more insomnia and food cravings all night.

6) If you increase Fire, antidote it as quickly as you can
For example, if you have to wash a lot of dishes in hot water, rinse your hands and face in cold water, drink a glass of cool (not cold) water and make sure you focus on Fire-pacifying foods at your next meal.

7) Don't eat your food when it's piping hot
Let it cool the slightest bit. You'll be able to get through your meal without the major pred sweats.


Experiment with these things and you'll prove it to yourself. Take a hot shower and you'll find yourself having major sweats, swelling and a voracious appetite within an hour. The one good thing about working with Fire is that you can make changes quickly--for better or worse. :)

Sangye
07-26-2010, 12:23 AM
It's interesting how you didn't get the moon face on such a high dose I wish it would work for me if I ever get to go on such dose again. Hopefully I won't.
I did get the moon face when I was on high dose pred in 2006. I didn't get it this time because I followed these guidelines. :)

elephant
07-26-2010, 01:42 AM
Thanks Sangye for taking the time to write all this down. Much appreciated! :)

nagesh
07-26-2010, 04:34 AM
Thanks Sangye for the info on Ayurveda. I am from the home land of Ayurveda India, Now a days their is much talk about Ayurveda in this forum. In my sons case I met a Ayurvedic professor, he told ask your alopathy doctor ie, Rhematologist to tapper the pred as quick as possible and he will plan to put him on

1 .Best immune modulators available in Ayurveda (made of herbs)
2. Strict Diet (as per the priniciples of Ayurveda)
3. Life Style changes (he need to be reduce/avoid maximum contact with electro magnifying forces ie, like watching TV, food cooked in electric oven etc.) must do yoga,meditation and pranayama

Since I thought I should consider these things only once I am out of danger phase .

Now I consider you as Ayurvedic Pandit (Ayurvedic expert). what is your opinion on cosidering ayurvedic immune modulators along with present dose of 5mg pred and 100mg imuran

Jack
07-26-2010, 05:19 AM
nagesh - I will let Sangye answer this one herself, but I must stress how important it is that you follow her advice (I believe I know what it will be).

pberggren1
07-26-2010, 06:21 AM
Thanks Sangye,

That all makes sense to me.

Sangye
07-27-2010, 12:21 AM
Thanks Sangye for the info on Ayurveda. I am from the home land of Ayurveda India, Now a days their is much talk about Ayurveda in this forum. In my sons case I met a Ayurvedic professor, he told ask your alopathy doctor ie, Rhematologist to tapper the pred as quick as possible and he will plan to put him on

1 .Best immune modulators available in Ayurveda (made of herbs)
2. Strict Diet (as per the priniciples of Ayurveda)
3. Life Style changes (he need to be reduce/avoid maximum contact with electro magnifying forces ie, like watching TV, food cooked in electric oven etc.) must do yoga,meditation and pranayama

Since I thought I should consider these things only once I am out of danger phase .

Now I consider you as Ayurvedic Pandit (Ayurvedic expert). what is your opinion on cosidering ayurvedic immune modulators along with present dose of 5mg pred and 100mg imuran
LOL Nagesh, I'm definitely not a Pandit! They are highly trained-- I only know a bit about Ayurveda (what I've been able to teach myself over about 15 years) and what a Pandit in Arizona taught me.

It's only recently that I've been able to piece together how pred affects our constitutions. Just as I was coming up with my hypothesis, I had the chance to try it out on myself by being back on high dose pred the past few weeks.

I think it's great to have a Pandit helping you directly. Having said that, I want to caution you. Wegs is very different from most other autoimmune diseases. With others (eg RA, Crohns, Ulcerative colitis) you can use Ayurveda to control the disease. They have a great track record of doing it, in fact. So when Ayurvedic practitioners and other holistic physicians advise you, they'll be thinking of those other AI diseases and everything that must be done to bring the body into balance. However, if you do all that with Wegs, it will counteract the treatment and cause the disease to flare.

Why is Wegs different? The other AI diseases do not have the same potential to kill, do not progress as quickly, and they don't do silent damage. You have some room for experimentation. But with Wegs, you can go from no kidney involvement to complete kidney failure in one weekend.

This might be difficult to convey to your Pandit. Mine in Arizona understood the limits immediately and she was able to help me tremendously without causing the Wegs to flare. Dietary and lifestyle changes were the main things we did. We used herbs only to reduce Pitta and briefly for liver congestion due to excess Pitta. She was extremely thorough and checked every single ingredient in the herb mixtures to make sure they weren't too powerful and didn't affect the immune system. It's most important to avoid immune-modulating herbs or supplements. (Immune-modulating is not the same as immune-boosting, but it will not work well with the Wegs.)

Please only let your rheumy decide how fast to taper the pred, etc.... Our holistic docs view the meds as a temporary interference that we should abandon quickly, but with Wegs, we need what we need to keep the disease under control.

I speak from personal experience on this. Before the Wegs was dx'ed, I was under intensive holistic treatment and it nearly killed me. And last year when a flare was brewing, a single acupuncture treatment (aimed at the immune system) landed me in the hospital the next day with lungs hemorrhaging. Then it became a severe flare that required cytoxan, pred, and rituximab to put it out.

Jack
07-27-2010, 12:44 AM
I knew you would give a thorough and well considered answer Sangye. Thanks.

nagesh
07-29-2010, 03:25 AM
Thanks Sangye

I understood the limitations

Col 23
07-31-2010, 12:38 AM
Thats frightening Sangye but thanks for the info.
cheers col 23

Col 23
07-31-2010, 12:39 AM
Hi Phil
Just wondering how your are going??
Col 23

Kunka123
07-31-2010, 02:43 AM
I'm a new guy. I need something to help me. I am my own "evil twin". I am driving my wife crazy. Help.

elephant
07-31-2010, 02:45 AM
What can we do for you? Welcome? Will help all we can.

Jack
07-31-2010, 02:49 AM
Are you suffering from mood swings due to steroids (Pred)? If so, you need to warn everyone close to you that this is a side effect and will lessen as your dose is reduced. If things are getting really bad, there is medication available to counter the imbalance - ask your specialist.

Don't be tempted to reduce the Pred dose without careful supervision and advice. It can have dangerous consequences.

Col 23
07-31-2010, 03:41 AM
Hi Kunka new guy, If your on high dose of Pred you may have lots of melts downs, has your wife read the side effects of Pred or discussed with your doc? Being informed of side effects
can help. I lost count of the number of times my poor husband had to calm me down as I lost the plots lots on 80mg. My Rheumy kept saying Im so sorry but you just have to stay on this for
a bit longer, it was bloody awful.. what do you think you need to help you? Hang in there.
cheers Col 23

pberggren1
07-31-2010, 07:25 AM
I am not doing too bad right now Cole. Thanks for asking.

elephant
07-31-2010, 11:08 AM
Do you think you getting better Phil?

Sangye
07-31-2010, 12:24 PM
*bangs ruler on desk* Okay, before this thread gets further derailed....

Here is a food list to guide you.
(from Pitta Dosha, Tips and Diet for Balancing Pitta | Maharishi Ayurveda Health Solutions (http://www.mapi.com/ayurveda_health_care/doshas/pitta.html) )

Pitta-Pacifying Foods


Dairy. Milk, butter and Ghee are good for pacifying Pitta. Reduce yogurt, cheese, sour cream and cultured buttermilk (their sour tastes aggravate Pitta).
Sweeteners. All sweeteners are good except honey and molasses.
Oils. Olive, sunflower and coconut oils are best. Reduce sesame, almond and corn oil, all of which increase Pitta.
Fruits. Favor sweet fruits, such as grapes, cherries, melons, avocados, coconuts, pomegranates, mangos, and sweet, fully-ripened oranges, pineapples and plums. Reduce sour fruits such as grapefruits, olives, papayas, and unripe pineapples and plums.
Vegetables. Favor asparagus, cucumbers, potatoes, sweet potatoes, green leafy vegetables, pumpkins, broccoli, cauliflower, celery, okra, lettuce, green beans and zucchini. Reduce hot peppers, tomatoes, carrots, beets, onions, garlic, radishes and spinach.
Spices. Cinnamon, coriander, cardamom and fennel are all right. But the following spices strongly increase Pitta and should be taken only in small amounts: ginger, cumin, black pepper, fenugreek, clove, celery seed, salt and mustard seed. Chili peppers and cayenne should be avoided

**
If you also want to reduce the Kapha (earth/water), you need to eat foods that are BOTH Pitta- and Kapha-pacifying.

Here's a list of some of those. There are other foods that could be on this list. It's my own list of foods I like.

Pitta and Kapha-Pacifying Foods

Veggies
Bitter veggies—kale, mustard, collard, dandelion; generally dark green leafy
Cabbage
Asparagus
Bell pepper
Broccoli
Brussel sprouts
Fresh corn
Cauliflower
Celery
Green beans
Leafy greens
Lettuce
Mushrooms
Okra
Parsley
Potatoes—white Sprouts
Summer squash
Yellow squash
Cilantro

Fruits
Apples
Mango
Berries (not strawberries)
Figs
Pomegranite
Prunes
Raisins

Legumes
White beans
Black beans
Aduki beans
Black-eyed peas
Chana dal
Garbanzos
Lima beans
Pinto beans
Split peas
Lentils—brown, red
Mung beans
Mung dal Tempeh

Grains
White rice
Barley
Dry cereal
Granola
Oat bran
Sprouted wheat bread (Essene)

Meat/ Seafood
Chicken
Turkey
Shrimp

Sweeteners
Fruit juice concentrates—esp apple, pear
Raw honey—not much

Remember, you don't need to eliminate other foods from your diet, just emphasize these.

pberggren1
07-31-2010, 02:20 PM
Thanks Dr. Sangye!

elephant
07-31-2010, 11:26 PM
Thanks Sangye for taking the time to write this all down for us. :)

Sangye
07-31-2010, 11:30 PM
It's my pleasure. If it can save anyone from at least part of the hell of pred, I'm thrilled. :)

Col 23
08-01-2010, 07:24 AM
Thanks Sangye for taking the time to put this down. Great guide.
cheers Col 23

Sangye
08-02-2010, 12:33 AM
I want to emphasize a few foods that are famous for increasing Fire:
- Chocolate, especially dark
- Coffee and caffeine in general
- Tomatoes
- Hot spices
- Citrus

You don't need to eliminate these foods, but in order to control Fire you have to seriously limit them. If you have them on a regular basis, you're probably not going to be able to get the Fire element under control.

If you have them occasionally, you can counter them with other foods that are cooling. For example, if I have something with a little hot spice, I eat a lot of cucumbers with it or shortly after. Later I have extra fruit that is cooling-- blueberries, apples, pears, etc.... If you're going to set your house on fire, you better have a hose on hand!

DEE
08-02-2010, 01:27 AM
ok Sangye ive stopped eating chocolate , only have one coffee every other day cant eat anything spicey at the moment and have confessed to tomatoes and have a son that on my case about eating healthier says he going to sort suggested menu for me !! he good at that sort of thing i was doing ok food wise but have to admit not so just lately
think abit of comfort eating has come into play DEEx

Sangye
08-02-2010, 01:30 AM
Good for you, Dee. You'll see how that effort pays off. If it can help keep the Wegs fire down, it'll be worth it, right?

Give your son the guidelines here and let him help you. :)

JanW
08-02-2010, 03:41 AM
Just to go back to pred for a moment, the mayo rheumy just spoke and basically said that any long term usage of pred has to be taper slowly. His example was below 5 mg reduce by 1 mg or even .5 mg per month. For all you pred takers he said that adrenal function can almost always come back but extremely slowly (many months, not weeks). All the docs who spoke here were really looking at no pred after the initial 3-6 month remission induction phase (their words not mine) and letting the maintenance drug do the work. They definitely stressed that you aren't doing yourself any favors by staying on it to "stay safe."

Jack
08-02-2010, 04:39 AM
No Ped after 3-6 months. Wow!
I don't think that many of us on this Forum have had that happen, but I think it would be wonderful if possible. Long term Pred certainly has the potential to be the worst of the drugs.

elephant
08-02-2010, 04:43 AM
If no prednisone after 3-6 months.... I was wondering do I increase the cellcept ( well not me the doctor of course), to decrease the inflammation? Oh boy!

pberggren1
08-02-2010, 04:54 AM
Ya, Oh boy is right elephant!

DEE
08-02-2010, 05:13 AM
would like to think i cold happen my consult keeps putting mine back up every thre months !! DEE X

JanW
08-02-2010, 09:15 AM
The researchers believe with the right dose of the immuno, the inflammation can get under control and remain in control without the pred. Your mileage may vary of course. I think that for the docs at the conference, their concern is docs don't try to get patients off of pred at all quickly -- regardless of bloodwork or symptoms.

Sangye
08-02-2010, 09:48 AM
Wow, this is really amazing news.

Elephant, how much Cellcept do you take? I was on 2,000 mg but it wasn't enough to really contain the Wegs. Dr Seo said if I went back on it, he'd put me on 3,000 mg.

LisaMarie
08-02-2010, 10:13 AM
no lifetime of prednisone wow...i have gained 15#...since my increase to 60 mg daily....oh Jan thanks for sharing can we buy info from the conference?

JanW
08-02-2010, 10:25 AM
The shift in mindset that occured for me is that relaspes are likely completely out of our control (based on what we know now). Therefore, why be on medication to prevent something you can't prevent.

It's going to take years for that to filter down to the general rheumy population, though...so for now, discuss the goals of your treatment with your doc, and the plan for getting off.

These guys are definitely nervous about pred though, and definitely thought no one should be on it for long periods of time.

And they pretty much think ctx is out of the door vs. ritx.

elephant
08-02-2010, 10:58 AM
The info your giving us is great JanW!
Sangye I am on cellcept 2000 mg, but also take cyclosporine ( another immunosuppressant), bactrim and prednisone. My lung doctor and kidney doctor told me " you are on enough medicines!" They are nervous about me increasing it to 3000. Dr Langford thought 2000 was fine for now.
I will call Dr Langford tuesday and leave a message. I just need her to consult with a ENT who know alot about WG and what to do with my sinus issues....

JanW
08-02-2010, 11:02 AM
I don't know who she works with in Cleveland, but she and Lebovics were colleagues at the NIH and are obviously quite friendly. Honestly, elephant they guy who dealt with sinus issues on the panel was more of an LA sinus guy and didn't address vasculitis in nearly as much as my doc. Lebovics didn't address it at all because he focused on the correction of saddle nose. He'd likely never seen more of them at any one time, that's for sure, so the talk was much appreciated.

elephant
08-02-2010, 11:05 AM
She may just talk with Lebovics? That would be great!

JanW
08-02-2010, 11:19 AM
She might! Or she might have her own guy she likes internally (and may have to refer to). He's the guy I would trust with my sinuses -- but remember the source, he's my surgeon so I am biased.

onatreetop
08-02-2010, 11:20 AM
This is all wonderful news! I wonder after just a year what a difference all these meds have done.The new dxscan showed denisty change in my spine but hips were ok? The doc did give me FA 1mg once a day with the new mtx.. I think I am going to go with the suggestion I got about taking it Sunday before bed. So that I might sleep through any nausa? I wish I could get all the docs to read this thread!!!

JanW
08-02-2010, 11:33 AM
are you talking about mtx, elephant. Don't assume you will have nauseau if you are 15, 20 or 25 mg. I was really afraid when i saw what some people experienced here but I have had no visible side effects. I did learn today that mayo protocol is to take it on an empty stomach. I take it right after breakfast but will ask my doc the next time I go. I take FA every day right after breakfast, and with my mtx dose on Mondays. Then I wait several hours before vitamins, etc., to give the body some time to absorb those meds.

onatreetop
08-02-2010, 11:40 AM
okay. so I should do what the doc said and stick with monday? I just dont want to be sick at work. It kind of defeats the purpose of cleaning. He has me starting on 20mgs.

JanW
08-02-2010, 11:42 AM
Not sure what your doc said, Elephant, but I just do Monday because it's the first day of the week, and have never had a problem. If you experience nausea get them to up your FA.

One other note, I don't take pred so don't know if taking the two together can contribute to feeling sick or tired. However the reason it is given is because of how well itss tolerated and its relative mildness. Of course it can wreck your live so you do have to be monitored frequently.

elephant
08-02-2010, 11:43 AM
JanW that was onatreetop, she is going on methotrexate. I am on cellcept and other stuff. :) thanks for the info.

onatreetop
08-02-2010, 11:45 AM
sorry for the confusion. venting as well. And confused as always. Still cant spell either!!! must be time for another shower. Was thinking pool but that means I have to clean it. No more work for me today.

Kunka123
08-02-2010, 12:17 PM
Yes I do. My poor wife really catches it sometimes. I will show her this thread and hopefully it will help. She is trying to get us to a Marriage Counselor. I keep trying to tell her that it is the Pred. I am on 35mg and slowly reducing with my Rheumy's guidance. He says the same thing. It is the only thing controlling my bleeding until the IV Cyto kicks in.

pberggren1
08-02-2010, 12:24 PM
The shift in mindset that occured for me is that relaspes are likely completely out of our control (based on what we know now). Therefore, why be on medication to prevent something you can't prevent.

It's going to take years for that to filter down to the general rheumy population, though...so for now, discuss the goals of your treatment with your doc, and the plan for getting off.

These guys are definitely nervous about pred though, and definitely thought no one should be on it for long periods of time.

And they pretty much think ctx is out of the door vs. ritx.

What do you mean about ctx is out of the door vs. rtx?

Sangye
08-02-2010, 12:49 PM
Rtx was shown to be as effective as ctx in the RAVE study last year. Since it's a targeted therapy (ie only wipes out B cells instead of the entire body) it would be preferable to ctx.

JanW
08-02-2010, 02:59 PM
Plus, the guys in Boston said that they never have problems getting it covered by insurance anymore (in response to a question). They now have a standard letter that talks about the compelling evidence and insurance companies understand that, if nothing else, it will lower hospital admittance rates in WG. The strong message I picked up was 'your doc should be able to get this for you too' although I don't want to imply this was actually stated.

Sangye
08-11-2010, 12:18 AM
Okay, pulling this thread back on topic... :D

Has anyone tried out my recommendations about using Ayurveda to help control pred side effects? It really works well for me. Just checking in. :)

elephant
08-11-2010, 05:03 AM
Sangye, no I have not. Looks down at shoes...:)

me2
08-11-2010, 05:15 AM
Sangye, I appreciate the ideas you have put out here. I am trying to implement some of them. That would probably not be considered good enough huh? I am fascinated by what you said about cravings. I crave tomatoe products right now and yet that is on your no, no list. Am I to just bite the bullet on them or is it ok? I use tomatoe sauce that has no sugar or phoney stuff in it. Just food.
Looking at some of the other things you suggest it seems that many of my inclinations are out of whack. I need a personal trainer to follow me around... "Its 11 oclock me2 , you get yourself to bed even though prednisone is telling you to stay up"
"Get out of that hot bath, whats the matter with you, are you TRYING to kill yourself?" I'm sorry, it just feels good, I should have known it was wrong for that reason alone.

DEE
08-11-2010, 06:00 AM
[QUOTE=me2;22612]Sangye, I appreciate the ideas you have put out here. I am trying to implement some of them. I am fascinated by what you said about cravings. I crave tomatoe products right now and yet that is on your no, no list.

Sangye do you remember we had a conversation last week when i said id bought sos talisman and i told you that i shoul put give lots of tomatoe instead of triple choc muffin new craving maybe its a pred thing too seen as me2 wants tomatoe :) DEEx

Sangye
08-11-2010, 07:15 AM
LOL-- Elephant, look up! :D

me2 and Dee, remember that in Ayurveda when you're way out of balance in an element you will crave the very things that maintain the imbalance. The cravings will be intense! And when your Fire element is out of balance, the cravings will be particularly intense because Fire is an intense energy.

Tomatoes are disastrous-- especially tomato sauce or paste, since it's so concentrated. If you just ate a couple of tomato slices it would be much less of a problem. Remember, if you control some of these food choices, it makes everything very easy to control. For example, if you don't eat tomatoes, citrus, spicy foods and chocolate (the big Fire producers), it will make it easier to go to bed at 11:00 and to sleep well. It'll make it easy to avoid hot water. Really. I was doing the same exact things as you before and once I stopped I can't even look at those foods or consider a hot shower. I'm amazed. Chocolate had a vice grip on this girl for a long time. :D

DEE
08-11-2010, 07:31 AM
Sangye please can i have alittle gold star as i no longer eat chocolate or spicey food tummy does not like them anymore !! not a great fan of citrus food but hard to resist tomatoe when we have a greenhose fulll at the moment but trying to be careful DEEx

Sangye
08-11-2010, 07:45 AM
Dee, you get a BIG gold star for going off chocolate and spicy food! WOW! That makes a huge difference.

If you eat fresh tomatoes, have them with lots of cucumber since that's a very cooling food and will help counterbalance the Fire. Adding fresh mint is even more cooling and tasty.

elephant
08-11-2010, 09:00 AM
We have two tomato plants. I had two slices yesterday. I love cucumbers that would be great with tomatoes. YUM!

Sangye
08-11-2010, 10:29 AM
There you go, Elephant! It'll make a big difference. :)

me2
08-11-2010, 12:10 PM
Ok, I will venture forth with tomatoes no more (except the little bit of slice with cucumber you mentioned). I believe you that the cravings have changed for you, it gives me hope that I can change mine too. Intellectually I don't care what I eat as long as it is a healthy diet. I enjoy spicey, always have, but I don't crave it , so that won't be too hard to change. I like chocolate (sorry for mentioning it to you) but I only eat it rarely, so that is easy to give up too. On the plus side, I have found myself throwing in fresh mint from the garden into a variety of dishes. That must be a good craving kicking in. I don't usually eat mint like that. I love cucumber so I will encourage myself in that direction. I can do the cooler water thing too. I will appeal to my cheap side and reflect on all the money I am saving on hot water and reducing green house gases.
I CRAVE seeing a change in what I eat, how much I eat, and having positive cravings. I know it is possible. Thanks again for this thread of encouragement and ideas.

elephant
08-11-2010, 08:41 PM
I also crave Basil leaves. My sisters were laughing because I made a basil ( five leaves) tomato and mozzarella cheese sandwich! It was so good!

Sangye
08-11-2010, 10:09 PM
me2, that's awesome. Go mint! :D If you only have chocolate occasionally there's no reason to give it up. It's only a problem when you eat or do things that increase Fire on a regular basis. For those on pred or trying to get Wegs under control, eating chocolate 3 times a week is probably too much.

Elephant, I've had that sandwich in a restaurant-- so good! Fresh basil leaves in moderation are good for decreasing Fire. (Dried basil is heating, and so is too much basil) Soft cheeses like mozzarella are cooling, so that's good. Just don't go crazy with the cheese on a regular basis because it upsets Earth/Water and will aggravate your sinuses. You're doing great. :)

A nice way to get cooling energy into you throughout the day is to put a sprig of fresh mint in a bottle of water and sip at it all day. Rub the mint in the water first to release the flavor. It's pretty to look at, too. :D

pberggren1
08-12-2010, 05:09 AM
Is ginger considered a spicy food?

Lightwarrior
08-12-2010, 06:19 AM
My great aunt was a cuandera, she used fresh mint a lot. I still love it and just the smell brings back good memories. The name she used for it was Yerba Buena (good herb).

elephant
08-12-2010, 10:29 AM
Sangye that water sounds refreshing!

Sangye
08-12-2010, 11:03 AM
Phil, yes ginger is very heating. In winter if you don't have excess Fire, you can sip hot water with a little ginger throughout the day and stay toasty warm.

Col 23
08-13-2010, 01:12 AM
Going try the mint, thanks lightwarrior. Hope your going okay.
cheers col 23

julia
08-13-2010, 06:18 AM
I am trying to take this in bits at a time. confused on dairy.

I do not drink milk.
gave up yogurt. did not eat often but liked it for a quick snack on occasion

Like cheddar and swiss cheese

love sour cream but see that is not good.

how about cream cheese.?

thanks for any input

elephant
08-13-2010, 06:22 AM
Love all the stuff you mentioned, but have cut down on most of it.

Sangye
08-13-2010, 06:49 AM
Julia, yes dairy can be complicated when trying to balance both Fire (Pitta) and Earth/Water (Kapha). Some types are cooling and some are heating.

Most dairy will increase Earth/Water which creates mucus. Also, excess Kapha causes various tissues to swell and retain water, among them the sinuses. So you could have sinus drainage and/or sinus pain and inflammation. If you already have upper respiratory involvement, be extra careful with dairy.

This chart will help you see how dairy products affect Pitta and Kapha. To lower both Pitta and Kapha, eat foods with arrows pointing down for K and P. Minimize the foods that are aggravating to one or both (eg, hard and soft cheeses).
All Ayurveda :: Diet Planning- Dairy Food Chart (http://www.allayurveda.com/dietp_dairy.asp)

Sangye
08-13-2010, 06:52 AM
I should also mention that there are often some discrepancies in Ayurvedic food lists between sources. One might say chicken is heating and another not that much. For the most part everyone agrees on the foods.

julia
08-13-2010, 11:18 AM
thank you for the link. I will print it out.

lawstudent2010
08-14-2010, 12:51 PM
I remember being on prednisone at two different points in my life. The first time, I pretty much succumbed to its weight gain side effect.

The second time, I was ready for it. I would recommend eating a good diet, lots of fruits, vegetables, and whole grains, as well as low fat dairy. When I incorporated these foods into my diet, along with moderate exercise, I was actually able to lose a couple of pounds and keep that weight off for a while (I gained it back, but it was when I was off the medication and in law school studying (it is common for law students to gain at least ten pounds)). It all starts with the right thinking and good lifestyle habits. As much WG may be a random disease, I found that a good lifestyle really helps in managing the disease. Thus, prednisone wouldn't stand much of a chance if you practiced good habits.

JanW
08-14-2010, 10:36 PM
Hi, lawstudent -- you sound like a really self-directed and goal oriented person (obviously, you're a law student) and what you say about diet is spot on in terms of what the experts at the VF symposium said. They did also point out, however, that predisone is a 'horrible' drug in the sense that in large groups of patients you see a lot of side effects that really can't be mitigated by changes in lifestyle -- i.e. are out of the patient's control. I've never been on it long enough to experience the weight gain but I do know that my anxiety levels go through the roof within a couple of days of being on it, and there really isn't much that I can do about that. Patients certainly complained about out of control appetite and the docs pretty much acknowledged that this just comes with the territory -- once of the many reasons they want to see people have the shortest course possible on the drug.

Sangye
08-14-2010, 10:51 PM
Yes, this is exactly why I chose the title I did for this thread. We can control only some of pred's side effects--mostly the ones that make us feel lousy. We have no control over the damage it's doing to our entire endocrine system, bones, cardiovascular system, etc.... Those effects are purely biochemical.

But the things we can do to control some of pred's side effects also happen to keep us healthier in general, and can only help to control the Wegs, too.

Sangye
08-14-2010, 11:05 PM
In another thread I was mentioning how I'd been having a lot of sinus drainage the past few weeks and suspected it might be from the daily orange juice I was drinking to keep my potassium up. I stopped it several days ago and sure enough--the sinus drainage has almost entirely cleared up.

Sinus pain was actually the first thing I resolved for myself using Ayurveda 15 years ago. I had always gotten migraines from the time I was very small, but in my early 20's I started getting sinus headaches, too. No infection or congestion, just pain. I had them for about 10 years. I was otherwise strong and healthy.

At that time, I used to eat oranges everyday, drink OJ, and loved peanut butter and banana sandwiches on wheat bread. I learned that every one of those foods aggravates Kapha, and a classic sign of excess Kapha: sinus problems (pain, infections, congestion, drainage, post-nasal drip, headaches). As soon as I stopped eating those foods on a regular basis, the sinus headaches I'd had for several years resolved permanently.

Having Wegs doesn't change the fact that our bodies are affected by the same principles of balance/ imbalance that affect healthy bodies.

Lightwarrior
08-16-2010, 05:48 AM
I have been so happy that i have been maintaing on 15 of pred, Over the last three weeks my body has gone into mass production of kidney stones, which has resulted in three ED trips and two hospital admissions. I can't see my urologist until the 24th (he has been out of country) so I have been dealing with on call docs. Anyway about a week and 1/2 ago I started developing fevers between 99 F and 100.6F every aftenoon, aches, chills and extreme fatique. i was going straight home from work and climbing into bed and going to sleep. i had to go to ED yesterday morning for stone help, fluid, pain control etc and for some reason my brain kicked in and I realized that I was headed for adrenal crisis. Prednisone long term takes over the bodies production of cortisol, so my body going into mass production of stones and passing them, plus the stress of a lithrostripsy, stent placement etc was more than my 15mg of pred could handle. i lucked out and one of the ED docs who likes and uses the protocols I wrote (sepsis, dka, post cardiac therapeutic hypothermia, etc) was on. I ran my theory by him and he litterally sat down and put his head in his hands because he had not picked up on it. He gave me an IV dose of solumedrol, had me increas my pred by 20mg for the next five days. My glucose has been well controlled even on pred and i had a 179 blood glucose and 500 in my urine on presentation to the ED yesterday, another sign since the adrenals play a part in glucose control. I called my rheumy and left him a message about the fevers about a week ago but got no response.

The bullet points of my long story is to know the symptons of adrenal crisis if you are on prednisone and seek interventon if you have any of the sypmtoms, the symptoms starting in the afternoon were classic, I also had nauseau, was more fatigued than normal when waking up in the morning and had chills at night with increased sweating. I am a critical care nurse and would not have missed these symptoms in one of our patients...but I nearly let it go way to far with myself.

elephant
08-16-2010, 05:55 AM
Lightwarrior, I so the same thing. That is horrible to go through "kidney stones", remembering patients screaming in pain. Sorry you have to go through this and battle WG on top of that!

Lightwarrior
08-16-2010, 05:59 AM
Thanks elephant, i feel really grateful to be alive today, kinda scary how close i came to adrenal demise

misskay
08-16-2010, 08:21 AM
Several times over the past week or so I've had kidney pain (I've had stones pre-diagnosis) but put it down to possibly not enough fluid intake during the day. Last night I almost went to the hospital thinking it was another stone but talked myself out of it because I was exhausted and just didn't feel like trying to explain WG to an overtired overworked weekend ER doc... guess I'll be calling my Rhumy tomorrow to see if this is something I should be concerned about.

elephant
08-16-2010, 08:43 AM
Misskay, I would call and let your doctor know Monday. It could be anything with kidney pain. If you have severe pain ...need to go to the ER. Nurse Elephant.

Lightwarrior
08-16-2010, 08:49 AM
Ditto to Nurse Elephant

Sangye
08-16-2010, 10:00 AM
Ditto to Nurse Elephant and Nurse Lightwarrior.

Sangye
08-16-2010, 10:01 AM
Lightwarrior, I'm so glad you figured out the adrenal crisis! I hope you're feeling better now.

misskay
08-16-2010, 10:04 AM
I'll call first thing in the morning... had bloodwork and urine done late last week at his office, so need those results anyway.

CT01
11-28-2016, 06:32 AM
Thanks Sangye for the info on Ayurveda. I am from the home land of Ayurveda India, Now a days their is much talk about Ayurveda in this forum. In my sons case I met a Ayurvedic professor, he told ask your alopathy doctor ie, Rhematologist to tapper the pred as quick as possible and he will plan to put him on

1 .Best immune modulators available in Ayurveda (made of herbs)
2. Strict Diet (as per the priniciples of Ayurveda)
3. Life Style changes (he need to be reduce/avoid maximum contact with electro magnifying forces ie, like watching TV, food cooked in electric oven etc.) must do yoga,meditation and pranayama

Since I thought I should consider these things only once I am out of danger phase .

Now I consider you as Ayurvedic Pandit (Ayurvedic expert). what is your opinion on cosidering ayurvedic immune modulators along with present dose of 5mg pred and 100mg imuran


Hi Nagesh,

I have joined the group to support a friend in his recovery journey from Wegener's. I hope you are well. I will be greatful if you could share your experience of Ayurveda treatment for Wegener's.


My friend got diagnosed 5 months ago and is in medicine taper down phase. He had very good start with treatment for first 2-3 months where doctors told him he will recover 100% with no side effects. But soon after his test reports started to fluctuate, some weeks good & others bad.


It might be too early to shift to Ayurveda in his case. And a complete shift might take some time. But I would like to explore Ayurveda to see how could we control the damage from aggressive treatment given to Wegs patients. As almost all posts say the disease might not go away but may remain inactive. My motive is to find what could prolong remission other than repeated aggressive treatment. I hope you would help.


- Did Ayurveda help you and your son in any way?
- Did you start Ayurveda once you achieved remission?
- Could you share highlights & if possible important details of the Ayurvedic treatment?
- Could you control side effects with help of Ayurveda?
- He suffers from headaches extremely frequently, do you know if any essential oil that could help sooth the headaches? Could you connect me to someone who could help.


I will be very very greatful for your reply and time spent.


thanks a lot
CT01

Alysia
12-01-2016, 05:11 AM
CT01, no alternative medicine, of all kinds, can replace the wg treatment.

CT01
12-04-2016, 06:06 AM
CT01, no alternative medicine, of all kinds, can replace the wg treatment.

Hello Alysia,

Thanks....maybe not to replace entirely but could some alternate treatment help to reduce dependency on the WG medicines?

CT01

MikeG-2012
12-07-2016, 04:13 AM
Thanks....maybe not to replace entirely but could some alternate treatment help to reduce dependency on the WG medicines?

This disease does not have ONE all curing drug nor ONE all-telling book. Each of us have a similar, albeit very unique drug treatment plan, and each of us writes our own book on GPA/Wegeners as we progress with treatment, etc.

Most of us, are dependent on the drugs, and will be for some time (maybe forever) to stay in a drug-induced remission.

I know that there are a few people out there that are in drug-free remission, but If I had to guess, I would is a very small percentage compared to the rest that are on a wegs maintenance drug of some kind.

Maybe that could be another Poll Question?

Alysia
12-07-2016, 04:19 AM
Hello Alysia,

Thanks....maybe not to replace entirely but could some alternate treatment help to reduce dependency on the WG medicines?

CT01

As far as I know we depend on our drugs for life. It is too dangerous to try to replace them.

CT01
12-08-2016, 04:03 AM
Thanks Alysia and Mike...