hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?
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hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?
I think that in general, you know about it when some of your original symptoms start coming back. For others (by no means all!) their blood results start to creep out of their new normal range.
In my own case, the state of my sinuses is a good indicator and this was also the first symtom I had when developing Wegener's. However, renal problems can creep up on you with little in the way of symptoms, so you need blood results too.
Hi Summer! As Jack said, usually it's when your original symptoms start creeping back. You can also have a flare and not know it, like me :) Apparently accoring to my blood tests, I was having a flare (high ANCA) but I didn't feel any different, a bit tired maybe but that could have been anything. Goes to show that you need to keep up with regular checkups and stay in touch with what your body is telling you.
Do you think you're flaring now?
You don't note how often you are seeing any doctors about this disease or which specialties they represent. I'll look for your earlier postings to see if those questions are answered. Regardless, flares tend to come once you've been moved to lower doses of the primary drugs your doctor's using to bring your immune system into control. Jack and Andrew's responses, too, offer you excellent direction on this question. If your doctor sees you monthly, he/she probably sees blood and urine test results frequently enough to form a sense of trends in your measurables and whether they represent improvement or concern. If, between your regular visits, you experience symptoms, you may want to give your doctor a call, at least, to give him/her a chance to evaluate your concerns about a possible flare. This is a potentially fatal disease, so your doctor should understand if you have a few false alarms until you zoom in on how your body feels and understand better what the creatinine numbers mean, for example, or why you should be concerned about blood in sputum, nasal discharges, or, um, well, etc.! Hang in there! Maintain your positive attitude, and remember this is your forum to use for questions, concerns, frustrations, and joys: we all care because we've been where you are!
Is Greensville close to Greensboro?
I go to the doc once a month here and then labs once a month. and they fax my labs to the Cleveland Clinic in Ohio every month. I found out i had wegeners in march. they put me on cytoxin and pred. i was having a real hard time. my kidneys started to fail so they had to put me on dialisis. i spent about a month and a half in the hospital that time then got to go home for about a week and ended back in the hospital because i was having sicuers. they kept me for 1 week that time then sent me back home. then about two or three weeks later i was back with phumonua for a little over a week and in between all that they took me off the cytoxin for about 2 weeks cause my hemo. level dropped. they keep having to give me blood. then they sent me to Ohio to the Cleveland Clinic to see if wegeners was in my head and it is. so they took me off of cytoxin and put me methotrexate i take it in pill form... all in one day... thursday was my 4th week on it.... but it seems to make me feel bad for about 4 days after i take it.. is that normal? and does everybody else hurt often and alot? and just feel weird..? and also my nose bleeds and hurts everyday.. is that normal and i cant get rid of my headaches for the past few days...?? any advice??
Sounds like you're having a bad time of it and it is not under control yet. It can take a long time to get the medication you require just right and even then, things change.
In my own case, the nose bleeds stopped once I had been diagnosed and recieved my first, very heavy doses of medication. As for pain - yes, all the time, but mine is the result of long term medication. For most of my time with Wegener's (after treatment), pain has not been too much of an issue.
From what you say, you are taking your Methotrexate in pulse form. I did not get along at all well with this method. It failed to keep things under control and made me feel bad. I would ask about taking it daily instead. How much prednisolone are you taking?
I'm so sorry about what you've been going through, and I'm very happy to know that your docs are working with CC Weg's experts. I'm surprised that they took you off cytoxan when Wegs was causing seizures. Usually they put you back on it if Wegs affects your brain. But clearly the CC docs have good reason-- maybe it was too strong for you.
First, given that you already have Wegs in the brain, please call your doc ASAP about the headaches. That's often a sign of trouble.
We all react to the drugs differently. A lot depends on your Wegs and the shape your liver is in-- how well it can handle some of these drugs. Other variables are hard to figure out.
Pain and feeling weird are common. It can get better, but in your case it probably will take awhile. You've been through a lot and the Wegs is not under control from your description.
Take it one day at a time right now. Don't project too far into the future, thinking you're always going to feel this way. With Wegs, the one thing you can count on is that everything changes. :)
there cutting it down by 5 mg week. im at 40 now
thank yall so much!! i'll be in touch..
Hi Summer,
You've found the right place for a world of info and not only that......
make sure you visit this site on even your worst days because people on here have a sense of humor and somewhere, somehow they can make you smile.:)
Just live day by day for now and know that things WILL get better.
It sounds like you are in good hands as far as the Dr"s and the treatment.
As far as a flare up, you'll know. It is different from just having a bad day and doesn't go away without help.
Sometimes I check into the forum just to see what people are talking about.
Most of the time it is helpful info but more times it is just people from all over with something in common that bonds us together like the infammatory and immune suppressant drugs we have to take.:D
Best Wishes to you and hope you have many good days!
thank you!
Joint pain and myscle pain is my first clue.
I don't know how to start a new thread so here it goes. How do you know if you have a cold or a WG flare. I have sinus involvement, so it is so confusing. Feeling more stuffy and sinus pressure in my left maxillary. Doing the nose rinse and no green/ yellow. A little more tired. If it is a cold how long does it take for it to go away? Since we are all on immunosuppressant medicines, I know it takes awhile. In the last 4 days, I feel my "cold" is not getting better. So confusing?? It's harder when you try to diagnose yourself.
It can be really hard to tell. We thought I had pneumonia that was unresponsive to antibiotics or was just taking longer to clear up because of being immune-compromised, etc... It was a Wegs flare.
I have certain signs/symptoms that are indicative of Wegs activity for me. Do you have anything like that?
Best way for me to tell the difference is to look out for multiple symptoms. The first used to be nose crusting, but if it was followed by rheumatic joint pain and perhaps bloodshot eyes then it was definite.
Jack and Sangye, I thought about the multiple symptoms. I did a body check this morning ( no red eye, no joint pain, no bleeding from nose/ lungs, able to breathe OK, no fever). My biggest sinus problem is the left maxillary ( 4 surgeries) so right now it is feeling a little tight. I see my local Rhuematologist and I will see if she would know and maybe perhaps she might have to call Carol Langford if symptoms get worse. I like checking with you guys because you usually are able to come up with a answer ( 99%) of the time. Thanks for the input, I am kinda freaking out. I guess I need a good dose of chocolate!
I totally understand the freaking out thing. I hope it's not a flare, just something simple. I feel safer checking in with everyone on here, too. :)
Jack, that kinda sounds like me when I flare
I just went to the ER today with severe face swelling and pressure. Couldnt breath through my nose and my right eye was giving me trouble too. Heavy chest no fever or mucas but the blood pressure was up 158/111 I was neverous. i gained 4 pounds while sleeping last night too. I was lightheaded and very tired. Swellingin arms and legs too. Not bad but uncomfortable. They called the RA and put me on a zpack with afrin and pain meds. After the chest xray and labs came back good. They asked what they could do I said check my kidney function pleaseeeeeeeeeeeeeeeeeee. So off to the lab with the tube. Came back okay. I thought I was falling. i see The RA wednesday and the pulm doc friday. hope they are right about sinusitious.
It sounds like sinusitis, Onatreetop. At least I hope it is rather than a flare. I hope you get feeling better soon and have a good RA that knows WG. Do you have a good ENT and Nephrologist?
Just the Ra and prim. I need to look for the ENT next. Have a first appointment with pulm doc friday. I hope the z pack works.
In my personal opinion the z-pak is not a very powerful antibiotic. So if you don't get better you might need a stronger one. Or it could be a Wegeners flare too. Did they check your heart? Congested heart?? Sorry, just my blood is boiling. Like, Jack said you probably need a low dose of lasix to get rid of some of the fluid. Just so sorry your going thur this... I am here if you need me.
I really question a diagnosis of sinusitis. That doesn't explain fluid retention, heavy chest, wt gain or high bp. Please call one of your regular docs today.
In my experience, ER docs are not that skilled at diagnosing. They tend to look at a small group of symptoms and jump on them with a drug. That's probably sufficient for the majority of patients in an ER, but not for Weggies. ER docs' job is to rule out immediately life-threatening issues and get you out of there. You need a thorough evaluation, Onatreetop, and the diagnosis should explain your symptoms.
Sangye, You're right. It cant be just sinusitis. And You're right about the ER docs as well. Only a good Wegs Specialist can give a proper and thorough evaluation of us Weggies.
Hi, recently I have met 1 clinic doc and 1 hospital doc that knew what I was talking about when I told WG. To me that sounds like a big step forward. Once they learn to diagnose with a simple test, we will have an "epidemic" me thinks.
In any physician training (medical, chiropractic, naturopath, etc...) you must learn about every disease. What I learned about Wegs was the same as what most MDs I've talked to learned :
"Very rare autoimmune disease, lungs/kidneys, high mortality, will likely never see a patient with it."
Most of the doctors I've encountered (ER, regular, etc...) have heard of Wegs and many knew this summary description of it. Regular rheumy and pulmys knew how to diagnose it. None but the Wegs specialists have any idea of how to treat it properly. That still leaves a lot of Weggies undiagnosed and/or untreated.
I was fortuinate in that the pulmonologist who took over my treatment actually had experience with WG patients, but, more importantly, is a very conservative doctor who regularly- and still- consults with the University of Colorado rheumatology department head who is the true expert on WG.
One thing I found impressive along the way was how the nurses, on learning I had a rare disease, actually Googled for more information on the disease, mostly for their own knowledge, but also so they could share print-outs with me. That added information helped me when I tried to explain to my family back in Nebraska what I had and what the doctors were doing to help me. There were many excellent doctors involved in my care, but there were many more nurses involved in may care who also were part of my support group. Hurray for nurses!
I found this too on my last stay in hospital. Many of the nurses and all the student doctors went away and did some homework on Wegener's. It might save someone's life at some time in the future or at least save them from the crap that many of us on here have been through.
Doug and Jack, how right you are. While my son studies WG and other immune diseases quite in depth, this will probably be the only once they get to even talk about the disease let alone see a paient with WG, so its not surprising that by the time they start to practice all they learned about the disease hs been lost. \it is also so true about the ER docs. I actually blame the ER for my problems with my feet neuropathy. If I was not sent home with the "your feet numbness and burning sensation is due to steroids you take" and actually given more steroids or started on cyclo sooner I could probably walk normally today.
Is your son studying medicine Jolanta?
Yes, his is in his third year
Great, then we will have a spec here :)
Hi summer, I think it is important to reduce more slowly at lower doses. 5m off 40 is only a small percentage but when you get down to 15mg it is a 1/3 of your dose and then it seems problems occur.
I was happily reducing my medication and was down to only 6 pred and nothing else, and guess what - no surprise except perhaps for my internest. He has now recommended a rheumatologist. What is the difference between to two of them. I asked my internest about milder preventative medication to just help with maintenance and he seemed reluctant to look at anything but proxytox which is a form of chemo. He claims it doesn't do me ANY harm at all? I have been put back at 50 mg proxytox and 30 mg pred. What a long trip back. I had an interesting progression of symptoms as I was withdrawing. First knee, shoulder and hand pain - nov. I did a bunch of physiotherapy and it seemed to resolve the problems within about a month except hand numbness? *I didn't know that was a problem?? In early dec after a further reduction in medication I had a most terrible day of dizziness, I could not walk, and had to be held up. Next day fine, except when I lay down at night, every night since then, I do my 15 sec spin. My hearing seems a little impaired too. after that increasing fatigue and finally the dreaded head/eyepain that was a precurser to me losing my vision a year ago, just in time for the New Year. I look at this and wonder how much is WG? How much is withdrawal. The upped meds immediately killed the pain, but the fatigue lingers. I am waiting for the change of doctors, so feel a little uneasy. Any ideas?
All I know is that procytox is Cytoxan and definitely harms the body and causes fatigue.
I could be a combo cytoxan and WG flare your having. Sorry to hear that. Germaine do you have a Rheumatologist that specializes in wegeners disease?
Thanks for explaining what procytox is, Phil. I've never heard of that. I can't believe any doctor would be dumb and/or arrogant enough to say any drug doesn't do harm. Even aspirin does, for Pete's sake.
Germaine, an internist is a general practitioner (aka family doctor, primary care physician, PCP). A rheumatologist specializes in autoimmune diseases. You definitely need a rheumy overseeing your care. Even if you had the most straight-forward case of Wegs, an internist is not skilled to oversee your care.
If you're having the same symptoms that were Wegs before, they're likely Wegs now.
Thanks for the feedback. I knew I could count on you. In Canada an interist is definitely a specialist in internal medicine. We also have interns. I guess it is just a labelling thing. I have been asking and I guess the rheumatologist specializes in autoimmune diseases, but I am not really positive. Right now I am waiting to get an appointment. I am Ok, but am not real sure how things are going, so it is making me a little anxious.
Hi, I too, have been living in a vacuum rergarding the disease, but thanks to Andrew and all the talk here I am so much more educated now. An in-ternist in Canada is a specialist on diseases in your tummy, intestines etc. I trust mine to know about my kidneys, but ENT, Rheumy and others are needed also. Have one for lungs. Good luck to you in finding out more. Moyan
Moyan, do you have kidney involvement? If so, you should also have a nephrologist on your team. If not, the rheumy can work with your internist to keep an eye on your kidneys.
Internists are the same here in the US. But there are still GI specialists, nephrologists, pulmonologists, etc....
Yes I do, but he is on top of that, seems to be his main area. Moyan
Ok Well I had aching legs last night and this morning my ears changed pitch . I have never thought of the aching legs as a sign of a flare until i Found this forum a week ago . My tell tail signs are severe headaches and deafness a . These are big signs .. but have never listened to my body for the little signs . I just thought all these crazy little thngs happening to me were just normal .
The issue with my Boob may just be WG related ?
Hello nat
Ii can't remember if you are on pred, i have found when i have over done it, my legs ache and also i get like restless legs, i always thought it was from the pred but from what i have read here it may well be wg, its seems a lot of us have problems with our legs. With your other problem, it could be wg but remember our treatment leaves exposed to a whole range of infections that would normally not bother us. Hope u r feeling a bit better today.
true Sharon. Might be reading to much into it ,, come on lab tests ! .. I always think the worst then work my way back from there lol.
Natalie, one of the most important things I've learned about Wegs is that you can't rely on lab tests alone to tell what's going on. The Wegs specialists rely heavily on signs and symptoms, which often show Wegs building before the lab tests go out of range. (Apparently Wegs read the lab book and knows how to cheat the exam....)
If your boob wound is Wegs it's harder to treat than infection. The only way they'll be able to tell is to biopsy the tissue. It's a very simple procedure-- just numb a small area in the office and take a tiny piece. They often do 2 or 3 biopsies at once.
ok thank you for the info again Sangye .. just a bit freaked but i will get there :)
Natalie, I know how you feel. I think I had a month of freakiness....then it subsides. I had a breast biopsy 15 years ago, it was not bad at all. You will do great.
If there's an open wound it's not the same as having a breast biopsy. It's much easier! They numb the area and then use a little tool to cut a tiny piece (2 to 3mm) of the wound. The only thing you feel is the tiny injection of the lidocaine in the beginning, but it's not that bad--very small needle. The biopsy is so tiny it only requires one stitch to close it. It isn't very deep, either. I was pretty freaked out the first time I had a wound biopsy--the leg ulcers I had were already excruciating and I couldn't imagine doing anything more painful to them. But it's really nothing.
I've freaked out so many times with Wegs I wish someone would pay me for doing it. :D My Arizona therapist would tell me, "It's okay, let's just reel it back in now." I love that. It always calms me down and I realize I have the power to control where my mind goes. Hang in there, Natalie. You'll be okay. :)
Its not the biopsy Im worried about Its more of what comes back . Im getting ahead of myself i will be fine got GP visit Monday and we are ringing my Specialist then To get him up to speed . :) oh happy mothers Day to all .
I'm glad you're on the road to getting answers!
Hi Natalie
Hope everything went okay on Monday
Col 23
hi everyone , back from hospital :) all we did was rule out a few things . had a 3 new specialist looks at me .
had ultrasound that was all good
plastics guy wants breast specialist to have a look and find whats the best course of action from here .
my doc seen me and wants the breast specialist to take a look at me , and see if he can answer these three questions ..
It it just an absess that wont heal because of the immunesupressents I have been on for so long, Its it cancer ,could it be part of her vasculitis. well he ruled out cancer and there is nothing surgical he can do so good . He belives that the dressings and antibiotics are the right way from here , dosent thing a biopsy would help , reason being .. there is no mass and would putting two hloes in it help you heal any better NO .
I asked my doc about a biopsy . he has never heard of WG affecting the breast before . I told him I have heard of a case , ..:)" that right " , "yes doc thats right ..'':P
His thoughts on a biopsy are , because I have had infection there will be white cells around the blood vessels and thats what vasculitics looks like , and if it dose came back looking like Wg then we would put you on more immune supressent drugs and thats the wrong way we want to go from here . I understand that , Its very Tricky .
so long story short we are sticking with the new dressings and antibiotics see how we go , might just need a bit more time to heal ,? I feel fine other wise .
Natalie, I forget if you're already on pred. What finally worked to heal the last of my skin ulcers was putting a bit of OTC cortisone on it. I wasn't on pred by that time, and it really made a difference. It healed incredibly slowly--literally 3 mm a month-- by the time it started healing. Each of two ulcers took about 9 months to heal. I used the pred at the tail end of it, though. I have no idea if it would've helped earlier on. The worst ulcer was the size and thickness of my palm.
Hey sangye , thats interesting to know . Yes im on pred not much though 5 mg daily , gee that must have been a night mare healing at that pace and for so long .it has been 66 days since they lanced it ; so im hoping it just needs a bit more time .. I see my specialist next week Wed 16th I will ask him about cort cream .. may just help finnish the healing process off . ty
It's a tough call because cortisone can worsen an infection, but it will help decrease the inflammation if it's a vasculitic lesion. My dermy had said not to use anything stronger than 1% hydrocortisone, and just a tiny bit. The same product in an ointment made it dramatically worse. The cream was fine. From a holistic perspective a vasculitic lesion is a sign of too much fire, and adding oil to a fire worsens it. The dermy's I saw thought that was a bunch of hooey. But if I used the ointment, the surrounding skin literally blistered in seconds. Like adding oil to fire....
Natalie, so glad you got this checked out. Glad you feeling good.
Thank you Ele :)
SANGYE... I will take those points with me when i see doc next . The merry go round of doctors again hey , one says no other says yes one says maybe other hasnt the foggest :confused: no wonder WE as the paitent need to have a say in all of it , and this forum helps all of us , with past and future treatment .
I really went through the mill with the leg ulcers. All my docs were undecided and totally lost. They rarely see vasculitic ulcers and have little in the way of treatment options. They constantly want to do things that work for diabetic ulcers, which are a very different mechanism and not painful. I can't even describe the pain I was in. I was also allergic to anything sticky and had a hard time with wound dressings. The whole things was a huge nightmare.
Sangye i to have had problems with wound dressings and after surgery on to occassions had more problems with dressing site than operation site
at the moment cant let them put tape over cottonwool site after taking bloods because if they do within minutes when i take it off i have start of a rash and sometimes blisters
this happens with varios tapes and dressings DEEx
Natalie, does your wound area look "angry?" That's actually how docs describe inflammation-- red, hot, swollen. I'm asking for a reason--no time to explain right now, but I will later.
Hi Natalie
I had lots of lumps in my breasts before diaganoses which they thought was breast cancer initially and it was Wegeners. Once on 80mg pred and 25 of methotrexate they went away and have not returned. So yes you do know someone. If they hadnt diagnosed Wegs I wouldnt still have them. Lucky.
Hope your still feeling fine and its all healing.
cheers Col 23
sorry for the late reply have been run off my feet this week with my Family . ok It did look angry but once I was put on this hight dose of clyndamicin it has settled down , and just looks like superfical wound I havent seen it for 5 days as this is how long they are leaving the dressing on now . Silver base dressings they are using now , im off to doc now 9:30 .. to get a review . I see specialist first then to my local doc to change dressing . I wanted it this way around so that My specialist could see what it looks like after 5 days not being touched . i hope it looks good , I havnt had to much pain in it , just a little bit . ok I must go will fill yous in when i get home tonight . :)
Natalie-- it sounds like your wound is healing very well. That's awesome!
Natalie so glad to hear you are feeling less pain. Moving in the right direction. :)
BOO hooo not good doc visit today :( so much for wishfull thinking. C-ANCA has doubled since I seen him last which was 4 weeks ago , boob still breaking down in parts and no better . Doc Is now going to get a Biopsy Of the wound he did look a bit puzzled today . As much as we want it to be better its not .
I have A few questions to throw around on the subject If any one can answer would be much apreciated .
if this Biopsy comes back with active wegs how would the wound be addessed then ? I can remember reading someone writing that if it is vasculitis related it will be much harder to treat.
I am currently on 5mg of pred and 3000mg of cellcept daily i have been on these doses for quite awhile with no flares
My sp ecialist Is a renal Doctor who looks after my meds and blood tests .. will I need the help of another specialist to deal with this wound if so who . ?? ok that will doi for now .
Am I posting this in the right section ?? probably needs to be moved ??
Natalie, sorry to hear that. I am on 2000 mg of cellcept and 8 mg of prednisone..plus cyclosporine ( immunosuppresant drug). It sounds like your wegeners is active and you might ( my two cents opinion) need RtX ( the IV one Sangye took) to control the Wegeners disease.
Yes, I remember Sangye saying that if the wound is Wegeners (vasculits) then it takes awhile to heal.
I agree with Elephant-- sounds like active Wegs. Only a biopsy of the wound can tell if the wound is a vasculitic lesion or if it's "just" infection. If it's related to Wegs, then proper Wegs treatment will help it to heal. If it's infection, the pred and Cellcept will complicate the healing by making it more susceptible to infection and cause slower healing in general (pred side effect).
You really need a rheumy to oversee your care. There's just no way a renal doc can handle the wide range of issues.
thanks for the reply elephant and Sangye I will be all over this when I see doc again which could be today waiting on a phone call for biopsy .
I do now think Its wags because I have been on very strong High doses of antibiotics for 22 days now and hasnt made much of a difference.
sangye how did this IV treatment affect your everyday living ?? not that I will have to take it but I will mention it to doc .. dose it have bad side effects ?? I think I seen a thread on this drug on here , will have a read : ..
Ahh Natalie,
I remember laying in a hospital bed 23 days hooked up to IV antibiotics because the drs didn't know what was wrong. All the while, necrosis was affecting my right leg and after 3 debridments, all different kinds of antibiotics, swelling up like a balloon and begging to be sent to a different hospital. 3 days after going to a different hospital, I was diagnosed. I can't remember exactly the dose of pred at the beginning. I think maybe 80 mg and 150 ctx. Healing was slow. I was fortunate to not pick up any infections and I had 3 plastic surgery's within 3 months. I was back to work in 8 months. I have been very blessed . I wish the best for you.
Most of it happened before being diagnosed. The plastic surgery's came after.
It was a lung biopsy that determined W.G. I had several large granulomas on my right lung.
And you are right, seems us weggies DO take the long way around. LOL
hi summer, i'm still waiting for a conformation of wegeners, i was wondering how did you get a diagnoses owegs in your head? was it because you had headaches.
ok well looks like my Boob issuse isnt related to wegs .. it is healing nicely and docs have taken me off Antibiotics ..It was a fistula that was preventing the wound from healing , so now that that is sorted it is healing up with no further brake downs of the skin around the wound . .. I have another blood test in about 2 weeks and see how they look .. :) Thanks all for your help in this issuse . it did help being able to hear different points of view .
So glad it's healing well, Natalie. Good news. :)
Good news Natalie, so glad you found out!
good news glad to hear your doing better DEEx
ty guys I hope she all gos away with out a hitch over the comming weeks still have my fingers crossed :) ,,
Hi Summer,
I am from SC too, I agree with everyone else responses. Personally, i will start with severe swelling, coughing, pain in my legs, inability to walk. I am NOT trying to scare you, but trips to the doctor are very important, and don't leave with questions in your head. It helps me to write down any questions I think of and ask whomever I am seeing, example phyc, ruem, pul, nueph, php, I write down the answers and compare, which leads to more questions, just breath and educate yourself.
I think high is anything above 10.
First I want to thank all of you for being here! I don't write often...only when I need something usually so I hope you don't feel used. My son was diagnosed with WG/GPA in May 2010 when he was in kidney failure. He was having some nasal symptoms at the time but there was not permanent damage and the symptoms resolved with his treatment. He's had a couple of colds over the last year but has really gotten a lot better with no active disease. Then 3 weeks ago he had various symptoms that would come and go: sore throat, high fever, weight loss, diarrhea, and stuffy nose which was constant. We spent 2 days in the ER getting checked out with tons of labs. His ANCA was at 2 last August and 3 weeks ago it was 40. His sed rate and CRP were both elevated. His kidney function was stable. 2 weeks ago he had more labs and the CRP and sed rate were lower but the ANCA was 48 and he was feeling great although he still had a stuffy nose. 1 week ago he started not feeling well again with a severe stuffy nose with symptoms that have come and gone like a hip that hurt for 4 days and diarrhea. The stuffiness is a bit better on a stronger allergy medicine but now he has a severe sore throat. So far a pediatrician, rheumatologist, nephrologist and ENT have not been able to figure this out. The rheumatologist says if the allergy medicine doesn't work then she'll try Septra and then increase his prednisone. Questions: Does it sound like a flare? Has anyone had a sore throat as part of a flare? Does ANCA increase with a virus?
For me this sounds like a flare. It almost sounds like my initial onset of symptoms. I believe ANCA can increase with a virus. I did have slight sore throat with my flares. I believe it was due to the amount of coughing I did with coughing up bloody mucus from my lungs or coughing up post nasal dried chunks from my larynx.
Yes, Sue, it does sound like a flare. What immunosuppressant is your son on besides prednisone?
He's on azathioprine. His rheumatologist said recently that her preference for sinsus/nasal flares is methotrexate but he can't take it because he has kidney damage. We live in California but we're supposed to be leaving May 11 to go to North Carolina for a nephrology second opinion and to attend the vasculitis patient day. I keep thinking there's that ENT in New York but I don't know if it would do any good to try to see him. Sue
It sounds like a mild flare, but you need to be persistant and find the underlying cause. It also can be an infection too, but I am sure they cultured his throat and nose.
Yes, they have cultured his throat for strep twice now and his nose for flu. They also did blood cultures a couple weeks ago. All were negative. I just spoke to the rheumatologist and he's going to start on septra. She said it might take 1-3 weeks to see an improvment.
Hi Sue, what do they do when they take a culture of the throat for Strep, reason being I was dx with Strep and all they did was went by the blood results and looked down my throat, 4 weeks later I was in hospital with loss of 88% kidney function, before strep it was ross river, rubella, parvovirus B19, arthritus, and gout, took a year to finaly figure it out it was wegs.
A check for strep is just a swap of back of throat which is determined to be either negative or positive.
That's the quick-strep test, drz. If it's negative and they suspect strep they generally do a throat culture at the same time because the quick test isn't 100% accurate.
Last week I had a bad chest cold and coughed till my ribs made my cry. I ended up at the ER and they gave me pain drugs that made me loopy. I got worked up, ended up back at the ER and had blood, CT, and doctors called. In the end they put me on antibiotics and i was fine. I feel so silly, it was so expensive, but the alternative was not an option in my mind. Is there something that would be a major flag that it is NOT a flare?
You did perfectly find hun. You did what you had to do. And you did well. A flare is never easy to spot. I am flaring now and didn't know it was coming.
Hi Rini, great to see you....... and I'm glad it was nothing too serious.
Bad enough that the pain sent you to the ER - I think you did the right thing as well.
You just never know with this sneaky little condition.
I hope everything else is going good with you.
Take care
Hi
I recognize when I'm having a flare as it always starts in my feet and joints. My feet were so painful before diagnoses then it progresses to joints, eyes and chest, I seem to have sort of pattern. The confusing bit for me is when I have an infection, I can never quite pick it before it
progresses. Just have to keep on monitoring and as this illness moves very quick its better to get checked out. Bloods always have away of picking up infections and flares but even that gets tricky.
Nearly lost my thumb in October 2012 through infection that spread to bone. Weeks on intravenous antibiotics.
Col 23
I am so happy to find this site, my name is Marilyn, I was diagnosed 2 years 9 months ago, after almost dying before an infection specialty MD dx me. I couldn't breath at all and had to go on life support or die. I was ready to die, and didn't want to be intubated because I had just seen my husband die while being intubated 4 weeks before. I started hurting all over, and my lower arms and legs, feet turned in and brown when I had my son take me to the hospital. Took 11 days almost dead before starting me on the right treatment came home after 16 days, fluid overloaded, 30 pounds with fluid coming out the pores of my legs and leaving sores. Not fun. I am an RN and had never heard of the disease except on TV show House. I have had questions about symptoms, that have been answered by all of you. Thanks Marilyn