New drug study in the Netherlands: Supresses inflammation without impairing immunity

[vdub]

It would be really neat to run by the company and be able to talk to someone about it. A single broad-based product with fewer side-effects would be real nice. I also notice that juvenile diabetes melitus was on the list. My son has that.

[Geoff]

THese articles are very uplifting and give me huge confidence that a possible cure/treatment is going to be announced before too long. Great thread and many thanks to all the contributers!

[annekat]

I love this! If they do a clinical trial on WG patients, sign me up! Too bad these things take so long to come into general use. Meanwhile, maybe we should all move to the Caribbean and start harvesting sea anemones!

[me2]

Will be interested to see what your doc has to say.

I saw my Rheumatologist yesterday.
At the end of my appointment I asked my doc if he had heard of dalazatide. He said no. I said it was a new drug being developed. I asked if he knew
Dr Anne Stevens. He looked a little surprised and said "yes".

I said she was involved with the company developing the drug. (I found this on the Kineta web site before going to my appointment)

He said "Well, it can't be the same one because I just saw her yesterday here in Seattle"

I said "Well, I think it IS the same one because she is connected to University of Washington Pediatric Rheumatology and I thought you might know her. Its a Seattle company"

He then took the print out I had brought with me and we looked it over briefly and he helped me to understand some of it. He thanked me for bringing the info.
(with sincerity)
He joked that he should think about buying stock in the company. I replied that the thought had occurred to me too.

It was a productive visit. My doctor is a great guy and a great doctor. I am lucky to have him helping me.

But I think the lesson is to not listen to those who tell you to look only to doctors for advice and direction. Under the best of circumstances they may simply not be informed even if it is with a company in their own town and involving people they see on a daily basis. Don't let anyone accuse you of 'doctoring' simply because you are finding your own information, educating yourself and taking action on your own behalf.

A good doctor , a real doctor, a real friend, will tell you what another doctor at the UW told me many years ago when I was using the internet to bring in information to him. He was for a period of time the Dean of the University of Washington Medical School. He has incredible credentials as a real doctor David Chandler Dale M.D. | UW Medicine

He told me that no will care about my health as much as I do. He was trying to encourage me to keep doing what I was doing. His point was , as stated in his bio, that he encouraged me to be responsible for my own health and to see him as an advisor. This is not the old school, antiquated model of medicine where people are discouraged and even attacked by other ill-qualified lay people when they take responsibility for their health.

Don't let doctors or anyone else discourage you from seeking your own answers.

[annekat]

Thanks, Kirk. There is just too much going on in the daily life of even a very good doctor to always be on top of the newest studies and developments. Obviously, Kineta is not directly contacting docs who treat diseases such as ours, because they are a long ways from being able to provide this treatment to everyday patients, if it turns out to be a winner. It is interesting, though, that it was on the mainstream local network news, and I guess your doc was just not watching at the time. I really enjoyed reading about the exchange between you and your doc, and I think he sounds like a really great guy. I like that he won't just shut down a new idea or new info coming from a patient. And the other doc you mention... it sounds like UW in general has some really great ones. I'm impressed.

I agree that we need to keep researching and gathering info on our own behalf, because docs just don't have time, or are too stubborn in some cases, to do it. We still need to be careful out there, as I'm sure there is a lot of misinformation and what some might call 'quackery' that we will run across. It becomes an art to wade through the stuff on the internet, for example, and to learn what sources we can trust the most. Occasionally we will run across sources we are unfamiliar with that may actually be presenting valid information. In those cases, I look for repetition of the same info from other sources, and in the case of studies, look for names of vasculitis experts I've learned about here on the forum. It all can get tricky and we may be misled sometimes, but what else can we do? I think it is just as likely that we will find good information that we haven't seen shared yet.

[renidrag]

My sister, who has had many many more medical problems than I, gave me the best advice. HMO actually means Maintain your own Health. I have followed that advice. Tonight she is in Mass General recovering from a hernia operation along with many other problems.
Dale

[annekat]

My sister, who has had many many more medical problems than I, gave me the best advice. HMO actually means Maintain your own Health. I have followed that advice. Tonight she is in Mass General recovering from a hernia operation along with many other problems.
Dale

That is good advice, and we can't do it without having access to medical information that relates to our particular cases. Some docs I've had seem reluctant to explain things to me, as if it is something I don't need to know or understand, as long as I'm in their care. I don't buy that one bit. So, thanks to places like this forum and the more reputable internet sites, as well as Facebook groups, we have a fighting chance at being able to understand and articulate what is going on with us and can take steps to care for ourselves when the doc isn't around, which is most of the time.

Dale, I hope for a quick recovery for your sister from her surgery, and that she'll successfully be able to manage her other health issues.

[Pete]

My sister, who has had many many more medical problems than I, gave me the best advice. HMO actually means Maintain your own Health. I have followed that advice. Tonight she is in Mass General recovering from a hernia operation along with many other problems.
Dale

Hoping she recovers quickly and overcomes the other issues.

[me2]

Dale,
I hope your sister does well. I had hernia surgery a few years ago and it was a little more painful and longer recovery than I was lead to believe. Plus, no one told me about the horrible side effects of the pain medications. They cause terrible constipation. And since it is muscles around the stomach it becomes a nightmare without proper preperation.

What I should have done was take large doses of senna (a laxative) and dulcolax (a stool softener) right off the bat before things got bad. I have tried this since then before taking pain killers and it makes all the difference. Being loose is NO big deal compared to being sore from surgery and constipated on top of that.

[CT01]

Hi, I have joined the forum to help a friend suffering from Wegener's. I see that the posts are from April 2015. I am hoping that there has been progress on the mentioned alternate Drug- Dalazatide by now. If anyone has any more information on the drug then please share the same...it will be very big help...Chetna