What the Prof told me (RTX)

[freakyschizogirl]

Hi guys

I did say I'd pass on news from what Dr Jayne told me at Addenbrookes on my last visit, well, here it is!!

Basically he told me they did a study on the effectiveness of RTX in reducing flares.

After 1 course (one infusion) 50% flared in the first year
After 5 courses 20% flare within 2 years

75% flared in 4 years after RTX
25% flared in 3 years after RTX

He also said some people did have an annual top up but it depends on how quickly you flare after finishing RTX.


I did ask what the long term implications were on my future health after taking RTX, he said at the moment they just didn't know. RTX seems effective at treating Wegs and reducing flares without the nasty side effects of other treatments. But as for long term potential problems it still to early to know.

He did say they had found some people were resistant to RTX and some had some side effects but if you get through the first few infusions without any problems then RTX can be used to treat Wegs in the future.


I hope this is helpful and welcome news for most of you, if definitely made me feel better knowing I hadn't spent all those hours being infused for nothing! He did say to me that as a sinus Weggie I was more likely to flare in the 2 year period but looking after my nose and controlling stress were key to reducing the risk.

If anyone has any questions feel free to ask :thumbup:

[Geoff]

Nice one Sam,

The Prof is very good value and I am sure he loves to get a "grilling" from you with a great list of questions!

Did he actually come out and say there was a correlation with stress and flaring?

[freakyschizogirl]

Not in as many words but I don't think it helps

[pwc51]

Hi Sam - what great feedback. I am very happy with my consultant but would love to meet David Jayne to discuss my case just to make sure we are not missing a trick. With this condition I don't believe you can gather too many views, particulalry from one of the best in the business!
Peter

[mishb]

Hi guys


I did ask what the long term implications were on my future health after taking RTX, he said at the moment they just didn't know. RTX seems effective at treating Wegs and reducing flares without the nasty side effects of other treatments. But as for long term potential problems it still to early to know.


If anyone has any questions feel free to ask :thumbup:


So, is he saying that some where in the future - 5 years, 10 years, 20 years - you may grow an extra lung or possibly another nose, or even be sicker than you started ........ because they are not sure what the long term side effects are as yet??
This is the bit that scares me about RTX - however, if it was offered to me as a last resort, I wouldn't hesitate - it has already been proven that it is helping keep the disease under control ........and if it wasn't, I wouldn't have made it to the 5,10 or 20 year mark anyway.

Just remember this post in 20 years time people, when you all have extra noses to pick :flapper:

Sam, I'm glad you had a good visit with Dr Jayne.

[pberggren1]

I wouldn't mind an extra lung......:flapper:

[annekat]

I noticed what you said about the stress, too, and thought, how refreshing for a doctor to say or imply that. I have absolutely no doubt that stress is a factor in flaring and day to day living with the disease. I don't know why doctors are so resistant to that idea, and I'm sure it follows with all other AI diseases and other afflictions, as well. Now I'm wondering, with all the discussion about diet on other threads, if that is also an area they should be paying more attention to.

[Debbie C]

He said if you get thru the first few infusions with no problems ,then your o.k. for use in the future. That's a scary thought...what if you don't get thru the first infusion:huh: OOOPPPSS !!!!

[drz]

My Weg expert says they think that like most cancer type drugs the drugs tend to become less effective for a person after they are used a lot. In other words the max benefit will be in the first few times it is used but for some it seems to be the only treatment option even if it ends up requiring a lot administrations to get the same results.

[freakyschizogirl]

So, is he saying that some where in the future - 5 years, 10 years, 20 years - you may grow an extra lung or possibly another nose, or even be sicker than you started ........ because they are not sure what the long term side effects are as yet??
This is the bit that scares me about RTX - however, if it was offered to me as a last resort, I wouldn't hesitate - it has already been proven that it is helping keep the disease under control ........and if it wasn't, I wouldn't have made it to the 5,10 or 20 year mark anyway.

Just remember this post in 20 years time people, when you all have extra noses to pick :flapper:

Sam, I'm glad you had a good visit with Dr Jayne.

Hi Mishb! He didn't say that you could grow new organs but it would be one hell of a side effect!! Woulda made my nose surgery a lot easier! :flapper:
It does worry me cos most wonder drugs turn out not to be so wonderful in the years to come but time will really tell on that score.

[freakyschizogirl]

I noticed what you said about the stress, too, and thought, how refreshing for a doctor to say or imply that. I have absolutely no doubt that stress is a factor in flaring and day to day living with the disease. I don't know why doctors are so resistant to that idea, and I'm sure it follows with all other AI diseases and other afflictions, as well. Now I'm wondering, with all the discussion about diet on other threads, if that is also an area they should be paying more attention to.

Hi Annekat, With all the stress I've had this year its a wonder I haven't flared! I'm thanking RTX for that.
Dr Jayne really is a wonderful guy, he's not one of those docs who will tell you to lose weight, he'd rather you be Wegs free in remission before discussing weight loss.
Again I think Dr Jayne would say tht a healthy diet would help but who really knows, we're all so individual, what works for one wont necessarily work for the other.

[annekat]

Yeah I'm sure they would all say we should eat healthy, get exercise, etc., but I suspect most would reject the idea of a direct connection between AI diseases and stress or the notion that certain dietary things a lot of us eat, such as gluten, could actually cause AI diseases or that eliminating them could help. And the reasons for the problem, such as the leaky gut syndrome. I'm not actually advocating these ideas since I don't practice them, as yet, but am more open minded about them than I suspect most docs would be. They'd likely just dismiss them out of hand, even though there may turn out to be truth to them. I should think they'd be more willing to consider new ideas, since we don't know exactly what causes AI diseases. I'm not saying Dr. Jayne is that way, he sounds great, and I'm sure there are others who are more open minded. It's good he doesn't lecture you about weight and stuff, but just focuses on getting you well and keeping you that way.

[annekat]

Hi Mishb! He didn't say that you could grow new organs but it would be one hell of a side effect!! Woulda made my nose surgery a lot easier! :flapper:
It does worry me cos most wonder drugs turn out not to be so wonderful in the years to come but time will really tell on that score. I'd sure love to be able to grow a new septum complete with properly attached cartilage! Your new nose is a great improvement, though. I'm glad you were able to get that done.

[pwc51]

It does worry me cos most wonder drugs turn out not to be so wonderful in the years to come but time will really tell on that score.

I am working on the principle that something that works (and for me it seems to be the only thing that does) and keeps me alive is better than something that has no side effects and does not work either!!!

[mishb]

Hi Mishb! He didn't say that you could grow new organs but it would be one hell of a side effect!! Woulda made my nose surgery a lot easier! :flapper:
It does worry me cos most wonder drugs turn out not to be so wonderful in the years to come but time will really tell on that score.


I know he didn't say it could grow new organs - but they never said things like that for Agent Orange either......or even Asbestos.
Who knew, down the track, what these two things would actually end up doing :sad: and please, I'm not saying that this is the case at all, it's just what came into my head when Dr Jayne said that they don't know what the long term effects will be.

I'm Sorry, new organ growth for Weggies, just sounded like a much better alternative.

Anne, I would also jump at having RTX if it fixed the septum in my nose, as well.......and how cool would it be to have interchangeable noses Sam, so that you never even had to have the surgery. Saddle noses would be a thing of the past.

Sorry, getting carried away now, might need to put a Putin in here :flapper::razz:

[annekat]

Michelle, at the risk of being Putined, I have thought of prosthetic "clip-on" nose bridges that would fit right over our damaged ones and while hard to hide, would at least provide a better looking profile.... they could be inexpensive and might be able to blend in a little at the edges and be custom colored, more or less. I did some research once and think things like this exist but they are of course expensive.... Then, there are the make-up techniques in the movie industry that have given people special noses for a part... if only we lived in a movie studio. Fantasy land. I know I talk about my saddle nose too much and you barely talk about yours..... it's not that bad and could be a lot worse, for sure.

[Alysia]

Michelle, at the risk of being Putined, I have thought of prosthetic "clip-on" nose bridges that would fit right over our damaged ones and while hard to hide, would at least provide a better looking profile.... they could be inexpensive and might be able to blend in a little at the edges and be custom colored, more or less. I did some research once and think things like this exist but they are of course expensive.... Then, there are the make-up techniques in the movie industry that have given people special noses for a part... if only we lived in a movie studio. Fantasy land. I know I talk about my saddle nose too much and you barely talk about yours..... it's not that bad and could be a lot worse, for sure.

Anne, your ideas are so lovely :thumbsup:
saddle nose is a painful issue :crying:
it is a kind of "stamp" on us: "weggie"
and now:

:back on topic:

[freakyschizogirl]

Uh oh, someone got Putin'd!! Did anyone see in the news a few weeks ago...I think it was a Chinese man who had a new nose grown on his forehead after he's been in a horrible accident?? I don't think I could walk around with a nose on my forehead - very brave man!!

[annekat]

Uh oh, someone got Putin'd!! Did anyone see in the news a few weeks ago...I think it was a Chinese man who had a new nose grown on his forehead after he's been in a horrible accident?? I don't think I could walk around with a nose on my forehead - very brave man!! Wow, no, did not see that. Too bizarre! I guess we are lucky just to have saddle noses.

[drz]

Uh oh, someone got Putin'd!! Did anyone see in the news a few weeks ago...I think it was a Chinese man who had a new nose grown on his forehead after he's been in a horrible accident?? I don't think I could walk around with a nose on my forehead - very brave man!!

Will they transplant it to his usual location or was it rewired or re plumbed to be functional in that location. I would expect to see some thing like that at Mayo when i am walking around there. It is amazing the amount of disfigurement a person can have and still seem OK physically. I have seen people with no faces, no lower jaw, no ears, plus the usual missing limbs that are very common.

[freakyschizogirl]

Its going to be put in the usual location, I think the idea of growing it on his face was quite pioneering and less chance of rejection as its his own tissue. I'm just wondering if when he sneezes...does it come outta both noses??

[annekat]

On a whim, I looked this up and here is the pic of nose on forehead. Don't Putin me, because this is Sam's thread and she's joining in this part of the discussion!

Why Does This Man Have a Nose on His Forehead? (http://news.nationalgeographic.com/news/2013/09/130928-nose-forehead-ear-arm-reconstructive-surgery-medical-science/)

[pberggren1]

I wouldn't have to irrigate 2 noses........:flapper:

[annekat]

That nose on his forehead is at a jaunty angle! But seems it would be hard to irrigate and to keep water from getting into it, say, when taking a shower or walking in the rain! Weirder than weird can be.

[drz]

On a whim, I looked this up and here is the pic of nose on forehead. Don't Putin me, because this is Sam's thread and she's joining in this part of the discussion!

Why Does This Man Have a Nose on His Forehead? (http://news.nationalgeographic.com/news/2013/09/130928-nose-forehead-ear-arm-reconstructive-surgery-medical-science/)

This seems like a better way than a lot of reconstructive surgery to replace damaged body parts. Hope they get better at it so it becomes more available. It seems like these type of medical advances are now more likely to come from China than the USA in the future.