Don't stop researching

[BookNut]

We knew there was more than one reason we need you to stay on the forum, WG or not!

Yes - hopefully I can be of help to others!

[pwc51]

I went to the Vasculitis UK Patient Symposium in London yesterday. A full on day with 18 world experts presenting. One of the presenters was Dr Peter Merkel from the US who gave an overview of the research going on. He listed many many items and stressed that there has never been more Vasculitis research going on than today!! It seems there are potentially some interesting new drugs in the pipeline. When the slide decks are published I will see if I can get some of the relevant data to this site. What surprised me was the fact that in some cases the drug companies are now 'sponsoring' some of the research - exciting times!

[BookNut]

I went to the Vasculitis UK Patient Symposium in London yesterday. A full on day with 18 world experts presenting. One of the presenters was Dr Peter Merkel from the US who gave an overview of the research going on. He listed many many items and stressed that there has never been more Vasculitis research going on than today!! It seems there are potentially some interesting new drugs in the pipeline. When the slide decks are published I will see if I can get some of the relevant data to this site. What surprised me was the fact that in some cases the drug companies are now 'sponsoring' some of the research - exciting times!

That would be great information to share so folks can follow new treatments as they are developed. People just had to cope as best they could prior to the internet...especially if they lived far away from large public and academic libraries. What is available now is a librarian's dream. When I was in library school in 1970...they trained us well to send in cataloging info on every book we purchased because "some day" we would be able to search every library in the world. We were also taught how to enter information on research topics into rudimentary computers via punch cards.It is so gratifying to me to see that sci-fi fantasy become a reality!

But it is not simply the access to raw data that we have now...it is the ability to communicate with other folk having similar issues. I am sure this forum encourages people to try new treatments with the best possible combination of information....from their doctors, from websites, and from real life Weggies!

[Debbie C]

Jacquie,you can get a copy of the cd of anything you have done at a hosp.or other facility. I can never get the cd to open on my computer so I get a copy of the report thru the medical records dept. I have the cd's and reports of everything I have had done. I thought it would be good in case I ever move.

[BookNut]

Jacquie,you can get a copy of the cd of anything you have done at a hosp.or other facility. I can never get the cd to open on my computer so I get a copy of the report thru the medical records dept. I have the cd's and reports of everything I have had done. I thought it would be good in case I ever move.

I have the reports....somewhere. Gotta dig them out. Had a hurried clean up in prep for our baby granddaughter's visit. Now we are trying to find things again. I wish they were online because at least they would not get lost there!!

[Pete]

I believe this is the study Dr Villa Forte referenced during my discussion with her about getting off mtx last week: Granulomatosis with polyangiitis (Wegener's): impact of maintenance therapy duration. - PubMed - NCBI

[Alysia]

Hi Jacquie,
bronchiactesis was also in the list of Phil's diagnosis. I copy to here what he wrote about it after a meeting with his then new lung doc (post from April 1) in here: http://www.wegeners-granulomatosis.c...ggren-239.html

First off he is not convinced that the scar tissue in the bronchi is the main thing causing my shortness of breath. He says I have a condition called bronchiectasis which makes it difficult to clear all the mucus out of the lungs. He will get me to see a respiratory therapist to help learn how to clear these out. I also have a device that I used for a while when the M. Abscessus was being treated called a flutter valve. It is plastic thing with a metal ball bearing in it that you breath into and it vibrates and thus vibrates the airways to loosen up the mucus so it comes up easier. I didn't have much success with it back then but he urged me to try it again so I will. He said this is about the only thing that can treat this bronchiectasis besides antibiotics for the frequent lung infections one would get. He said it is a vicious cycle that usually only gets worse. I am hoping this respiratory therapy and flutter valve will help with that.

feels so warm to read Phil's posts...

on the next page you can see links that I posted to my sweetie then:

http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/889-update-pberggren-249.html

and here:

http://www.wegeners-granulomatosis.com/forum/weggie-s-stories/889-update-pberggren-254.html

I am not sure that I posted the links correctly, so you can find those on his thread on pages 249 and then 254. the link to his thread seems ok.

[annekat]

Great, Alysia... I knew Phil had had this condition, and was hoping you'd find his posting on it. This also shows how valuable Jacquie is on here even though she doesn't have Wegs; any of us can get this, too, and her bringing it up makes us more aware and leads us back to Phil and his experience. I sometimes wonder if I could have this, because I spend a lot of time trying to cough stuff up. But I don't think I've had any lung infections, which I think Jacquie mentioned as a cause, and I know Phil did, so maybe there is no connection to my case. But it is all excellent information to have, since we don't know what will happen later, and we should all be familiar with the terminology, causes, and treatments. It sounds like the flutter valve might even help someone like me who has a less serious but still troubling condition of needing to loosen things up in there. I think my problem is currently worse because of seasonal allergies causing more mucus and asthma, as it tends to clear up when the pollen levels drop.

[annekat]

I believe this is the study Dr Villa Forte referenced during my discussion with her about getting off mtx last week: Granulomatosis with polyangiitis (Wegener's): impact of maintenance therapy duration. - PubMed - NCBI

This is great, Pete, and applies to me, because I take MTX, and wouldn't mind staying on in indefinitely for this reason as long as no problems with my liver are shown in my blood tests. I wonder if you meant to post it here, though, as I know you were talking about it in another thread.

[Pete]

This is great, Pete, and applies to me, because I take MTX, and wouldn't mind staying on in indefinitely for this reason as long as no problems with my liver are shown in my blood tests. I wonder if you meant to post it here, though, as I know you were talking about it in another thread.

Hi Anne,

Yes, I meant to post here as this thread seems to have the focus on research. Dropped 0.5 mg/day of pred yesterday. Will stay at 2.5 mg for a month. If no issues, I'll drop to 2.0 and see how I do...