Hi From Oz

[Birdie]

So with treatment how quickly do you typically see an improvement in signs and symptoms. My sinuses are the main offender?

Really high dose of prednisone starts working in hours, really high dose (80 mg), not the 25 mg you've been on. At 80 mg I felt 30 years younger in a few hours, with most of the bothersome Wegener's symptoms nearly gone. But... that is extremely misleading.

High dose of prednisone pumps up your metabolism so it can handle the other meds and repair damage much faster. Eat a lot, watch your weight. Weight gain is better than weight loss at that point. Within a week you start to crash from the strain, it's down hill from there until reducing the dose.

The treatment is better than the other option...

[Mark76]

Indeed...really makes you think about life and what's important hey...hoping with treatment prognosis is good...i keep seeing statistics of 80 to 90%. What happend to the 10 to 20%? 😢

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[Birdie]

seeing statistics of 80 to 90%. What happend to the 10 to 20%?

Many were not diagnosed in time, while many more would be far better off if diagnosed sooner... hence the broken record...

[annekat]

Most of us that I've read of on here started at more like 50-60mg pred a day along with whatever immunosuppressant like CTX or MTX. I didn't notice quite so dramatic an improvement right away, but did start eating like there was no tomorrow, which was a good sign! I had lung involvement as well as the sinus stuff, and I felt a quicker improvement in the lung stuff. But then I'd had sinus stuff dragging on for a couple of years before my diagnosis, so it had become more established and permanent damage had already been done. The lung stuff came on within a month or two of dx, so maybe wasn't as far progressed. I can only speculate. I have read of others on here whose sinus stuff tended to drag on and on after they otherwise felt pretty well recovered. I'd say I was one of those, but now, 5 years later, I have very little sinus stuff, since my sinuses were pretty well eradicated by bone erosion. It's not as bad as it sounds.... I'm now no longer subject to sinus infections because the places for mucus to collect and fester are pretty much gone. I'm hoping you are one of those for whom it was caught early (I'd have to leave this page to look back), with little damage done, and who will bounce back very quickly with maybe a stronger dose of pred and your immunosuppressant. True, 25mg. isn't very much to start with, but I haven't looked back at your whole history. I did read it all originally, but have forgotten the details!

[mishb]

30mg pred was the highest that I was ever on, but I was taking some Mobic tablets prior to then.
However this dose was good enough to stop those massive garden slugs from forming in my sinus and making their way out into the world.
Another however, this then dried those slimy slugs up, and turned them into hard crusts that then couldn't be dislodged.
Not sure which I prefer
Pain and slugs were gone within 2-3 days, and life felt great.

All the best for your biopsy Mark. Hopefully it gets some answers

[Mark76]

Interested to know how many on here have had relapses abd if so was treatment as long and severe as first. Do many have more than one relapse?

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[annekat]

Interested to know how many on here have had relapses abd if so was treatment as long and severe as first. Do many have more than one relapse?

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I have had a couple of what I'd call moderate flares, which were less severe than my original onset at dx, and I might be more likely to call them relapses if I'd ever actually been declared in remission and/or these were close to the same severity as my original event. But flares are serious, too, they are more than just a couple of a days of not feeling so hot, they should show up in the bloodwork as increased inflammation level and there will be some of the classic signs like night sweats, fevers, extra fatigue, blood in mucus. Mine have usually lasted a few weeks and required an adjustment or change in meds to get over them. But I could still go on with my life, no hospital stays or anything. I think my first one was a result of being undermedicated in the first place, and my MTX was increased to a more therapeutic level. The second one was lighter, more from me just being run down, stressed, and maybe having tapered pred a little fast. So the pred was increased and I'm still in the process of tapering down from that one. Trying to taper or get off the meds , before one is really ready, is a pretty common reason for flares to happen, I think. The terminology is all somewhat subjective, but going through these things makes us very in tune with our bodies and how we are dealing with Wegs, and we become pretty good at distinguishing a flare from a cold or something else..

[Mark76]

Very interesting read....i hope my prognosis is good and live to a rightful age 😢

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[mishb]

Very interesting read....i hope my prognosis is good and live to a rightful age 

There is certainly no reason why you can't, with the correct treatment

[Birdie]

Very interesting read....i hope my prognosis is good and live to a rightful age

It doesn't sound like your case is too bad. Just concentrate on understanding everything so that you can make wise choices, then keep on top of it once it's controlled.