Don't stop researching

[annekat]

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...

Makes sense, Pete... So far I'm just focusing on the pred, too, but have a ways to go to keep up with you! The doc once mentioned cutting back on the MTX but hasn't for a long time. I'd be better off changing docs than going along with that, I think, since I'm at 15mg. and I trust you are right that it is considered the minimum effective dose.

[pwc51]

On my consultant's insistence, and despite my protestations, I am dropping from 5mg pred to zero in 2 weeks! So far it has not been as bad as I expected - I did have to stop for a couple of days early on but then picked up again so I think it will nearer 3 weeks before I am off it! I hope it sticks ....!

[drz]

On my consultant's insistence, and despite my protestations, I am dropping from 5mg pred to zero in 2 weeks! So far it has not been as bad as I expected - I did have to stop for a couple of days early on but then picked up again so I think it will nearer 3 weeks before I am off it! I hope it sticks ....!

Sounds like a quick drop. Hope it goes well for you. Might be rough for a few days i guess?

My Weg experts choose to keep me on 5 mg since they said that dosage shouldn't do much harm and it may help prevent relapse or make them milder.

[pwc51]

Thank you drz - had wanted to follow your example for the same reasons but was overruled! At the Vasculitis Symposium that past weekend the consensus was that the jury is currently out as to whether low dose pred is better than zero pred, or not. The research continues!

[drz]

Thank you drz - had wanted to follow your example for the same reasons but was overruled! At the Vasculitis Symposium that past weekend the consensus was that the jury is currently out as to whether low dose pred is better than zero pred, or not. The research continues!

I am also on 175 mg of AZA but my doctors keep saying since you are doing so well after your miraculous survival and recovery, lets not change anything yet. I agree too since they have also told me they doubt i would survive a serious flare with symptoms like I had when first diagnosed because of the damage to my lungs and kidneys I got during my initial treatment.

The research seems pretty clear that most people (80%) relapse within a couple years once they stop taking their maintenance drugs. For me those odds are too risky. I would consider the pred as part of the maintenance drugs but I know there is more research going on and maybe the pred isn't the important part. If they find out it isn't important to prevent relapse i would be willing to give it up if the Mayo Clinic recommends it.

[Alysia]

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.

Thanks Anne. I hope that you don't have Bronchiactesis and I think that you don't have it.
having it means a great daily effort to clean the airways. lots of coughing. lots of mucous (green, yellow, sometimes bloody), shortness of breath. Phil was also vommitting because of the coughing. another symptom of Bronchiacthesis is lost of weight. he became so skinny (although handsome) in his last months.
as for the flutter valve and another device that he got in the respiratory therapy that we went to on Thursday before the Sunday of his going to the ER: the therapist gave him acapela device. after he used it on Sunday morning, he got the sharp pain in the chest and asked me to take him to the hospital.
we asked many times but didn't get clear answer if the acapela device was responsible for the collapsed lung. the lung was already collapsing a bit before that day but we wondered if the device caused it to collapse more. those devices are working by inflating the lungs. I seriously think that there might be a risk using those devices and if you ask me I would suggest to use them carefully if ever. maybe to use them only after your lungs are being checked carefully to see that no harm can be caused by them. to see that the lung can endure that effort. it is an effort. Phil's lungs were too sick for that. the therapist made fatal mistake by giving it to him without checking enough. maybe because that he didn't look sick....

bottom line: my opinion, from what I went through with my Phil: don't use flater valve or acapella device or devices like that, without checking that your lungs are strong enough to endure the inflating, the pressure made on them.

[Alysia]

On my consultant's insistence, and despite my protestations, I am dropping from 5mg pred to zero in 2 weeks! So far it has not been as bad as I expected - I did have to stop for a couple of days early on but then picked up again so I think it will nearer 3 weeks before I am off it! I hope it sticks ....!

sounds dangerous to me. too fast for sure.
I believe that Phil's new wg doc did fatal mistake when she told him just like that to be off pred. I think that he was smoldering without pred.
smoldering is not less dangerous then flaring. even more sometimes because it is hard to detect and it can cause damages, serious enough. my smoldering made my saddle nose. I think that Phil's smoldering made holes in his lungs.
you can still argue with your doc. YOU are your best doc at the end of the day. good luck and update us how it goes.

[annekat]

Great advice, Alysia, thanks! I think you are right that I don't have bronchiectasis at this point, and maybe I never will. I do think that my doc, a pulmonologist, doesn't take my issues seriously enough because they usually don't happen that much in his office and my breathing function tests come out OK even though I always cough on the exhale. And he doesn't think I can have asthma or other allergy issues because of the meds I'm taking for Wegs, which should suppress it, according to him. My breathing and coughing issues get worse at night, or later in the day, and a few nights ago, I had a really hard time and nothing I coughed up was enough to give relief. At the same time, I had a fever and a swollen lymph gland on one side, which would indicate an infection or Wegs flare, and not asthma. So I took some extra pred, got extra rest, and drank lots of fluids the next day and everything calmed down. Now my coughs are productive again, there's no fever, the lymph swelling went down. If I still had those problems to that extent, I would see the doc. I only know, besides the brief signs of infection, that the pollen counts in my area were extra high that day and I'd gone into town that evening for a meeting, where more of the currently offending trees are, and the problems started when I got home. So there is an element of mystery about it and it could be a combination of things, I guess. Thanks again for your input, and I won't go out of my way to get a flutter valve unless some doc thinks I should try it and my lungs are strong enough. Right now, I don't feel the need. BTW, pollen counts are very low here today.... I didn't even get an email about them from www.pollen.com, which I only do if they are medium to high.

[Alysia]

Great advice, Alysia, thanks! I think you are right that I don't have bronchiectasis at this point, and maybe I never will. I do think that my doc, a pulmonologist, doesn't take my issues seriously enough because they usually don't happen that much in his office and my breathing function tests come out OK even though I always cough on the exhale. And he doesn't think I can have asthma or other allergy issues because of the meds I'm taking for Wegs, which should suppress it, according to him. My breathing and coughing issues get worse at night, or later in the day, and a few nights ago, I had a really hard time and nothing I coughed up was enough to give relief. At the same time, I had a fever and a swollen lymph gland on one side, which would indicate an infection or Wegs flare, and not asthma. So I took some extra pred, got extra rest, and drank lots of fluids the next day and everything calmed down. Now my coughs are productive again, there's no fever, the lymph swelling went down. If I still had those problems to that extent, I would see the doc. I only know, besides the brief signs of infection, that the pollen counts in my area were extra high that day and I'd gone into town that evening for a meeting, where more of the currently offending trees are, and the problems started when I got home. So there is an element of mystery about it and it could be a combination of things, I guess. Thanks again for your input, and I won't go out of my way to get a flutter valve unless some doc thinks I should try it and my lungs are strong enough. Right now, I don't feel the need. BTW, pollen counts are very low here today.... I didn't even get an email about them from www.pollen.com, which I only do if they are medium to high.

Thanks God you are feeling better Anne. you only tell us AFTER and not during.... I wish I could live near, I would come to take care of you...
please update us how you are doing. I hope that whatever it was, it is over.
sending lots of love and hugs to you. take care.

[annekat]

Thanks God you are feeling better Anne. you only tell us AFTER and not during.... I wish I could live near, I would come to take care of you...
please update us how you are doing. I hope that whatever it was, it is over.
sending lots of love and hugs to you. take care.

Thanks, Alysia. I'm keeping an eye on it. It happened so quick and was over so quick, it was weird. Not food poisoning or anything like that, because there were no stomach issues. I'm pretty much back to normal but could still be smoldering if it was a flare, so am keeping the pred level up a bit. My doc gave me permission to do that. BTW, I was wrong about the pollen counts, they are high today, but the weather is cloudy and a little damp, which will help. Mulberry trees are the worst offenders here currently, and they are mostly in town and not in my neighborhood. I see from the pollen site I referenced above that pollen levels are high all over the US right now, which is not too surprising. They say tomorrow the levels here will be much lower. Anyway, thanks again for your good thoughts and advice. I, too, wish we lived near each other.... that would be so cool.