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shazny
05-14-2009, 10:24 PM
Hi to everyone I'm Shazny and new to this forum. I started being ill in 1993, had my beautiful daughter in August 1998 - still undiagnosed and was finally diagnosed with Wegeners in February 1999 and started immediately on cyclophosphamide infusions - supposed to be 6 over 12 weeks, was told not to get pregnant whilst undergoing chemo and then that ended up lasting 24 doses over almost one year. By the time it finished i was sterile and unfortunately my relationship broke down. I have been in an out of hospital at least 3/4 times each year with various flare ups of the disease and have tried imuran, cyclo, pred, rituximab and am currently on 2gms of mycophenolate daily and 30mg pred. Since starting the pred 9 years ago i have gained over 100lb in weight and been completely off it only 3 times and have flared up bad enough within a week of stopping the pred that i've been admitted every time. I can usually cope very well except when my back pain starts after various scans and an mri they can find no apparent problems or cause for my back problem but it does render me unable to move, walk at all and i need to use a wheelchair. Despite this i manage to work, try and stay positive for my daughter's sake and just get on with life. I am compared to some people very lucky. I am feeling a bit down today as I have just received a letter to say that i have moderate diskaryosis and therefore am awaiting an appointment to have a colposcopy. All in all i think that that's my lot. i look forward to speaking to you all as and when i can. best regards to everyone.

Sangye
05-14-2009, 11:21 PM
Hi Shazny,
Welcome to the group! I'm glad you're here. It's great having people to support you no matter what you're going through, and no matter how you're going through it--calmly, kicking and screaming, angry, sad, hopeful, thankful, whatever. As you know all too well, with Wegs we change moods like socks.

I'm sorry you're have such a hard time getting your Wegs to behave. So much pred-- you must be completely sick of it, and all its side effects. I hope your colposcopy goes well. Take good care.

Jack
05-14-2009, 11:43 PM
Hi Shazny,

Sounds like you're having a hard time getting your Wegs to behave itself! Have they put you back on Cyclophosphamide during your flare ups? That used to be the regime when I was having trouble - Cyclophosphamide, then Azothiapine then Mycophenolate with varying amounts of Pred thrown in.

Please feel free to unload yourself on these pages, we all understand. Also, you're not alone with the sterility and marriage problems. I've been there too and know how much strain long term illness puts on partners - perhaps I'll make it the subject of another thread.

shazny
05-15-2009, 07:14 PM
Thank you so much for your kind words. No they haven't put me back on the cyclo as she thinks i've had too much of it already i've had it another four possibly five times since the initial course and it doesn't seem to work very well. I think its going to be an absolute last resort now. Been to see my own doctor this morning who has reassured me that whilst embarrassing the colposcopy and subsequent treatment will be "pips" as my daughter calls easy things lol compared to what i've had before with various wegs tests and treatments, so feeling a little more positive today.

Sangye
05-15-2009, 07:41 PM
I wish you only pips from here on.

Pips to everyone. :)

shazny
05-15-2009, 09:58 PM
Lol thank you very much!!!

shazny
05-15-2009, 10:13 PM
Lol thank you so very much.

KtheC
05-16-2009, 02:26 AM
Welcome aboard Shazny. I certainly hope things calm down for you a bit. Us weggies are always having some kind of ill-mannered flare up of some kind or another.
There is always some one here for you to chat with
Above all try to stay positive. This is often the most difficult thing to do.

coffeelover
05-16-2009, 12:17 PM
welcome Shazny,

I am glad you found us. Feel free to vent, then vent some more, then as needed vent some more. We all know what you are going through.
Your WEGS sounds like a rollercoaster ride. Lots of ups and downs. The moods go with that. I am glad you have your daughter to keep you focused on other things besides the WEGS. She's going to be a great gal with a strong Mom like you.

Keep on truckin'
Coffeelover Lisa

shazny
05-18-2009, 10:01 PM
Thank you so much for your replies. I am in positive mode today. Been to see my specialist and whilst my weight has now gone from originally 63kgs 10 years ago it is now 111kg!!! thanks to the seroids but she has reduced them today from 30mg daily to 20mg for a week then 15mg for a week then down to 10mg providing my bloods remain okay, so at least that should stop some of the weight creeping on. Also she has suggested some anti tnf drugs (not sure which) but says that they are quite risky but we seem to be running out of options but hey at least whilst i'm well i'm staying positive and its my birthday Wednesday so hoping for a good week all round!!! Thanks again for your kind words.

Jack
05-18-2009, 11:45 PM
That rate of reduction in your steroids is quite fast. Look out for side effects and suggest a slower rate if they get too bad.
Not sure what symptoms others get, but I have joint pain when I change my dose.

Doug
05-19-2009, 03:25 AM
Hi Shazny,

Please feel free to unload yourself on these pages, we all understand. Also, you're not alone with the sterility and marriage problems. I've been there too and know how much strain long term illness puts on partners - perhaps I'll make it the subject of another thread.

Hi from me, too, Shazny! Jack brings up a very good suggestion. While I haven't had the family strains others note, a lot of that is because of when WG hit me and the fact I wasn't trying to raise a family at the time. Several of the newer members have brought up family-related issues (children, spouses), so I bet a link dedicated to this would prove valuable.

jola57
05-19-2009, 08:38 AM
Hi Shazny and welcome, I'm with Jack about the pred reduction. When I tried last year to get off as soon as posible I paid in spades by having a major flare and getting back on cyclo. So be cautious and reduce very slowly. Check with your doc and ask if going much slower is a better option. My firs warnign sign wer horrible muscle and joints pain, so bee on the lookout for these.

KtheC
05-19-2009, 09:09 AM
My reduction in pred was by 5's every week until I reached 10, then it was by 1's every other week until off completely. About 3 weeks after I was off I lost about 7 lbs of prednisone weight.

Jack
05-19-2009, 03:11 PM
It probably depends a great deal on how long you have been taking pred. In my case it is well over 20 years so I'm more dependant on it than most.

shazny
05-19-2009, 07:36 PM
thank you all for your comments. I have been on the pred more or less permanently for the past 9/10 years in that time i have gained over 50kgs and every time they have taken me off them completely i have had a flare up and been admitted to hospital - but the depression - and i take anti depressants daily - due to the weight gain is worth taking the chance of a flare up just to be rid of the dreaded things. I can cope with the wegs but this weight is horrific i can barely do anything that i should be able to do without being breathless and clothes look awful. Before the WG i had always been a UK size 8 now i take a UK 22 and i find that the hardest to cope with. However, I am going to watch what happens as i reduce the pred and am having regular blood tests too.

Cindy M
05-21-2009, 05:11 PM
Hi Shazny, this is a great place to vent and get some reallly great information and advice. I'm glad that you have your daughter for support. We all reallly need all the support we can get.

jola57
05-23-2009, 05:27 PM
Shazny, all us ladies here mourn out swelte bodies of yesteryear. I gined close to 35 Kg and also find clothes not fitting and boobs way out there where there were none before. Keep you spirits up though and come here often, we are all in the same boat. I had to show my face yesterday to my son's potential inlaws yesterday and she is size 8 (as I was just 2 years ago) I just swallow my pride, explain side effects and keep on going.
this too shall pass, I keep telling myself and all is good as rain. I am meeting them today again.

Sangye
05-23-2009, 11:47 PM
we are all in the same boat.
Did someone check this boat for seaworthiness? Gotta have a pred-cargo rating.... :D


I had to show my face yesterday to my son's potential inlaws yesterday and she is size 8 (as I was just 2 years ago) I just swallow my pride, explain side effects and keep on going. Very painful, I'm sure. One up-side is that this opens the conversation to the importance of really contemplating what marriage is about. The "For better or for worse" clause is not just a maybe, it's a definite. We won't all get something like Wegs, but we'll all have difficulties in life. Sometimes couples who face serious difficulties before getting married already have the tools in place to handle more down the road. Your son probably has a more realistic view of this thanks to you.

You're also showing them (everyone involved) how it's possible to have something catastrophic happen and still keep your sense of humor, your joy, and your involvement in life. You see this size 8 lady and think "I wish" and she might see your strength and courage and think "I wish."

When you see them again, keep your chin(s) up. :)

Doug
05-24-2009, 12:55 AM
Yes, I have to acknowledge that I look more like Santa Claus than Father Christmas or Brad Pitt these days myself. I hope current efforts will take of some of the extra kilos, but it seems weight aggrevates things like knee joints. So...! I have to take it slow and hope summer is over sooner this year so I can, at least, end the summer lighter if not start it that way. We'll see if I get invitations to play Santa next Christmas or not. That'll be the test of success. Haw! :)

RCOSSIO
05-24-2009, 11:56 PM
OMG...I had my pred reduced too fast from 20mg to 15mg (25% drop) and walla my "BFF" came haunting me with joint pains...next time I told my doc I am reducing by 1mg...and he finally agreed that might be the best option.

Keep in mind you know what is right and this forum will let you make informed decision based on the experience of others...my doc is excellent but I have made better decision by seeing how others Weggies handled their "BFF"...so keep informed and stay tuned to your body.

Doug
05-25-2009, 06:55 AM
Excellent! :):):):)