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Luce
08-27-2009, 04:48 AM
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
08-27-2009, 05:12 AM
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
08-27-2009, 05:52 AM
nice one luce.so pleased for you.
john.

Sangye
08-27-2009, 10:16 AM
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
08-27-2009, 02:07 PM
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
08-27-2009, 02:15 PM
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?:)

jola57
08-27-2009, 03:33 PM
So pleased for you Luce, this is great news. I hope you both make your decision based on both you and your future child's needs. Children are such a joy and I can't imagine my life without them, but it is a life long comitment especially in the beginning. If you do decide this would be the time to have them.

Luce
08-27-2009, 05:29 PM
Thank you all for your kind words and support - it feels great to have some confidence in my doctors and I understand the reason behind some of their decisions now.

Ashley I started on 60mg of pred, got down to 10mg when I had a flare and have worked my way back from 30mg to 5mg. 5mg is usually a maintenance dose so I will still be taking pred for some time yet but the nasty side effects start to slip away when you get to such low doses.

Regarding freezing eggs, my particular Primary Care Trust's policy is to only freeze already fertilized eggs rather than unfertilized ones. That doesn't sit too well with myself or my partner because should we decide not to use the fertilized eggs, then we are effectively throwing away an already-made life.

Gary
08-27-2009, 07:11 PM
Glad to hear you are doing better!:D

Sangye
08-27-2009, 11:37 PM
Ashley, I started at 1,000 mg/ day pred. That's the highest it goes.

Jack
08-28-2009, 02:00 AM
Me too. Scary numbers eh? :eek:

Along with the I.V. Cyclophosphamide I probably had very little immune system left, but it stopped the disease dead in its tracks. :)

Luce
08-28-2009, 05:15 AM
I had some IV pred when I was admitted too, I guess that could have been 1,000mg although I'm not sure.

Doug
08-28-2009, 04:24 PM
Thank you all for your kind words and support - it feels great to have some confidence in my doctors and I understand the reason behind some of their decisions now.

Ashley I started on 60mg of pred, got down to 10mg when I had a flare and have worked my way back from 30mg to 5mg. 5mg is usually a maintenance dose so I will still be taking pred for some time yet but the nasty side effects start to slip away when you get to such low doses.

Regarding freezing eggs, my particular Primary Care Trust's policy is to only freeze already fertilized eggs rather than unfertilized ones. That doesn't sit too well with myself or my partner because should we decide not to use the fertilized eggs, then we are effectively throwing away an already-made life.

Precisely. I don't intend to start a discussion on that topic, but I do want you to know I agree with you on that point.

Cindy M
08-28-2009, 04:43 PM
That's great news Luce, I hope the Rituximab works, I had my first IV treatment on August 6th and then my second on the 20th of August. I am hoping that it works, I am currently on 80 mg of preds and 125 mg of cyclo.

Luce
08-28-2009, 06:03 PM
Thanks for your support Doug - I can tell you that our religious views are at complete ends of the scale, however I think ethically we can be very similar at times.

I just don't feel its right to take a fertilized egg, leave it in a freezer for a couple of years waiting to start its life - only for us to decide we don't want it anymore and for it to end up poured down the sink.

BIG decision to be made here - I have my mother who is so desperate for grandchildren I'd advise you to keep your baby away from her for fear of her running off with it, and myself and my partner who have only been living together a couple of years and are enjoying the time we spend by ourselves.

I'm sure we will come to a decision, I just don't want to rush it (it doesn't help that kids still irritate us at the moment).

Sangye
08-28-2009, 10:30 PM
(I have to admit I did get a chuckle over the image of your mom running off with someone else's kids....)

I can't imagine how difficult it must be to face decisions like this, especially with Wegs going on! All I can suggest is to stay in the moment, never make any decision out of fear or trying to please others, and never talk yourself into doing something. That's my advice for most big decisions, not just for kids. You'll never regret your decisions that way.

When things get cloudy regarding a decision, I have this little test I do. I relax and picture each option. I choose the option that makes me feel that "Birthdays as a kid" kind of feeling-- kind of giddy, giggly anticipation. It doesn't work if you're trying to decide between two necessary but awful things-- like ctx or mtx! But I bet it'll work for this.

coffeelover
08-29-2009, 05:14 AM
[QUOTE=Sangye;5134 never make any decision out of fear or trying to please others, and never talk yourself into doing something.

Great advice Sangye! We all learn that too late sometimes!
coffeelover

Doug
08-29-2009, 04:50 PM
Thanks for your support Doug - I can tell you that our religious views are at complete ends of the scale, however I think ethically we can be very similar at times.

The decision you make is so personal that I don't think anyone else needs be involved in it, no matter what they believe. :)

Sangye
08-30-2009, 12:11 AM
Very well put, Doug. :)

Luce
08-30-2009, 01:34 AM
Thank you, I need a long hard think about this by myself and I really appreciate that no one has tried to force a decision one way or the other.

I'll let you all know when we've made a firm choice of course :)

Jack
08-30-2009, 03:17 AM
Just to add my 2 penny worth -

I realise there is a whole different aspect to child birth for women, but I am not the biological father of either of my daughters and I could not love them more. One is the result of A.I.D. and the other adopted.

There are always other avenues open. :)

Luce
08-30-2009, 03:49 AM
Thanks Jack, I think it's fantastic that you have no regrets and I realise there are other options but if at all possible I would like to have a mini-me running around someday.
I think adoption is a marvelous thing because there are children who require a loving family and couples who desperately need children in their lives.

We will definitely consider it further down the line if our attempts for a child of our own fail, and it's good to know that having medical issues wouldn't stop an adoption agency from deeming you suitable as a parent.

Jack
08-30-2009, 05:04 AM
it's good to know that having medical issues wouldn't stop an adoption agency from deeming you suitable as a parent.
One of the advantages of looking well even though you are sick. I just waved it away as inconsequential at the interviews. ;)

Doug
08-30-2009, 06:08 AM
One of the advantages of looking well even though you are sick. I just waved it away as inconsequential at the interviews. ;)

(I wondered if you were a scoundrel, Jack! Ha!):)

Sangye
08-30-2009, 06:10 AM
I think having a disease like Wegs just brings out the, uh.... "creativity" in each of us. :D