WG & Genetics

[Daggar]

In conversations with Holly's doctors the following 3 always come up as links to WG (auto immune disorders):

1. Infection
2. Antibiotics (prolonged)
3. Genetics (predisposed)

According to them Research resources are stretched to the max with attempts to find safer and more successful treatments. Not enough research into causes has been done -- including genetic factors.

After reading a few studies online I'm leaning toward a possible genetic factor that is triggered by 1 and/or 2. There are too many cases of multiple auto-immune disorders to ignore. The environmental element usually causes 1.

Holly's sister has a skin disorder (lichen sclerosus) that has been linked to the immune system. My wife's family has a history of lupus and MS. There are cases of multiple family inflictions on the WG parent site.

How many have known auto-immune disorders in their extended families?

[Jack]

I think it is only recently that autoimmune diseases have been recognised and it would seem that they are quite common. However, the occurrence of more than one case of Wegener's in a family is almost unknown. I know that when I was first diagnosed there was only one although there seem to be a few more cases now. This is not the case with other autoimmune diseases such as arthritis which have a strong tendency to run in families.
It may be that there is a genetic predisposition towards developing these diseases, but some are just more common than others and Wegener's is one of the very rare forms. Doesn't it make you feel special? :wink1:

[Daggar]

The genetic studies are hard to find but here's the conclusion of one completed in August/2010 in Sweden.
Conclusion. Relatives of patients with WG are at increased risk of being diagnosed with other autoimmune/inflammatory diseases, indicating shared susceptibility between WG and other auto-immune/inflammatory disease.
Another puzzler is what is classed as an "auto-immune" disorder? Asthma is huge on my side of the family and I just read that some doctors like to class it as an auto-immune disorder while others do not... all very confusing.

[delorisdoe]

autoimmune is very common on my mother side.

a cousin with juvenile diabetes
a cousin with juvenile arthritis
me i am alpha 1 antitrypsin defficient, asthma, wegners.
my brother has psoriasis and something called Devicks-even stranger than wg
mother has psoriasis
father rheumatoid arthritis.

[Daggar]

Interesting German study conclusion:

(2004) performed an extended association screen with 202 microsatellite markers, representing apoptosis-related genes, using pooled DNA of 150 Northern German patients suffering from WG and 100 healthy Northern German controls. Six microsatellite allele patterns were significantly associated with WG. One marker remained significantly associated after multiple corrections. This marker, representing the retinoid X receptor-beta gene (RXRB; 180246 (http://www.wegeners-granulomatosis.com/omim/180246)), is located in the major histocompatibility complex on chromosome 6p21.3 between the HLA-DPB1 (142858 (http://www.wegeners-granulomatosis.com/omim/142858)) and DAXX (603186 (http://www.wegeners-granulomatosis.com/omim/603186)) genes. HLA-DPB1 typing and fine mapping of the region with additional microsatellites and SNPs revealed a strong association of WG with the DPB1*0401 allele (odds ratio of 3.91) compared with controls. In addition, an extended haplotype, DPB1*0401/RXRB03, showed an even stronger association with WG (odds ratio of 6.41).

Mumbo-Jumbo to me but had a friend who studied genetics in University tells me that this would indicate a "connection"..... which once again points to the "not enough research" on the genetic factor as of yet.

[ArlaMo]

As a mother, I hope there is no genetic connection. Wishful thinking, I know...

My sister has fibromyalgia, but that is the only close relative I'm aware of that has an AD.

[JanW]

And I was just reading in the VF newsletter that WG actually doesn't meet all of the 'classic' criterion of an autoimmune disease, so in our lifetime may end up falling out of that classification.

The same article stressed that genetic links had not be found (this for WG in particular, not AI diseases in general).

[Sangye]

At my last appt with Dr Seo I asked him the following:

1) Do you think it's genetic?
No. It's almost never seen in families.

2) Does Wegs occur more often in families with AI diseases?
No. When you look at all the research, the incidence of Wegs in an AI-affected family is the same as in a non-AI affected family.

3) Are the researchers getting any closer to isolating a cause of Wegs?
No. They still have no idea.

We have to be careful when isolating one study's results. The Wegs researchers look at all the studies and can make accurate conclusions.

[Sangye]

And I was just reading in the VF newsletter that WG actually doesn't meet all of the 'classic' criterion of an autoimmune disease, so in our lifetime may end up falling out of that classification.

The same article stressed that genetic links had not be found (this for WG in particular, not AI diseases in general).
Wow, Jan that's really interesting. Can you summarize why it doesn't meet the criteria? (I don't get the newsletter)

[Daggar]

"You have to be "careful" when reviewing one study" -- that's the problem these studies are as "rare" as the disease. WG doesn't occur often in families but AI diseases do and from what I've been told WG is an AI disease. Of the studies that are done in Europe (where most of the WG research has been done) they cannot confirm a definitive genetic connection, however, they cannot rule it out either. Ask the poster on the Weggie Parent site if she feels there isn't a genetic factor -- two daughters and a sister that have WG and polyangitis vasculitis. By ignoring a "possible" genetic connection you limit the chance of finding a possible cure. I'm all for these new studies that are looking into the genetic component -- what are the options? For a doctor to tell you that researchers have "no idea" is disheartening....

I guess the big quesiton is -- If one family member has Lupus... one has Polyangitis Vasculitis.... and another has WG -- would there not be a genetic connection?

The grey area with all this is how often is WG not diagnosed or mis-diagnosed? How often do doctors (not researchers) look beyond the "immediate" family to verify AI diseases? I do not mean to call into question the care Holly's team of doctors have provided but they are so busy with the "treatment" roller coaster they do not have time to ask questions regarding possible causes. So when these doctors are predisposed to the "no idea" way of thinking it is very little wonder why the search for cause or cure have made very little progress.

Sorry for venting!

[LisaMarie]

one of my Uncle s has Kawasaki....he hs had it his whole life and it is a vasculitis i have asthma as does my mom and eczema....so who knows:confused1:

[Palmyra]

I have read that one out of every five Americans has some type of autoimmune condition. That would make themextremely common. Of course, few are as rare, and with such significant co-morbitity. I find the possible etiology of Weg to be an interesting topic, but it can drove me crazy for quite a while after my daughter's initial diagnosis. I was sure something I had done, or exposed her to caused the disease. Those feelings of guilt are much better now, but it took a long time not to blame myself.

[Jack]

We have had threads in the past asking the question of what causes Wegener's since there are several theories and it seems that we each have our favourite that fits in with our particular circumstances. In my case, I come from a line of long lived healthy ancestors who did not seem to suffer from any diseases at all! However, I was exposed to polluted sea water and my first symptoms were those of an infection. For this reason, I like the theory that my Wegener's was triggered by an infection that my body could not kill and my immune system malfunctioned during the attempt. I had also had some fairly heavy duty inoculations before going to work abroad, so my second string is that this was the cause. I have got no hard and fast facts to support either of these ideas, just suspicion! ;)

[Daggar]

I guess I'm at that crossroads where I'm getting totally frustrated with "stay the course".... feed the drugs to the patient.... no FDA approval for these drugs because there aren't enough studies to prove their safety or success... telling patients they have "no idea" as to what causes it even though they have their suspicions because there isn't enough data to draw from... etc.... etc.... I 've tried to downplay what the drugs have done to Holly in the past 4 months but this morning it hit me hard.

You have to speculate in order to "investigate"... there isn't "conclusive" evidence of a genetic connection but there are too many questions raised by these studies that beg further research and my hats off to those who are willing to do it.

I guess the biggest stumbling block in all of this is -- what is considered auto-immune and what is not. These doctors seem to disagree on what fits the label.

I have one daughter with WG and another who has asthma/excema who now has "lichen sclerosus" -- another one of those unknown immune conditions. Most doctors feel it happens in the case of an overactive immune system and effects the blood vessels below the skin.

[drz]

Wow, Jan that's really interesting. Can you summarize why it doesn't meet the criteria? (I don't get the newsletter)

Some one can put you on their physician mailing list for a free copy.

[Daggar]

I guess cancer and heart disease are in the same class as auto-immune disorders..... so if you ask your doctor if heart disease or cancer is "genetic" he will tell you "no" but try applying for health insurance if you have a parent and grandparent that died of it and see how that turns out.

Polygenic diseases: This simply means "multiple genes". A polygenetic disease is under the influence of multiple genes, but not a single gene. Usually this means that a disease does not have a high level of genetic causes, and is not strongly inherited down families, but there may be a familial inheritance pattern. Many of the big name diseases are in this class of diseases including cancers, heart disease, autoimmune diseases, and many others. With most of these conditions, they are not regarded as being caused by genetics, nor are they directly inherited from parents. However, a family history of disease is a risk factor for the disease, indicating that there is some inherited risk in the genes. The genetics of this type of disease is an area of current research for all of the major diseases.

[Sangye]

"You have to be "careful" when reviewing one study" -- that's the problem these studies are as "rare" as the disease. WG doesn't occur often in families but AI diseases do and from what I've been told WG is an AI disease.
What is true for one AI disease is not necessarily true for another. Basically what Dr Seo said is that for every Weggie with a family history of AI diseases you will find another Weggie without such a history. There is actually a fair amount of research out there for such a rare disease. The Wegs docs also draw from the histories of the hundreds of patients they see-- doesn't show up in the research.



Of the studies that are done in Europe (where most of the WG research has been done) they cannot confirm a definitive genetic connection, however, they cannot rule it out either. Ask the poster on the Weggie Parent site if she feels there isn't a genetic factor -- two daughters and a sister that have WG and polyangitis vasculitis. By ignoring a "possible" genetic connection you limit the chance of finding a possible cure. I'm all for these new studies that are looking into the genetic component -- what are the options? For a doctor to tell you that researchers have "no idea" is disheartening....
I'm glad that they're looking for a genetic link even though I don't think they'll find one. Dr Seo didn't say he was opposed to them researching it either. The woman with the family history of Wegs is exceedingly rare. Rather than suggesting a genetic link, it sounds much more like an environmental factor (eg toxins) behind those cases. I didn't feel disheartened by his comment that they have no idea about the cause. It's just the fact for the time being. Science is ever-changing!


I guess the big quesiton is -- If one family member has Lupus... one has Polyangitis Vasculitis.... and another has WG -- would there not be a genetic connection?
Not necessarily. A lot of what looks genetic is actually environmental. Family members eat the same food, live in the same home, etc... Just like Type 2 diabetes. Many family members often have it, but it's due to a shared bad diet, not a shared gene.

Hang in there, Daggar. :hug2:

[jola57]

We are all predisposed to diseases, it is only that some have a specific gene or enviromental and/or psycological event that triggers tese diseases. Studies have been made on twins (same egg) who lived in separate environments, and there was a vast difference in illnesses and diseases between them. In one instance Parkinsons was discovered in one twin living in Canada whereas the one in Australia is just fine.
I know how frustrated we can be with this disease but please do not believe in any advice that you may read unless it is fully sanctioned by your doctor. There are a lot of people out there praying on the sick and frustrated people who are looking outside of conventional medicine for a cure because they feel left out in the cold by the medical system. Just the other day my Mom told me that a friend has heard of this wonderful cure from a travelling healer and why do I not want to try it. When she said that "no my doughter is realy sick and no hockey pokey will help" the friend was ofended and told my Mom that "if your doughter has no faith then she will never be cured and I am sorry for her"
That is an extreme example of how low people will get to make money, its right up there with snake oil or do you remember emu oil from australia (for those of us way back in the beginning of the forum)
Just accept, we are sick, we are on medication for the rest of our lives, we will get better but also we will get worse. Although we do not have a cure, we have meds that keep us going and we can live as productively as we are able and contribute to our families and society.

[NicoleB]

there is a ton of lymphoma in my family which is not usually genetic, but it IS linked to an immune malfunction. there is also RA, psoriasis and other autoimmune skin issues, Hashimotos thyroid disease, interstitial cystitis (me), and in general, lot of "itis" type inflammation that runs in my family. now i have a cousin who has such a bizzare immune disorder that they cant even name it. There is definatly something going on in my family.

[Sangye]

Jolanta, very well put. (Emu oil happened before I was here, but I have a vague memory of it circulating through the holistic community as a cure-all.) You're an excellent example of someone who has accepted that the Wegs dog is here to stay and still lives life to the fullest. :smile1:

NicoleB, I have no family history at all of AI diseases. Not much sickness at all, for that matter. So there you have it-- you and I just canceled eachother out! :laugh:

[NicoleB]

i think there is a tendency in families for immune systems to be overactive, and pass that on. we seem to have a tendency to have a "confused" immune system in my family anyway.

but like cancer, its not always genetics.

[JanW]

And me too - not a single AI in my family, as far as I know.

Sange, to answer your question, I cannot begin to understand this, so I will just type it out verbatim, and maybe you can explain it! This is from an article by Dr. Abdou, out of Kansas City, and it indicates this was presented at the Symposium (I don't remember it if it was).

Classical immunology teaches us that the strict definition of a disease to be labeled as an autoimmunse disease should fulfill the Witebsky criteria. These criteria include the detection of an antigen, dectection of autoantibody, the autoantibody can transfer the disease to animals or humans in experiments and then these demonstrate the presence of the transferred autoantibody in the recipient animal at the site of vasculitis. He adds that he believes docs are using a very lose definition of autoimmune when talking about WG.

I understand everyone's desire to look for a cause and then a cure, but I'm sure that most of our docs have said that while this disease can lie dormant in us for many years, there is no cure, and most of us who get into remission will flare at some point again. However, as many here have pointed out, the subsequent flares don't have to be as severe as the initial flare. That's how I chose to look at it. My initial flare wasn't extremely horrible in terms of pain (despite my ENT's comment that "I resurrected you from the dead" -- there is truth to that), and I responded well to treatment (so far). I believe that I will have to have my stenosis fixed again at some point in my life, and my doc is only cautiously optimistic that I will be able to go drug free (but hey, I'm giving it a shot). My rheumy even told me that they don't fully understand all of the mechanisms that make methotrexate so effective in AI diseases -- and think of how long that drug has been used!

[Sangye]

I often treated families who had several members with allergies and an occasional AI disease. Pretty much every time I found that they all shared environmental factors (eg. poor diet, early childhood exposure to toxins, living under high-frequency electromagnetic fields).

You are right on in saying "confused" immune system, NicoleB. In holistic medicine we say the immune system has become "dysregulated." In some ways it's overactive and in some ways underactive.

[NicShaf]

It seems to me that the environmental aspect is much more scary than the genetic aspect. My dad has Myasthenia Gravis, another AI disease...however, I don't know that MG follows the traditional AI disease because they know the cause of it.
It makes me wonder, why are all these AI diseases coming up more and more...is it more accurate diagnosis? Or is it something in our environment or food that has caused more cases? This is what scares me for future generations and children of my own someday. Not that I will pass on a gene, but since we don't know what causes these, we don't know how to prevent them in the future.

I feel I have accepted WG pretty well, but I don't like the thought of being on medication for the rest of my life....especially being in my 20's. I realize that it may happen that way, but I like to keep the hope alive for a long term drug free remission

[Sangye]

Sange, to answer your question, I cannot begin to understand this, so I will just type it out verbatim, and maybe you can explain it! This is from an article by Dr. Abdou, out of Kansas City, and it indicates this was presented at the Symposium (I don't remember it if it was).

Classical immunology teaches us that the strict definition of a disease to be labeled as an autoimmunse disease should fulfill the Witebsky criteria. These criteria include the detection of an antigen, dectection of autoantibody, the autoantibody can transfer the disease to animals or humans in experiments and then these demonstrate the presence of the transferred autoantibody in the recipient animal at the site of vasculitis. He adds that he believes docs are using a very lose definition of autoimmune when talking about WG.
Whew-- I'll take a crack at it.

Here are the criteria and what we know regarding Wegs:
1) "Detection of an antigen"
Proteinase3 (PR3) has been identified as the antigen. It's a protein made by some types of WBC's.

2) "Detection of an autoantibody"
"Autoantibody" means an antibody that attacks one's own body as if it were a foreign body. ANCA has been identified as an antibody that attacks PR3, therefore ANCA is an autoantibody.

3) "The autoantibody can transfer the disease to animals or humans in experiments"
If they inject another creature with ANCA, it should attack that creature's PR3 and cause Wegs. To my knowledge this step has not been done. Interestingly, you can find ANCA incidentally in the blood of people without vasculitis.

4) "Then these demonstrate the presence of the transferred autoantibody in the recipient animal at the site of vasculitis"
If you inject another creature with ANCA it should cause vasculitis. The vasculitic tissue should then show ANCA autoantibodies. Because #3 hasn't been done, this step hasn't either.

Is everyone asleep now? I might have found the cure for pred-induced insomnia! :w00t:

[NicoleB]

I have to wonder. for those people like myself (assuming i have wegs) who test negative for ANCA, do you think its almost a different type of vasculitis than the anca-postive wegs, or do you think the mildness of some vaculitis is hiding the anca? like the anca might be super dilute? if a person is anca negative, what is the autoantibody thats doing the damage then?

[pberggren1]

Thanks Dr. Sangye! :wink1:

[Sangye]

It seems to me that the environmental aspect is much more scary than the genetic aspect. My dad has Myasthenia Gravis, another AI disease...however, I don't know that MG follows the traditional AI disease because they know the cause of it.
It makes me wonder, why are all these AI diseases coming up more and more...is it more accurate diagnosis? Or is it something in our environment or food that has caused more cases? This is what scares me for future generations and children of my own someday. Not that I will pass on a gene, but since we don't know what causes these, we don't know how to prevent them in the future.

I feel I have accepted WG pretty well, but I don't like the thought of being on medication for the rest of my life....especially being in my 20's. I realize that it may happen that way, but I like to keep the hope alive for a long term drug free remission
It wouldn't have been possible to miss so many AI diseases--some are quite obvious. They are definitely on the rise. We are poisoning our environment and eating highly processed foods. Both cause immediate damage to the body and also damage to our genes. So in that way AI diseases might be "genetic" but it would be due to environmental damage. Like if someone were exposed to high levels of radiation, their descendants are more likely to have cancer.

I think you should remain hopeful about a long-term drug-free remission, Nicole. It's entirely possible. The better your care is now, the more likely you will do well in the long run.

[RCOSSIO]

I've always heard that WG is not genetic...and as I have mentioned in the past.

1. My uncle was diagnosed with WG in 1992
2. My grandfather his father died from a nephristis in 1968...suspected cause was inflammtion of the small vessels.
3. My cousin same side of family was diagnosed with an autiimmune disorder Bullous Pempigoid

Yes maybe there is no genetic marker...but its just too coincindental

[Sangye]

I have to wonder. for those people like myself (assuming i have wegs) who test negative for ANCA, do you think its almost a different type of vasculitis than the anca-postive wegs, or do you think the mildness of some vaculitis is hiding the anca? like the anca might be super dilute? if a person is anca negative, what is the autoantibody thats doing the damage then?
Excellent question. I imagine that's a big reason why Dr Abdou is expressing doubt about the classification of Wegs as an AI disease--the antibody isn't always there, even with active disease. Is it sneaky or is something else going on.... No one knows.

[Sangye]

Richard, you and JanW just canceled eachother out. The "Wegs is genetic" and "Wegs is not genetic" teams are still tied! :w00t:

[RCOSSIO]

Sangye my uncle never had a positive ANCA...

[pberggren1]

I want to be on a team too!

[RCOSSIO]

Sangye...Jan has no avatar..I DO..therefore by my conclusion..I WIN!!!

Phil...join the team :thumbup:

[pberggren1]

I am zee vinning team!

[NicoleB]

i'm sure there is no wegeners gene. just a tendency towards immune issues.

[Daggar]

"......please do not believe in any advice that you may read unless it is fully sanctioned by your doctor. There are a lot of people out there praying on the sick and frustrated people who are looking outside of conventional medicine for a cure because they feel left out in the cold by the medical system. ........."

Now I'm being "completely" misunderstood - TRUST ME.... I do not believe in whacky medicine or precedures with no scientific basis nor do I believe faith or religion will somehow miraculously cure Holly. If a quack shows up at my door I will gladly show him the "quick exit" method.

Holly will continue doing what her doctors ask .... I'm just frustrated that you can say "no" to possible causes without merit. In communication with doctors involved in these studies they truly believe that better treatment, if not a cure, will be found in further studies on a gene susceptibility. I'm not pulling these quotes from one study - they are coming from the majority.

This is the common thread amongst those who have done the research... -- "Many lines of evidence suggest that a major cause of WG is infectious insult of genetically susceptible individuals."

What research is being done toward finding a cure for WG?

It is strongly suspected that Wegener's Granulomatosis has an underlying genetic basis. For this reason, much WG research is focused on finding a genetic cause (http://www.brighthub.com/science/genetics/articles/6631.aspx), knowledge of which could be used to develop a treatment that could effectively prevent people from being inflicted with the disease and/or could eradicate the condition in individuals who suffer from WG. Although the gene or genes responsible for the disease have not been identified, recent research efforts have narrowed the area of the genome in which the culprit gene resides (or the genes reside) to a very small portion. It is therefore expected that the genetic cause of WG soon will be found. Based on knowledge of the gene's function (or the genes' functions), it is hoped that scientists will be able to develop agents for optimally treating WG without side effects and without risk of recurrence.


And trust me -- we do live life to the fullest! Holly still does most of what she had done before. In fact the disease is not an issue at this point it's the side effects from the treatment. And as I've told Cindy if she needs me in any way to help with raising awareness I'll mush, I'll push, I'll carry the damn dogs if it means further studies.... because in the end that is what gives us "hope" for better treatment or a cure.

I just asked if there are any signs of "auto-immune" disease, vasculitis or asthma that runs in your extended family. I did not ask what your doctor thought.

[Sangye]

I guess I'm at that crossroads where I'm getting totally frustrated with "stay the course".... feed the drugs to the patient.... no FDA approval for these drugs because there aren't enough studies to prove their safety or success... telling patients they have "no idea" as to what causes it even though they have their suspicions because there isn't enough data to draw from... etc.... etc.... I 've tried to downplay what the drugs have done to Holly in the past 4 months but this morning it hit me hard.

You have to speculate in order to "investigate"... there isn't "conclusive" evidence of a genetic connection but there are too many questions raised by these studies that beg further research and my hats off to those who are willing to do it.
Daggar, I wanted to comment on this before it gets lost in the thread.... There is so little funding available for Wegs and the pressing need is to find treatments, so that is 99% of the research. It's a terrible failing, ensuring that people will continue to be diagnosed with this nasty disease.

Even though the situation is understandable with Wegs because of its "orphan disease" status, this is a criticism among holistic docs-- that the medical profession spends the majority of its time researching drugs and disease detection, and almost nothing on prevention. Look at cancer for example. HUGE money goes into researching drugs and nearly nothing on prevention. Maybe they can't cure cancer but they probably could prevent a great deal of it.

A famous story is taught to students of holistic medicine to illustrate the difference between the holistic way of thinking and allopathic/ medical:
A village had an ongoing problem with people falling over a bridge and into the river. Rescuing people was a constant issue, and many people drowned. The villagers got better and better at organizing rescue missions--using boats, ropes, scuba divers, etc.... They even put signs all over the place: "Beware of the bridge." But despite these efforts, people continued to fall into the river. One day a traveler came to the village. As he was about to cross the bridge, a number of villagers shouted to him, "Beware of the bridge!" They told him the troubles they had with people falling into the river and told him how clever they had gotten at organizing rescues. They said "We can save some, but many die." He looked at the bridge for a moment and said, "But why don't you just replace the broken railing?" :wink1:

[Sangye]

[SIZE=2][COLOR=red][I][B]

I just asked if there are any signs of "auto-immune" disease, vasculitis or asthma that runs in your extended family. I did not ask what your doctor thought.
Daggar, this question has come up many times in the group and we have never found a common thread among Weggies. I posted the info from Dr Seo because we are small group of people who might draw conclusions erroneously, while the Wegs docs see hundreds of patients and also review all the literature out there.

[Sangye]

Phil, you gotta pick a team based on your family history. Then we'll send you your team shirt. :wink1:

Richard, you are such a stinker! Not many people even know about the "no avatar" rule. :laugh:

[NicoleB]

all i can say is, in the meantime, i'm taking anti-inflammatory herbs because i do believe they help, even minor way. i figure i can let my "waiting" stretch if i can corral some of the inflammation. i know they are not as strong as prescriptions, but i have no choice but to wait until a real diagnosis is made. in the meantime, i'm doing what i can. i think there is enough evidence that certain supplements and herbs ARE anti-inflammatory, and not mere snake oil.

[Sangye]

NicoleB, be careful with herbs and only use them under a holistic physician's care. Many are also immune-boosting and can worsen the Wegs. But yes, absolutely there are natural supplements and herbs that are anti-inflammatory. They're not strong enough to tame active Wegs but they can sometimes allow you to use less pred and can help keeping milder symptoms under control. I take fish oil and some other anti-inflammatory supplements. I'm on 2.5mg pred and can definitely tell the difference if I don't take them-- more inflammatory pain.

[NicoleB]

yes, i try to make sure they are not stimulating. i take fish oil as well, but recently have been reading good things about nettle leaf and hydrangea root extract having an effect on Tcells. basically they are natural TNF inhibitors, much like the more hefty drugs out there like humiria, enebel, etc.

i may have changed the subject, sorry! :)

[JanW]

You guys are too funny! I don't have avatars on any of my forums -- just not something I do, no big reason or anything.

Maybe after I have my nose repaired I'll put a picture up!

[NicShaf]

yes, i try to make sure they are not stimulating. i take fish oil as well, but recently have been reading good things about nettle leaf and hydrangea root extract having an effect on Tcells. basically they are natural TNF inhibitors, much like the more hefty drugs out there like humiria, enebel, etc.

i may have changed the subject, sorry! :)

Nicole,
You may want to also research some "anti-inflammatory" diets. I also take fish oil, although my rheumy didn't give it much merit, I feel that it will help. But, I've also read a lot about removing preservatives from your diet, and how this can reduce inflammation, and other "heart healthy" diet choices are supposed to be anti-inflammatory. It can't be counter-productive to eat healthy, it is how everyone should probably eat all the time, now we just have more of a reason to do so
:)

[freakyschizogirl]

You guys are too funny! I don't have avatars on any of my forums -- just not something I do, no big reason or anything.

Maybe after I have my nose repaired I'll put a picture up!

lol JanW, you can see why my pic is just of my eyes, for the same reason!!

[pberggren1]

My Mom's cousin has GCA and I have some second cousins that have diabetes as well as some great uncles. And RA is quite common on my Dad's side. I have a second cousin that has MS and another one that has Lupus.

[elephant]

Family history of Autoimmune diseases: Graves disease, Poly arteritis nodosa and Rhuematoid Arthritis.

[Daggar]

I guess some of us will agree to disagree on this. The only thing I can do is encourage people to take part in these genetic-based studies. A vial of blood from the immediate family and data drawn from the extended family is a "small" inconvenience to ask when you consider "treatment" has made little progress (other than recentliy adding rtx to the mix) since the 70's when they started using pred/immune suppressants. That's 40 years of pretty much the same.

I'll always believe that an infectious state led to Holly's WG, however, I would never rule out that there is a genetic susceptibility involved. These studies (Europe & N. America) appear to have found a possible gene but they just can't connect the dots.....yet.

I also wouldn't rule out immunization and environmental causes as well but it'd be quite a stretch to say environmental without that person having a genetic susceptibility or we'd see more workplaces with multiple cases.

[NicShaf]

I think it is good that researchers cover all bases...if they can figure out where Wegs comes from, it should help in finding a cure, right?

If anyone hears of a study in the US, I am more than happy to lend a vial of blood, and I know my family would do the same.

Here's to hoping they can make progress in the coming years:)

[Sangye]

Daggar, I'm not sure I understand what you/we are disagreeing with. I've already participated in the genetic study as has one of my family members. Many of us on here have, whether or not we think the cause of Wegs is genetic. I didn't ask him directly, but I can't imagine Dr Seo is opposed to research for genetic links. In fact he authorized his clinic to draw my blood for the Mt Sinai genetic study.

I believe my case was caused by toxins-- lots of vaccines for the Peace Corps along with multiple toxic exposures. In particular, I was living in a manufactured home at dx, full of chemicals. A previously healthy dog became sick with an undiagnosed autoimmune sort of disease and died shortly after moving into that home. Her illness looked quite a bit like Wegs, actually. I have no history at all of a prior infection.

As far as workplaces with multiple cases, there have been several people in this group and another group I used to belong to that reported such a thing. Some were multiple cases of Wegs and some were a mix of AI diseases including Wegs. Silica exposure is an example of environmental onset.

[pberggren1]

I have to lean more towards toxins and chemicals being the cause of Wegs or other diseases like it. But to be honest I don't think about what causes Wegs from a clinical point of view. I could really care less. To me I have it and will deal with it however it goes in the future. I think I really have little control over Wegs besides being sensible like trying to reduce my toxic exposure and eating healthy and trying to avoid germs and sick people. So to sum up I think a lot of newly dx people are looking for so many answers as to what Wegs is, what causes it, what the treatment is ,etc. But as time goes on we have an opportunity to learn and then I think most of us realize that we just have to accept what we have.

[Daggar]

Awesome that you're involved in the Mt. Sinai study!

Agree/Disagree -- I believe there is a "genetic susceptibility" or at least a gene that is responsible for short circuiting the immune system and these studies are needed to find that. I may of worded it wrong from the start?

Holly has not been subjected to "toxic exposure".... but she has had chronic uti's since little.

You believe your case is environmentally caused which is highly possible.... now I have you "speculating"..... this is what the thread was meant to do.

I'm sure your doctor has his theories on possible causes or influences - I know Holly's does - but they're professionals and must wait for more concrete evidence.

As far as the causes/influences go -- genetic susceptibility, environmental, infection, immunization -- it poses the question "which came first the chicken or the egg?":glare:

[pberggren1]

The chicken came first.

[Daggar]

Point taken Phil!

But the age can play a role in that train of thought - WG at 14 years old is a tough pill to swallow.

[pberggren1]

No doubt a 14 year old nowadays will have a tough time dealing with Wegs or other illnesses like it. But I know some young people from age 7 to 20 that came down with chronic illnesses and have dealt with them quite amazingly. I think Holly is doing awesome because she has awesome parents.

[Daggar]

ooops.... did i open a can of worms with the chicken or the egg question?

I will gracefully bow out in that matter -- A Saskatchewanite would know ......:wink1:

[pberggren1]

Worms? In a can? No way! Yes it is true that Saskatchewanites are mucsh smarter than the rest of the country.

[drz]

Worms? In a can? No way! Yes it is true that Saskatchewanites are mucsh smarter than the rest of the country.

They are only ones who can actually spell it and pronounce it so they must be "mucsh smarter", right:wink1:

Phil, how are things going with you at present? feeling any better?

[JanW]

I have to imagine that one of the hallmarks of the earliest days of dx (dx to a year on maybe), is a propensity to look for causes/reasons/cures. That would just seem psychologically normal. Everyone has to ask: 'why me?' I don't think anyone doesn't.

For a little perspective, I met so many people at the Symposium whose bodies had been irreparably damaged by the drugs that they were given to combat this disease 15, or even 10 years ago (e.g. ctx for many years, pred at high doses their entire lives). I think that the educated doc is learning more all the time about this disease and is trying to treat with as little as possible while still putting the disease into remission. Back in the day when people were closer to the idea that this was a fatal disease, docs would take out a bomb to kill a mosquito -- no matter how severe or mild your case was, you were getting treated in a pretty ham handed way. The docs at the Symposium say that has really changed now, because of the research that continues on the drugs that we have at our disposal, and their effects.

[Sangye]

I have to imagine that one of the hallmarks of the earliest days of dx (dx to a year on maybe), is a propensity to look for causes/reasons/cures. That would just seem psychologically normal. Everyone has to ask: 'why me?' I don't think anyone doesn't.


I agree. If you get hit by a truck you naturally want to find the driver who ran you over. After a lot of time passes though, you realize that the driver is long gone and you really need to focus on the bones sticking out of your leg. :blink:

[NicShaf]

Sangye, you always have the best analogies....they always make me laugh, but they cut straight to the point:)

[Daggar]

Truck? Maybe Weggie Bus would suffice? Maybe I could whip up a rendition of The Who's Magic Bus with some lyric changes -- need Jack (aka L. Cohen) for the backing vocals.

Crazy train is already spoken for.....

Sang - your p.m. is full

I completely understand the "taking care of things now" .... but you have to look to future medicine at times. Holly's gynecologist has offered ovarian biopsies to young women who are too "high risk" to even consider pregnancy. She explains to them that she personally doesn't believe organ regeneration will happen for another 15-20 years but she has been proven wrong with how fast technology has moved in the past 5 years. It gives them a bit of comfort knowing the door hasn't been completely shut. She provided me with an interesting question for Holly's Nephrologist who we have a clinic with this Thursday -- how far are we away from regenerating kidneys from tissue samples?

I guess what I'm trying to say is "I'd feel irresponsible as a parent if I didn't read these studies or try to find out as much as possible".... she is scheduled for another biopsy at the end of the iv meth so if the Neph believes there is a chance kidney regeneration can happen it may be another option. Trying to cover the bases so to speak.

If no one minds... I still want to hold on to the belief they will discover how the genes in question play a role in WG. At least find how and why the NALP1 gene misfires in immune disorders.

Sorry for rambling....I've got a case of the Marta or she could say she has a case of the Daggar....:wink1:

[pberggren1]

Sorry Daggar, we cannot allow someone on here to hold on to such a belief. Your case will go before the review board.:wink1:

[Daggar]

Phil -- Just want to make sure your judgement would be impartial -- aaahhh... .would that be scheduled for "before" or "after" you have your orifices scoped?:w00t:

[Jack]

-- need Jack (aka L. Cohen) for the backing vocals.



I don't do backing vocals!
And my agent insists that I get Star billing!
:flapper:

[Daggar]

Okay Jack.... we'll have to work with your agent on that one.

I guess I've been moved to the back of the bus! Does that mean I have to sit beside Phil and his scoped orifices?:unsure:

[pberggren1]

Yes Daggar you will have to be reviewed after I have all my orfices scoped and then you can sit beside me! :wink1:

[Sangye]

Didn't you read the new member booklet Daggar? It clearly states that all case reviews are done after orifice-scoping. So sit down and contemplate your kidney sprouting idea for a few more days. Besides, Phil is very distracted right now. He can't find a missing sock and is hoping that it turns up during "the procedure." :ohmy:

[Daggar]

Okay Phil - scoped or not you're buying at Tim's! OMG is that a sock in your coffee?:w00t:

I have to talk to Jack's agent but I think you can also become a member of the "backing vocals" because I believe when these procedures are done you'll fit nicely as a "soprano"!

[pberggren1]

I found the sock a while ago and I am a tenor.

[Sangye]

YOU FOUND THE SOCK AND DIDN'T TELL ANYONE???!! :ohmy:

[pberggren1]

Sorry! I will post sooner next time.

[Daggar]

Any word back on your ultrasounds?

[pberggren1]

I will know Friday the Ultrasound results of kidneys and bladder.