Some Good News...

[Luce]

I had another clinic appt yesterday and 10 months after being diagnosed I finally got to see the consultant who diagnosed me in the first place.

I have to say all my doubts about not seeing a rheumatologist and being under the renal clinic have been resolved. I had a great chat with this guy and it seems most of his patients have WG and he gained most of his experience while working under the infamous (in the UK at least) Dr David Jayne. He is extremly proactive, is very much for Rituximab being the way forward and seems willing to help me much more than any of his other staff.

We've cut my pred back to 5mg from 7.5mg - a move no one else was brave enough to take and I no longer have to take the bactrim which is great because of all the side effects I was taking.

We also addressed the issue of starting a family, which apparently is not advisable while taking Cellcept due to the potential damage on the foetus. He also told me I will be on Cellcept for at least 5 years and during this time the effects of their cyclo may take its toll and lead to an early menopause. He suggested I should start trying to start a family ASAP (after the wedding in April) so as not to miss my window of opportunity, and to do this he may be able to secure funding for one dose of Rituximab to give me 6 months to get pregnant. I don't qualify for a full treatment of Rituximab as I'm far too well but one dose would get me off the Cellcept for long enough to give me a chance of having a baby.
The only problem is we're in a one bedroom flat and haven't entirely decided whether we want kids, but on the other hand don't want to pass up the only chance we may have. So much to think about!

My PR3 is down to 10 which is fab, kidney function is excellent and all the nodules on my lungs have completely healed.

I'm not going back to clinic for 4 months but the consultant gave me his mobile number and told me to call the minute I feel unwell.

I am totally amazed that someone has stuck their neck out so much for me, but at the same slightly annoyed that none of this information has reached me in the last 10 months and that the rest of his staff aren't really qualified to be making decisions regarding my treatment.

When I asked if I could see my Nan, his response was that he couldnt stop me but why would I take that risk? It's not only her I'd be exposing myself to but an entire ward full of sick people, why would you subject yourself to that?

I completely agree and love his frankness!!

Feeling much happier about everything and glad to finally have some answers and direction

Luce
XxX

[Jack]

Sounds like things are going pretty well for you Luce.
I'm surprised that the communication between members of the medical team is so poor. My own have regular meetings to discuss patient's treatment and the more junior ones regularly make phone calls or go away to consult "the boss" during my appointments.

[crackers]

nice one luce.so pleased for you.
john.

[Sangye]

Great news, Luce!

Have you considered having your eggs frozen for future use? It's very common under these conditions, especially since you're not sure if you want kids just yet.

[AshleySparklez]

That's really good to hear!
Wow.. 5mg of prednisone? were you ever on a higher dose? my best friend is on 50mg right now... damn, that's a lot!

[Doug]

Wow! Luce, best wishes, best of luck no matter what you, your rabbit, and Mr.-to-be decide. Sangye's suggestion is interesting, and UK was where the procedure was developed, what? 30 years ago with Louise Brown, I think her name is. Doesn't it feel good when you have confidence in your doctors?