Interesting Article on looking at the cause of Autoimmune diseases

[MCC]

How to Stop Attacking Yourself: 9 Steps to Heal Autoimmune Disease Mark Hyman, MD: How to Stop Attacking Yourself: 9 Steps to Heal Autoimmune Disease (http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html)

Obviously not suggesting anyone stop taking their medication, but I'm very interested in the cause of my wegeners and expect many of you are too.

[MCC]

There's this too I have posted before: Mark Hyman, MD: Is There a Cure for Autoimmune Disease? (http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html)

[Dirty Don]

Both articles are interesting...but not cure-alls. Certainly, one should be aware of these kinds of things in combination with standard medical & holistic approaches. I believe it takes an entire bagful of things, not just one approach. I, for example, am in a remission...have been headed to remission since I grieved my mother's passing...hmmm, stress? But I crashed so hard it almost killed me. Many on here use dietetic approaches, they still have the disease, but are in remissions of sorts. Tooooooo many things to keep in mind and analyze...Al was as good as there was, as far as I'm aware, of minding his diet...sighs again...

[Sangye]

I read this article when it came out recently. As a chiropractor I also practiced functional medicine. I agree with everything he is saying, including the list of 9 things that should be addressed to "treat" an AI disease. These are standard things to check and correct in every patient, not just Weggies and not just someone who has been dx'ed with a condition.

For the majority of AI diseases you could make a big difference and even cure the disease or put it into long-term remission by addressing those 9 things. Maybe you could do the same with very early, very mild Wegs-- what Dr Seo refers to as "Wegs lite." That is, Wegs which is so mild that no treatment is necessary unless it becomes more active. With full-blown Wegs I agree that the 9 things must be addressed but do not agree that it could cure the disease. It could certainly help control it, though.

[Lightwarrior]

There's this too I have posted before: Mark Hyman, MD: Is There a Cure for Autoimmune Disease? (http://www.huffingtonpost.com/dr-mark-hyman/is-there-a-cure-for-autoi_b_756937.html)

Fascinating article. The article states "To help her get off the prednisone I gave her herbs to support her adrenal gland function. " Sangye, is this possible??

[RCOSSIO]

I stongly believe most autoimmune issue results from factors enviromental, foods and others that results in our immune system "wacking out!' I have changed my diet (reduce substantially meats, cheeses, enriched flour and sugars), started exercising and took a proactive approach to my job. I have found stress to be the one number cause of flares but my diet was number two. I have controlled my flares, mainly joint pains and look forward to losing some weight and getting back to 225.

I have been on Cellcept for the last three years and looking forward to reducing them as I have been in a chemical remission since 2009. I have not been on the website but read frequently how some respond to treatement and others have difficulties. I am grateful Cellcept has worked for me but know especialy with WG things can change.
Hence I decided to change the things I could and thank you MCC for the article, it reminds me why I did it in the first place.

And yes Sangye you have been preaching this approach since 2008 when you first joined the forum...I shoul have listened BETTER to you :)

[KathyB]

Understand I'm not medically trained. However, after reading both articles, my question is simple. Since we don't know the cause of WG, how can we treat the cause and not the symptoms. Am I seeing this too simply? I thoroughly agree about diet, exercise, stress, etc playing a role in handling the disease (or any AI). The comment on herbs re adrenal system was confusing and did concern me. Is there something outside of slowly reducing prednisone to kick start the adrenal system? I'm sure he works wonders where certain AI problems are observed, but not WG...unless he knows the cause!!

Thanks for sharing the article!! Good for the thought process!!

KB

[vdub]

I read the article with a lot of interest. After I finished, I went back to the 9 steps to look at each one more closely and I googled "The Ultimate Diet". Seriously? This gentleman is going to tell me he can fix me, but only if I buy his $13 book? Or did I miss something?

[Sangye]

Fascinating article. The article states "To help her get off the prednisone I gave her herbs to support her adrenal gland function. " Sangye, is this possible??
Yes, but not a good idea with Wegs. It works by stimulating the adrenal glands. The adrenals are part of the immune system, so if you overdo it (very easy) you risk waking up the Wegs dog. And he'll wake up mad.

If I didn't have Wegs or didn't need rtx so often to keep it in remission, I would know exactly how to get my adrenals back online. This is why it's so frustrating to be stuck with depleted adrenals. It's like a mechanic having a flat tire but he's not allowed to fix it.

[Sangye]

I stongly believe most autoimmune issue results from factors enviromental, foods and others that results in our immune system "wacking out!' I have changed my diet (reduce substantially meats, cheeses, enriched flour and sugars), started exercising and took a proactive approach to my job. I have found stress to be the one number cause of flares but my diet was number two. I have controlled my flares, mainly joint pains and look forward to losing some weight and getting back to 225.

I have been on Cellcept for the last three years and looking forward to reducing them as I have been in a chemical remission since 2009. I have not been on the website but read frequently how some respond to treatement and others have difficulties. I am grateful Cellcept has worked for me but know especialy with WG things can change.
Hence I decided to change the things I could and thank you MCC for the article, it reminds me why I did it in the first place.

And yes Sangye you have been preaching this approach since 2008 when you first joined the forum...I shoul have listened BETTER to you :)
LOL Well better now than 4 yrs from now! Good job, Richard. :smile1:

[Sangye]

Understand I'm not medically trained. However, after reading both articles, my question is simple. Since we don't know the cause of WG, how can we treat the cause and not the symptoms. Am I seeing this too simply? I thoroughly agree about diet, exercise, stress, etc playing a role in handling the disease (or any AI). The comment on herbs re adrenal system was confusing and did concern me. Is there something outside of slowly reducing prednisone to kick start the adrenal system? I'm sure he works wonders where certain AI problems are observed, but not WG...unless he knows the cause!!

Thanks for sharing the article!! Good for the thought process!!

KB
The medical approach to getting the adrenals working again is basically "Hope they start again." If they don't, there is absolutely nothing they can do. In holistic medicine we supply what they need to restore themselves. Some herbs can be used and some nutrients, too. It depends on the individual. There is no one-size-fits-all.

As far as not knowing the cause, in holistic medicine we do have a pretty good idea of what causes AI diseases in general. Look at the list of 9 things-- those are all causes. We know this because when they are corrected, AI diseases go into remission or disappear altogether. However, we don't know why the same toxicity might cause scleroderma in one person and MS in another. That part is likely gene-based (though not necessarily inherited).

[KathyB]

Interesting...I've seen this idea discussed in previous threads but wasn't convinced everyone agreed with this approach. Makes sense that the 9 reasons would improve the quality of anyone's life, but in particular, those with AI issues who are "drowning in meds". How do we decide if it's best for Weggies? Are you able to take advantage of many/most of the recommendations? One additional question -- did you by chance attend Life College for chiropractic? My nephew and his wife are both grads and practice in Michigan. My chiro in Fredericksburg (Christine Thompson) was also a grad.

KB

[Sangye]

A chiropractor who practices functional medicine can determine what is safe for you, but you have to educate them on the unique characteristics of Wegs. I discussed how to do that in these threads:
http://www.wegeners-granulomatosis.com/forum/new-member-introductions/346-my-roommate-i-2.html

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/353-natural-homeopathic-remedies.html

I attended New York Chiropractic college, in upstate New York.

[pberggren1]

Sangye, do you suggest that anyone tapering pred work with their naturopath to see what herbs or other things might work to try and get the adrenals back on line?

[Sangye]

No, I think that it's best not to complicate things and just try to taper. I would only suggest it for people like me, who are having a hard time getting their adrenals to come back online.

Once you've tapered off pred completely, it's a good idea to see a holistic doctor to repair your adrenals. Even if they're working properly from a medical standpoint, they would be in terrible shape from a holistic one. Pred is deeply damaging to them.

[pberggren1]

Thank you very much Sangye. If I ever get off this darned pred I will do that for sure.

[Sangye]

How much are you on, Phil?

[pberggren1]

I am on 9mg right now and tapering 1mg a month.

[Debbie C]

I started reading the articles and kept going on to the next and the next. I found it very interesting and something I may look further into doing.I went to the Cleveland Clinic on Monday and my reumy was shocked that I am doing so well for just being on 5 mg pred.He mentioned a few times how surprised he was but when I asked him if I can lower the pred he said no and wants me to go on to 2000mg Cellcept a day and take fosamax for my bones.Now after reading some of this article (I'll continue tomorrow and take notes ) I'm thinking how stupid is that..too put me on more medicine that can eventually make me have cancer or try a different approach.I have an appt Wed.with a kidney dr. and I'm going to get his input on this. I know the other dr.in the group is giving monthly seminars on holistic way of living so there must be something to this .Thanks for sharing the articles MCC he gives me "food for thought"

[KathyB]

Hey Debra...I'm very interested in seeing how things go for you at the CC. I grew up in Avon Lake and still have family in the area. My oldest brother worked with their amazing heart team for years and my oldest sister and her daughter both work for CC. I'm also on hold with 5 mg of prednisone but nothing else. My last Rtx infusion was in March and my rheumy isn't sure if we will go again in September. I'm very interested in your experience, names of physicians, etc. I have contacts with UNC in Chapel Hill as well. Hope things continue to go well for you!

KB

[Debbie C]

Hey Kathy, I see Dr. Gary Hoffman at CC. I've seen him about 4 or 5 times now.I also follow with a reumy here in Youngstown (where I live ) he just keeps up to date on how I'm doing and lets the guy in Cleveland call the shots. The other lady I do yoga with left today to Cleveland ( she has heart issues) and there going to test her for 3 days and getting surgery on the 20th. You say that u are also only on 5 mg pred....does yr dr. suggest fosomax for your bones or any other preventive medicine? I am still skeptical about the Cellcept..will find out what my kindney dr. ( who is also very well knowledged with wg) says tommorrow. Hope thing keep going well for u also..I have been feeling great until my last trip to CC. My boyfriend was driving and I decided I wanted a bag of pretzels that were way in the back of my jeep,as I crawled over seats my legs slipped on the leather and I came down hard on my chest on top of the back seat....well after walking around the Cleveland Zoo in pain for 4 hrs. I told him I had to go to the e.r. I ended up having a contusion of my left chest wall and possible nondisplaced rib fracture. They gave 2 percasets (sp) and sent me on my way.By the time we got back to the motel I was so messed up I thought I was going to overdose. I was a real mess the next a.m. going to the clinic and my dr. couldn't believe they gave me 2 pills..especially on an empty stomach. They still hurt but just taking tylenol once in awhile. Let me know how u r doing on just the pred..my only involvement right now..thank God..is in my lungs but he says I am in remission.

[elephant]

Debra, I am not suprised Dr. Hoffman said that, Dr. Langford didn't want me to really taper either but I did. My rhuemy here in greenville wanted me too. I go to Cleveland Clinic too. I see Dr.Langford. I am on Cellcept 2000mg and cyclosporine 100mg a day. I got of prednisone I think in Feb 2012. If you want to get off prednisone you must do it slowly. I tapered 1/2 of prednisone a month. So it took my forever but it worked. I am in medical remission right now. :)

[Debbie C]

Elephant,you come all the way from S.C. to the Cleveland Clinic...wouldn't be easier to go to the Mayo Clinic? The only thing is I am not taking the 2000 mg of Cellcept he wants me to and I don't know what cyclosporine is ! So I think for now I better stay on the pred and I did start taking the 70mg of fosomax today (once a week ) for my bones. I just can't believe if these docs know that pred destroys your bones why they don't give u something right off the bat.

[Lightwarrior]

Debra, I am not suprised Dr. Hoffman said that, Dr. Langford didn't want me to really taper either but I did. My rhuemy here in greenville wanted me too. I go to Cleveland Clinic too. I see Dr.Langford. I am on Cellcept 2000mg and cyclosporine 100mg a day. I got of prednisone I think in Feb 2012. If you want to get off prednisone you must do it slowly. I tapered 1/2 of prednisone a month. So it took my forever but it worked. I am in medical remission right now. :)

I am doing the happy dance (In my mind of course) I am soooooooooooooooooo happy that you are in any kind of remission. You were such a big part of my accepting my dx. Thank you

[Debbie C]

Thanks for being so happy for me,but I don't know what I did to help you, its seems all I do is complain about all the drugs and try to find an alternative way of dealing with this. But thanks again for being happy,I hope we can all get there and stay healthy.

[KathyB]

I've been on 5 mg of Pred forever (started at 90 last Sept). No other maintenance meds. My next rheumy appt isn't until September. With a normal bone scan, he has never ordered Fosomax. He is questioning another round of Rtx (had two so far) because of my low immunoglobulin levels which he says are most likely a side effect of the Rtx therapy. I've been debating seeking the input of others, not because I don't trust or feel strongly about MCV in Richmond, but because of the expertise out there. I'm about 4 hrs from UNC Chapel Hill, too. My rheumy graduated from their med school and was a classmate of Dr. Falk. So I can get in there anytime. Since I'm basically holding my own right now (no flares lately), I don't want to wake up the dogs either! You know, I've never heard the word "remission" from my docs. I continue with chronic fatigue and limited stamina as well as joint pain...not to mention the doggone fog which nags me! I'm thankful to have creatinine at 1.63 in July when I was as high as 4.67 last fall -- only 1/2 of one kidney really functions. My current battle is over disability!

Geez, Debra, you had a time up in Cleveland! My husband always teases me and says "there are a lot of ways to get hurt around here" when I'm in his shop area at our house! It seems I always find those ways! Hope you are feeling better soon! Wow on your pain meds! Crazy what pain meds can do to both help and hinder a person! Stay strong!!

KB

[Pete]

I've been holding at 10 mg of pred for the past 2.5 months while I get used to mtx (15 mg/wk). Hope to resume the taper after I see Dr Villa Forte next month. I was at 40 mg of pred at New Year and didn't start to taper until March. PCP says I have osteopenia in my spine and hips. He suggested I take caltrate+600 (OTC) to boost calcium and vitamin D levels. Subsequent labs show both are now within normal values.

Pete
dx 1/11

[pberggren1]

Kathy, if you have been at 5mg of pred for over a month, why not taper it down more?

[mishb]

Phil, I have been at 5mg since August last year and I'm not sure a taper, any further, is on the cards yet.
I see the Rheumy tomorrow....who knows, stranger things have happened

[Sangye]

I've been holding at 10 mg of pred for the past 2.5 months while I get used to mtx (15 mg/wk). Hope to resume the taper after I see Dr Villa Forte next month. I was at 40 mg of pred at New Year and didn't start to taper until March. PCP says I have osteopenia in my spine and hips. He suggested I take caltrate+600 (OTC) to boost calcium and vitamin D levels. Subsequent labs show both are now within normal values.

Pete
dx 1/11
Pete, I recommend 2 things:
1) Get your vitamin D blood levels checked and make sure they do the right/best test (25-hydroxy aka 25-OH). They should re-check your levels on a regular basis-- at least every 3 months.
2) See a holistic doctor for proper supplementation. If Caltrate were sufficient to prevent osteoporosis it wouldn't be prevalent in America. There is much more involved in bone health than just calcium and D. And Caltrate uses a poorly absorbed form of calcium (calcium carbonate) because it's the cheapest form they can put in it (while charging you MUCH more than it's worth). Calcium lactate or calcium citrate are better forms.

If MDs knew how to advise patients on proper supplementation for bone health they wouldn't have so many patients developing osteoporosis.

[Sangye]

Debra, I am not suprised Dr. Hoffman said that, Dr. Langford didn't want me to really taper either but I did. My rhuemy here in greenville wanted me too. I go to Cleveland Clinic too. I see Dr.Langford. I am on Cellcept 2000mg and cyclosporine 100mg a day. I got of prednisone I think in Feb 2012. If you want to get off prednisone you must do it slowly. I tapered 1/2 of prednisone a month. So it took my forever but it worked. I am in medical remission right now. :)
Yippeeeeee!!!!! Wow, Elephant, I am so happy for you! :thumbsup::hug3: