Remission - when?

[Hammy8241]

Firstly, how long have you been blessed with WG, then how long after diagnosis before you achieved your first remission (if ever). This can be with or without meds.
Just being nosey?

[Jack]

Oops - I missed part II so you need to add one more to the 3-5 years to remission.

[Hammy8241]

(19 replies) So if the trend continues does it mean that unless you get into remission within the first 12 months it ‘s going to be a long haul?

[elephant]

NO Hammy, I think that the Medical treatment wasn't the right one( RTX vs Cytoxan) for that particular person. Was it a WG specialist that treated you or a local Rhuemy? Which one got you in remission?

[Sangye]

I agree with Elephant. I didn't get into remission for 4 years mainly because I didn't have a Wegs specialist for the first 2.5 years. After that there were other reasons, including that my active Wegs is very sneaky and passed under Dr Seo's radar.

[Hammy8241]

Agreed the fact that we all respond differently to both the Wg & the meds has to be a factor in remission prevention along side the ability of the Dr to either identify wg or prescribe the best treatment for you. This is all part of the **** that life throws at you but, if, circa 40% achieved remission in under 12 months then that leaves 60% who, for what ever reason did not!

As wg becomes more known, early diagnosis may help people get treatment quicker (and thus into remission quickly?). This poll lacks depth to give any hard interpretations. We will all have our own views on what it shows (if anything:smile1:!)

As I am arriving at my 1st anniversary I just wondered if my expectations for remission were realistic or not.


Not there yet and seem to have stalled at 12.5mg pred. Had a bug or two which have knocked me off track and have tried reduction twice but have had to go back up again. More patience I think!

[Sangye]

Hammy, I wouldn't use a sample size of 23 Weggies to establish statistics about remission rates.

I sure understand about the 1-year anniversary thing. When I was dx'ed I didn't have any contact with other Weggies or info from the internet. I only knew what my (non Wegs specialist) docs told me, which was "Ctx and pred for 1 year and you're done." I knew it wasn't curable, but they led me to believe that flares were unlikely if that initial treatment schedule was followed to the tee. So I had a horrible time when Mayo AZ then told me "Cellcept for at least 2 years." :glare:

Hang in there. I think you're not far from remission.

[Jack]

A high proportion of the sample have not had Wegener's for a year yet so the remission time of Never may be fairly meaningless. Perhaps in a years time, most of these will be in the 1-2 years to remission section.

[JanW]

Yes, the statistic that is common on internet sites which says something like -- 50 percent of patients will not experience a flare/relapse should be banished. Researchers now know that relapses are not uncommon and according to what I heard at the Symposium, more than 80 percent of patients will have at least one. The bast majority of patients achieve remission though, which is the good news in that statement.

[stikker]

I'd also like to know " How long unill you relapse?. "
I have relapsed within 1 year of treatment and I think it is a bad sign
stikker

[JanW]

I don't know that anyone knows the answer to that question, stikker.

[Jack]

I had multiple bouts of relapse for the first 4 years until I started taking Myfortic and then nothing for 20 years so I put a lot of it down to finding the right medication for your particular case. Or perhaps it was just coincidence.