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eileenv
03-30-2010, 02:04 AM
Just thought i would let you know i received a copy of the urgent referal letter my rheumy sent to the ent specialist, in which he is currently ? asking if i have limited wegeners as i have a clear xray and kidney funtion is ok but i do have a trace of blood in my urine. A mistake he has made on the referal is saying my RF is neg when in fact it was positive as i have a copy of it from him!!. He also say that i have had a ANCA test positive twice with a peri nucuear pattern with positive pr3 antibodies. Does anybody else have a positive RF?

Lola
03-30-2010, 02:15 AM
RF - Rheumatoid Factor.
When I first got sick in 1990 my RF was very high, so my GP diagnosed rheumatoid arthritis.

I think a positive RF indicates inflammation somewhere in the body.

JanW
03-30-2010, 02:25 AM
Yes, I had a positive RF that increased between the time I believe I first started flaring and six months later. Very common to have this with postiive c-ANCA and P3. You may also see a positive SED rate (also called ESR) and positive C-reactive protein.

Sangye
03-30-2010, 02:27 AM
RF is not a very useful blood test--too many false negatives and positives. A history of malaria will often cause a (+) RF, for example.

I haven't heard that it indicates inflammation, though.

Many people with autoimmune diseases either have a (+) RF in the beginning or they develop one. No one knows why. Unless you have signs/symptoms of RA, it's nothing to worry about.

My RF was (-) but became (+) since I was dx'ed with Wegs.

Jack
03-30-2010, 03:08 AM
It's that expression "Limited Wegener's" again. I really don't agree with it. As far as I'm concerned everybody's case is different and some are affected more than others, but things can change very quickly!

When does Limited Wegener's become Wegener's Proper? Kidney involvement? Lungs? I pity the person that has every symptom on the list!

Gripe over! ;)

JanW
03-30-2010, 04:19 AM
Kidney involvment, as I understand it, Jack. I was told by my rheumy that it goes from "limited" to "wegeners" when the disease has affected the kidneys (even if nothing else is affected). It really is a "term of art" that doctors use, and mine certainly never tried to say that I couldn't go from "limited WG" to "WG" at the drop of a hat. That's why I have bi-monthly urinalysis.

eileenv
03-30-2010, 06:56 AM
Thank you all for your replies, yes i knew that RF factor dosen't have to mean you have RA the rheumy told me that himself, yes i have a high ESr
crp and, ie imflamation. What makes me laugh if when he said it was neg and it was him exspaining to me about a positive result. I shall tell the ent specialist when i see him, still wondering what he meant by when he said did i smoke or if i ever did?.

Sangye
03-30-2010, 07:07 AM
A study was just published that examines whether there are two types of MS. It would be interesting if there turned out to be two types of Wegs. Sure seems like it, since the longer one has "Limited Wegs" the less likely it is to ever develop Unlimited Wegs. :D

It could sure help us know which drugs to use, too. The incidence of MS is much higher than Wegs, though, so the likelihood of us getting this type of research is low.

Scientists find there may be two forms of multiple sclerosis – Paging Dr. Gupta - CNN.com Blogs (http://pagingdrgupta.blogs.cnn.com/2010/03/29/scientists-find-there-may-be-two-forms-of-multiple-sclerosis/?hpt=T2)

JanW
03-30-2010, 07:30 AM
That's interesting, Sangye. My doc seems to think also that the further away you get from original diagnosis without kidney involvement, the less likely you are to get it, and that with kidney involvement it's more like you can get any other issue at any time. That's what he's seen in his caseload anyway.

Yes, I can't see anyone pushing the envelope for new discoveries for WG. Talk about a small sample size!

Sangye
03-30-2010, 07:41 AM
Yes, that's what my Wegs doc told me last year. He said he'd be shocked if I ever developed kidney involvement, after having only pulmonary involvement for 4 yrs. He had one patient who suddenly developed kidney involvement after having Wegs for 9 yrs, though. She's also African American, which is already a rarity with Wegs. He said he couldn't believe it when it happened.

JanW
03-30-2010, 08:23 AM
That's like me -- which is why when I said to my ENT "hey, maybe my SS won't grow back" he said, "Lightening doesn't strike twice."

I wouldn't be surprised if there wasn't a whole lot of underreporting of blacks with the disease, however, due to lack of access to healthcare, co-morbidity factors (you have high blood pressure and diabetes and WG, and one of the others gets you first), misdiagnosis as sarc (which carries of the same clearly visible signs -- SS and saddle nose).

Now I'll be thinking I'm gonna get kidney involvement. Thanks, Sangye ;-).

Sangye
03-30-2010, 09:50 AM
Well join the club! Most of my complications are either unheard of with Wegs or very rare. So it doesn't really comfort me to hear my doc assure me that I'm unlikely to develop kidney involvement. I've been struck by lightning a bunch of times already.

moyan
03-30-2010, 10:24 AM
I have asked lab attendant and my pg if I should have urineanalysis and they both say nah. Kidney specialist never mentioned it. I have 50% kidney efficiency, kreatinine is stabilized at that and on my own initiative have bloodwork every 2 weeks, just in case kidneys act up since I am tapering pred. I also have swollen feet, joint pain, blocked ear, can walk 30 meter and then my breath is used so I have to get new by sitting. Is this a case of full Wegener's? Whatever, my approach is to enjoy each and every day. Read once about a little girl with cancer who every day sat with her mother on the bed saying "what was good about today". Some days I use that technique!!

moyan
03-30-2010, 10:27 AM
How many types of flu or common colds are there

moyan
03-30-2010, 10:30 AM
Jan, I have said it before but: once they find the tool to dx WG, there will be an epidemic !!

elephant
03-30-2010, 10:32 AM
Wow, moyan sounds like you are trying to look at the brite side especially what your going through. Sounds like your WG is playing tricks on you. You need to get the kidneys checked often.

Sangye
03-30-2010, 10:37 AM
Moyan, even though I don't have kidney involvement, my Wegs doc does a urinalysis at every visit.

moyan
03-30-2010, 10:39 AM
Hi el, how is it going? Found that quiet spot yet? Where you can munch your oyster/mango donuts! (Yes, I do watch th food channel ) :)

Jack
03-30-2010, 03:19 PM
I've been struck by lightning a bunch of times already.
"It is very rare and will probably not affect you"

Translation for Wegs patients -

"It is very rare so probably WILL affect you!"

:(

It is the early hours of the morning here and I'm sitting coughing over my Laptop. Another damn lung infection! It has been coming on for a while now (good ol denial kicked in! ;) ) so I'll visit the doc today and change my antibiotic. It seems that every time I stop taking Amoxicillin my problems come back again. I wonder if it is suitable for long term use?

JanW
03-30-2010, 11:38 PM
Hope you feel better soon, Jack!

Moyan, don't really know why anyone would say not to do a urinalysis -- quick, cheap, easy, non-invasive (the analysis of my bloods is charged out at $700 every other week and the urinalysis is maybe $50). As I have said before, I have two per month and will for the next year.

Brooke
03-31-2010, 12:19 AM
Jack, I hope you get to feeling better soon. How many antibiotics have you tried? Do the doctors try different ones to see what works best for you? What symptoms do you have that you know you have a lung infection?

Sangye
03-31-2010, 12:30 AM
Jack, sorry to hear you're sick again. Do you think you got over the last infection or was it still lingering? Either way, I think it's important to get a sputum culture. It could be something else or another antibiotic might be better for it.

Mostly, I hope you feel better soon. :)

Jack
03-31-2010, 12:49 AM
Thanks for all the good wishes. :)

I now have some more Amoxicillin which seems to work very well. My cough is currently very loose and the sputum has a distinctly greenish colour, but if it is like the other times, I'll soon see a marked reduction in both the coughing and the quantity of sputum and the colour will return to clear/white.

I hear what you are saying Sangye. I agree that if it continues to be a problem I should do something a bit more specific and get a culture tested. I can't be bothered at the moment! ;) (nag, nag, nag :) )

Sangye
03-31-2010, 12:58 AM
Here's to clear sputum!

One more thing I never thought I'd say... :D

eileenv
03-31-2010, 02:46 AM
Hope your soon feelinf better Jack.

DEE
03-31-2010, 02:53 AM
hope the anti b works and you have got your ribs wrapped in cottonwool this time !! take care wishing u well DEEx

elephant
03-31-2010, 03:12 AM
Jack take care of yourself. Keep yourself out of denial, don't want to end up in intensive care like my mother in law. She is a RN and very good at being in DENIAL. Her lungs were getting worse and she was having more pain and she kept telling us she was getting better!!! What???? That lead to the 911 call 6 days ago. The pneumonia was so bad that she went into AFIB and is on heart medicine. AFIb means that the heart becomes irregular and it beat very fast and is not normal.
She is home now and is very weak. I mean she is at our house.

Brooke
03-31-2010, 03:26 AM
elephant~ does your mother in law have wegener's too?

Jack
03-31-2010, 03:31 AM
Not many hypochondriacs on here are there? Everyone is too busy denying that anything is wrong! ;)

renidrag
03-31-2010, 03:40 AM
Glad to hear you are better Jack. I blame everything on Wegener's, even a hangnail.

elephant
03-31-2010, 06:33 AM
Brooke I thought of that but no, she doesn't. I think everyone has WG, anyone I see who has a sniffle or sinus or lung problem...I thinking WG! Call the Rhuemy now, don't wait a second. Already did this to my dad. He is ok.....I kinda freaked out because we had four maxillary surgerie on the same side. His blood work came out negative. I know that doesn't mean much..but my dad was ok with that.

Sangye
03-31-2010, 07:01 AM
I'm always on Wegs alert, too. I have a friend who's had increasing pain and stiffness in multiple joints for months. That's how Wegs started for me, but I can't convince her to get checked for anything, much less Wegs. She's in complete denial and certain of her invincibility. I've stopped mentioning it.

pberggren1
03-31-2010, 07:08 AM
I know what you mean Sangye about your friend. I've had a couple like that also and stopped mentioning it as well.

Oh Jack! If it's not one thing it's the other!

Jack
03-31-2010, 07:50 AM
It must be my New Normal. ;)

This disease is crap isn't it?

Sangye
03-31-2010, 08:01 AM
This disease is crap isn't it?
YES. I think the vote will be unanimous.

pberggren1
03-31-2010, 10:38 AM
I don't think crap even begins to desribe it.

elephant
10-21-2010, 08:27 AM
I was told that I was in remission June 2010, but I still have minor stuff going on...itchy ears, feeling like I am talking in my head....but if I sniffle then it goes away, and the little red dots in June and August.
I think Remission means:
1. No lung nodules
2.No joint pain
3. No fevers
4. No coughing or blowing blood
5. No fatigue/severe weakness
6. Acceptable labs values..PR3, creatinine,

Sangye
10-21-2010, 01:14 PM
That's so funny, Elephant. I was JUST thinking about that today. I think Dr Seo has been trying to get me to understand that for a few months now-- that even in remission there will still be some annoying symptoms or little things that ebb and flow. I guess I had a picture in my head that by the time we got the dog to sleep, I wouldn't have any symptoms. To be fair, a lot of my symptoms are due to damage. It's only becoming apparent now.

I do have #5, fatigue and severe weakness, though. I think it's damage to my adrenals but time will tell.

Brooke
10-22-2010, 12:21 AM
If that is what that means, I think I am in remission too! Although I still had a lot of inflammation in the airways during my last bronchoscopy after they tried to laser and balloon open the scar tissue. Hmmm.

elephant
10-22-2010, 12:26 AM
Sangye, hoping in time this fatigue goes away. You need a break!

Brooke- I still get on/off inflammation in my sinuses secondary to infections and irritants....because my left max is damaged. What does your doc think re: inflammation in your airways?

Brooke
10-22-2010, 12:37 AM
Elephant -
My doc at mayo had put me on anther short course of steroids and also sodium chloride nebs after my bronch there this Sept. She wants me to have another bronch in Dec to open up those airways. If it is still inflammed, she is thinking I will need Cytoxan. If it is settled down, they will continue to open up airways and I will still do another course of Rituxan infusions to keep it at bay. I really, really, do not want the Cytoxan. Rituxan has helped me so much but I guess my airways under all the scarring was still inflammed.

Sangye - Yes I hope the fatigue gets better for you too. I hate that feeling when there are things you want to do and just can't because you are exhausted.

Sangye
10-22-2010, 12:51 AM
You can get a decent idea of how active (or inactive) your Wegs is by using the BVAS. It's what the Wegs docs use to evaluate Wegs activity.

Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvas.html)

Johns Hopkins Vasculitis Center Research Birmingham Vasculitis Activity Score (http://vasculitis.med.jhu.edu/research/bvasform.html)

(I know the links say the same thing. No, I haven't lost my mind. :flapper: The first has the general info on it and the second has the scoring form)

Jack
10-22-2010, 12:54 AM
BVAS picture -

http://www.lindaslearninglinks.com/beavers3.jpg

:rolleyes1:

Sangye
10-22-2010, 01:21 AM
ROTFL.... Oh man, that's funny. You can just tell they know how to evaluate Wegs, too. :laugh::laugh::laugh:

elephant
10-22-2010, 03:05 AM
The one on the right is ready to take a nap!

Geoff
10-22-2010, 03:28 AM
You can get a decent idea of how active (or inactive) your Wegs is by using the BVAS. It's what the Wegs docs use to evaluate Wegs activity.


Looking at these BVAS I would surmise my Wegs as either;
a) Leaving me High and Dry
b) Out on a Limb
c) Dazed and Confused or
c) Frankly not giving a Dam (or building one for that matter!):biggrin1:

elephant
10-22-2010, 03:31 AM
How about all of the above! LOL:flapper:

drz
10-23-2010, 12:33 PM
I was told that I was in remission June 2010, but I still have minor stuff going on...itchy ears, feeling like I am talking in my head....but if I sniffle then it goes away, and the little red dots in June and August.
I think Remission means:
1. No lung nodules
2.No joint pain
3. No fevers
4. No coughing or blowing blood
5. No fatigue/severe weakness
6. Acceptable labs values..PR3, creatinine,

Is it realistic to expect no fatigue or severe weakness when we have incurred lung damage and kidney damage which will cause fatigue and shortness of breath? Some healing may take place and endurance may improve but I think some weakness and low endurance to physical activity is likely to persist. The other criteria seem good markers for remission. What is acceptable lab values will vary according to individual and how they respond to Wegener's disease?

elephant
10-23-2010, 02:42 PM
Hi Drz, yes to your question number 6. On number 5, should be worsening fatigue and weakness. I had lung nodule and kidney failure and I felt very weak, but once a got a kidney transplant I felt so much better. It took a long time for me to recover after thoracic surgery, it really depends how much damaged has happened.

Nancy
10-25-2010, 02:52 PM
Word to the wise... I had been diagnosed with "limited WEGS" x 14 yrs - lung involvement only.... on and off Cytoxan/pred as the cough/hemoptysis worsened and then got better... Last Nov - got an H1N1 shot - just like so many others did - I went into systemic WEGS... wow!!! always keep your eyes and ears and mind open... There is NO expected course for WEGS... It would be appropriate for the song - "Who let the DOGS out" to play at this time... Management and maintenance are the keys to WEGS and of course good advice!!

Jack
10-25-2010, 08:00 PM
I have posted in the past that I hate the term "limited Wegener's" because I really don't think there is any such thing. It just describes the state of the disease when not affecting many organs, but we all know that this can change at any time. It is not a helpful description.

pberggren1
10-25-2010, 09:23 PM
Thanks for this info Nancy.

elephant
10-25-2010, 09:34 PM
Nancy, I hear you...well stated! "Who let the dogs out?" LOL

JanW
10-26-2010, 12:00 AM
I think that if doctor's are telling their patients (I hope that they are not), that where the WG starts out is the only place it will ever go, that this will stop. Limited wegeners, at least how I have always heard it referred to by doctor's refers specifically to no kidney involvement and I believe that Sangye said that Dr. Seo says that the longer you go without kidney involvement the more remote the possibility becomes. But WG is ALWAYS systemic, whether it affects your kidneys or not, and certainly you shouldn't assume that you have a lighter case just because it limited.

Sangye
10-26-2010, 01:00 AM
Yes, that's what Dr Seo said. You're right about Wegs always being systemic. For example, Weggies are 23% more likely to develop blood clots. That happened to me right at dx, even though my only involvement was lung. Wegs affects the vascular system, which is everywhere.

Nancy, I LOVE the Who let the dogs out... That should be our theme song for a flare. :thumbsup:

MyerscoughClan
10-26-2010, 03:16 AM
My daughter was diagnosed with "Limited WG" because it was only in her sinus area, the minute it moved to her lungs they said she had full blown WG, but I'm with you Jack, WG is WG and less of it doesn't make it any better.

:predrage:

Sangye
10-26-2010, 03:41 AM
When I was first dx'ed, my lungs were hemorrhaging, I needed a blood transfusion, 1,000 mg IV solumedrol and oxygen. I nearly died. They called it limited Wegs. At the time I wondered what "unlimited" Wegs would do. :rolleyes1:

Nancy
10-26-2010, 12:08 PM
wow! I so agree talk about a Alfred Hitchcock moment of what next... The dogs thought is all due to you...Sangye...
http://www.youtube.com/watch?v=GUPGsIymFLs

Sangye
10-26-2010, 01:14 PM
LOL so cute. :laugh:

jola57
10-26-2010, 05:36 PM
Awww, just adorable.
There is no such thing as limited Wegs, how can there be if it is a progressive disease. I think the correct term should be "beginning stage of a systemic disease". So next time you doc says "limited" educated him/her.

Sangye
10-27-2010, 01:20 AM
Jolanta, I wouldn't characterize Wegs as a progressive disease. Just like there's no guarantee that it will stay limited to one area, there's also no guarantee that it will progress.

Jack
10-27-2010, 01:24 AM
I agree with Sangye, there is good news out there too with quite a few in long term remission. However, with the current medical knowledge the threat of relapse is always there.

Sangye
10-27-2010, 01:28 AM
Yes, but a relapse (or even many relapses) aren't progressive disease. Progressive diseases are ones like MS, RA or ALS (Lou Gehrig's disease)--diseases in which the progression of damage is certain and is part of the actual pathology of the condition.

Jack
10-27-2010, 01:33 AM
Wegener's has its good points! It is not progressive. :rolleyes1:

JanW
10-27-2010, 01:33 AM
I was just going to come on and say what Sangye says. When people say it's a progressive disease, I always correct them and say that it is far from certain that my condition will ever be worse that it is today.

I know that there is a ton of back-and-forth about limited/not limited, but I don't think that doctors should ever say that people are at the beginning stage of WG, because that is assuming that docs (or we) have any idea of what course that disease might take. For me, windpipe scarring could be the very worst of it -- I may never progress to kidney disease or bleeding lungs and could in fact have long periods of dormancy.

Sangye
10-27-2010, 01:35 AM
Exactly. :smile1: And even increased windpipe scarring is not necessarily due to Wegs, but to the fact that scar tissue likes to add to itself.

elephant
10-27-2010, 03:04 AM
My two cents...Wegeners has a mind of it's own. I kinda worry that it will get my transplanted kidney, and other organs. I think we all should be vigilant and careful, this disease has a way of sneaking back somehow. I'm not talking about being obsessive, but if you know something is not right, then it isn't....need to listen to your gut and have your gut tell your doctor.

jola57
10-27-2010, 05:44 PM
I bow to your collective wisdom, but just think, even tough it is not fast, every time we flare, more or different areas may be involved.

Jack
10-27-2010, 07:51 PM
I fully understand what you are getting at there. There is no doubt that although I have both ups and downs, the general trend is down. :(
But that is me now and would not apply to my condition 20 years ago when things were going well and if anything I was on an upward curve. For some people, this improvement or at least stability is near permanent.

Sangye
10-27-2010, 11:19 PM
Repeated flares don't make it progressive, even if more damage is done each time. I'm being a stickler about this because I really don't want newly dx'ed thinking they've got a progressive disease. Wegs is not in that category.

jola57
10-28-2010, 01:33 AM
True, just mad at my feet at this moment

JanW
10-28-2010, 01:50 AM
I understand your frustration, jola, but I'm not sure that research even bears out that more or different areas are affected when you flare...but research does bear out that most people will flare at least once.

Sangye
10-28-2010, 07:54 AM
Aww, I hope you feel better, Jolanta. Hugs for you and your feet. :hug2:

jola57
10-28-2010, 05:31 PM
Thank you Sangye. Well I have learned nothing from my orthoped. He confirmed, yes I have neuropathy, yes I have lost my arch, yes it looks like I will never walk right again and yes there is nothing that can be done. Shouldn't so many yeses be positive?:confused1:

elephant
10-28-2010, 08:43 PM
Jola, how long did you have neuropathy? So your Orthoped said that nothing can be done? Does that mean you walk flat footed? When someone says nothing can be done, I tended to find out if that is actually true. I guess I am a positive person and I think some research on the Internet could steer you in a different direction. You never know if some University is doing research on a particular issue...like neuropathy. ...I am a dreamer.

Doug
10-29-2010, 12:08 AM
Thank you Sangye. Well I have learned nothing from my orthoped. He confirmed, yes I have neuropathy, yes I have lost my arch, yes it looks like I will never walk right again and yes there is nothing that can be done. Shouldn't so many yeses be positive?:confused1:

My brother visited a few months ago. He's seven years older than me, has his own set of medical issues. He was talking about how when he and his wife take their daily walks, they get to laughing when they see their shadows because they both walk like penguins now- waddling back and forth.

I laughed, then saw MY shadow as my brother and I walked: Yep, walking like a penguin! I mentioned it to my brother, and we both had a good laugh on ourselves! Yet another thing that bonds us together...! All three of us- my brother's wife, my brother, and I have peripheral neurapathy issues. Mine has improved over the years to the point my left foot is pretty much OK, but my right foot is numb on the left side, a little numb on the right.

Sangye
10-29-2010, 02:51 AM
Thank you Sangye. Well I have learned nothing from my orthoped. He confirmed, yes I have neuropathy, yes I have lost my arch, yes it looks like I will never walk right again and yes there is nothing that can be done. Shouldn't so many yeses be positive?:confused1:
It may be that the egg is boiled. If it were me, I'd see if chiropractic and acupuncture could help (I'd do both). You never know. You might be able to get some nerve function back, even if you can't get it all back. But the longer it goes on, the less likely that is.

jola57
11-01-2010, 07:13 PM
It's not the nerve, he says its the loss of ligament and muscle tone. Being a friend that I have not seen since getting sick ( I shun all hospital events) he did not expect me to be so ill. He was very serious and did his tests 3 times for confirmation, shaking his head all the while. He finally cracked a smile when I naively told him that I think that there may be a co-relation between the metal screws being put into my toes and wegs. In his opinion ".. no way.." He ordered more xrays and will see me when I get back. But he dowsn't think that taking the screws is a good idea. Since I can't feel. I will not be able to feel if anything bad is happeniong.

elephant
11-01-2010, 10:34 PM
If it's not the nerve then can you have PT on your foot?

Sangye
11-02-2010, 12:21 AM
I have the same suggestion as before. What does he think controls the muscles and ligaments? Nerves do. Nerve damage or interference causes muscle atrophy. :rolleyes1:

Nancy
11-02-2010, 12:55 AM
Jola - see if you can find a physiatrist - a rehab physician. I worked for a group here in Kansas - we saw many people with neuropathy combined with gait imbalance due to the neuropathy. They can test you to find the exact area causing the neuropathy, they then work with rehab therapists (PT/OT) under their direction to provide the needed actions/activities/exercises to see if a change can be made with the tendons and other problems that you are mentioning. Sometimes orthopedic physicians do not think of a simple referral... Physiatrists are trained in physical rehabilitation/pain management (one of the few who are) as well as an extensive knowledge of nerves and muscle grouping as they often work with stroke victims to car accident victims to regain their life... I wish you the best
Nancy

eileenv
11-02-2010, 03:06 AM
Hi Jolanta, I was reading abouy your neurpathy and the nerves, I have numb area over the right side of chest and this exstends just pass the elbow and all round the shoulder, When i was about i burnt myself on a hotwater bottle on my chest, but it was assumed that i had fallen asleep with it not that i couln't feel it.
In my teens i new the front area was numb, on a night shift on my break i was talking to a patient finished the shift and then only when i went home and had a shower my husband said whats happened to your back, when ilooked i could see it looked like a huge burn. Went to the AE, were i had it treated for a week, but in the end i had to have a skin graft as some places were third degree burns.