One year on

[Col 23]

Hi all, havent posted for a while. One year anniversary of WGs ( 23.12.2009 Diagnosed)has just past. Do I feel better yes and no. Finally got down from beginning with 80mg Pred to 7mg of Pred early Dec but overdid it with a bit of travel and had an ambulance ride which resulted in being advised to go to 20mg of Pred. Ignored this and went to 15 for two days and then 10 then 9. Still having minor relapses, feet hurt, legs hurt inalility to walk long distance. After contact with Rhemy a week later she advised to stay on 10 until next appointment middle of Jan 2011. I had to push it and stayed on 9, just felt more comfortable knowing I was still below 10. Down to 20mg of Methotrexate from 25mg iniatially. Still sleeping heaps, lot of excessive sweating when doing any sort of minor physical activity. Weight gain has been about 16kgs since diagnosed (not happy about this), tried to do a few things but inablility to commit due to bad and good days. Basically continued to have general aches and pains, swollen knees ankles, minor eye flare ups, leg pain and foot pain. I was told I was in medicated remission but bloods show inflammation again so appears we are never out of the woods. Even while advised was in medication remission, I couldnt walk (temp doc while my rheumy was away), think that says it all. Resigned from work as no way I could continue. I tell everyone Im just a spontaneous woman as cant always committ to events.
Well I hope this sees everyone improve this new year and I wish everyone the best. cheers Col 23

[JanW]

Hi, Col. I will have my one-year anniversary next week as a matter of fact.

I'm not sure why they are saying that you are in a medicated remission other than the fact that the bloodwork seems normal -- you certainly seem to have symptoms that are a bit above the norm, even if you accept (which I don't necessarily) that having WG is incompatible with good health and feeling very well most of the time.

Have you taken drugs other than mtx? And certainly, if the bloods show inflammation again the first thing that my doc would do would be to boost the main driver (that is, whatever you are taking besides pred).

Hope you get some answers from your rheumy.

[Jack]

I'm confused by the description too. You seem to still have what appear to be Wegener's symptoms, an abnormal blood test result and a requirement for medication so there looks like a lot of room for improvement yet. Also, if you don't trust the drug recommendations of your doctor, I think you should be looking for a new one who you can have some faith in. Perhaps Methotrexate is not the drug for you and an alternative may give better results.

[elephant]

Hi Col, so sorry you have WG symptoms going on. I agree with Jack and Jan. You are showing signs of very active WG and it could be silently getting into your lungs/kidneys. You need a different doc who really understands WG.

[Sangye]

Yup, I agree. That's exactly how I was when I was on Cellcept and no pred. I had active disease and no one believed it.