just saying hi

[penguin]

Hi everyone! I'm new to the site but not new to WG, I was diagnosed last year, but have had it for years as my doctor told me there was nothing wrong with me! I'm just finishing my cyclo treatment, still on preds, but just finished school and got into university! So I'm feeling pretty good at the moment and would love to chat to people, didn't realise there were other people my age with WG!! :smile1:

[Sangye]

Hi Penguin, welcome to the group! I saw in another post that you're 18. We have several younger members. We actually have members of all ages ranging from newly-diagnosed to long-time veterans so you can ask or share anything and there will always be someone to relate to. :smile1:

I think it's great that our group has an Elephant and a Penguin. If we get a Monkey we could charge admission. :laugh:

[Rini]

HI! so what was ur major symptom? nose? lung? how did they finally decided WG? (i forgot, I said I was 18 but i just had a B-day, i'm 19)

[Psyborg]

Welcome :)

[penguin]

Thanks :smile1:
Well I'd always suffered from joint pain and kept telling my doc about it who said it was 'growing pains' and although I tried to tell them it was getting worse, even when I went in with swollen joints and rashes on my legs and arms, they would just give me antibiotics and send me away. I'd noticed that my lungs weren't very good either and had mentioned this a few times, I was given advice of different activities I could do to 'get fit'! And when I was on holiday in Spain last year I began coughing up a lot of blood and couldn't even walk by the end of my holiday - my dad had to carry me off the plane, the pains were so bad, so they finally put me in hospital, repeated bloods - the ANCA was positive and they told me it had been positive before but they had ignored it because I was so young! Anyways, had a kidney biopsy (ergh) and then started cyclo. So yeahh thats pretty much it, joints & lungs mainly. What about you guys??

[elephant]

Hi and welcome. It take a while for the docs to figure stuff out, but glad they finally did. How is your kidney function?

[penguin]

My kidneys were affected but not badly.

[elephant]

Make sure you have a kidney doctor to check your blood work.

[vdub]

Believe I read somewhere that the average dx time for wegs is 24 months. And, as far as I know, that was the case for me, at least for the part of wegs that led to the dx. I will never know, but I think my wegs might have started in 1961 when I was 10 years old. They had no idea what I had, but they put me on large doses of cortisone and I got better. I was sick for a year and then fine for the next 50 years. I'll never know if I have been living with wegs my entire life.

Welcome to the site. Sadly, we have quite a few young people on it.

[norcalian]

Yeah, I was surprised by how many young people i see on this site with WG. I was like you Penguin, joints, lungs (the kidneys came after I got out of the hospital - but it's pretty minor and it looks as though it might be under control now). I was fortunate though that I had a good primary care physician who took my symptoms seriously and ran a bunch of tests when I wasn't getting better - however, it still took getting admitted to hospital to get the actual diagnosis. I did spend a couple of years with sinus issues and then middle ear issues that i'm sure was the Wegs getting started (so I guess I fit vdub's 24 month timeframe).

Welcome to the site. I've only been here a month, but it's been an amazing resource.

[vdub]

I had a good primary care physician who took my symptoms seriously and ran a bunch of tests
That was my situation, too. My PCP was the one who dug into the books and was tenacious about finding the problem. He did a clinical dx before all the super tests were done months later. He got me started down the correct path early on. I owe a lot to him....

[pberggren1]

I had severe, fast onset of Wegs and went from perfectly healthy to almost dead in about 2 months. My parents then took me to an
ER in a larger city and I got dx in about 20 minutes.

[vdub]

I always thought you were a little bit odd, Phil..... :-)

[penguin]

Oh so i'm not the only one where it came on really slowly! most other people i've spoken to say it was really fast! And someone else with joint pain! not many people have mentioned joint pain, but that was the main thing for me. I don't really know what PCP and other letters stand for, though I know what ER is now!! its A&E in england!

[penguin]

Oh and what is DX?

[norcalian]

PCP is "Primary Care Physician" and Dx is "Diagnosis". You'll see a lot of acronyms on here. I'm still learning a lot of them.

[Sangye]

Mine started with joint pain. I woke up one day with a finger joint in excruciating pain. It was only mildly swollen and hot, but felt like it had been smashed by a hammer. Over the course of 6 months or so the joint pain spread to every joint except my spine and became increasingly severe. I had no other symptoms until about 7 months in.

[delorisdoe]

mine took at least 2 years before it got serious enough to be diagnosed. 2 years of a living hell of sorts.

[penguin]

ok thanks norcalian :)
yes the pain i experienced was very similar, when it was really bad i would describe it as feeling like a volcano that was going to explode, as mine too got very hot.
i definitely agree with you Leigh, it was a sort of hell, mine also took a long time to be diagnosed, and when doctors don't believe you it can mess with your mind too, for a while i considered i might be going insane and that my problem was a mental thing, as no physical explanation seemed to exist.
I know it all sounds a bit depressing, but it really is nice to talk to people about these things because many people didn't believe me at the time and other people just don't understand.

[delorisdoe]

ok thanks norcalian :)
yes the pain i experienced was very similar, when it was really bad i would describe it as feeling like a volcano that was going to explode, as mine too got very hot.
i definitely agree with you Leigh, it was a sort of hell, mine also took a long time to be diagnosed, and when doctors don't believe you it can mess with your mind too, for a while i considered i might be going insane and that my problem was a mental thing, as no physical explanation seemed to exist.
I know it all sounds a bit depressing, but it really is nice to talk to people about these things because many people didn't believe me at the time and other people just don't understand.

Exactly. Nobody believes in the pain until it has a name.

[drz]

Oh so i'm not the only one where it came on really slowly! most other people i've spoken to say it was really fast! And someone else with joint pain! not many people have mentioned joint pain, but that was the main thing for me. I don't really know what PCP and other letters stand for, though I know what ER is now!! its A&E in england!

What does A & E stand for to enlighten us Americans?

My GPA started with the nasal stuff for a year or two and wasn't real troublesome at first. Just annoying to have those bloody crusts in nose and little bleeding every day when I removed them. Then after a year or two the joint pain started and eventually got so severe I couldn't hardly walk. This lasted about a year or more till next symptoms appeared. The next signs were loss of appetite, weight loss and blood showing up in urine tests. I saw at least a dozen different doctors chasing the symptoms with no success except lots of things were ruled out. Finally got diagnosed when things had got so bad I couldn't get out bed, couldn't breathe, had a fever and got admitted to hospital where they thought I had pneumonia and a bladder infection. After two weeks I was choking on blood from bleeding in the lungs and lost my hearing over night. Then they figured out I might not have what they were treating me for and sent lots of blood work to Mayo where they got them on the right track and then I got transferred out to a larger hospital before I died on them. At the end things deteriorated real quick but from the first signs to diagnosis was probably 3-4 years I guess.

[pberggren1]

A & E is the same as ER here.

[Rini]

Exactly. Nobody believes in the pain until it has a name.

ya, i thought i was going crazy the first time .

[penguin]

yh A&E is just accident and emergency.
drz - mine also deteriorated quickly towards the end, as i could hardly walk either and that's when i began to cough up blood etc, but luckily my docs were pretty quick to figure it out as i had been misdiagnosed before - when i was in hospital for my joints the ANCA test was positive, but they dismissed it, so they did the kidney biopsy straight away once i had all the other symptoms. doesn't look like i got as bad as you though, i dont doubt it when u say u almost died on them, things must have been pretty scary. How is everything now, are u in remission? im curious to know if u feel completely normal when u are in remission as i have not reached that stage yet, or is it different for everyone?

[RudiK]

When I read these posts, I shouldn't complain about my doctors not recognizing the WG. It took "only" nine months for me to find a doctor who recognized it and started an agressive treatment. I'm now in remission after about 2 1/2 months of treatment. But I'm still on the full medication, except pred which has been reduced from 60mg to 10 mg. My kidneys function at 40%, and I feel generally good. My feed are still totally numb and will probably remain that way.

[Sangye]

im curious to know if u feel completely normal when u are in remission as i have not reached that stage yet, or is it different for everyone?
It's very different for everyone. Some people feel like they did before Wegs. Many people continue to have fatigue-- that's quite common-- but to a lesser degree than when they were seriously ill. The extent of damage from Wegs or other complications and from collateral damage affects what remission looks like.

[Rini]

good to know what 2 expect. It must be so different 4 every because the actual symptoms very so much anyway

[delorisdoe]

It's very different for everyone. Some people feel like they did before Wegs. Many people continue to have fatigue-- that's quite common-- but to a lesser degree than when they were seriously ill. The extent of damage from Wegs or other complications and from collateral damage affects what remission looks like.


I find remission confusing. It took me about a year to get used to the idea that it was gone and I could resume my pre wegners life. I think it took more like 4 years to stop checking for blood every time i coughed, sneezed or blew my nose. Every cold or chest infection or bout with pneumonia still brings on a feeling of dread and fear. I am no better now at knowing whether it is wegners or a cold etc. One symptom that I do know for sure means that the wegners is lingering and waiting for just the right moment to reapear is the roving joint pain. It still is better than pre diagnosis when I had horrible pain and other symptoms and no answer or end in sight. Now, I make an appointment , they do blood work etc and we decide to treat or wait it out. I am always so nervous to wait it out but I hope that I will no the difference. My track record is not so great. A few weeks ago I was feeling not so great...I ended up being admitted with two issues one of which is a blood infection that would have killed me within 24 hours had I not gone to the er. I ignore my symptoms so much that I actualy went to work the morning I was admitted. I was in really bad shape. This waiting and seeing totally messes with my confidence in my ability to know when my body is ill.

[penguin]

thanks guys :) like rini said its good to know, but that everyone is different.
that's another thing im worried about - whether i'll be able to tell if im having a relapse or not :unsure:
but hopefully it will be ok and i will get used to it!

[delorisdoe]

ten years later and I am not used to it. lol. It does help though knowing what it is you have so they can treat when you are relapsing.

[mishb]

Mine started with joint pain. I woke up one day with a finger joint in excruciating pain. It was only mildly swollen and hot, but felt like it had been smashed by a hammer. Over the course of 6 months or so the joint pain spread to every joint except my spine and became increasingly severe. I had no other symptoms until about 7 months in.

Was nearly exactly the same for me except that it was the entire left hand and then a few days later the right hand ... not smashed by a hammer but slammed in a car door, then came the knees, hips, shoulder and ankles. It just crazily roamed around from one joint or muscle to the next every few days. I was diagnosed with RA even though my GP didn't believe that it kept changing areas. The sinus, ear and eye stuff started two years later and then another 12 months before an ENT put it all together and came up with a WG diagnosis (actually the ENT was excellent and suspected it on my first visit to him, it was my GP that took so long to refer me to an ENT in the first place). Always complained to my GP that the anti inflammatories didn't seem to touch the sides. Better now that I am on Pred and MTX, only very mild (you know it's there) pain and a blocked nose.

[renidrag]

RudiK: I had great neuropathy in my legs and feet and as remission has lengthened (one year June 30) the feeling comes back very slowly. I can now walk fairly well and the numbnes comes and goes. If I do too much on Monday, Tuesday will not be so good. I have been working very hard also to lose weight and have noticed this also makes a huge difference..
Dale

[norcalian]

My joint pain started about the same time as my cough and fever. It was my right knee, then my left. it then started roaming as well. It was so weird at first, because I just thought I had the flu, but couldn't figure out why my joints hurt. By the time I was admitted to the hospital the pain had settled into several joints at once - primarily my shoulders, elbows and knees and ankles. I moved like a very old man and I couldn't feed myself (not that I had an appetite anyway). A couple mega doses of prednisone in the hospital and all that was gone. Fortunately I haven't had to deal with joint pain since...just all the other stuff (anyone know at what dose of prednisone the moonface goes away?).

[penguin]

well my moonface has just about gone and im on 5mg

[norcalian]

well my moonface has just about gone and im on 5mg

I've got a ways before I'm at 5mg/d. I guess I need to get use to the new face in the mirror :mellow:

[delorisdoe]

I find that when ever I am put back on prednisone I stare at my face non stop and i see the beginings of a moon face no matter how hi or low the dose is. I am sure it is there. It does decrease as the dosage decreases but until I was below 10 it did not go away. It may have been a smaller moon but it was a moon. Once the prednisone got low enough the moon face dissapeared completely.