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chrishans
11-12-2009, 10:12 AM
It all started in April, 2008. Swollen hand for a few days then nothing for a month. Started as a normal cold for me, scratchy throat...Normally would not go to a Doc but did since my Daughter was to be married in a week and a half. I was prescribed an antibiotic and other OTC items but you guessed it, nothing worked. Over the next seven months I was prescribed about six more antibiotics amongst other meds including prednisone (10 or 15 day packs), but still nothing worked. In January '09 my ENT did a test to rule out Wegs but instead ruled it in. Then went to a local pulmonologist and rheumatologist but was not satisfied. Went to Philadelphia, then New York and now am seen at the Cleveland Clinic. In May of this year I started with 60mg of prednisone to start and felt good pretty much right away. Weaned off it by July 31st and the symptoms came back, although changed. My nature is to downplay the symptoms and not complain too much. I go to work each day. Night time is more difficult. My symptoms right now and since August 1st are a congested head, runny nose with no blood, phlegmy cough with no blood, pains in knees, elbows, forearms, toes, gums, sores in mouth, tightness in chest on several occasions, dry mouth while sleeping. I have had two negative biopsies. Although I have had positive pAnca and cAnca the Drs. have not positively diagnosed my illness as Wegener's although they may as well have. I was on Bactrim DS from January thru September 20th. I stopped and went to a nutritionist and have been taking ten different supplements, for six weeks, but these have not helped. My biggest problem is the Drs. have not been able to confirm the diagnosis so all we have to go on are my symptoms. Am I doing more internal damage by not starting the Prednisone and Methotrexate?:confused:

elephant
11-12-2009, 11:45 AM
Hi Chrishans, It sounds like wegeners disease. Who did you see at the Cleveland clinic? I had the runny nose ( no blood), short of breath ( on and off), swollen joints ( to the point where I could not walk), temps that would spike up to 101 and be gone in a day. I also had trouble swallowing, I can go on. I was finally diagnosed in 2008. I had this disease for 30 years and the docs could not figure it out. Kidney Transplant in 1989.... Anyways wegeners will do damage if not caught in time. I hope you don't have Wegeners! Be persistant!! :)

chrishans
11-12-2009, 12:30 PM
I am seeing Carol Langford. I have had three visits and I have the feeling that if I want to begin taking the drugs, ie pred and methotrexate, she would go for it but I just don't know what to do. I guess I would feel better if I had 100% assurance that I have wegs but I do not want to do any damage by not doing anything. I am going to meet with a local rheumatologist and have him speak with Langford at Cleveland. It took 30 years for your diagnosis?

Sangye
11-12-2009, 01:00 PM
You may be one of the many people who never has 100% confirmation. Your symptoms and the course of disease sure sound like Wegs. I'm sure Dr Langford explained that often when someone has the signs/symptoms of it, they treat it as if it were confirmed. Most of the related autoimmune diseases are all treated the same, anyway. The risk of not treating it and having it progress is very high.

Methotrexate is not a breeze, but it isn't anything like cytoxan (the heavy-duty chemo they usually use). If treatment is delayed, you might wind up on cytoxan. It'd be very good to avoid that.

I suggest you ask Dr Langford what she'd do if she were in your shoes. You can trust her judgment. I hope you'll continue to see her--she's an excellent Wegs specialist and you'd be safe in her care.

And BTW, welcome to the group! :)

andrew
11-12-2009, 08:15 PM
Welcome! I've heard many good things about Dr. Langford. I'd do as Sangye suggests and ask her what she'd do. I too would recommend starting a course of treatment ASAP. Letting the WG (assuming it's that. sounds like it is) get mre of a foothold is going to do you more harm than good.

elephant
11-12-2009, 10:26 PM
Hi Chrishans, Well my story is long. It took forever for Carol Langfords resident to type up my history. Mine started back in 1980 ( red eye, swollen joints and sinus infecs/ear). At age 15 ( I'm 44 now) I was complaining of severe joint pain and back pain ( going into kidney failure). Started to lose alot of weight ( skin and bones) was admitted to childrens memorial hospital in chicago. I was there for two months. They did every test on me ( alot of poking). They decided it was some type of autoimmune disease. So I was on cytoxan and prednisone for about 3 months. I stoped the cytoxan because I was vain and didn't want to lose my hair. I was back in remission. I stayed on prednisone and blood pressure med for several years. My creatine was a 2 at the time ( kidney function). It progressively got worse at age 24 and ended with a kidney transplant (brother gave it to me). Once you get a kidney transplant they put you on prednisone and immunosuppressant ( cyclosporine). So that quieted the disease for a long time. Then the docs took my off prednisone and lowered the cyclosporine. Thats when I had symptoms ( mild joint pain, chest pain, runny nose, ear feeling full, abdominal pain, headaches, spikes in BP, eye pain) . Then in Sept of 2007 it got really bad. I was in complete denial. I kept blaming my swollen joints from playing and carring by kids. I am pretty petite, so everyone thought the same. Anyways after three Maxillary sinus surgeries and could not hear. I worked as a RN doing Case Management at a local Hospital, and realized I can't hardly hear and walk. I knew I had to do something since my ENT even after the biopsy report stated possible Wegeners, but it also had other diseases/cancers down. I went to a good doc and he figured it out in one minute! Carol Langford is great and she will answer any questions you may have. I know it is scarey to be on meds, but if I didn't I would be dead like the rest of us WG. Not trying to scare you, but if you read about it you will see that prednisone usually alone will not put Wegeners in Remission. Hope all turns out good.

onatreetop
11-12-2009, 11:57 PM
welcome and boy your symtoms sound a lot like mine. My hands were what made me seek more help. I had been seeing A neorligist for 6 years for carpultunnel and guess what...........it wasn't. He finally sent me to a RA doc and that is who found the WG and fast. He took one look at me and said I believe there is an underlaying problem here and we are going to find it. 24 tubes of blood later and pee in a cup lead to mra of lungs, catscan of head, reinal function nuc testing and ultra sound of kidneys and two more test I cant remember. The only thing he found were 7 3mm nodgules in my right lung. Then he said thats is it. You have WG and it is just starting. I began the meds within two weeks of meeting the RA and have been taking them since. Which isn't to long but I am in my 5th month.
I could have argued the RA but the symtoms were there and I did get relief from the pred. cyt and bac. My hands are nowhere near what they were. That was the other test catscan with nuc of hands. The palmer arch was blocked and another one. I had that test again and they have begun to open up more! So it is working for me.
i have always had a history of headaches,sinus and allergy probs but the hands I needed back and bad.

chrishans
11-13-2009, 12:25 AM
Thank you all for your thoughts. It certainly seems as though my symptoms are minor after hearing about everyone elses. I am calling Dr. Langford today to schedule an appt. I have a local rheumatologist who I will ask to speak with Dr. Langford. I understand we must trust our Dr. but I guess since my symptoms have not been constantly debilitating, I have been searching for a 'Natural' way out of this dilemma. Good health to all.

Jack
11-13-2009, 12:30 AM
Thank you all for your thoughts. It certainly seems as though my symptoms are minor after hearing about everyone elses. I am calling Dr. Langford today to schedule an appt. I have a local rheumatologist who I will ask to speak with Dr. Langford. I understand we must trust our Dr. but I guess since my symptoms have not been constantly debilitating, I have been searching for a 'Natural' way out of this dilemma. Good health to all.
If it is Wegener's, the best time to treat it is when the symptoms are minor. I went from minor symptoms to dying in a matter of a couple of weeks.

You should not necessarily trust your doctor. Most know nothing about Wegener's and misdiagnosis is pretty much the norm.

There is no Natural way to tackle Wegener's.

chrishans
11-13-2009, 01:13 AM
Jack,
When you say misdiagnose, are you referring to Doctors diagnosing the symptoms as something other than Wegener's rather than diagnosing it as Wegener's and being wrong?

Sangye
11-13-2009, 02:32 AM
sBecause the symptoms of Wegs are so variable, many of them can look like other conditions. Runny nose, sinus pain, sinus headache-- often misdiagnosed as sinus infections. There is a "classical" presentation of Wegs that regular rheumys might look for, but very few patients actually present that way. Most of us are a hodge-podge of symptoms. Many people go undiagnosed for years. It takes a Wegs specialist to stand back and see the whole picture.

This is true for the entire time you're treated. I'm in a flare that all my other docs missed because it didn't fit the textbook.

Please don't try to treat this naturally!! Somewhere there's a post called Natural remedies or something that explains how deadly that is.

Jack
11-13-2009, 04:02 AM
By misdiagnosis I was referring to the fact that almost all of us were first unsuccessfully treated for a condition other than Wegener's, usually it is treated as an infection. When multiple symptoms start to develop they are often treated individually rather than the whole picture being viewed and assessed as one disease. It does not help that Wegener's does not have a definative test to show its presence. Diagnosis tends to be from interpretation of a combination of test results.

Sangye
11-13-2009, 05:09 AM
Here's one of the posts about using natural remedies. http://www.wegeners-granulomatosis.com/forum/general-wg-chat/353-natural-homeopathic-remedies.html

(Many people substitute the word "homeopathic" when they mean "holistic." Homeopathy is a type of holistic medicine. Easy to find info on it by googling.)

katwoman
11-13-2009, 08:12 AM
Great information Sangye, when I first got ill I remember my immunologist telling me to be careful with any natural remedies as they can affect the drugs being taken to treat WG, but I never really thought about the immune boosting products and that our immune is already running riot, hence immune suppresents, guess when you are in the throws of the illness you don't even think about things like that only wanting to do anything to get better.

I have alot of well meaning friends saying I should just go to a natropath because of how wonderful they feel and they are constantly saying all I need to do is boost my immune system! Thank you for the information it is much appreciated.

Doug
11-13-2009, 03:06 PM
The medical path may kill us in the long run, but the natural path will get us there much quicker. Well meaning friends need to understand this. If they aren't trained in the specialties that understand the nature of this disease, then they are meddling.

That's why we need to emphasize again and again that no matter what we advise, the weggie needs to run it, whatever they read here or elsewhere, past their team of WG specialists.

Most of us have personal experience with WG, some have family with it, but few of us have medical training.

chrishans
11-14-2009, 03:08 AM
My local MD has run some tests for Candida and Lyme disease and is sayin g that I have both. I suppose the Lyme would explain the muscle pain and the sinus issues from candida. Didn't Tony Orlando and Dawn sing about a girl named Candida? What's with that? This Doc believes the traditional medical world has it all wrong. I have asked him to do a western blot test to confirm the positive Lyme results because I have read that there can be false positives caused by Auto Immune issues. His treatment would be Biaxin, 500mg for 30 days as well as Diflucan, 100 mg for 50 days. Could he be right? I will speak soon with my Rheumatologist. Thoughts?

Sangye
11-14-2009, 03:45 AM
I can't say whether you have Wegs or Lymes, but I can comment on a few things :
1) Anyone on antibiotics has candida. It has to be treated (and can be done naturally, even with Wegs), but there's no way it'll cause the type and severity of symptoms you describe.

2) With Lyme's, even the Western blot has false (+) and (-).

We thought I had Lyme in the beginning and tried treating it as such. At first the treatments helped, but very soon I got worse and worse and nearly died. Lyme often triggers AI diseases. So, maybe I had Lyme and we cured it but it had already triggered Wegs, or maybe it was Wegs all along. We'll never know.

3) You said that on 60 mg pred you were much better. That won't happen with Lyme. It's a progressive and quite damaging disease unless it's treated. (Pred isn't a treatment for Lyme)

4) I also just noticed that you went on 60mg pred in May, 2009 and were off it by July 31?? That's an extremely fast drop and can worsen Wegs in a hurry.

Please stick with the Wegs specialists at Cleveland Clinic. I think they're the only ones who can sort this out. I'm sorry it's so unclear for you. Makes it much more stressful, I'm sure. :)

chrishans
11-14-2009, 05:30 AM
Thanks and hopefully I will be able to give advice instead of only taking it in the future.

Sangye
11-14-2009, 11:30 AM
No worries! Ask for what you need. As you learn more, you'll be able to share more. :)

nagesh
11-16-2009, 07:19 PM
any one has a family history of WG
I am from Bangalore India
my first son master Nischal at the age of 13 years dx for WG in the month of JAN 09


my second son master Revanth aged about 9 years, since the age of 2years having nose bleeds this, symptoms will be there once in a day or twice a day lasts for about 3 to 4 days and may rake up again in 3 to 6 months gap, he picks up the cough and cold very often, Recently two three times he developed a kind of swelling on his hand and leg I suspected some sort of allergy.
on enquiring with rheumatologist who is treating my elder son he says it is unusual to have WG in the same family because it is not a genetic no need to think of it and referred to a ENT specialist for nose bleeds she examined little area of the nose and said because of sensitivity his nose bleeds and she made cauterize in the nose and said it will take care for about one or two years if it bleeds again we may have to re do it and there is no need for further investigations .I consulted a skin specialist for his allergy like swelling he says
it is also a kind of inflammation and dose not ruled out possibilities of vasculitis and prescribed ATARAX for one week and said if he is not responding he may consider giving him prednisone low dose for about one week or 15 days, the swelling come down with in two days.
I have appointment with rheumatologist in the next week what questions I should ask to rule out
kindly help me

elephant
11-16-2009, 10:14 PM
Hi Nagesh,
I have a feeling Wegeners disease is genetic/environmental. I have four sisters- one has Rheumatoid Arthritis, one has Vasculitis (Nodosa), one had Graves Disease and I have Wegeners disease. These are all autoimmune diseases. Yes, be persistent! My sister was 5 years old when she was diagnosed with Rheumatoid Arthritis. Go to a Wegeners Disease Specialist or have your Rheumatologist contact one. Hope all turns out good. :)

Sangye
11-17-2009, 01:38 AM
Hi Nagesh,
Many Wegener's specialists think there might be a genetic component to Wegener's. Not a strong one, or you'd see it in families all the time. Having 2 family members with Wegener's is not unheard of. Please have your rheumatologist check your other son for it.

Cindy
11-17-2009, 09:25 AM
I go to UCLA and have a great doctor (Dr. Alan Gorn). After having symptoms for 15 years (or so) and no one could diagnose - I had a flare and was sent to Dr. Gorn. Within two weeks, I was diagnosed and started meds. My doc tells me that weggie people are all "case studies" meaning that where is just not enough data (but they are working on that) and our symptoms range across the spectrum. Good luck with the new doctor: Once you are in good hands you will feel much better :)

germaine
11-17-2009, 10:31 AM
I've been withdrawing from meds for quite a while, but have started getting joint pain, first knee, shoulder, than hand. It seems to subside but not really go away. I don't really feel great, but am not miserable like when I was first diagnosed. Do you think I have a problem, or is this just a reaction from withdral from the meds. Barely any swelling. The onset with the knee was instant, Walked down the hall 1/2 way, just normal, barely able to stand a few steps later. It's a little over two weeks now, but I am getting around, but with some problems. Germaine

elephant
11-17-2009, 10:42 AM
Geramine, when you say withdrawing from medicine, do you mean the doctor had decreased you medicine for Wegener's Disease. If you have swollen joints it means you have a flare of Wegener's Disease. Need to let your doctor know. What meds are you taking for your Wegener's Disease?

Cindy
11-17-2009, 10:46 AM
Germaine, I started having joint pain in January (knees, elbows, back, feet). Had an MRI of my foot which showed fluid in my foot (which the doc cannot explain). Still have elbow pain and foot pain others come and go. I have not changed any meds when this all started and it all started suddenly. So who knows - what is WG for you :( Doc put me on special exercises to strengthen supporting muscles to help take strain off knees - which has helped :)

Sangye
11-17-2009, 12:04 PM
Germaine, joint pain was my first and only symptom for almost a year. It affected increasing numbers of joints and was migratory. I had no swelling in any joints, though I was crippled with severe pain for the last 7 months of it.

Sometimes lowering pred causes temporary increases in joint pain. Something to do with the pred itself. It usually occurs when you get below 20 mg. If it's just from pred, it will resolve on its own.

However, lowering pred could also cause a Wegs flare. It could manifest as joint pain. It can be extremely hard to tell which it is--pred withdrawal side effect or Wegs starting to flare. You need a Wegs specialist to tell the difference. It's too risky to try to figure it out yourself or just wait and see.

Lowering the immunosuppressants can also trigger a flare.

Cindy
11-17-2009, 12:25 PM
Sangye,
Great info for me too - thanks.
Do you still have joint pain?
Then I went to my doc (who is the main WG guy at UCLA, I asked if I was having a flare (no med changes when it was happening). He checked it out, but could not be sure (because I do a lot of physical training for mountain climbing). So was it a flare or over training (doc asked). I too could barely walk on one foot - and it still bothers me (I wear stiff shoes so my foot does not bend when I walk). Did yours go away - I am hoping YES!?!

Sangye
11-17-2009, 12:49 PM
My joint pain went away for about 3 months when I first began treatment. I started on 1,000 mg IV solumedrol (= 1,250mg pred) and was down to about 40 mg when the pain came roaring back. My doc then was an idiot. That may sound harsh, but the guy almost killed me several times due to his ignorance and arrogance.

He insisted that the pain was the pred side-effect type. It never went away, and along with severe weakness and tons of other complications, it's been one of the main reasons I haven't been able to work in over 3 years. I began very low-level water physical therapy a few months ago-- the first exercise I've been able to do. It's 3 weeks or so that I've noticed I'm not getting much joint pain. (Other than some weird foot thing no one can figure out) Maybe the rituxan is kicking in?! :rolleyes:

I've lived with non-stop excruciating pain for 4.5 years, so I'm really hoping this is the end of it. :)

Cindy
11-17-2009, 12:59 PM
My doc then was an idiot. That may sound harsh, but the guy almost killed me several times due to his ignorance and arrogance.

That is not harsh - it is your life he was messing with! For several years that's what I was dealing with: Some doctors are so arrogance they think they can play God at your expense. Finally I refused to "try" any more of his "guesses" and found great doc at UCLA.

Good luck with the physical training :)

germaine
11-17-2009, 02:38 PM
Thanks for the quick replies, I am currently on 50 mg cyclo and 6 mg pred. Down from 150 in July and 10mg pred. I have been withdrawing very gradually, 25 mg cyclo per month and 1 mg pred. It has seemed to be working really well up until now.

germaine
11-17-2009, 02:54 PM
Hi Sangye, It is so good to have the right people to ask the hard questions. I do have an appointment with the internest Dec 2. Only a visit to emergency will change that, and I am not too bad right now, so really couldn't justify it, unless I was pretty sure it is a flare. I have done some physio for my knee and a little for my shoulder and it seems to help if I don't overdo it. I went to my GP and asked him how my blood test results were and he said everything was normal as it has been for about 4 months. I guess I would be reluctant to bump up the medication unless I was pretty sure it was a flare. Is it likely the blood tests would stay good if a flare is starting? I have been resting more. What happens if I wait a few weeks to get a clearer picture, would that be foolish. If it is just withdrawal, I guess it's a good thing?

Sangye
11-18-2009, 03:03 AM
Germaine, my bloodwork doesn't change until I'm ready for the ICU. Seriously. In '06 my lungs were fully hemorrhaging for 3 months and my bloodwork looked fine except for anemia. No inflammation, nothing to suggest Wegs.

This spring I felt the Wegs was flaring. Blood work looked fine again. Even when I started coughing up a lot of blood and the CT looked awful, the blood work still looked great. My doc started treating the flare at that point, saying if we waited for the bloodwork to show a flare, I'd be in serious condition.

If we'd started sooner, I could have avoided several months of chemo and pred. Now we know for sure that I'm a better predictor than the labwork. :D

If you increase pred, it starts working immediately. But all the other immunosuppressants (ctx, mtx, etc...) take up to a month to kick in. So with Wegs it's never a good idea to wait. Get it checked out sooner if you can, by a Wegs doc.

eileenv
10-03-2010, 04:40 AM
Hi Elephant, I kow you have mentiond before that had three sinus ops were they for musocal thickening of the sinus if you don't mind me asking

elephant
10-04-2010, 01:04 AM
Hi Eileenv, I had four sinus operations and yes the left maxillary was closing in...the maxillary hole was so small it was causing multiple sinus infections, plus my WG was not even controlled because I had two surgeries before I was diagnosed with WG. How about you?

eileenv
10-04-2010, 04:21 AM
Thanks elephant, as you know my diagnoses or conformation of it goes on. I'll tell just briefly where i am up to at present, isaw the ENT at the beginning of july ( the rheumy asked for urgent referal as i had several episodes of constant runny nose althrough he didn't specify a biopsy i knew thars what was required) ENt said i had deviated septum but said he won't do a biopsy as i have pos anca it is likely i had wegs. That urgent referal took 10 weeks, when i saw rheumy he wasen't pleased so sent me for an xray while i was there which showed left sinus was full of mucocal thickening. so he arrange a CT which just showd the same bo bony erosions. So rheumy again refered me again for urgent ent which has taken 10weeks to do a biopsy which i have done tuesday but the ent dosen't know about sinus. i have even had to put the rheumy appointment back to the 19oct so he will have biopsy result and if it was pos he was going to increase pred and start me on imuran. I'm having terrible jiont pain in my hands i can't use them a lot because of the pain and have little strength in them. I know omn the xray the left one was black.

Jack
10-04-2010, 04:39 AM
Eileen, you are receiving a terrible standard of treatment and should be banging on the table by now. I have never had to wait for more than a few weeks for any referral and my initial diagnosis was made within a couple of days of it being suggested. Blocked sinus, bone erosion and joint pain all scream out Wegener's to me and with such a dangerous disease suspected, you should be receiving some treatment as a matter of urgency. Are they at least taking regular bloods and keeping an eye on your kidney function?

eileenv
10-04-2010, 05:13 AM
I know Jack, and i have just about had enough, althrough there was no bony erosions. I don't know what i will do if the biopsy is neg not that i want it to be pos but at least i would be getting somewhere. The dermatologist should have biopsied my lesions on my leg instead of saying discoid excema i knew it wasen't that was an urgent referal and i had to follow it throug even the it took three months. Funny thing i thought you would like to hear i changed my gp because my dr's letters kept going missing, the new pratice i registrared with has about five Dr's thank goodness when i went to see this dr he was near retirement age i ask for my urea and creataline to be done has it had showed a trace of protien when done at the hospital but rheumy said it 81 the creat so kidneys were ok. but while i was at drr's i asked hime to repeat this about six weeks later he did but he said to me oh the kidneys take a couple of years to show changes i said to him do you know they are suspect that i have wegener's he then said oh i am a rheumatoligist!!!! i said oh thats a reminder not to ask to see you again his face was a picture. If the biopsy dosen't confirm wegs can i still ask to be reffered to a vasculitis center.

Jack
10-04-2010, 05:24 AM
he said to me oh the kidneys take a couple of years to show changes
That is terrible! Mine failed beyond recovery within a couple of weeks. :(

eileenv
10-04-2010, 06:34 AM
I know jack, that was the first thing that came to mind. Was it your blood work that first alerted or jusr you not feeling well.

Jack
10-04-2010, 06:55 AM
I was in the ENT ward at the time and they were still trying to discover why they could not cure my sinus problems, but I was getting worse by the day with lack of energy and crippling arthritis. The actual kidney failure gave very few symptoms. A new consultant then came along who suspected Wegs. and made some blood tests. They showed that not only were my kidneys failing, but I had multiple organ problems - everything was shutting down! I was then immediately transferred to the Vasculitis specialists at Birmingham's QE Hospital where renal biopsy confirmed the diagnosis. I was given high doses of Steroids and Cyclophosphamide plus a course of plasmapheresis and was feeling well again within a few days. However, they kept me in for 10 weeks so I expect I was feeling better than I actually was.

elephant
10-04-2010, 06:56 AM
Eileenv, kidneys can go bad fast, that doctor does not know what he is saying. You can have silent damage without symptoms, having a 24 hour urine ( collected your urine for 24 hours), blood test to test your creatinine and other lab work and dip stick. Any kind of change like trace of protien, blood ...ect needs to be followed up.
The joint pain is the WG's and sounds like your not getting proper treatment like Jack stated. Need to call the Vasculitis foundation and find a doctor ( in your area who will concult with a Wegeners specialist) any doctor who can help you. I am so sorry you are getting the run around. Please keep us updated.

Sangye
10-04-2010, 12:13 PM
Eileen, kidneys can be lost in one weekend. (Lung involvement tends to move more slowly, but if someone is coughing up blood a massive hemorrhage can occur without warning.)

Bony erosion means permanent damage to your sinuses. The longer that continues, the worse your condition will be once you attain remission. Treatment is aimed at putting out the fire, and remission is what you're left with afterwards.

You need to do whatever it takes to speed things along. Call each doctor every day. Talk to supervisors, etc.... If I were you I'd call the dermy again and request an immediate biopsy of the leg lesions.

eileenv
10-04-2010, 08:20 PM
Thank you all for you replies, the ct showed that i didn't have bony erosions the dermatoligist discharged me because the lesions were disapering but she never had the benifet of my notes because it was a different trust but when i saw her lasr i tols her i was on oral steroids and she said i didn't know i said it was the steroids that had made the lesion go not your oitments i also told my rheumy that as well. Well it had now been six months since i first came on here and was asking about wegeners and althrough my rheumy has asked for urgent appointments that didn't happen i had to chase everyone. So here is my plan 1) i am going to ring the vasculitis center in st thomases in london 2) when i see the ent on thurday i'm going to ask how many people with wegener's does he see and ask while did he discharge me when he knew i sould be needing septoplasty for the deviation because it now looks like now the left sinus is full of musocal thickening and this acually shows in my face the neurosugeon could see this as well as me but i told rheumy he said in a letter back to my gp she thinks her left cheek is swollen. I have for twety five years given my best and beyond to the nhs and now when i need the care it is very slow coming and am thought of as a hypochondriac. Well thanks for letting me let of steam i'm now going to call ST Thomases in London i will let you know how i get on.

elephant
10-04-2010, 09:14 PM
Eileenv, the doctors thought that I was a hypochondriac and so did my family....is the hole to the left maxillary almost shut? IF so they need to go in there iand open it up. But need to get this undercontrol first ( the Wegs)...You go girl!
So glad you are calling the vasculitis foundation.

Sangye
10-05-2010, 12:46 AM
Eileen, most of us have been called hypochondriacs at one point or another with Wegs. I wouldn't blame that on the NHS!

I'm glad to hear you've got an action plan. :smile1:

eileenv
10-05-2010, 06:50 AM
Thank you both for your support, i rang the vasculitis centre this morning but i coulden't get a reply and i had to go to london witha friend for her hosptital appointment. I have my nasal biopsy thursday and in the evening i have made an appointment to see my gpand ask him if he can give me a referal letter also my last gp said i have to ask to be discharged from the rheumatologist i'm seeing, but i will ring up the vasculitis center first thing in the am. Elephant this is what rheumatologist wrote to the ent about my sinus ct(This lady's CT scan of her sinuses confirms that she has musocal thickening in the left maxillary sinus but the meatus is patent .Fortunately there are no bony erosions Her ANCA test remainsweak positive and therfore her diagnoses of wegener's is not established and that is why i feel it is important that we get a tissue diagnoses.) MY left cheek is puffy and has been for two years, can i ask elephant is this musocal thickening a symptom that occurs in wegs. I also have cervical and lumbar osteoarthritis thats why i had to stop work. it's when i hear of people on here who have problems with nerves in there feet and legs, i had prolapse repair in 2006 and three weeks after that i had like a pulsating in my left foot it's not like pain but is horrible because when it starts it is relentless, my gp at the time said it was probally where they worked to near the spine and it will settle four years later it still there, i ask my rheumatologist for a emg nerve test on my lower limbs (the neurologist sugested this because of what the mri showed on lumbar regeion showed when i ask the rheumy last time i saw him he said there is no need for one. he done one on my arms and this a trapped nerve effecting my arm neuropathy of my left elbow and a return of the carpel tunel which i had operated on. I think now looking back that could of been the start of wegs fours years ago who knows. Anyway thanks again it means a lot to me to have you support and knowledge, i will keep informed of the happenings as they unfold.

JanW
10-05-2010, 09:22 AM
I had musocal thickening and I STILL don't know what it is (but I am also c-ANCA positive with a saddle nose which made me a pretty easy diagnosis, for what it's worth).

I don't have any sinus problems because of it - it was only known because of my sinus CT.

elephant
10-05-2010, 11:37 AM
JanW , I bet if you were to have another CT scan of your sinuses , it would be much improved from the methotrexate. How is your foot/ankle?

JanW
10-05-2010, 11:54 PM
Hmmm...the thickening can go away? I had no idea! My ankle is not bad at all. I have something called a dyna splint that I wear at least six hours a day to keep the foot in dorsiflexion, which basically is stretching in the direction that I have the least range of motion. The pain and inflammation was definitely alleviated by the slight uptick in mtx.

elephant
10-06-2010, 03:45 AM
JanW, as long as there is no permanent damage, I was told by the ENT , that if this was caught sooner that I would of been basically healed ...meaning once the medicines kicked in and knocked WG on the floor...
I have been complaining for over 10 years that my left cheek was tingling...had a CT scan done and showed inflammation, but it was not really addressed to me by my doctor. They were more worried about a tumor in the brain. So I really thought nothing of it because my doctor basically thought it was a allergy or infection. Anyways, so whole time I thought I had allergies. So it is so important to stay on top of any minor detail...esp with WG.

eileenv
10-06-2010, 04:29 AM
Hi Jan, I go to the ENT on thursday for a biopsy, so perhaps he will be able to tell me more. I am cANCA and have had two episodes of sinus problems in january. If i'm right i remember you saying you had a high pr3 mine was 32, you have problems with your foot, how is it now?

JanW
10-07-2010, 02:59 AM
Yep, my Pr3 seems to be quite a bit higher than lots of folks around here -- about 52. Think it was 78 at diagnosis.

My doctor was saying that a few years ago doctors were thinking this was going to be the next big thing in terms of determining disease activity. That turned out to be wrong, though.

The foot is doing better!

eileenv
10-07-2010, 05:34 AM
Glad your foot is is feeling much better,i had already started on pred and my ANCA was done a few moths later. Am i right in saying that even if a biopsy is negative that it could still be wegs?. I go for my biopsy tommorow and am waiting to hear back from the nurse at the vasculitis clinic.

freakyschizogirl
10-07-2010, 05:52 AM
Yes Eileen. My first biopsy was negative. But it was definately the wegs. It depends how deep the surgeon goes. I was told by my ENT it depends on the surgeon, if ya get a good one or not. Arn't the NHS so helpful?? lol.

Sangye
10-07-2010, 06:09 AM
Jan, my PR3 at diagnosis was higher than the measurable range. I don't know what it's been like for awhile, though. For a long time it just kept going up and up, even though I was better than at dx. That was while the Wegs was still active, but smoldering.

eileenv
10-08-2010, 06:21 AM
Hi all, I thought i would let you know that at the ENT today he will book me in as a day case for the nose biopsy and i told him that i wasen't going to see my rheumy any more, don't know how long i will have to wait for this so much for urgent. Now i will go to see my gp and ask for a referal to either St thomases or Addenbrooks. I have to go and see my Gp because my BP was high and my pulse was up but that could be becaude i was nervous. It's funny with these docters they seem to disagree so i will be glad to see the vasculitis consultant. Sangye do you know if there is a range for the for the pr3.

freakyschizogirl
10-08-2010, 06:23 AM
what is PR-3 my Rheumy mentioned this but i have no idea....

eileenv
10-08-2010, 06:55 AM
PR3 are the antibiodies, Janw was saying they thought the higher the PR3 was determined how active the wegs was but research has shown this not to be the case. I'm sure others will be along who know more will help.

Jack
10-08-2010, 07:04 AM
This is all to do with the ANCA test that you may have heard everyone on here going on about. PR3 is the antibody particularly associated with Wegener's. However, the test has lost a lot of its initial promise as more and more Wegener's patients present with a -ve ANCA test result. It is still widely used as additional evidence of Wegener's, but a -ve test result does not rule it out.

JanW
10-09-2010, 12:06 AM
Yep, Jack is right, they test for both at the same time. Thinking was when the antibody was first discovered, testing it continually it would steady lowering to zero if you were truly in remission. Apparently they have thrown this thinking out the window. Mine has been stuck at 50-something for months now, although all of my other numbers are normal. Like ANCA, for me it may always remain positive.

Like it or not, the rheumy has always got to look at/listen to the patient. That's why these docs I saw at the Symposium are not only great researchers, they are also wonderful clinicians who see beyond the disease and talk to the patient about what they are experiencing (you could really tell that most of them have good bedside manner -- they seem like 'people persons'. I wish every wegs patient could have that because seriously, if your doc is just reviewing your blood work, he may not be getting to the heart of what is going on with your disease activity.

elephant
10-09-2010, 02:43 AM
Very well stated Janw!