Books about Wegener's

[Tmp521]

Has anyone read the Wegener's Granulomatosis Source book? Trying to get some opinions before I purchase. Any other books any of you have read that offer a lot of good info?
Thanks a bunch!
Tara


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[mishb]

Hi Tara,

I haven't even found the need to read one of those books - sorry.

Everything I need to know I get from here :thumbsup: (or from my specialists)

I have seen in previous threads over the years that people have mentioned some good books, but I'm not sure about the one you have mentioned

[Dirty Don]

Hi, I read articles up to date on WG/AIs. On here is where I learn the most 'affective' parts of WG, and it's in a language I can understand. Unless the book is recent, I wouldn't bother with a book...so much is changing in the AI world all the time...hoping WG is on the next 'discovery' list soon! LOL! Doesn't hurt to read everything you can, just digest it carefully.

[Alysia]

we ARE writing THE book about WG/GPA here in the forum :wink1:

[pwc51]

Hi Tara - I am not sure what information you might be expecting? It is a fairly fast moving world these days so, as has been mentioned above, texts tend to get outdated pretty quickly. This forum is great for building a picture of the variety of effects and treatments for this condition. A text that is refreshed frequently is available from Vasculitis UK - I believe it is called the Vasculitis Roadmap (or some such) - it is free as a pdf download. It even features a picture of my lower leg and foot - must be worth looking at!!!!
Regards, Peter

[Tmp521]

Thanks for the input everyone. The book was released in Jan 2013 and has many authors including CDC, Food and Drug Admin...just to name a couple. I do get a lot of info from here and it's always very insightful. I'm just reading everything I can get my hands on because for some reason something still just isn't clicking. By that I mean something still just does not feel right about my daughters dx. Maybe a part of me is in denial or maybe it's because I need things in black and white and Weg's is so far from black and white that it's just so overwhelming. I don't know...I just feel like as much as I've learned so far, I still don't know a lot. :)


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[Dirty Don]

I just feel like as much as I've learned so far, I still don't know a lot.

Well put...we all feel like that at times with WG...hang tough.

[vdub]

I'm just reading everything I can get my hands on because for some reason something still just isn't clicking
Pretty normal reaction, Tara. The first two or three years after I was dx'ed, I was reading everything I could get my hands on. I must have had 100 links to various articles and studies. I also used to track and graph my blood work. It might have been denial, but I think "disbelief" would be a more accurate description. Slowly, I came around and just accepted things as they were. Actually, that only happened several months ago, so it took almost 4 years to accept things. Now, I have very little interest in my blood work. If something's wrong the doc will tell me. Otherwise, I just live life the best I can. I now know my limits and try to live within them.

I agree with the others. Save your money ref the book.

[Dirty Don]

I agree with vdub...living life to it's fullest has been redefined for us. We need to deal with it...WG is no longer a death knell altho it can be if ignored. Accept who you are now (when you can...took vdub 4, has taken me nearly 3 years to start accepting and I'm pretty placid and down to earth in 'real life'!! LOL!), and do the best you can. But this kind of attitudinal approach still does not forego all the anxiety and stress you have to endure at the beginning of WG...it's there, it's real...no answers, just a lot of patience and fortitude...oh, and coffee!!! LMAO!

[MikeG-2012]

A book that I would highly recommend is Coping with Prednisone (http://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related-ebook/dp/B00CK503H8/ref=sr_1_1?ie=UTF8&qid=1393374038&sr=8-1&keywords=COPING+WITH+PREDNISONE) It was an invaluable resource to help me cope with the side effects and crap we have to deal with when taking that wonderful, awful medication.

[Wegetarian]

Do you have a link to the book you are talking about? Tried a quick google but didn't spot it.

I thought this was very interesting: Amazon.com: Inflammatory Diseases of Blood Vessels eBook: Gary S. Hoffman, Cornelia M. Weyand, Carol A. Langford, Jorg J. Goronzy: Kindle Store (http://www.amazon.com/Inflammatory-Diseases-Blood-Vessels-Hoffman-ebook/dp/B007U30B5O/ref=sr_1_4?ie=UTF8&qid=1393516323&sr=8-4&keywords=vasculitis)

Read the electronic edition at a local library as its quite expensive. Understood less than half of what I read, but the parts I did get were well written and interesting.

This one might also be interesting, but is not yet released:
Oxford Textbook of Vasculitis: Gene V. Ball, Barri J. Fessler, S. Louis Bridges Jr.: 9780199659869: Amazon.com: Books (http://www.amazon.com/Oxford-Textbook-Vasculitis-Gene-Ball/dp/0199659869/ref=sr_1_2?ie=UTF8&qid=1393516323&sr=8-2&keywords=vasculitis)

I do agree with the others though that its not all that rewarding to read those books. When I was diagnosed I read everything I could find, and it was nice to find out more about Wegs. Now it kind of feels like a waste of time, not that interested in finding out what nasty things it might cause me or see pictures about them.

[annekat]

Very expensive, indeed. But something I think all doctors who might find themselves treating vasculitis should probably have on their shelf, or on their kindle. I hope it is also available in hard copy.

[ingemlb]

A book that I would highly recommend is Coping with Prednisone (http://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related-ebook/dp/B00CK503H8/ref=sr_1_1?ie=UTF8&qid=1393374038&sr=8-1&keywords=COPING+WITH+PREDNISONE) It was an invaluable resource to help me cope with the side effects and crap we have to deal with when taking that wonderful, awful medication.
Thanks Mike. I have ordered a copy now. I have absolutely no clue about any steroids apart from what I have been picking up here and there the last few weeks since diagnosis so this will be a great place to start :) Inge

[me2]

Thanks for the tip on the Hoffman/Langford book. I found a hard copy of it brand new in India that will be shipped to my house for about $45.00 using Alibris book sellers. It says they have two left- I dunno.

Alibris gives discount coupon names that you enter when you order to save money. On this order,since it was more than $40.00 there was a coupon code that knocked off $6.00. Shipping was super cheap, I don't know how they can do that from India, but , I have never had a problem with Alibris. I have ordered lots of expensive books from them over the years.

If you want a copy , Google Alibris, enter the name of the book on the Alibris search engine and don't forget to use the coupon code when you order. The code word I found was the word -- FURTHER
Next visit to my Rheumy I'm going to slam it down on the table and say "Have you read this?" If not , why not ? hahaha
It sounds like a really good book to have for a weggie. I won't understand most of it. My plan is to loan it to Anne so she can explain it to me.

[MikeG-2012]

Thanks Mike. I have ordered a copy now. I have absolutely no clue about any steroids apart from what I have been picking up here and there the last few weeks since diagnosis so this will be a great place to start :) Inge

It is a really cool book written by two sisters, one with lung disease, the other is an MD. They write with tag-team approach from each other's perspective. I keep going back to it each time I'm prescribed the steroids.

Enjoy!

[Wegetarian]

If you want a copy , Google Alibris, enter the name of the book on the Alibris search engine and don't forget to use the coupon code when you order. The code word I found was the word -- FURTHER
Next visit to my Rheumy I'm going to slam it down on the table and say "Have you read this?" If not , why not ? hahaha
It sounds like a really good book to have for a weggie. I won't understand most of it. My plan is to loan it to Anne so she can explain it to me.

Yeah, I think they sell a bunch of text books cheaper in India. I guess they couldn't really sell almost anything with the prices they charge us in Europe or the US. Probably the publishers prohibit companies from selling them elsewhere so they can't be sold in our stores but if someone ships it I'd see no harm in buying one (i.e. I'd assume its a legit copy and not some bootleg as one often sees with cheap DVD's)

I actually did something similar, and printed out the chapter on Wegs and the chapter related to eyes and had them with me when I went to see my docs. A rheumy was interested and borrowed my papers, but the opthamalogist (or whatever the eye-doc's are called) didn't seem interested at all.

Maybe I should search for some "The human immune system for Dummies" book, I mean it all does seem quite interesting, but with close to zero knowledge of how the immune system works the chapters on T-cells or whatever is close to impossible for me to understand. It was interesting to read though that its hard to study this, as they can't reliably test many things on animals since our immune systems are different.

[annekat]

Looks like we are talking about a few different books here. Kirk, if your rheumy HAS read the book by Langford, Hoffmann et al, then maybe I'll consider making the trip to Seattle to see him, if he'll take me, that is. I guess since you live close to me, it would be nice to be loaned the book, but don't expect me to explain it to you! Ha, ha. I might be able to understand the one Mike recommended on Coping With Prednisone, which also sounds worth having.

[windchime]

A book that I would highly recommend is Coping with Prednisone (http://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related-ebook/dp/B00CK503H8/ref=sr_1_1?ie=UTF8&qid=1393374038&sr=8-1&keywords=COPING+WITH+PREDNISONE) It was an invaluable resource to help me cope with the side effects and crap we have to deal with when taking that wonderful, awful medication.

Thanks for the info Mike ordered mine yesterday. Look forward to reading it.

[ingemlb]

Maybe I should search for some "The human immune system for Dummies" book, I mean it all does seem quite interesting, but with close to zero knowledge of how the immune system works the chapters on T-cells or whatever is close to impossible for me to understand. It was interesting to read though that its hard to study this, as they can't reliably test many things on animals since our immune systems are different.

Yes and that is the big issue. The Human Innate immune system behaves differently so testing can only be done using computer simulations (using very high powered computers) and in vitro/cellulo tests after that they need to find human volunteers and that of course is not that easy and not that acceptable by many medical bodies. Trouble is also that most don't realise that our innate immune system behaves differently and hence a lot of drugs/treatments get approved because they work on mice etc.

[MikeG-2012]

Thanks for the info Mike ordered mine yesterday. Look forward to reading it.

I'm glad I could make the recommendation Cindy. Let me know what you think of it! (-8

[BookNut]

As others have said, information is changing so rapidly that books can often be out of date. Still....sometimes the old remedies work for some folks and the new remedies sometimes do not work. We are all so different.

Here are suggestions from a tech-savvy retired librarian:

1. Go to your public librarian. Be sure to ask for the help of the RESEARCH LIBRARIAN. Many folks think that everyone who works in a library is a certified trained librarian. Not so. The library assistants and clerks are knowledgeable and helpful and libraries cannot do without them. But the research experts are the actual librarians. Don't be afraid to ask for their help. In small libraries, you may find that they only work in the daytime. The evening hours might be staffed by clerks.

2. Take a look at World Cat. WorldCat.org: The World's Largest Library Catalog (http://www.worldcat.org)
This will tell you what libraries own the books. Alas - the interlibrary loan system is not what it should be. Generally you are limited to what is available from libraries in your region. However - there are also links to where to buy the books. And the fact that a book is in a library gives you some indication that it was probably well reviewed and deemed worth the price of purchase - at least at the time it was purchased. Many of the materials on WEgengers are available only at hospital and research libraries - but you never know. Some of the libraries might be located in your area, or in driving distance.

3. Ask your local librarian if they have access to research databases. They most likely do, and as a resident, you have the right to have the access information, including the passwords. (see #5)

4. Search Google Books. Google Books (http://books.google.com) Much can be read online and there are links to "find in a library" and also links to purchase the books.

5. Search Google Scholar. Google Scholar (http://scholar.google.com) This will bring you many scholarly articles. Many can be printed in full. But many have to be ordered - usually pretty pricey. DO NOT PAY FOR ANY OF THESE ARTICLES until you have checked with your library. Your local library system most likely subscribes to online databases that will give you free (tax-payer paid) access to the articles. They will give you the web addresses and passwords.

As I write this, I realize that I should post this as a general information post so that as many members as possible will see this information. Many people do not realize the extent of the services that are available to them via their libraries. Libraries are not just for books anymore - and good librarians know all sorts of tricks to help you out.

[windchime]

A big THANK YOU Jacquie :thumbsup: for the information. Wow so much to learn. Yes, do post this under the general thread as well, as it is good reference information. Again thanks for taking the time to post this. BIG HUGS TO YOU!! :hug3::hug3:

[BookNut]

I have just finished posting it under general WG chat. Here is the link: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3799-libraries-your-top-research-assistant.html

I have added several other ideas. Once I get started on libraries and research I don't know how to shut up! :biggrin1:

[Wegetarian]

Good tips Jacquie!

Also if you happen to go to a university library they might have direct acccess to most articles, since they might have granted access to the entire school network (inc the free-to-use library computers).

[me2]

That is true Wegetarian. When I did research on natural alternatives to Mesna with Cytoxan therapy I was told by the University librarian I could use their data base of access to periodicals and then copy the articles to a flash drive- or email them to myself at home.

[ingemlb]

It is a really cool book written by two sisters, one with lung disease, the other is an MD. They write with tag-team approach from each other's perspective. I keep going back to it each time I'm prescribed the steroids.

Enjoy!

Hi Mike. My copy of Coping with Prednisolone arrived the other day and I have read it from cover to cover. Amazing Book. Sections of it I could have written myself (describing the side effects) and it was full of great ideas how to reduce them.

I am going to take it along to every specialist I see and tell them to recommend it to their patients and their family members. I read out entire sections to my husband.

Thanks again for recommending it :)