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sumsum5587
07-19-2009, 12:30 PM
hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?

Jack
07-19-2009, 03:17 PM
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.

andrew
07-19-2009, 06:36 PM
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?

Doug
07-20-2009, 03:40 AM
hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?

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!

pberggren1
07-20-2009, 04:18 AM
Is Greensville close to Greensboro?

sumsum5587
07-20-2009, 04:31 PM
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??

Jack
07-20-2009, 07:41 PM
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?

Sangye
07-21-2009, 12:27 AM
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. :)

sumsum5587
07-21-2009, 01:29 AM
there cutting it down by 5 mg week. im at 40 now

sumsum5587
07-21-2009, 01:31 AM
thank yall so much!! i'll be in touch..

Terri
07-21-2009, 11:39 AM
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!

sumsum5587
07-21-2009, 12:58 PM
thank you!

mikebonella
07-22-2009, 10:55 PM
Joint pain and myscle pain is my first clue.

elephant
01-05-2010, 01:36 AM
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.

Sangye
01-05-2010, 01:56 AM
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?

Jack
01-05-2010, 02:23 AM
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.

elephant
01-05-2010, 03:18 AM
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!

Sangye
01-05-2010, 03:36 AM
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. :)

pberggren1
01-05-2010, 04:38 AM
Jack, that kinda sounds like me when I flare

coffeelover
01-05-2010, 01:35 PM
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.

I just got over a cold. There is really very little difference in how I felt...but after a week of trying to rest as much as possible, the cold went away. I hope yours is just a cold.

onatreetop
01-05-2010, 02:55 PM
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.

pberggren1
01-05-2010, 04:45 PM
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?

onatreetop
01-05-2010, 09:49 PM
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.

elephant
01-05-2010, 11:03 PM
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.

Sangye
01-06-2010, 03:14 AM
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.

pberggren1
01-06-2010, 03:38 AM
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.

moyan
01-07-2010, 12:55 AM
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.

Sangye
01-07-2010, 01:37 AM
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.

Doug
01-07-2010, 06:53 AM
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!

Jack
01-07-2010, 08:11 AM
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.

jola57
01-12-2010, 03:21 PM
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.

pberggren1
01-12-2010, 11:07 PM
Is your son studying medicine Jolanta?

jola57
01-14-2010, 01:44 PM
Yes, his is in his third year

moyan
01-14-2010, 02:09 PM
Great, then we will have a spec here :)

germaine
01-26-2010, 03:49 PM
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.

germaine
01-26-2010, 04:12 PM
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?

pberggren1
01-26-2010, 04:43 PM
All I know is that procytox is Cytoxan and definitely harms the body and causes fatigue.

elephant
01-26-2010, 10:32 PM
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?

Sangye
01-27-2010, 02:34 AM
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.

germaine
01-27-2010, 06:09 AM
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.

moyan
01-27-2010, 07:13 AM
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

Sangye
01-27-2010, 09:33 AM
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....

moyan
01-27-2010, 09:42 AM
Yes I do, but he is on top of that, seems to be his main area. Moyan

Natalie
05-06-2010, 05:16 PM
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 ?

sharon
05-06-2010, 06:11 PM
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.

Natalie
05-06-2010, 06:56 PM
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.

Sangye
05-06-2010, 09:41 PM
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.

Natalie
05-06-2010, 10:09 PM
ok thank you for the info again Sangye .. just a bit freaked but i will get there :)

elephant
05-07-2010, 12:06 AM
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.

Sangye
05-07-2010, 12:50 AM
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. :)

Natalie
05-08-2010, 10:36 PM
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 .

Sangye
05-09-2010, 12:19 AM
I'm glad you're on the road to getting answers!

Col 23
05-11-2010, 03:33 PM
Hi Natalie
Hope everything went okay on Monday
Col 23

Natalie
05-13-2010, 08:14 AM
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 .

Sangye
05-13-2010, 08:41 AM
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.

Natalie
05-13-2010, 09:00 AM
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

Sangye
05-13-2010, 09:21 AM
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....

elephant
05-13-2010, 09:22 AM
Natalie, so glad you got this checked out. Glad you feeling good.

Natalie
05-13-2010, 09:45 AM
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 .

Sangye
05-13-2010, 09:49 AM
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.

DEE
05-13-2010, 03:59 PM
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
05-13-2010, 06:39 PM
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. Im arrergic to micropore Tape and a few others too so my boob looks a bit worse for ware atm .

Natalie
05-13-2010, 06:44 PM
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
Hi Dee, yes those tapes can be a buggar , I often forget to tell the Pathology nurses That Im allergic before they sick it on me
.

Sangye
05-13-2010, 10:25 PM
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.

Col 23
05-16-2010, 12:38 AM
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

Natalie
05-19-2010, 07:15 AM
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
05-19-2010, 07:18 AM
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 thank you Col for shareing this with me , I was told when I was 17 that I have very lumpy breasts ?? A link perhaps ? somethink to think about any way

Sangye
05-19-2010, 07:23 AM
Natalie-- it sounds like your wound is healing very well. That's awesome!

elephant
05-19-2010, 11:20 AM
Natalie so glad to hear you are feeling less pain. Moving in the right direction. :)

Natalie
05-19-2010, 05:02 PM
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 .

Natalie
05-19-2010, 05:04 PM
Am I posting this in the right section ?? probably needs to be moved ??

elephant
05-19-2010, 10:15 PM
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.

Sangye
05-19-2010, 10:57 PM
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.

Natalie
05-20-2010, 07:00 AM
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 : ..

Terri
05-20-2010, 11:46 AM
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.

Natalie
05-21-2010, 09:07 AM
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. gee wiz Terri must us weggies always have to take the long way around . Did this happen before you were first Diagnosed? or after and found that the necrosis was wegs related ?? . thank you for the well wishes :)

Terri
05-21-2010, 12:17 PM
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

eileenv
05-25-2010, 06:08 AM
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.

Natalie
06-20-2010, 08:46 AM
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 .

Sangye
06-20-2010, 10:33 AM
So glad it's healing well, Natalie. Good news. :)

elephant
06-22-2010, 02:20 PM
Good news Natalie, so glad you found out!

DEE
06-22-2010, 02:39 PM
good news glad to hear your doing better DEEx

Natalie
06-23-2010, 04:17 PM
ty guys I hope she all gos away with out a hitch over the comming weeks still have my fingers crossed :) ,,

leahrubyred
01-04-2011, 04:52 AM
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.

maria garcia
04-25-2011, 03:47 PM
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? What is considered High Anca?

pberggren1
04-25-2011, 04:09 PM
I think high is anything above 10.

sue7211
05-06-2011, 04:34 PM
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?

pberggren1
05-06-2011, 05:24 PM
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.

JanW
05-06-2011, 10:51 PM
Yes, Sue, it does sound like a flare. What immunosuppressant is your son on besides prednisone?

sue7211
05-07-2011, 03:34 AM
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

elephant
05-07-2011, 08:01 AM
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.

sue7211
05-07-2011, 09:08 AM
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.

reb876
12-30-2011, 10:55 PM
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.

drz
12-31-2011, 02:05 PM
A check for strep is just a swap of back of throat which is determined to be either negative or positive.

Sangye
12-31-2011, 02:09 PM
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.

Rini
01-24-2013, 03:32 PM
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?

pberggren1
01-24-2013, 08:22 PM
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.

mishb
01-24-2013, 08:52 PM
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

Col 23
02-01-2013, 04:09 AM
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

Marilyn
05-23-2013, 01:56 PM
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

mishb
05-23-2013, 02:17 PM
WOW Marilyn, I'm glad you found us.

I always say that WG is a sucky disease, but you certainly got given a good dose of it.
Keep looking through the search functions to help answer your questions.....or; just ask away. There are some very knowledgeable people on here.

I hope things are way better for you now ...... or at least under control.

Barbara N
07-16-2013, 05:50 PM
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?

It would be helpful to know what your signs and symptoms are. It might help others find what theirs are.

Barbara N
07-16-2013, 06:13 PM
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?

I went blind for a year and none of the doctors new why. I had a fluid that filled my eyes until it finally glued my eye lids down. I finally saw a specialist who sent me to surgery after a year of being blind and they had to cut the eye lids open and what the found they said they had never seen. Most of my eye had been eaten and I had no membrane around my eye or on my eyelids so part of the problem was they had to find a way to remove my glued eyelids from my eyes without doing more damage. I ended up getting an eye transplant and new membrane which they took from my stomach. I now know how to keep this fluid ,sticky liquid from sticking my eye lids to my eyes but the membran disappears in a few months then it it constant work for me to keep gels and saline solution in my eyes at all times.In my third operation the membrane didn't come from me but from the amniotic sac of a new born. In a short while I will have to have new membrane put in again for the fourth time-This seems to have no relation as to whether I am taking meds or not It just happens. You just never know what to expect with WG.The strange things is that I have exactly all of the same symptoms you have., vision, tiredness, pain in knee ,shoulder and hands and today I started to have edema for the first time. head and eye pain and a lot of this lead to my blindness. My ophthalmologists said we will wait just a little longer before we operate to see if the pred helps at all. I trust him, next to my country doctor he has done more for me and been so accommodating to the other surgeons letting them get biopsies and things while he is operating so as not to put me through the trauma.. This is summer, in Spain and everyone is on holiday ,Doctors included,so it is hard to know when you can get an appt.. It is really best to wait until the middle of Sept.if you can I have had dizzy spells and arrhythmia, swollen joints; this is just not me I forgot how much I need to or want to eat when I am on Pred. I can't stop stuffing my face and all sweets. >Normally never eat sweets. I hope it is a phase the passes quickly.My hearing came back in my left ear after I fell off my horse no if the right one would cooperate I could hear properly. I asked me doc. if she felt my fall had anything to do with my vision, balance and head ache, problems and dizzyness. she said no but I don't know that I agree whit her. Could they just be side effects of the pred??

Joyce3692
07-17-2013, 11:10 AM
Good question. I am new to this whole WG. I see my Renal Dr every 2 weeks and have been doing good. Last week though started feeling bad again. I suppose this is a "flare". I have read some of the other post and I need to read more to become more familiar with the different aspects of this illness. I started coughing and my "old" Dr as of today just said I have a touch of bronchial issue and to use my "emergency" asthma inhaler. After reading some post about this tracheal stenosis I am wondering if this is some new manifestation. So I guess it is very important to know your body and what it going on with it. Hope you feel better soon. I myself am looking for a Dr that will pay attention to my needs and not just put me into the same category as the normal person with "normal" systems should behave.

Barbara N
07-30-2013, 12:34 AM
How high should your creatine level get before it is considered dangerous? Mine is at 4.9. I know that is high but I heard the 10 is high in an adult.

drz
07-30-2013, 02:56 AM
How high should your creatine level get before it is considered dangerous? Mine is at 4.9. I know that is high but I heard the 10 is high in an adult.

Mine was 1.54 and that is too high but not bad for someone with 50% kidney function. Normal healthy people run 1.3 or less on the system my labs used around here.

pberggren1
07-30-2013, 12:21 PM
4.5 is way too high. You need to see your doc right away about that Barbara.

Barbara N
07-30-2013, 08:53 PM
[QUOTE=drz;71069]Mine was 1.54 and that is too high but not bad for someone with 50% kidney function. Normal healthy people run 1.3 or less on the system my labs used around h I HAVE LE

I have more than 50 % kidney dysfunction, could this be dangerous? Plus I have been flaring the last few weeks. I am back on pred though.

Barbara N
07-30-2013, 08:57 PM
I see my kidney doctor next month very srtange for doctors not to have vacation. It might mean that they are better that the others and like to have the holiday when all of the kids have gone back to school.

Barbara N
07-30-2013, 09:05 PM
I t seems to me that there are so many novices here that don't understand all of your abbreviations and words for medication that maybe we should make and easy to use and read chart with all of the important levels to look out for, what is normal, what is too high and when should you get to the hospital. and a way to keep track of whjat we have taken and when. Does anyone out there have any good graphic skill. It would help when we go to see the Dr. as well. Maybe Alysia could do it, she sems great at that sort of project as she has studied it so much.

mishb
07-30-2013, 10:13 PM
From what I can tell - different Countries seem to have different reading levels for each blood result.
I wish the Countries could all get on the same page so that then we are all on the one page as well.

Take creatinine levels for example:-
In Australia the normal levels are between 45-85 (mine are 70)
USA/Canada - normal levels are between 0.5 and 1.1 for females and 0.6 and 1.2 for males (10 or more in Adults means severe kidney impairment)
(not sure about Europe and UK)

Therefore, if a chart is made with all of the average levels etc, it will not be correct, for this being a global forum.

drz
07-30-2013, 11:44 PM
Some times labs in same area use different methods to record their results. Usually though the lab print out flags the ones that are too high or too low and the doctors compare that with your history and discuss what it means or if it warrants concern. An example, my doctors always report my creatinine levels are too high but they appear stable over time varying from 1.3 to 1.7 depending upon factors like level of hydration and recent diet. Thus they aren't too concerned about the high levels unless there becomes a clear trend or extreme spike in levels. When you follow your lab results for a couple years you become quite aware of what is normal for you and what variations in readings generally mean for you. I know my WBC goes up during an infection as do inflammation markers. I get labs done at several different places as I see several different doctors at different clinics and most are very close in results but one seems to report one test differently than the the rest so their results are always too high for my sed rate but I know this now and just make adjustment as to what it really indicates. Their result got closer after I reported this anomaly to them and last ones were almost in normal range so they must have been sloppy in their procedures or reading the test wrong.

My big red flags would be any positive ANCA, blood and/ or protein in urine, elevated liver enzymes, drop in HgB levels to abnormal range, or some new results in abnormal range or a drastic change in my usual readings. New crackles in lungs or spots on X-ray or major change in blood pressure would warrant further investigation too. We know too how Wegs affects us in terms of pain in joints, fatigue, nasal bleeding, coughing up fresh blood, or whatever symptoms we have had that suggest our Wegs is active again. This would also warrant quick action to reduce damage and danger.

Bengel
11-14-2013, 06:55 AM
No Greensville is in Hamilton,ON. and Greensboro is in NC. US.

Chadwyck
11-21-2013, 01:24 PM
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.

This was my IDENTICAL problem 2 weeks ago. Being surrounded by people who have the flu made me think I caught it. The interesting thing was, my flu lasted for an hour or so then totally disappeared!!! The next day, my fake flu returned and lasted for 5 or 6 hours then it disappeared again. The $65,000 question is... how DO YOU KNOW the difference(s) between flu/flare? I'm guessing I was flaring because common sense would tell me that you can't catch a cold/flu and get rid of it the same day.

jenniofdallas1
02-21-2014, 06:01 AM
Hi, I am new to this forum, my son was diagnosed in November. He is doing great. He is being treated at The Scottish Rite and Childrens here in Dallas. I am still processing all of this. My question is... what kind of life is he going to be able to have? He is only 14, is this something he will have to deal with forever? I have been reading and tyring to keep up. Maybe I haven't accepted it yet. What does 5 year survival rate mean. I read that on Mayo Clinic? Please help...

Pete
02-21-2014, 06:49 AM
Hi Jenni,

Welcome to the forum (aka Club Weggie). Glad you're here but sorry you have to be.

Short answers to your questions. In all probability, your son will have a near normal life. There are several effective treatments for this disease, and there is quite a bit of research going on regarding new treatments, what causes the disease, and ultimately - the cure. Since there is no known cure, he'll probably have to deal with it to some degree for the rest of his life. However, many people achieve, and sustain, remissions for many years. The five year survival rate is the percentage of people who will survive the disease for at least five years after diagnosis. With new treatments, this number will only increase.

One thing to remember about this disease is that it presents with different symptoms in different people. If your son has some odd or new symptom, it's worth a call to your doctor to have it checked out. Best case is it's a false alarm. Worst case is the disease is attacking some other body part. Early detection and treatment is your best defense.

A great asset to you will be a doctor (usually a rheumatologist/immunologist) who has significant experience treating GPA/Wegener's. You may want to ask your son's doctor how many GPA/Wegener's patients he treats or if he consults with a Vasculitis specialist (current list here: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)).

Your son should be receiving one or more of the following medications: To induce remission: Rituximab or cytoxan. To counter inflammation: Prednsione or other corticosteroid. To counter infection: Bactrim. Other drugs may be needed to counter the side effects of some of these drugs. If your doctor prescribes a drug for your son, it's important that he take it as directed. He'll probably get to feeling pretty good and decide he doesn't need the meds. Going off meds prematurely is usually a recipe for a relapse. He'll probably need to have monthly blood tests and a urinalysis. The typical blood tests are complete blood count (CBC), Metabolic panel, sedimentation rate, cardiac reactive protein. The first two show the general health of the blood stream and the body's ability to process the by-products of medications (and food). The last two are measures of inflammation and are used to adjust the dosage of steroids.

This forum has many members who have much experience in dealing with the disease. There's usually someone on here who can answer whatever questions you may have 24/7/365. This is also a good place to vent or share successes.

Dirty Don
02-21-2014, 07:25 AM
Welcome to you and your son Jenni...I ditto everything Pete said, he summed it up well and accurately (seems we get better at 'defining' WG every time we do this!). Please ask any and all questions on here...lots of experiential knowledge, even for the young ones...sighs...best to you both.

windchime
02-21-2014, 07:33 AM
Hi Jenni and welcome. As previously said glad you're here sorry you have to be. There are several parents of children that have wegs on this site. I believe they also have a FB page. I'm sure one of them will respond and give you more information about that. They will be a good resource for you as well as the rest of us. Ask any questions you need to we're all happy to help in any way we can.

jenniofdallas1
02-21-2014, 08:06 AM
Thank you so much... for your response. I feel like we have an awesome team of Dr's. He goes it seems like once a week. He is on all the meds Pete described, he had dialysis, plasma pheresis, and now his immunologist (may) want him to rec've gamagoblin (not sure of spelling) His creatin is down to 1.4, hemoglobin up to 9. They were at 2.8 and 5.5 respectively. He is being homeschooled now. Like I said he is doing much better and doc's are impressed with how he looks and feels. I just worry because ... well because. Do any of the people in this forum live in Dallas?

pberggren1
02-21-2014, 09:13 AM
Hi Jenni,

Glad to hear your son is doing much better. It sounds like he is in good hands. Wegs is not a death sentence anymore. I know many teens and younger on facebook with Wegs and they do fairly well. Most are able to go back to school and sports. If your son is on facebook, or if you are as well, my name is Phil Berggren on there and you can send me a friend request and I will put you in touch with others your son's age and parents as well.

Alysia
02-21-2014, 03:55 PM
welcome Jennie, I just want to echo what the others wrote and to send lots of hugs to you and to your son. he will be just fine.

mishb
02-21-2014, 09:26 PM
Wow Pete, you should be our official forum welcomer :biggrin1: what a wonderful explanation you have given.

Hi Jennie and welcome from me, from Australia.

I saw your post today on the Wegeners page on facebook. I'm so sorry that your son has to go through this horrible time.
I also echo what everyone else has written.
He is in good hands and I hope he continues to improve

newnormaljames
02-23-2014, 06:11 AM
Praying for you all.



Sent from my iPad using Tapatalk

Marilyn
02-24-2014, 03:29 AM
Jennie, welcome to forum, I know this diagnosis is scary, but like my doctor told me while I was still in the hospital after I was finally diagnosed with this, it is a chronic disease, you won't die from it, "we will keep it in control with the medications". He has been right!

I would also like to ask if anyone experiences a sort of low blood sugar event, even after you have eaten, where your legs feel weak and kind of like numbness to buzzing in your feet, pounding of your heart, have to lay down, too weak to stand up, and it passes sometimes after I eat peanut butter, but even my head feels fuzzy. This has happened to me before multiple times in the past, MD, just shrugs his shoulders and doesn't know what it is. It usually happens after I have pushed myself too much and not gotten enough sleep, or rest. Is this a flare up symptom? Thanks everyone for your consideration. Marilyn Maxwell

windchime
02-24-2014, 04:23 AM
Jennie, welcome to forum, I know this diagnosis is scary, but like my doctor told me while I was still in the hospital after I was finally diagnosed with this, it is a chronic disease, you won't die from it, "we will keep it in control with the medications". He has been right!

I would also like to ask if anyone experiences a sort of low blood sugar event, even after you have eaten, where your legs feel weak and kind of like numbness to buzzing in your feet, pounding of your heart, have to lay down, too weak to stand up, and it passes sometimes after I eat peanut butter, but even my head feels fuzzy. This has happened to me before multiple times in the past, MD, just shrugs his shoulders and doesn't know what it is. It usually happens after I have pushed myself too much and not gotten enough sleep, or rest. Is this a flare up symptom? Thanks everyone for your consideration. Marilyn Maxwell

Is your breathing okay? Sometimes if you're not getting enough oxygen it will take it away from the extremities and give it to your vital organs to keep you going. Just a though. Have you actually taken your blood sugar to see if it's low? If so how low is it? Eating should drive your blood sugar up not down. If nothing else it spikes depending on what you eat. Which of your docs have you shared this with?

Marilyn
02-24-2014, 10:01 AM
My rheumatologist, I don't have breathing problems, my lungs were affected initially, but have not had a problem. My ears stay plugged up 5o% of the time! but 2 ENT specialists can't find anything wrong. One time I had a "spell" and I think I passed out, but before I did I couldn't move my legs, then I didn't remember anything until I woke up, after I told my doctor he took another ANCA which was elevated to 637! Had been 60 last time. I then started the Rituxin after he increased my imuran and I had a reaction to the elevated dose. That's why I was asking if anyone had similar symptoms. I take another ANCA in March. After I had the first treatments the ANCA went down to 136. Rituxin was easier on my body than cytotoxin but still had reactions, have to take steroids to counter allergic reactions. Anyway, would like to hear if anyone has these reactions or "flare ups". I have also had increased pain in wrists and hands. Thanks for all support. Marilyn Maxwell

drz
02-25-2014, 06:24 AM
Jennie, welcome to forum, I know this diagnosis is scary, but like my doctor told me while I was still in the hospital after I was finally diagnosed with this, it is a chronic disease, you won't die from it, "we will keep it in control with the medications". He has been right!

I would also like to ask if anyone experiences a sort of low blood sugar event, even after you have eaten, where your legs feel weak and kind of like numbness to buzzing in your feet, pounding of your heart, have to lay down, too weak to stand up, and it passes sometimes after I eat peanut butter, but even my head feels fuzzy. This has happened to me before multiple times in the past, MD, just shrugs his shoulders and doesn't know what it is. It usually happens after I have pushed myself too much and not gotten enough sleep, or rest. Is this a flare up symptom? Thanks everyone for your consideration. Marilyn Maxwell

It sounds a lot like my hypoglycemic episodes but I have diabetes and am on insulin and they happen when my blood glucose levels get too low from an imbalance in my insulin levels, food eaten or blood glucose manufactured or used by body. I usually have sweating and feel too warm too which is my main clue along with weakness or dizziness.

Marilyn
02-25-2014, 10:17 AM
Thank you for your answer, I feel like it could be low sugar but it happened about 1 hour or a little less after I had eaten a dinner of tri tip, small portion beans and rice with egg in it, and salad. I feel this was a balanced meal and I shouldn't have had this episode. This has happened to me before even a half hour after I've eaten. Like I wrote before, when I had multiple spells like this, took an ANCA, my numbers were sky high! I did take my blood sugar once when I felt like that and sugar was in the low 60's. When I take my monthly lab and fasting it is in the 70's to 90's. Oh well, just wanted to check if anyone else has these symptoms. I am a nurse and very aware of my energy levels. If I push myself too much, I have these symptoms. I appreciate each one of you taking the time to read and answer. Thank you, Marilyn

drz
02-25-2014, 12:49 PM
Exercise or strenuous activity can reduce your BG levels. I feel lousy anytime mine get down to 80's. A 100 is considered normal but I usually run a lot above that so any drop to 90's can then bring on symptoms for me. I would ask for a CGM reading for your self and note when these episodes happen. Hypoglycemic episodes can be a serious problem and brought on by various things which should be checked out if you think you are having them. A reading in the 60's certainly suggests a problem to me.

newnormaljames
06-05-2014, 08:41 AM
I agree with Jack. :smile1:

cjhnsn29
08-24-2014, 02:07 PM
How long did it take to get your ANCA and SED rate down?

mrtmeo
09-08-2014, 06:27 AM
If u have any kidney involvment, using Hemastix to check for blood in the urine will tell u if u r in a flare.

cjhnsn29
09-17-2014, 11:33 AM
Summer,

My old symptoms came back mostly with my sinuse where it all begins for me. I had a new development where I was having chest pain went to hospital became anemia and had to get two pints of blood given to me in Ivs. It just hit me all at once. I see my Dr every month thats how fast it came. Just keep track of symptoms and tell your Dr.

CJ

Glenda
11-02-2014, 05:53 PM
Hello there, I have just joined this forum to see what I can find out about WG. Like you I was diagnosed in February of this year, and like you am still having a lot of trouble. My kidney function ranges between 20 to 40%, I have pain in my joints, have trouble with my sinuses, have headaches constantly (sometimes a dull ache but generally quite bad), constantly tired, feel nauseated and feel terrible most of the time. I see my Drs (nephrologist and GP) both monthly or more ofter if they call me in (due to decreasing blood results). I have weekly blood tests. Am on 25mg prednisone, have had 3 months of cyclophosphamide IV, and am on so many BP medications and still have high blood pressure. I always feel I am complaining when the Drs ask how am I. I have had to resign from work as I am so tired, weak and lack any energy. My condition is still not under control.
I am so sorry you have had to go through all this, but for me it is nice to think all my symptoms are common to people with WG, and I am not alone.
Hope you start to feel better soon.

Rose
11-02-2014, 07:47 PM
Hi Glenda

Sorry you had to find us but glad you did. Here you will find a welcome and a real understanding of what you have gone/ going through. We have all travelled that road, most of us have thankfully improved and willing to share our experiences as to what has helped us in our fight with WG so please never hesitate to ask questions.

Sorry you have not responded to treatment How long ago did you have the cyclophosphamide IV? How long have you been on 25mg prednisone? When I was diagnosed with kidney (38%) lung, hearing, joint and GI involvement, I was told that I had to have 6 months of IV Cylophosphamide. I responded so well that after the 3rd or 4th IV treatment I went into remission. The doctors were very pleased but refused to stop the treatment protocol of 6 infusions for reason "to hit it hard". I was also on high doses of prednisone during this time.....I received Solumedrol 1000mgs IV x3 before the cyclophospamide, then 80mgs for about 2 weeks then reducing about 10 mgs a month as my bloods improved.

This was in 2008. Since January 2009 I have been on Cellcept 1.5g. which has maintained remission though I have had a few minor flares. I am not the person I was before I got ill. Very few of us, if any, will return to our pre WG healthy selves but if the treatment is successful, many of us accept our new norm with its limitations and get on with life as best we can and just grateful that we are still around.

The fact that you haven't responded raises a few questions with me

1) Were you long enough on IV Cyclophosphamide?
2) Did you have IV Solumedrol? Have you been on higher doses of prednisone?
3) If your doctors feel you have received enough cyclophosphamide and you have not responded have they discussed other treatment options with you?
4) How much experience has your doctor had treating WG?

Finding an experienced doctor is difficult as there are so few of us around but a Rheumatologist has the most experience in autoimmune conditions. You will probably need a few specialist on your team including a nephrologist but most people have a Rhumy in charge managing the monitoring and arranging consults with other specialists when required. I am sure some of the Australian members will chip in here with some suggestions.

Your post could be lost in this thread. I suggest you cut and paste it on to "new members introductions"

Wishing you all the best. Hope you will get some relief from those terrible symptoms soon.

Rose

Glenda
11-02-2014, 11:00 PM
Hi there Rose, thankyou for replying. I have posted this onto the New Members site as you suggested. In response to your questions: I commenced IV Cyclophosphamide in May and had it for 3 months. I was constat\ntly vomiting during this time. No I didn't have IV Solumedrol (I don't know what this is). I was first commenced on 60mg of Prednisone and stayed on this for 4 months before gradually decreasing down to 15mg, but as the kidney function deteriorated again was put back up to 25mg and there I have stayed. The Dr wants to keep doing Kidney biopsies, but as I have a large internal bleed from the last one, I am reluctant to have another one. I don't know how much experience my Physician has with WG, but when I first got sick I have 5 Physicians coming to see me each day in hospital (I was an unusual case apparently). I don't live in a city. My Dr has talked about more Cyclophosphamide, but stated that this has the risk of causing cancer. He has also talked about methotrexate, but has decided to just watch and wait. In the meantime I have weekly blood tests. I was iron deficient after the bleed, so have had and IV Iron infusion only 3 weeks ago. My Hb is now up to 100 (still anaemic). I have a lot of pain in the joints, sinuses and headaches, but am not allowed to take anything other than paracetamol as other tablets are excreted by the kidneys. I just feel so down, tired and depressed all the time, I am sick of myself. I had to give up work which I loved, and was not prepared to leave, but my brain has been affected and it could be dangerous to others if I kept working. It is so wonderful to read stories from others that have gone through this and understand. You are all a ray of sunshine for me.

mrtmeo
11-03-2014, 05:50 AM
Hi there Rose, thankyou for replying. I have posted this onto the New Members site as you suggested. In response to your questions: I commenced IV Cyclophosphamide in May and had it for 3 months. I was constat\ntly vomiting during this time. No I didn't have IV Solumedrol (I don't know what this is). I was first commenced on 60mg of Prednisone and stayed on this for 4 months before gradually decreasing down to 15mg, but as the kidney function deteriorated again was put back up to 25mg and there I have stayed. The Dr wants to keep doing Kidney biopsies, but as I have a large internal bleed from the last one, I am reluctant to have another one. I don't know how much experience my Physician has with WG, but when I first got sick I have 5 Physicians coming to see me each day in hospital (I was an unusual case apparently). I don't live in a city. My Dr has talked about more Cyclophosphamide, but stated that this has the risk of causing cancer. He has also talked about methotrexate, but has decided to just watch and wait. In the meantime I have weekly blood tests. I was iron deficient after the bleed, so have had and IV Iron infusion only 3 weeks ago. My Hb is now up to 100 (still anaemic). I have a lot of pain in the joints, sinuses and headaches, but am not allowed to take anything other than paracetamol as other tablets are excreted by the kidneys. I just feel so down, tired and depressed all the time, I am sick of myself. I had to give up work which I loved, and was not prepared to leave, but my brain has been affected and it could be dangerous to others if I kept working. It is so wonderful to read stories from others that have gone through this and understand. You are all a ray of sunshine for me.

Hi Glenda,
Have you considered Rituximab?
Many weg's folks find it really helps when ctx doesn't.
Here is testimony from Kathy Messinger at the Vasculitis Foundation
https://www.youtube.com/watch?v=aNQ6LQMcnSI&list=PL451A815B784B2048&index=39

daystarr8
11-05-2014, 03:15 PM
Glenda..... Rose is giving you great advice. I'm a 34 year veteran and I have had many long periods fighting but hopefully soon your body will respond. Like Rose said make sure your dr knows what treatment is best for you. Maybe try something else. I know one gal didn't respond to the cyclophosphamide but did great on ritux. Hopefully you will get some relief soon. I had all the same symptoms too but doing ok now. Best to you

Glenda
11-05-2014, 08:49 PM
Hi there again everyone, I was wondering if someone could answer my questions please. Does WG cause anaemia and low Feritin levels? I have been anaemic since my last kidney biopsy in May when I had a large internal bleed. Then my Feritin levels dropped to 4. I have had an iron infusion, and the levels have improved, but as my Hb comes up the iron levels are slowly decreasing. My Dr is talking about an endoscopy to see if I am bleeding from the bowel, but have had faecal studies x 3 all of which are negative for blood. The second question is does anyone know of a Dr that treats WG on the eastern side of Australia, preferable in New South Wales? I feel this WG may be a little out of my Drs scope of practice, although he is trying really hard to help me. He just seems to worry about the renal function, and dismisses all the other symptoms I have as if they are nothing. I have even had bouts of heart arrhythmias, missing every 3 to 5 beats, but he just says it is quite normal. Thankyou everyone

daystarr8
11-06-2014, 12:58 AM
Hi Glenda
When I was on treatment for a pretty serious flare with kidney involvement. I too had low iron. I took iron daily for
Many years. I was a young girl at that time and don't know if it was the treatment medication or if it was from other complications. I do know that I have not needed iron in years and years but my kidneys have not had any problems since initial diagnosis. As far as anemia. That could be from cyclophosphamide if you are on that or any other immunosuppressive meds. But if you are bleeding somewhere both can be a sign. As for your heart. If you are on steroids they can cause palpitations increased heart rate, and high blood pressure. High blood pressure alone can cause your heart to be irritable and create extra heart beats. I'm a cardio tech for 23 yrs. if you are dropping that many beats you would feel like passing out. My guess is you are having extra beats that come early in the heart cycle then there is a tiny pause when the normal rhythm restarts. It can feel like skipped beats but most cases is just extra ones. Have your doctor order a holter monitor for 24 hours to see what's going on it's an easy test with good answers. As for locating the right doctor.... It's a must. I'm in USA so I can't help you there. I hope I've helped you where I can. Best to you.

mrtmeo
11-06-2014, 04:24 AM
Hello there, I have just joined this forum to see what I can find out about WG. Like you I was diagnosed in February of this year, and like you am still having a lot of trouble. My kidney function ranges between 20 to 40%, I have pain in my joints, have trouble with my sinuses, have headaches constantly (sometimes a dull ache but generally quite bad), constantly tired, feel nauseated and feel terrible most of the time. I see my Drs (nephrologist and GP) both monthly or more ofter if they call me in (due to decreasing blood results). I have weekly blood tests. Am on 25mg prednisone, have had 3 months of cyclophosphamide IV, and am on so many BP medications and still have high blood pressure. I always feel I am complaining when the Drs ask how am I. I have had to resign from work as I am so tired, weak and lack any energy. My condition is still not under control.
I am so sorry you have had to go through all this, but for me it is nice to think all my symptoms are common to people with WG, and I am not alone.
Hope you start to feel better soon.

Hi Glenda,
From reading the vasculitis foundation success stories, I have found that many of them that do not go into remission after a few months of ctx go on with rituximab and find relief fairly quickly.
Have you asked your dr about options?

mrtmeo
11-06-2014, 04:30 AM
Hi there again everyone, I was wondering if someone could answer my questions please. Does WG cause anaemia and low Feritin levels? I have been anaemic since my last kidney biopsy in May when I had a large internal bleed. Then my Feritin levels dropped to 4. I have had an iron infusion, and the levels have improved, but as my Hb comes up the iron levels are slowly decreasing. My Dr is talking about an endoscopy to see if I am bleeding from the bowel, but have had faecal studies x 3 all of which are negative for blood. The second question is does anyone know of a Dr that treats WG on the eastern side of Australia, preferable in New South Wales? I feel this WG may be a little out of my Drs scope of practice, although he is trying really hard to help me. He just seems to worry about the renal function, and dismisses all the other symptoms I have as if they are nothing. I have even had bouts of heart arrhythmias, missing every 3 to 5 beats, but he just says it is quite normal. Thankyou everyone

Hi Glenda,
I believe my mom has some internal bleeding, but they haven't found it, yet.
They did her EGD and colonoscopy while her hemoglobin was 7-8 and it needs to be above 10 to really find the bleeders.
Vasculitis can definitely cause internal bleeding just about anywhere.
My mom has had 3 blood transfusions since May, but is now, on Epogen which sends a signal to the bone marrow to create more blood.
I have seen a procedure on youtube where they use a double ballooning scope to go into the intestines to find bleeds.
My mom could have bleeding in the lungs, kidneys and/or intestines.

Glenda
11-06-2014, 03:26 PM
Hi daystarr8, thankyou for the information. I have been on cyclophosphamide, but that stopped 2 1/2 months ago, I am still on prednisone 20mg. With my heart beat, it beats at a normal pace at about 80 bpm the skips the beats. I have taken note of it with the BP machine and it shows the pause is the exact time where another beat should have been. My heart doesn't go any faster, be does miss these beats. Yes, I sometimes feel like passing out and once have, but the heart picks up again a beats properly for a while. I might check with the Dr about taking iron medications, about Rituximab and Epogen (if they are available in Australia) when I see him next week. Thanks for all your help.

daystarr8
11-09-2014, 09:48 PM
Hi Glenda. About your heart. You need a holter monitor for 24 hrs so they can determine I. You are truly skipping heart beats or if they are just early beats. Early beats are followed by a pause and can be quite common because MOST of them are normal Skipping beats ( dropping a beat) could mean you need a pacemaker. If your heart rate is dropping below 50 beats per min while you are awake and active that is not normal. Have a good cardiologist check you out.

andrew
12-11-2014, 08:10 PM
Moved recent discussion regarding gigi.palumboshatz to: http://www.wegeners-granulomatosis.com/forum/new-member-introductions/4519-just-diagnosed-gigi-palumboshatz.html for more visibility.... :)

daystarr8
01-21-2015, 08:17 AM
Skin rash.... I've had WG for over 30 yrs I don't ever recall having a skin rash. Can anyone send me a pic of what there's looks like. Mine is flat and red but not itchy. It's been there for several weeks now. Before the rash I had so
E soreness close to that area that felt like a bruise. No idea where that came from. Can anyone help2097


P.O.W.E.R. Positive ongoing waves encourage remission

Trish1217
03-29-2015, 07:56 AM
My son was just diagnosed a month ago. He was on prednisone 60 mg, then went down to 50, and just 2 days ago was put on 40. All of a sudden, he is having joint pain again! He has had one dose of rituxan and due for another Tuesday. Is it possible to already have a flare when he has not even gone into remission yet? He was doing so well, and his joints were fine as soon as he started getting the prednisone. His sinuses completely cleared up. Now I am concerned as he goes down on the prednisone dose he will continue to get worse. He just saw the rheumy, so not due to see him for another coule of weeks. He says he wants to space out the prednisone, because he had taken the 40 all at once yesterday, and this morning, it had been 24 hours, so he feels that's why he was getting the leg pains. Anyone else ever have this problem?

Trish1217
03-29-2015, 07:59 AM
Skin rash.... I've had WG for over 30 yrs I don't ever recall having a skin rash. Can anyone send me a pic of what there's looks like. Mine is flat and red but not itchy. It's been there for several weeks now. Before the rash I had so
E soreness close to that area that felt like a bruise. No idea where that came from. Can anyone help2097


P.O.W.E.R. Positive ongoing waves encourage remission

That looks like my son's face right now! He thinks it is a side effect of the prednisone. I'm not so sure. Very red and blotchy, I call it "mottled." He never had very many skin problems before his diagnosis one month ago.

Pete
03-29-2015, 08:17 AM
My son was just diagnosed a month ago. He was on prednisone 60 mg, then went down to 50, and just 2 days ago was put on 40. All of a sudden, he is having joint pain again! He has had one dose of rituxan and due for another Tuesday. Is it possible to already have a flare when he has not even gone into remission yet? He was doing so well, and his joints were fine as soon as he started getting the prednisone. His sinuses completely cleared up. Now I am concerned as he goes down on the prednisone dose he will continue to get worse. He just saw the rheumy, so not due to see him for another coule of weeks. He says he wants to space out the prednisone, because he had taken the 40 all at once yesterday, and this morning, it had been 24 hours, so he feels that's why he was getting the leg pains. Anyone else ever have this problem?

If your son was diagnosed a month ago and has dropped 20 mg/day of prednisone, I suspect that he has reduced his dosage too quickly, and that may be at the root of his joint pain. You may want to bump his dosage back up to 50 mg/day and see if he improves. If he does, future reductions should be done more slowly. As always, please consult with your son's doc about meds and dosages.

Good luck!

Trish1217
03-29-2015, 09:32 AM
If your son was diagnosed a month ago and has dropped 20 mg/day of prednisone, I suspect that he has reduced his dosage too quickly, and that may be at the root of his joint pain. You may want to bump his dosage back up to 50 mg/day and see if he improves. If he does, future reductions should be done more slowly. As always, please consult with your son's doc about meds and dosages.

Good luck!

My son's doctor is the one who has lowered his dose like that, it was 50 for 2 weeks, then 40 now. He just dropped it. I guess we will have to let him know if the knee pain continues.

JeanMarie
03-30-2015, 06:20 AM
Trish, I'm so sorry your son is going thru this. I agree with Pete. Doctors try to lower the dose of pred as fast as they can, but this maybe too much too soon. He's only had one dose of RTX & it hasn't really had a chance to work its magic. Give the doc a call. I've no medical background--just my thoughts. Hope he is better soon.

daystarr8
03-30-2015, 08:10 AM
Trish. It's possible the prednisone has caused wight gain and fluid retention around the joints which will cause pain. Do not stop taking prednisone it will cause severe pain. Your body becomes addicted to the drug and an immediate stop causes withdrawals. Keep in mind with this disease there are good days and bad days.


P.O.W.E.R. Positive ongoing waves encourage remission

mordeco
11-13-2015, 07:29 AM
Having a little cold and my throat is starting to hurt and my ears are stuffed.
Currently on 10mg of prednisone down from 60.
How do I know if this is a flare up or a regular cold??

Birdie
11-13-2015, 12:18 PM
Having a little cold and my throat is starting to hurt and my ears are stuffed.
Currently on 10mg of prednisone down from 60.
How do I know if this is a flare up or a regular cold??

Mighty hard to know for certain since Wegs can cause all sorts of symptoms. Even if it's just a cold, you may need a doctor to beat it with a compromised immune system. Take no chances. Even a cold can mess up a weggie and cause more severe problems.

Pete
11-13-2015, 12:36 PM
Try OTC cold remedies, extra vitamin C, force fluids, and rest. If you feel better after a couple of days, it's probably a cold. If you get worse, call your doctor. Good luck!!

timmy10
04-01-2017, 01:43 AM
I have been diagnosed with Wegeners since Dcember 2015 and initiall had a Plasma exchange although it was touch and go between that or Dyalisis due to kidney failure.Anyway after a fortnight i then had chemo for about 6 months every 4 weekly infusion but then came off it and was taking Azothioprine and Pred.Then in Nov 2016 my bloods showed relapse with it coming back so then had 2 infusions of Rituximab then high dose of Pred and Azothioprine which i am still on although my consultant has been reducing my steroids slowly.My point is through my regular appointments with my consultant and blood tests each time they can monitor me very well and see any variation quickly and act accordingley.Apart from that doing ok but get tired easy and after being an active person in my tounger days playing rugby and all sorts of things i find it frustrating that i have to stop.Its taken me a while to get used to LISTEN to my body and when it says no it means NO.

timmy10
04-01-2017, 01:48 AM
I have to say on my behalf my consultant reduces my Pred very slowly i was on 80mgs per day but now on 10 mgs but this was reduced very slowly and it works for me and this was after my Ritux.

daystarr8
04-05-2017, 01:31 AM
Well it's hard sometimes because the signs are like a cold or allergies. I gather my thoughts of what my symptoms are, how long have they been going on and are they getting worse? Do I sleep more? Are my eyes itchy too? Is my nose more bloody or is it now painfull again? It is hard for me too because my symptoms come and go. But if it's persistent and you aren't feeling the best then chances are you are in a flare. My last flare we only used steroids for a few weeks but I caught it early. I'm doing good again. I've battled this for 38 years now. I was 9 when I was diagnosed it caused a stroke then and lots of damage to my ears and sinuses. In my teens it got my airway. But with bactrim introduced in my 20's I stay pretty clear of it one 9 year remission and on my 14th year remission my last flare was last year and no drugs so I'm not counting it a battle
i hope this helps you...😁

mikecaven
08-05-2017, 02:05 PM
I want to be an encourager to all of you. I have had Wegenes since 1981. My doctor tells me I am one of the longest living. I had a relapse in 2008 and in 2010. Since then I have yearly Rituxin infusions. It is working. Doctor is Dr. John Cush in Dallas Texas. He is a rheumatologist and is well-trained in Wegeners. I am extremely healthy. I have some loss of kidney function. But my kidney doctor seems to think I am doing well. I hope this encourages all of you who are suffering because there is hope. I did Cytoxin and prednisone all three times it was active. I recommend Riituxin to keep it in remission. I am almost 70 & play golf and work out regularly. God bless all of you! There is hope.

Mike Cavender
Dallas,Tx
[email protected]

Pete
08-05-2017, 11:47 PM
Hi Mike,

I'm right with you! I'm only six years in, but still active (walk 3-4 miles most days, play the occasional round of bad golf, and keep up with three young grandkids). I'll be 71 in a few weeks. We need to keep on keepin' on!!

drz
08-07-2017, 08:13 AM
Hi Mike,

I'm right with you! I'm only six years in, but still active (walk 3-4 miles most days, play the occasional round of bad golf, and keep up with three young grandkids). I'll be 71 in a few weeks. We need to keep on keepin' on!!

Anyone older than Pete on here besides me.

meganjean26
08-08-2017, 02:02 PM
I had no idea you can get wegeners in the brain. I'm so sorry you are going though all of that.


Sent from my iPhone using Tapatalk

elephant
08-14-2017, 05:21 AM
My recent flare was nonstop coughing, coughing up blood, runny nose, tired, short of breath, tight feeling chest/chest pain and inflamed sinus causing me to have surgery, and bilateral eye pain and swelling.

Jaha
08-15-2017, 12:50 PM
I am sorry Elephant that it's come back on you. I am wishing you all the best to stomp the bad Weg's dog down again. Please take care of yourself!

Mike, Thanks for the inspiration of dealing with Wegener's for so long and being so active! Keep up the good health!

DaveC
08-22-2017, 08:28 AM
Hi, I'm new here and just wanting to ask a question. I have had GPA (Wegeners) since 2001, I have been in remission for quite some time but had a flare awhile back and was put on Rituximab and have several treatments. Back in remission now but had an eye problem, even tho the docs said it wasn't the Wegeners they want me to start taking Retux every 6 mo's as a prevention along with Tenofovir for the liver. I'm just wondering if I should refuse the Retux and all, since there is no sign of relapse? I mean would it be bad to just wait till I have a flare or relapse? I have never questioned the Docs before but last time I did Retux it gave me shingles and I had NEVER had them before and a few days after the infusion I got chest pains so bad that I ended up in the ER. Although they said they didn't think the chest pain was associated to the treatment the shingles were. This Tenofovir is to keep the Retux from causing me to get Hep B since I had it when I was 20 yrs old. I'm 63 now and never had a problem but the Tenofovir can cause Kidney and liver problems. Anyway I'm freaked about taking all these drugs when I'm not even having a flare, the drugs I've been on have caused me to have cancer, osteonecrosis in both hips and shoulders etc. I just don't know what would be best ... any help?

Pete
08-22-2017, 10:34 AM
I think this is a situation in which you need to ask your doctor to explain the why of this treatment plan. I would also ask about the most likely side effects and what will be done to mitigate them. Don't leave your doctor's office without understanding and having confidence in the treatment plan.

DaveC
08-22-2017, 10:49 AM
Thanks Pete, the treatment is coming up in a couple days and its at the VA. Its really herd to get an appointment to sit down for a talk so I guess I'm just gonna take the treatment and hope for the best. I really hate all the drugs I have had to start taking since all this started and the more I read on the side affects the less I want to take ANYTHING but the thought of what could happen with no drugs is even less appealing. I didn't read the sides until recently, maybe I should just stick my head back in the sand and go with what they throw at me, I don't know, this really sucks. Everything was going so well before the relapse, guess I should have known something was coming.

Pete
08-22-2017, 11:20 AM
Dave, you really need the time from your doc to understand this. Your life may be on the line. It's serious. Stand up for yourself, please!!

elephant
08-23-2017, 09:12 AM
What kind of eye problems were you having? rituxan can cause chest pain, I looked it up. Look at important safety information and indications.

mich911
09-18-2017, 07:30 AM
Hi, I was diagnosed with Wegs in April 2016 since then I've been on predisone & 4 rounds, once a week of Rituxan & one maintenance treatment this past April. I'm getting another maintenance treatment this coming Thursday, however, I've been sick with a bad cold for about 10 days. I'm on antibiotics but I still have a cough. Unfortunately this cold I think has started a flare in my body. I"m getting low grade fevers 99-100 and I'm very fatigued. I don't think this is related to the cold. I have a email into my doctor but I'm worried i may not get the treatment on Thursday. I really need this treatment. Also another reason why I'm probably flaring is I've been tapering since May from 5mg predisone to 1mg. I.m currently on 1 mg. Has anyone experienced this? What does the doctor do when flares happen.

Pete
09-18-2017, 08:43 AM
You'll probably have to up your pred dosage at least to the dosage where you were before symptoms began. A few years ago, I got down to 3 mg/day of pred and started with roaming joint pain. I briefly went back to 40 (I think), had my first rtx treatment shortly thereafter. I got down to 5 mg/day and decided to hold there for the foreseeable future. I'm still at 5 mg/day. I see my rheumy on 9/29, and am going to ask about trying to taper off again.

If you have an infection, I doubt that you'll get your rtx as scheduled. I hope you can get past it quickly and get the treatment you need.

elephant
09-18-2017, 11:06 AM
Your rheumatologist will order labs prior to your next treatment. This could be wegs vs infection. You can get low grade fevers with wegners flare. The ENT can do a nasal swab and get it cultured to see if you have infection. Sounds like it's attacking lungs and sinus. I had a horrible cough starting in May and it got better in July. It takes time for the rituxan to work . The prednisone will knock the inflammation down.
Let us know how you are doing.

Susan55
10-02-2017, 09:46 PM
So, how does one know if it has gone to the head? The reason I am asking is for the past year or so I get sharp pain in my head (not headaches) different just sudden sharp pain. I had brain aneurysm coiled about 10 yrs ago and they say mabye it's that. 3 months ago I had a MRI of the head (looking at the coiling) and I was told it looks fine. So not sure how they check to see if it's in the head or not? What test would show that CT Scan or MRI? Then last year my head felt funny went to the ER and they sent me home, the next day still dizzy and head pain and then when I got up to walk I just passed out and broke my wrist (November of last year). It just comes one and just goes away, it's so strange. But I can feel confused and things don't feel real around me. I just told my Rheumy last week about it and she said nothing. This is why I haven't driven in almost 9 months. I don't know when symptoms will come on. A bit scary I would say

John S
10-09-2017, 11:07 PM
Some of my symptoms started reappearing about two weeks ago. Headaches and nasal crusts were the most prominent, my eyes required a lot more drops. They quickly became much more severe. I have messaged my Doctor and she said that I should get an infusion of Rituximab now rather than the scheduled 3 weeks from now.
I looked for the definition of flare. one of them is:
"to start up or burst out in sudden, fierce intensity or activity"

mymom
04-15-2018, 12:01 PM
how high did your anca get Andrew? my mom's is now 4.1 this is her first reading.

gunnyl
10-31-2018, 09:39 AM
For me, I feel like I ran into a brick wall. My ears go through pressure changes even though I had tubes put in for the Eustachian damage. I'll get some nose bleeds, extreme general malaise, pain in the joints and muscle aches and I generally feel like I've gone from 'current age' to 96. I will dose to either 40 or 60mg of PDX depending on how severe and how far along I am and get on the schedule for an RTX infusion as soon as possible. I usually don't progress beyond that before I am on the PDX. But my GPA is very aggressive when it comes back and so I try to stay on top of it and get on medications quickly.

11-30-2018, 12:24 PM
This art of knowing when you’re having a flare is tough. I’ve been most successfully treated with Rituxan, last series of 4 infusions was in January of 2018. Since Rituxan is the best drug for me I’m forced to return to that for treatment. This flare began suddenly 5 weeks ago with severe worsening of Polyneuropathy, return of Sinus issues and a cough that won’t clear up, a headache, inability to sleep, and signs of brain, cranial nerve involvement, plus extreme fatigue, pain, etc - all Of which have kept me in bed. In May of this year I was hospitalized for a month with seizures that nearly killed me, an intensive care stay on a ventilator, and pneumonia. The cause of the seizures hadn’t been identified and I remain on two of the seizure meds out of the three it took to control them. I was on a drug called Vimpat which seemed to help quite a bit - but my Vanderbilt neurologist refuses to keep me on it. No one here in Nashville is able to help so far and next week I’m flying to Los Angeles to see the Rheumatologist who seems to be able to recognize and treat a flare with Rituxan. Since none of my inflammatory markers are up it is difficult for most doctors to recognize what is happening with clinical signs alone. Hopefully this helps some of you who are in a similar situation.

ST316
12-04-2018, 01:32 PM
Hi Kwnorton,

Did the Drs say that you can have Rituxan since you've had seizures? I do know a few people who have had seizures and the Drs often do not know the cause, but the one thing that these people did have in common was sleep deprivation. If they were overworked and short on sleep, they were prone to seizures.

Hope you're feeling better soon.
-Susan

12-05-2018, 01:21 AM
Hi Kwnorton,

Did the Drs say that you can have Rituxan since you've had seizures? I do know a few people who have had seizures and the Drs often do not know the cause, but the one thing that these people did have in common was sleep deprivation. If they were overworked and short on sleep, they were prone to seizures.

Hope you're feeling better soon.
-Susan

The Drs (at least the ones I go to) do say I can have Rituxan. I didn’t happen to be sleep deprived or overworked when I had seizures. I’ve had a history of CNS Vasculitis & cured with Rituxan although the Nashville hospital where I nearly died of Status epilepticus was clueless when it came to their crude attempts to diagnose me when I was unconscious. Moral of this story, don’t allow yourself or a loved one to enter a hospital where they’re unprepared to understand your primary health issues.
Feeling miserable in Los Angeles today.

mikecaven
01-09-2020, 12:12 AM
hi, im Summer. I have wegener's too. i found out in march. How do you know your having a flair up?

Summer, I take Rhituxan infusions twice yearly and am doing great. I developed WG in 1981. I have had 3 flares since then. The last one was in 2010. I am 72...so there is hope.

Randy1957
02-12-2021, 10:13 AM
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.
I have GPA that's really been limited to the nose and eustachian tubes. In my case, the question I have had is "how do I know if I am in remission or not?" The short answer is: in my case it's difficult to know. My rheumatologist looks more at my subjective symptoms, my general blood work and urine tests as more indicative of health than the ANCA specific blood work. He is of the opinion that PR3 and C-ANCA levels are imperfect with little predictive value when it comes to flares or assessing actual disease activity. After all, blood tests are a snap shot of a moment in time anyway. In my case, my C-ANCA oscillates between positive and negative every three months or so, my P3R levels are sometime 1/4 of what they were when I was diagnosed or almost as high. Symptoms have remained steady and associated with the initial damage done (eustachian tube dysfunction, some hearing loss, saddle nose deformity, occasional bouts of fatigue). I have had a cold since being diagnosed two years ago: it started as sore throat, slight fever, runny nose peaked in a couple of days and done a few days after that. Nothing like the month long onslaught of mucous production, fatigue and night sweats I had when I first came down with GPA. I think you just have to give things (whatever they are) a few days to run their course...if they don't clear up, then consider getting looked at. (I had both my hips replaced last summer (6 weeks apart) and was expecting to maybe have a little nosedive then from the recovery process, but so far so good.)

J@$0N
07-12-2022, 04:07 AM
How is a flare different from a relapse? I was labeled as "in remission" in Oct-Nov last year. Since I have had good blood work, but recently having a bit of joint and muscle pain again along with fatigue. Thoughts?!

gunnyl
07-12-2022, 04:43 AM
Personally I think remission is a subjective term as it applies to GPA and varies by doctor. My doctor doesn't use the term.
My GPA is under control using RTX. Sometimes I show symptoms going into an infusion and sometimes I don't. When I do, I bridge with PDN to get me to the infusion and then I taper off.
I have talked about alternative treatments but as my doctor states, "the disease is under control with RTX and we don't want to risk losing control. "
Is there really such a thing as remission when you are still being chemically treated?


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J@$0N
07-12-2022, 04:48 AM
[QUOTE=gunnyl;117843Is there really such a thing as remission when you are still being chemically treated?[/QUOTE]

I'm no longer getting RTX infusions. My ANCA numbers have been negative for the past 9 months. This is why I was curious to the groups thoughts.

Pete
07-12-2022, 11:14 AM
How is a flare different from a relapse? I was labeled as "in remission" in Oct-Nov last year. Since I have had good blood work, but recently having a bit of joint and muscle pain again along with fatigue. Thoughts?!

Roaming joint pain was an indicator of an impending flare for me when I was tapering off pred too quickly. I did manage to get off pred and still keep the disease under control. It took nine months to taper from 5 mg to zero, but I’ve been off pred for four years. My blood work is stable only showing symptoms of stage 3 kidney disease (elevated creatinine and low eGFR).

Randy1957
07-12-2022, 11:23 AM
I'm no longer getting RTX infusions. My ANCA numbers have been negative for the past 9 months. This is why I was curious to the groups thoughts.
I have been on low dose weekly MTX, Bactrim and Folic Acid for 4 years now. My rheumy and I regularly look at some objective measures: basic blood work and urine monitoring (kidneys staying well? liver handling the meds, OK?etc ) the subjective measures of how I feel are the more important take on the disease activity.

The ANCA-C is negative half of the time and just at the positive titre the other half of the time. PR3 has been low, but still positive, for a year. Even when both were positive and high, after the initial onset, I felt fine generally. I am happy the numbers are "better" but the literature isn't really conclusive on either ANCA panel being much use for predicting flares (and I have friends who have flared shortly after having negative ANCA panels) so if you are feeling pretty good that is perhaps about as good as it gets for as long as it lasts. My doc and I last year cut the ANCA panels back to twice a year instead of every three months.

J@$0N
07-12-2022, 08:06 PM
All of my other blood work is good as well.. its a bit harder for me to tell since it affected my aorta and hadn't reached the other organs yet. I also have 4 protruding discs in my neck and degenerative discs in my lower back. I've wondered if the wegs caused a bit of nerve damage.

drz
07-14-2022, 08:06 AM
My doctors have told me i was in a drug induced remission when my maintenance meds kept the GPA under fair control to the point i did not need a more aggressive treatment like RTX. i still had some residual symptoms that would wax and wane and these required changes in my maintenance meds of AZA and Pred at times.

gunnyl
07-14-2022, 09:01 AM
My ANCAs are negative but the problem is that when it emerges I will be in the hospital before my labs can catch up with the symptoms. The longest I have ever made it between infusions was 10 months and then I felt like I hit a brick wall. Been on a continuous 6 month cycle since.


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J@$0N
07-14-2022, 09:19 AM
My doctors have told me i was in a drug induced remission when my maintenance meds kept the GPA under fair control to the point i did not need a more aggressive treatment like RTX. i still had some residual symptoms that would wax and wane and these required changes in my maintenance meds of AZA and Pred at times.

Just to make sure I’m on the same page.. RTX is Rituxan, correct? How many initial doses did you have? My body couldn’t handle AZA and was tapered off prednisone after a few months of RTX..

drz
07-15-2022, 11:40 AM
Right, initial RTX was a couple before they switched to CTX for faster results. I also had RTX twice after last flare after Covid vaccination. Recently I tried Avacopan or Tavneos but developed three inflections so had to stop it.

J@$0N
07-15-2022, 10:59 PM
It is interesting how differently it effects individuals. I had a round of RTX once a week for 4 weeks and then every 6 months. My ANCA was still positive at the time I contracted COVID and was concerned, but everything was negative following. I did not opt to get the jab due to this and other concerns. So far numbers are still good, just have joint pain and fatigue sometimes.

GPA4Me
09-09-2022, 10:47 PM
Hello Summer! It's interesting that my DIL has a sister named Summer and she refers to her as SumSum. Also, my wife and I live in Florida and have considered moving and Greenville is one of the places we were looking at. Very nice area. I was DX in July 2017 by a Nephrologist. Five other doctors including infectious disease doctors could not figure out what was wrong with me over a 4 month period. When my labs showed my kidneys had failed, I checked into a nearby hospital. My Nephrologist is very educated about Wegener's so he manages both my kidney function and the Wegener's. We got the disease in remission using prednisone, azathioprine, and Rituxan by September 2019. So, about 2 years. Since that time in 2019, I have had 2 times where I was "sick" and couldn't pin the sickness on anything like the flu or headcold so I would call my Neph and tell him that I am concerned about a flare. He would have me take azathioprine for about 3 months and add the Anca test to my labs to check for that. Both times seemed to turn out ok with no trace of Anca. It's one of those things where you don't feel right but just can't identify what is causing the sick feeling. My Neph has also told me when I asked him about me having a flare. He said he looks at my urine test for abnormal amounts of protein and blood. Hope this helps. Shoot me an email if you have anything else you want to ask.

lily_0303
08-13-2023, 11:40 AM
Hey Summer,

An easy sign for me that I am having a flare is it becomes difficult to use my hand or my my foot (around the wrist or ankle) sometimes it’s one or the other and some times it’s both. Could be right side or left or a combination of the 2. If that goes untreated then a red looking rash appears usually in my legs as well. Just some things I have noticed. Hope it helps :)