some gpa symptoms- ENT advice
Hi Everyone!
I wanted to reach out here for possible advice and to share my story. Although I (as of now) do not have enough symptoms to be regarded as having wegener's, I do have some symptoms unique to GPA that are alarming to doctors. However, I see that many people struggle with a diagnosis and also my dad is actually an ENT and he has sent me to doctors he knows personally- I feel that they may be telling him what he wants to hear to some degree and that maybe I should be watching out more carefully for changes since it is so important to catch this early. (they all seem to think "hmm.. maybe wegeners.. but no. doesn't seem like it".. yet they give no alternative and clearly there is no alternative online..)
A little about me, I am 24 years old and I have had severe nasal crusting and rhinitis for a very long time, at least 8 years. I would get very large dry and mucus filled discharge from my nose that was green and brown and had large streaks of blood. Now that I treat it with the rinsing, however, I am finding that I have what I would describe more as "flakes" that can be really thin or more thick and have smaller streaks of blood on them. Has anyone had this experience?
In addition to nasal issues, throughout this time and even before I always had some respiratory issues, I was constantly being diagnosed with bronchitis. Eventually my breathing issues got worse and I was diagnosed with Asthma- but this never really seemed to perfectly describe my situation. As it turns out, I have a tiny bit of subglottic stenosis which is pretty mild but still had the doctors were worried I may have GPA because of this combination. However my blood tests came back fine last august. In the past year or two my breathing has gotten a lot worse ( I moved to New york from california and the winters are much more harsh here). For instance throughout this past winter almost every night I have had a hard time breathing for a few hours, and have wheezing etc. In addition to constant nasal crusting which I am using neilmed to treat but still comes back within a day.
The reason I am posting here is because I wanted to see if anyone else had some pretty mild and limited symptoms for many years before being diagnosed with GPA. I also was wondering if anyone has tips or advice since no one else has these symptoms (except for those with atrophic rhinitis- but I know mine is not this because there is no foul smell). For instance with nasal crusting has anyone found that drinking a lot of water helps? Also , is it typical that nasal and respiratory issues get worse in the winter or is it perhaps the case that my symptoms are just getting worse now? And would anyone recommend that I get a urine kit and just check up myself to ensure no kidney involvement, or would you keep going to the doctors and try to find a GPA specialist? Any help would be greatly appreciated. I realize that my situation is mild for now and I am grateful. I hope it is alright I am posting here when I am not diagnosed with GPA, but this community just seems so supportive and is the only one in which people have similar symptoms to me. I really want to know what to look out for so that I can be prepared too, So any advice would be greatly appreciated. Thank you so much! I am sorry this post is so long , thank you for reading.
Re: some gpa symptoms- ENT advice
I had sinus problems several years before being diagnosed with a nasal biopsy. If it is GPA do not be comforted by the fact that the symptoms are mild. This can change extremely fast as it did in my case. Have you had a biopsy?
Re: some gpa symptoms- ENT advice
Quote:
Originally Posted by
me2
I had sinus problems several years before being diagnosed with a nasal biopsy. If it is GPA do not be comforted by the fact that the symptoms are mild. This can change extremely fast as it did in my case. Have you had a biopsy?
Same for me. I saw several ENT docs for nasal crusting and bleeding which they attributed to dry air or unknown causes. I also started having other symptoms like scleritis and then roving joint pains but after a few years of this it evolved into blood in urine and kidney damage and damage in lungs and several weeks in ICU and months of recovery in rehab facilities. No one correctly diagnosed me till I was really ill and then my survival was very uncertain.
I still use a humidifier in winter months since moist air does help with nasal and sinus issues. Daily sinus rinses are also necessary for me. I am on maintenance meds for Wegs and have been considered in a drug induced remission for several years.
Are you getting any treatment like steroids for nasal spray and oral pred? Any evidence of infection?
One can have active Wegs without confirming lab work as symptoms some times seem to precede lab results. They often did for me. And biopsy can fail to detect activity.
My question for you htese44 is why aren't you going to one of well known Vasculitis centers for evaluation and consultation? Some people get diagnosed with GPA without confirming lab results or positive biopsy.
Re: some gpa symptoms- ENT advice
Thanks for your reply. This is good to know, I will definitely push harder and try to see a vasculitis specialized rheumatologist. The reason that I hadn't yet is because I was checked by multiple ENT's and evaluated by a rheumatologist and the general consensus was that I wasn't having any type of autoimmune issues (at that particular time) for instance even my sedimentation rate was normal, along with creatinine and basically every test they could possibly check for along with the ANCA's etc. So what I was told is that if all is well in that regard, rheumatologists can't help much and there is no answer. I was even told wegeners generally comes on very strong which clearly isn't always true.
As for my current treatment I am using neilmed to rinse with steroids every day but I am not on any oral prednisone due to my symptoms. Another question I have is, how was your nasal bleeding, were they actual nose bleeds or just blood on the mucus that came out? Also, do you know if it is always the sinuses because my issues actually don't involve the sinuses oddly but i seem to see everyone mentioning sinuses here...not sure if there is any significance in the difference though
But after reading stories like yours and more about this disease I realize that there isn't really any safe zone and I will definitely try to see a doctor that can set up some kind of plan where I get blood work done far more often to check for issues. Thank you very much for your input and I am glad to hear that you are in remission and doing well !
Re: some gpa symptoms- ENT advice
[QUOTE=htese44;113394]nother question I have is, how was your nasal bleeding, were they actual nose bleeds or just blood on the mucus that came out? Also, do you know if it is always the sinuses because my issues actually don't involve the sinuses oddly but i seem to see everyone mentioning sinuses here...not sure if there is any significance in the difference thoughQuote
I had both. Nose bleeds usually resulted when crusts were dislodged. After diagnosis I would see fresh blood in the nasal rinses half the time until I got into remission. Even after being in remission for years i still see traces of fresh blood in nasal rinses some times and an occasional crust that causes some bleeding when dislodged. My doctors say these are residual symptoms that wax and wane even when in remission and on maintenance drugs. During these times I use a Flonase steroid nasal spray till symptoms disappear again. Some times I take extra pred meds too in addition to my usual 5 mg daily. My inflammation markers are usually normal except during an infection. SED rate can often be abnormal cause my usual lab does not know how to do it correctly all the time since that one involves human interaction to process.
I was unaware of the damage to my sinuses until well into and after my initial treatment. Then it showed up as post nasal drip and later infections in sinuses. Damage to the sinuses is considered the most common symptom that most Weg patients experience according to my treatment team. I take generic Muccinex daily to help manage this symptom.
Are you aware of the centers listed on the Vasculitis Foundation website. They list doctors regarded as having some expertise in treating and diagnosing Wegs. I believe they can also offer free consultation with a local doctor involved in your care.
PS delayed treatment due to delayed diagnosis or incorrect diagnosis can result in serious body damage or even death as many forum members have proven.
Re: some gpa symptoms- ENT advice
I have had GPA for about 40 years. I have never had a positive ANCA test. Biopsy is a better test for GPA.
Re: some gpa symptoms- ENT advice
Quote:
Originally Posted by
htese44
Thanks for your reply. This is good to know, I will definitely push harder and try to see a vasculitis specialized rheumatologist. The reason that I hadn't yet is because I was checked by multiple ENT's and evaluated by a rheumatologist and the general consensus was that I wasn't having any type of autoimmune issues (at that particular time) for instance even my sedimentation rate was normal, along with creatinine and basically every test they could possibly check for along with the ANCA's etc. So what I was told is that if all is well in that regard, rheumatologists can't help much and there is no answer. I was even told wegeners generally comes on very strong which clearly isn't always true.
As for my current treatment I am using neilmed to rinse with steroids every day but I am not on any oral prednisone due to my symptoms. Another question I have is, how was your nasal bleeding, were they actual nose bleeds or just blood on the mucus that came out? Also, do you know if it is always the sinuses because my issues actually don't involve the sinuses oddly but i seem to see everyone mentioning sinuses here...not sure if there is any significance in the difference though
But after reading stories like yours and more about this disease I realize that there isn't really any safe zone and I will definitely try to see a doctor that can set up some kind of plan where I get blood work done far more often to check for issues. Thank you very much for your input and I am glad to hear that you are in remission and doing well !
My sed rate is usually normal and does not reflect how I am doing at all. Most Drs don’t understand that and insist that I am doing fine. I have had a positive ANCA for a few years since my last flare.
As for nasal problems I feel your pain! I cannot do steroidal spray-it really burns and makes me cry for awhile! I cannot do nasal rinses because my Eustachian tubes are easily blocked & I get ear infections quite easily. Personally I have found that Nasogel and Ayr gel have helped me so much! And as an added bonus as long as I use these products twice a day I have not had nearly the sinus infections that I normally have.
I agree with everyone here. You should see a rheumatologist that specialises in WG. By the way, people on this site are awesome and even though I have had this disease for over half my life-I learn so much through them. They are awesome!.
Sent from my iPhone using Tapatalk
Re: some gpa symptoms- ENT advice
Wg can be smoldering many years even with normal labs.
My nose was bleeding, red fresh pouring blood, after sneezing, with little effort, during stress etc. I had to hold a tissue to stop the bleedings, sometimes for 10 minutes or so. The crusts were huge, not with traces of blood but totally bloody. Getting them out caused more bleedings.
Usually nose stuff is not the only symptom. You said that you have subglottic stenosis ? It can be wg related.
Other symptoms that I had/have: fatigue (totally exhausted), red eyes, coughing, joint pains, gums' bleedings, anemia, rash, ears pains, vertigo.
I think the fatigue is allways there among all weggies. Friends, please correct me if I am wrong.
Anyway, you need to find out what are you suffering from, wg or not, in order to treat it. So finding a specialist is the best idea.
Re: some gpa symptoms- ENT advice
I have had "limited wegeners" since 1990, and your sinus issues sound exactly like what I have experienced over the years. I have never had major nose bleeds, just crusting and after rinsing and removing the hard stuff, there is streaks of blood on the mucus and crusting. It usually would come out in a round hollow relatively large piece (sorry sounds so gross!!) but another patient posted some pictures of what he was getting out of his nose and it was exactly like mine!! Anyway, over the years, Wegeners has destroyed all of my sinuses. My ENT cannot believe the way I have no sinus left. My xrays do not show the normal circular sinus, its all black, all air, no cartilage at all. Also, before my sinuses went away, my tear ducts would scar over and so for years I went through several different things as things progressed. First, my eyes would swell up underneath in the shape of an almond. My EENT would lance it in the office, it was filled with pus. After a couple years of this, with both eyes, an Eye specialist put in a little clear tube through my tear duct to keep it open. Its called a DCR I think (long ago) So are you having problems with your eyes??? Are you having any problems with ear infections? I had those at the beginning. I can see that what you are going through is so frustrating! And personally I think you may have limited wegeners. My lungs are just like yours. First bronchitis, now Asthma, I got MRSA, and now I just have limited breathing capacity. My labs are all over the place too. My ANCA is not reliable. I believe my Dr can only really go by what symptoms I have and inflammation in my labs. I seem to always have low white count. I will be checking on you!! Best of luck
Re: some gpa symptoms- ENT advice
Quote:
Originally Posted by
Lilly
I have had "limited wegeners" since 1990, and your sinus issues sound exactly like what I have experienced over the years. I have never had major nose bleeds, just crusting and after rinsing and removing the hard stuff, there is streaks of blood on the mucus and crusting. It usually would come out in a round hollow relatively large piece (sorry sounds so gross!!) but another patient posted some pictures of what he was getting out of his nose and it was exactly like mine!! Anyway, over the years, Wegeners has destroyed all of my sinuses. My ENT cannot believe the way I have no sinus left. My xrays do not show the normal circular sinus, its all black, all air, no cartilage at all. Also, before my sinuses went away, my tear ducts would scar over and so for years I went through several different things as things progressed. First, my eyes would swell up underneath in the shape of an almond. My EENT would lance it in the office, it was filled with pus. After a couple years of this, with both eyes, an Eye specialist put in a little clear tube through my tear duct to keep it open. Its called a DCR I think (long ago) So are you having problems with your eyes??? Are you having any problems with ear infections? I had those at the beginning. I can see that what you are going through is so frustrating! And personally I think you may have limited wegeners. My lungs are just like yours. First bronchitis, now Asthma, I got MRSA, and now I just have limited breathing capacity. My labs are all over the place too. My ANCA is not reliable. I believe my Dr can only really go by what symptoms I have and inflammation in my labs. I seem to always have low white count. I will be checking on you!! Best of luck
Hi there I know itÂ’s been a long time but my condition has remained largely the same and I was just looking back on this forum. I have had more negative ANCA and checked kidneys which are still fine but thereÂ’s really been no change in my lungs and nose , still struggling with those. I have no ears or eyes symptoms. So for me its been just respiratory related (lungs, nose). Due to the lack of positive labs and symptoms, dr's tend to choose not to biopsy. Also, apperantly, when looking in my nose there were no ulcers or anything to biopsy per say, just atrophy of the turbinates, crusting etc. How often do you get checked for kidney involvement or anything like that? Even though I have no diagnosis I feel pretty confident mine is some type of limited GPA. Im very scared it will become more comprehensive but at this time I feel all I can do is ask for frequent blood and urine tests to check my kidneys.. do you know how high the chance of it changing is? ItÂ’s now been about 11 years since my symptoms started
Re: some gpa symptoms- ENT advice
Quote:
Originally Posted by
htese44
How often do you get checked for kidney involvement or anything like that? Even though I have no diagnosis I feel pretty confident mine is some type of limited GPA. Im very scared it will become more comprehensive but at this time I feel all I can do is ask for frequent blood and urine tests to check my kidneys.. do you know how high the chance of it changing is? ItÂ’s now been about 11 years since my symptoms started
My symptoms also started 11 years ago.
My kidney function is checked once a year by the immunologist/nephrologist.
Anca has been negative for several years now...
No kidney-involvement till today.
