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HopeinTN
11-10-2011, 12:41 PM
Forgive me if this has already been asked/discussed, but I'm curious as to th eprogression of Wegs. I know we are all different and it sounds like there are various levels of Wegs, but in general, what can I expect?

Currently, it's effected my lungs. Even though I've had sinus/upper respiratory issues for awhile as well as bladder/urinary tract/kidney issues and stones, both my kidneys and sinuses look good. Here's where my concern comes in. Will it always be in just my lungs? I'm still new at this and have a lot of questions for my doc at my next appointment, that I never thought to ask until I got on here.

Meds are still going ok for now and I have my first post cytoxan labs this week. I can't help but think about the future and how this crazy disease plays out. Is the worst behind me? The lung lobectomy was no walk in the park, nor was the collapsed lung or thoracentesis.

Any info is greatly appreciated and I'm so grateful to all on this forum.

Thanks,

Al
11-10-2011, 01:27 PM
No, I don't suppose your lung issues were a walk in the park, and probably not a fast jog, either, at least for the foreseeable future! As to the progression, you answered this yourself: we are all different. There are hints, though. If your sinuses and kidney's are doing okay, there is a good shot of keeping them out of the battle zone. It was the lungs that led me to seek medical attention, but the kidneys bore the brunt of the disease. The lungs are now doing quite well, considering. I'm always at 98-99 percent oxygen, even after a brisk workout, and the PFT comes back at almost optimum for my age. I still have some congestion, but I've had that since childhood. The plus side for you, and I can't emphasize this enough, is that other thing: "I can't help but think of the future...". What a remarkable thing to say! So long as you believe there will be better days, there will be.

Al

HopeinTN
11-10-2011, 01:43 PM
Thanks Al. I really do feel like one of the lucky ones. You would never know I had half of my lung removed at the end of May. My PFT and numbers are doing good. The bad part are the funky granulomas that were left behind and a newly formed one since May.

I guess as long as we keep the lungs in shape, that's a start. As for the other areas, keep a very close eye on them. I just wondered if it can be prevented from spreading, or just the luck of the draw. I aim to continue on my positive and optimistic path, but I do realize it's much easier when you are well. I can't help but to feel guilty for feeling good when there are so many others that are not. For that reason alone, I'm inspired to help others when I can.

Take care!

mama2005
11-10-2011, 01:56 PM
I don't think that we can prevent the spread of the disease to other areas but being aware of your body and the disease can surley help with getting the right treatment to help protect the resat of your body from extra damage. Don't feel bad for feeling good. It is something that you can be proud of because you are beating this disease.

HopeinTN
11-10-2011, 02:10 PM
Yes Mama, I think you are correct about awareness and this forum will be they key to staying informed. I've learned so much in such a short time and I certainly have a start at things to watch for.

Thanks so much.

Sangye
11-10-2011, 02:15 PM
Forgive me if this has already been asked/discussed, but I'm curious as to th eprogression of Wegs. I know we are all different and it sounds like there are various levels of Wegs, but in general, what can I expect?

Currently, it's effected my lungs. Even though I've had sinus/upper respiratory issues for awhile as well as bladder/urinary tract/kidney issues and stones, both my kidneys and sinuses look good. Here's where my concern comes in. Will it always be in just my lungs? I'm still new at this and have a lot of questions for my doc at my next appointment, that I never thought to ask until I got on here.

Meds are still going ok for now and I have my first post cytoxan labs this week. I can't help but think about the future and how this crazy disease plays out. Is the worst behind me? The lung lobectomy was no walk in the park, nor was the collapsed lung or thoracentesis.

Any info is greatly appreciated and I'm so grateful to all on this forum.

Thanks,
Wegs isn't a progressive disease like MS. As long as it stays under control it won't necessarily cause any more damage to your lungs or any other part of your body. And even if you do flare, you are more likely to catch it sooner, before damage is done. However, this is no guarantee. Many times flares sneak up and/or we go into denial about them until things are so bad they require major meds. Wegs is highly unpredictable.

Dr Seo told me that people with lung-only involvement who don't develop kidney involvement for several years are highly unlikely to ever get it. He told me this about 3 years after dx, and said he'd be completely shocked if I ever developed kidney involvement.

The best thing you can do is take it one day at a time. Remain vigilant but not paranoid about your symptoms, and don't let things go too far before giving your doc a call.

Al
11-10-2011, 02:37 PM
... I aim to continue on my positive and optimistic path, but I do realize it's much easier when you are well.

Yes, Hope. That's a major with being sick. (Only healthy people are able to withstand the rigors of treatment!) I love your attitude....

Al

me2
11-10-2011, 04:22 PM
30 some years ago I almost died from primarily kidney involvement. I also had joint pains- they would also swell up huge.
I had zero lung involvement. I thought the doctor was nutty because he kept listening to my lungs. I would think "My kidneys and joints hurt , why is this idiot listening to my lungs." Kinda funny in retrospect. This was before the internet and before doctors
would explain things to a patient.
Then after twenty years of remission I relapsed. This time it completely ignored my kidneys and went for my lungs and brain stem. I got to learn about NEW things. Still I'm glad my poor kidneys got a break this time round.
I guess the moral of the story is YES this illness is unpredictable
The plus side is it can (with treatment) decide to leave you alone. It sounds like that is where you are. You have been through a LOT but todays treatments are very effective. When I first got sick they had only recently developed treatment. Many refinements and some breakthroughs have been made. There is a lot of reason to be optimistic.
I remain vigilant but not paranoid (That phrase sounds familiar. I like it).

renidrag
11-11-2011, 12:04 AM
Hope: I also have had "just" lung involvement with wg. Diagnosed in August 2009. I too came to a rather rapid new normal and am still in drug free remission. I can also identify with the feeling of guilt when others suffer so much more. An old friend of ours suggested I (we) should not feel that way as we could be a beacon of hope to others. His name was Jack, you may have heard of him.
Dale

HopeinTN
11-11-2011, 04:30 AM
By the way, my name is Katrina, but most relate that to the hurricane. My mom says to people "yep, she's just like the hurricane, but a bit stronger".

I felt Hope would be more fitting for this site since that is my goal, to always have Hope.

I have read a few of Jack's post and wow, what a wise man he was. It sounds like he touched many lives and shared all his wisdom.

Happy ALMOST Friday!

freakyschizogirl
11-11-2011, 09:52 AM
Hey HopeinTN - i can only echo what everyone else has said about wegs progression and this journey being different for everyone.

I can add, however, that Vasculitis UK are working on a "Route Map" for the disease is association with Genetic Alliance UK.

Genetic Alliance UK: Projects - Route Maps for Rare Conditions (http://www.geneticalliance.org.uk/projects/routemapsrareconditions.htm)

Hopefully this will help the current and next generation to understand and identify our disease.

I only became aware of this as the Prader-Willi association is doing one too - i work with PWS sufferers. Sounds like a good initiative.

maria garcia
11-11-2011, 02:06 PM
Hope in TN. Please don't feel guilty. Like the others said, These type of stories(remission) Bring a big smile to my face and makes my heart a little lighter bcse it brings hope for a future in remission.

jola57
11-11-2011, 04:08 PM
I second that.

HopeinTN
11-16-2011, 02:32 PM
Is it possible for Weg's to effect other areas aside from the lungs, sinuses, kidneys and skin? I ask because, in addition to the lung ordeal I've been dealing with since May, I've had an issue with something showing up in a mammogram. I've been getting them regularly since 35 (mother and grandmother both had breast cancer) with no issues, but in May the doctors ordered another as the surgeon saw something on a scan that he thought we should check out. I did and it was normal/stable. Due to additional pain in the breast area (could be normal healing) in October they ordered another mammogram and it came back abnormal but stable. I had a follow-up appointment today and they determined it's dense tissue and nothing to worry about but keep an eye on. I'm now classified as high risk and will repeat ever 6 months. Great news, but can't help but wonder if this could be Weg's related. I sent the info to my Rheumy and look forward to a response. Thanks all and have a good evening.

Sangye
11-16-2011, 02:34 PM
Any part of the body can have Wegs involvement. We have a member here who had Wegs breast involvement.

HopeinTN
11-16-2011, 03:16 PM
Thanks for the info. Do you remember who or the specifics? I'll be interested to hear the dr.'s take and opinions on this.

Rose
11-16-2011, 04:00 PM
In my investigations/resarch into WG over the years I have come across info on breast involvement. Annual mammogrammes are a must for us but I think mostly because of the immunosuppressants. Annual pap smears are also a must again for the same reason as cervical cancer is caused by a virus which, in most cases when present, is kept under control by a healthy immune system

HopeinTN
11-17-2011, 12:29 PM
I do feel better now knowing that I will have the mammagram evry 6 months. I've also developed these small sores on my scalp in the temple area. Currently they are just on one side, but back in May when I had the first issue with my lungs, and while in the hospital, I had these same spots on both temples. Very ood, but I'm guessing it's Wegs too.

I just can't so how lucky I feel to have this site, you guys and all the info I'm getting. THANKS!

Psyborg
11-18-2011, 01:15 AM
I do feel better now knowing that I will have the mammagram evry 6 months. I've also developed these small sores on my scalp in the temple area. Currently they are just on one side, but back in May when I had the first issue with my lungs, and while in the hospital, I had these same spots on both temples. Very ood, but I'm guessing it's Wegs too.

I just can't so how lucky I feel to have this site, you guys and all the info I'm getting. THANKS!

I had something like that. At first I thought it was acne or something, but it wouldn't heal up and had a different kind of pain associated with it. Mainly on my right temple and the hairline behind it.

HopeinTN
11-18-2011, 02:00 AM
My spots are under the hairline in the temple area. Weird.

rif
11-18-2011, 06:39 AM
Wegs caused damage to my sons intestine and he had to have emergency surgery where part of his small intestine which had been damaged was removed and a temporary ileostomy formed whilst the newly joined parts healed together and then four months later when he was deemed strong enough another operation was carried out to reverse this procedure. I have not read of anyone else on this site having similar problems.

HopeinTN
11-18-2011, 09:11 AM
My brother and sister both have Chron's disease and my sister has had a similar surgery. Except, her ileostomy is permanent as well as they had to remove her colon and rectum. I've been lucky to be so healthy for so long just sad my siblings weren't as lucky. So weird how all these auto immune diseases react. I hope your son is doing much better.

rif
11-18-2011, 09:39 AM
Hi HopeinTN, my son is definately doing a lot better now thank you. He has always had a very positive and laid back approach to life which has helped thru the ups and downs since diagnosis and change in lifestyle.

norcalian
11-18-2011, 11:39 AM
You have been through a LOT but todays treatments are very effective. When I first got sick they had only recently developed treatment. Many refinements and some breakthroughs have been made. There is a lot of reason to be optimistic.
I remain vigilant but not paranoid (That phrase sounds familiar. I like it).

When I asked my rheumy what my prognosis was he wouldn't give me a straight answer (I now understand that there isn't a static prognosis for this disease - only the individual nature of everyone's experience). One thing he did say on a couple of occasions was that I should be glad that I was diagnosed with disease at a time when there are so many good treatments available. I think we'll all benefit from this generation of RTX, AZA, improved prednisone dosing schedules, etc.

Al
11-18-2011, 12:11 PM
... I should be glad that I was diagnosed with disease at a time when there are so many good treatments available. I think we'll all benefit from this generation of RTX, AZA, improved prednisone dosing schedules, etc.

I agree with all my heart and other favorite, if besieged organs. Still, I further believe that, not too many decades hence, the idea of global immune system suppression for autoimmune diseases (which amounts to triage, and is currently used for long-term management) will seem quite barbaric and primitive. But this is 2011, not the future, and the present is, indeed, vastly better than the old days, just a few years ago....

Al