Hello from Norway

[Havellen]

I am a 19 year old boy from Lier, Norway who have been diagnosed with WG for about 3 months! Before you continue to read, I must say sorry if there are any grammatical errors, english is not my first language...

I have been having weird sinus problems for maybe 3 years, but only a runny nose who wouldn't go away.

It all started in may, when I participated in a graduation party called "russetid" in Norway, basically people buy a van or a buss, upgrade it, and drive around partying for a month! Under the last week I started getting joint pain, but an Ibux (same as advil) made it go away for the rest of the day! This lasted for a month with increasing pain so I went to the doctor, and they gave me something like advil, but stronger. At the end of june I went to a festival in Norway called Hovefestivalen, and there I partied for a week! I was a volunteer in the security-group of the festival, so I was watching over a bar when my other symptoms started to appear. My ankle started to get red with a weird bruise, and my right eye stared hurting.
The next day I want to the medic-tent where I got sent to the nearby hospital. There I met a doctor who gave me a cream to apply to the rash and some Antihistamines for an allergy she thought I had. I went back to the festival and continued to party with my friends. Later that night my right eye got much worse, I couldn't focus on things close to me. My joints also got much worse, and I had to skip a concert with Calvin Harris because my joints was so painful.

After the festival was over i went home where my dad said I should get to the doctor to check out my eye. I went and got diagnosed with a iridocyclit on my eye. I got some eye drops and a cream to apply to my eye. 2 days later my family went to the other side of Norway, (Lakselv), on a vacation to visit some relatives. There i continued to have joint pain and eye problems. My other eye also got an iridocyclit, so both my eyes was red and painful. I was a week there and then I went home. Mu mother and father went on a vacation in our boat, and me and my brother stayed home. When i was home my joints was extremely painful, I had started to cough blood,and i had gotten a weird rash at my elbows so I went to the ER, where my regular doctor was on vacation. I got sent to the doctor on call, a nice female doctor. She took some blood and a urine sample and an hour later i got called into see her again. She told me I most likely had WG, and said I was being admitted to the nearby hospital. In the 40 years she had been working there she had only seen one other person with the same symptoms as i had, and she thought it was most likely I had WG.

I got sent to the hospital where I was put into a bedpost and got some pain meds and some of my blood was taken. It was really late by then so i went to bed without any more test get taken. The next day I got woken up by a nurse who wanted some of my blood. I got sent to take CT of my lung and sinuses. By then my mother, who had been on our boat 150 miles away, got home and to the hospital. Later that day I got the news that it was WG, and I got started on 1g of prednisolone for 3 days. When the meds kicked in I had very much energy and the pain in my joints went away. it was very difficult to sleep that night, but I managed to get some hours of sleep anyway. I was at the hospital for 5 days, and they must have been the most boring 5 days of my life! Thank god for my mothers ipad and netflix! By day 4 I asked the doctor for some free time to go to the city and eat with my friends, before everyone went there different way to study for the fall. They said yes, and I went and saw my friends! I think i might have been gone for a little too long, because I got a stern telephone from one of the nurses asking where I was (I forgot to take some meds :O). The last day of my hospital-visit i got Rituximab infused and I went home.

The next day I went to another town because of moving to another school. I spent 4 days looking for an apartment while I was there, and then I went home again. A week after my first Rituximab infusion I got to take another one. An hour later I was on my way to my new apartment with all my stuff packed in a car. The next days and weeks was pretty uneventful, just regular doctor checkups each month and taking my meds! I went from 50 mg of Prednisolone a day and 20 mg of Methotrexate a week to 20 mg Methotrexate a week and 15 mg of Prednisolone a day.

To conclude I must say I got diagnosed pretty fast, and because I take my meds, I don't feel sick at all. The doctor says I do good progress, and there are almost no signs of damage to my organs. For me the diagnosis haven't altered anything about my life, except from taking some medication each morning, but that is no problem! I feel like I have a really positive outlook on the whole disease, and it really doesn't bother me!

So yeah, thank you for all the information on the site!

[pberggren1]

Welcome to our family Havellen. I am glad you are doing well and got diagnosed rather quickly. Your english is very good by the way.

I have many relatives in Norway as my great grand parents on my dad's side of the family are from there. I also have many relatives in Sweden as you probably can tell from my last name. I would love to come and visit there some day.

I hope you can taper off the pred fast. The reason you feel so good now is because of the pred. Please keep us posted. We would love to learn more about you.

[annekat]

Welcome to the forum! There is no problem with your English. You are very typical in having some unusual sinus symptoms for a few years before diagnosis. But I'm glad they weren't severe and that when things got worse, you were diagnosed quickly. My progression was somewhat similar, but I only had to spend one night in the hospital, thank goodness. We are both lucky in that there are people on here who spent weeks there and almost died. Sounds like you are getting the right treatment and a very good start toward getting your WG under control.

I enjoyed reading about your festival and partying on the bus. Sounds like great fun, though it preceded a worsening of your symptoms. We would love to hear more stories, observations, and to be available for answering questions. You can learn a lot by searching the archives, and there is a Weggie Members map link at top of page where you can add a marker with your name and location and see lots of markers of forum members all over the world.

[SpaceflightAddict]

Later that day I got the news that it was WG, and I got started on 1g of prednisolone for 3 days. When the meds kicked in I had very much energy and the pain in my joints went away. it was very difficult to sleep that night, but I managed to get some hours of sleep anyway.

I received the very same dosage of prednisolone for three days when my diagnosis was confirmed. I also had endless energy, got very little sleep, and ate food like a crazed man. I got some visual hallucinations too one night during the pulse dose. It was a very interesting experience. One of the nights that I could not sleep, I decided to do laps on the hospital floor until I was tired. I walked 13 miles (20 kilometers) over a few hours and still was wide awake.

It sounds like your treatment is going very well!

Welcome to the forums!
-SpaceflightAddict

[Alysia]

Hi and welcome to the forum
Is sounds that life could be so great for you, unless WG interfere but I am glad that you are not letting it get in your way too much. I am also glad that you are feeling much better.
English is not my first language either, but since I am here, among the endless things that I am learning in this awesome forum, I am also improving my English at least I hope so
take care.

[Wegetarian]

OMG! The vikings are definitely invading the forums!

I participated in a graduation party called "russetid" in Norway, basically people buy a van or a buss, upgrade it, and drive around partying for a month!
[...]
I was watching over a bar when my other symptoms started to appear.

Darn, that sounds like a blast! Glad you didn't have to cut it too short though. I hope you you managed to drink enough of the liquor while watching the bar, at least my doctor said I shouldn't drink while on Methotrexate. Some docs say no alchohol at all while some say a beer now and then isn't the end of the world but I don't really want to say anything except be careful regarding alcohol.

Great that you got diagnosed so quickly and no damage to your organs! You seem to be on similar meds as me too. Hopefully those low doses of Pred won't cause many side-effects either.

Welcome to the forums!

[mishb]

Hi Havellen and welcome to the forum.

First of all, we have nothing like your graduation party bus in Australia - it sounds awesome.

I'm sorry that you probably didn't to get to enjoy it as much as you would have liked, due to the pains.

I'm glad that everything is good for you now. Gotta love those meds.

Take care

[stephwest]

Hi there, Did the medics say alcohol was the start of the inflammation in joints and eyes, I had swelled up painful joints for several days, then I had a burst artery in back of right eye, made me not see well for a week but with eye exercise and other non medical help I have 80 % vision back, this artery burst at 4.00am (very Scarey) got to A&E by 7 diagnosed with GPA by 9 on 80mg Pred steroids by 4.00pm.
What I have in common with you is we were on holiday for weeks before this happened, drinking every night! is there a link with alcohol and inflammation, leading to GPA.

[mishb]

Stephen, I have not touched alcohol for probably fifteen or twenty years and prior to that I had one glass on Christmas day.
I am very close to be able to say......I have never touched alcohol.

I think I could guarantee that alcohol is not the cause of the inflammation associated WG/GPA.

[gilders]

So pleased you got diagnosed quickly. I was a similar age (17) when diagnosed but it wasn't a 5 night hospital stay, it was 7 months, then a month later I was back in again for a few weeks.

Relapse rate is high for this disease and although relapses usually occur quite soon after treatment stops, it could be years later (or never if you're lucky). So don't in anyway let it effect the rest of your life, but as soon as you feel ill in the future, bear in mind it might not be a common cold, but the start of a relapse.