Those who have lost their lives to WG

[gwenllian111]

I wonder, if anyone knows, how those come to lose their lives to WG?

I'm sorry for posting such an emotionally emotive topic, but I just wondered how those come to lose the battle?

Thank you for reading my post.

Gwen

[delorisdoe]

I wonder that too. My doctor throughout my treatment called me a "hard to get into remission" case of wegeners. I think 2.5 years of cytoxan proves him right. I wonder how if I was difficult than how much more difficult would someone who did not make it be. I had my share of setbacks and side effects. Interesting to ponder for sure.

[gurinbasra]

I just read on Facebook of a lady who said her husband had just died from WG, but didn't know it at the time. So I'm thinking they must have done an autopsy and found out later. Wonder what % of those that died where actually diagnosed with it prior to death.

[pberggren1]

I think kidney failure would be the most common.

[Brooke]

I too wonder about this. hmmm...

[norcalian]

I was told by my rheumatologist that it's usually complications of medications and opportunistic infections, such as PCP (which is why I was scared when I had to deal with that a few weeks ago) that cause the deaths of WG patients. He said it wasn't too common for a Weg's patient's death to actually be caused by WG anymore. Perhaps that's just his experience...but it makes sense to me.

[pberggren1]

Oh yes, that makes sense then. I was just thinking of Wegs, not the whole patient in general.

[gwenllian111]

I was told by my rheumatologist that it's usually complications of medications and opportunistic infections, such as PCP (which is why I was scared when I had to deal with that a few weeks ago) that cause the deaths of WG patients. He said it wasn't too common for a Weg's patient's death to actually be caused by WG anymore. Perhaps that's just his experience...but it makes sense to me.

I can well believe this.

I'm starting cellcept again today. If this fails...well I don't even know how to end that sentance.

[norcalian]

I can well believe this.

I'm starting cellcept again today. If this fails...well I don't even know how to end that sentance.

I certainly hope that cellcept works for you. With all of the various drugs and treatments that they're coming out with, I can't imagine that they can't find something. I'll be sending good thoughts your way.

[Psyborg]

Gwen,

I hope the cellcept will work for you. Given your intolerance of immuno suppressants, has the doctor had any ideas on some of the newer investigative treatments? If the standard stuff isn't working I'd say it'd be worth it to try something like that, of course I'm no doctor too. At any rate I'll keep you in my prayers.

[Geoff]

I was told in the first few days of my initial hospitilisation that pneumonia would be my most likely way out of this world.

I guess tho with this illness everyone will find a different path!

[RCOSSIO]

Gwen,

Been on Cellcept since June 2009...3000mg. All I can say is it takes usually 3-4 months for Cellcept to kick in. Good Luck

[Sangye]

Dr Seo told me we are more likely to die from infection than from Wegs.

Richard, I think you meant 3-4 weeks for Cellcept to kick in. :wink1:

[watersedge]

Gwen, I feel so bad for you feeling so unwell and as I can tell from the title on your post also having all these horrible questions cropping up in your mind to deal with. Your children look so young and adorable and I am sure you worry for them too. I hope with all my heart that the Cellcept works for you and that you start to turn a corner and feel better soon.

[RCOSSIO]

GEE....if felt longer. Well Gwen 3-4 weeks is better than 3-4 months. Thanks Sangye, you just save me a quarter year, hahaha :w00t::w00t:

[Sangye]

LOL Enjoy!

[Stephanie78]

In the beginning, this was my only thought.....Will John Die???
After talking with Johns dr. who has treated thousands of cases of WG, I have learned that (in his case) most do happen from Kidney/Renal failure. However, these patients have been misdiagnosed for quite some time, so by the time they are treated for the correct disease they are so bad that the treatments don't work fast enough.
When John was first DX'd he was put on Prednisone alone (I now read some of my first posts and want to POUND my head into a wall....To think I trusted a rheumy who only wanted to treat with Pred UGH!). He was on 5mg for a month and was taken off (not tapered). Within one week John was in really bad shape. It was then that he was treated with CTX and after his second treatment they realized that wasn't working. Then it was RTX, however that takes FOREVER to take effect and work...So last resort was Plasma Exchange (Which they do not do very often, on in Medical Neccessity situations). John was DX'd within 1 week of going to his ENT. I can't imagine IF he would have been misdiagnosed. I'm not sure he would still be with us.

One of the other factors of deaths in WG patients (According to the Drs I have spoke with) is complications from medications. There is a great risk with some of the treatments. In fact John had to sign forms to be able to be treated with CTX (IV) and Plasma Exchange due to the complications that can come of them (With a DNR yes or no form)

And the last one....Stroke. Due to the clotting issues that goes with the disease, strokes are likely. Only one Dr had experienced this part but again he is the one who has treated thousands of patients.

All of these situations were said to have age and health (Before sickness) being a factor.

I tell John....Death is not an option. Let's keep fighting babe, we have too much more to do in life and I'm not doing it alone!

BTW he made dinner last night! Small things seem so big now :thumbsup:

[Stephanie78]

Just re-read my post...I didn't mean "Stokes are likely" as in they will probably happen...I meant to say they are a "possibility". Not usual but do happen.

[vdub]

Good thread! I have often wondered this myself and did quite a bit of research on it and I still don't know the answer. My situation is a little different (the whole no-pituitary thing) and that changes a few things. I'm not sure how I will peg out, but my guess would be kidney failure, liver failure, or just get tired of all the crap.... I'll let you know in 20 years or so... :-)

[Sangye]

I've been in the ER more times than I remember--especially in the first 2 yrs after dx. One time I was in for a new problem that was unrelated to Wegs. The friend with me had taken me to many ER trips already and knew the long list of diagnoses I already had. At one point I looked at her and laughed, saying, "After all I've been through, wouldn't it be funny to die from something that wasn't even on the list?" :laugh::laugh::laugh:

[gwenllian111]

Richard - i'm on 1000 mg per day of cellcept so far - working my way up to 3000mg slowly. I had a scan last week which showed arthritis in my hands, shoulders, hips, knees and feet - no wonder I can't get out of bed some days. I'm on 60mg pred, and having 3 IV pred infusions next week at the hospital. I look so big, put on 2 stone, but as my husband craig keeps telling me, that's the least of my problems. :-/ I know he's right, but I hate the side effects of pred which seems rediculous considering I know.

Stephanie - I didn't know that WG increasd the chances of stroke. Interesting. John has been through so much. God bless and keep fighting XX

[gwenllian111]

I've been in the ER more times than I remember--especially in the first 2 yrs after dx. One time I was in for a new problem that was unrelated to Wegs. The friend with me had taken me to many ER trips already and knew the long list of diagnoses I already had. At one point I looked at her and laughed, saying, "After all I've been through, wouldn't it be funny to die from something that wasn't even on the list?" :laugh::laugh::laugh:

LOL i always think that with me too!! :w00t:

[DEE]

did they say what type of arthritis it was .I have the same symptoms and the are saying Osterio Arthritis.

[gwenllian111]

Gwen,

I hope the cellcept will work for you. Given your intolerance of immuno suppressants, has the doctor had any ideas on some of the newer investigative treatments? If the standard stuff isn't working I'd say it'd be worth it to try something like that, of course I'm no doctor too. At any rate I'll keep you in my prayers.

Thanks Bob. Plasma exchange I think, if it affects my major organs.

[gwenllian111]

did they say what type of arthritis it was .I have the same symptoms and the are saying Osterio Arthritis.

I did ask this last week at my appointment. The rheumy said sinovitis which is another word for arthritis he said - but no specific type.

I've got great new gloves from the chemist now for my hands to stop them turning into a claw which I can't open. I'm really pleased with them, has helped a lot.

Dee - do you have any 'aids' to help you around the house etc? What pain relief are you taking?X

[DEE]

Gwen,
I use a walking stick ,mostly outdoors. But because we I live in a bungalow moving around not to much of a problem . Just had to use the down stairs bedroom ,as climbing upstairs Im reasonably ok but coming down is to painful on my knees .
I take 100mg Tramodal in a morning and evening .Try to manage without through the day but GP said its ok if need be .