Hey Guys!
Having kind of mixed feelings about joining the forum. I mean frankly I'd so much rather be doing something completely different and never even hearing about the disease. But yeah, here I am. The biopsies from my nose were completed last week, but even before that they were really strongly suspecting Weg since my Anca and those other (PR3?) values came back positive so guess its pretty certain I've got Weg.
I'm in my early thirties and had an operation in early June. Before I recuperated from the operation my nose got completely clogged up. During the weekend I had this runny nose and was constantly wiping pink snot, not like a lot of it but it was constantly dripping. I've used a
neti pot for years, and it has been so helpful when having hey allergies or a clogged nose - but when I used it I noticed that the water wasn't coming through almost at all and it didn't remove the snot as it usually does. So on Monday morning I went to the doctors as I was pretty sure I needed some medication.
On my first doctors visit he checked my nose and gave me a allergy medicines and a nasal spray with cortisone. Unfortunately those didn't help me at all. On the contrary, I was already still fatigued recovering from the operation and the allergy meds drained whatever energy I had left. I was told to return if my condition didn't improve in two weeks. A few days later I needed to go to the health clinic on an unrelated business, but they said I sound completely clogged so I should consult a nurse about it. Was sent to a doctor who said I likely have a sinus infection and prescribed antibiotics and to stop taking the allergy pills. I started to get a fever but the antibiotics and nasal spray didn't help at all.
The following week I went to the doctors again, since my nose had only gotten worse to the point where I couldn't breath at all through it and lost my sense of smell. They changed my antibiotics. I'm a bit hazy about the details since I don't really remember how many times I went to the doc. But on the following week they prescribed me some cortison and switched my antibiotics for the third time. I started with 20mg of cortison for two days and then went down on the dosage. Again I couldn't notice any difference. When I went back for a check-up they said they don't really know what's wrong and sent me to a specialist hospital that deal with noses, throats and ears. By this time I've had a fever for two weeks and was feeling much worse.
At the specialist hospital they seemed quite surprised when they peeked into my nose. I had been hearing for almost three weeks how my sinuses were in bad shape, which didn't really surprise me too much though. They called in a doctor who took biopsies from my nose and scheduled x-rays for me and sent me home. Didn't realise until I got home that I had no clue what to do next. Was in so much pain from the biopsies and weak from the feaver that I completely forgot to ask what I should do while I wait for the results. When I called them in the weekend they said they had scheduled the x-rays for the following week and a specialist in three weeks. I did tell them that I had already been in a fever for two weeks and waiting for another three weeks could be very difficult. The nurses were incredibly sweet and did their best to expedite the times so I could come earlier.
Four days later I needed to go to the health clinic again, and I asked if they could check my CRP values and fever since I was feeling worse again. My CRP had gone a bit down the week before, but had now gone to 139 and my fever was 38.4 celcius. The friendly nurse said they won't let me leave until I see one of their docs or go back to the specialist hospital. I tried phoning the hospital, but they couldn't even understand what I was saying as my nose was so clogged that they couldn't hear what I was saying. The nurse kindly let them know of the results and called be a cab. When I got checked up at the hospital again. From my understanding the doc immediately suspected Weg and had a lot of blood tests taken from me. They also said that they will take me in as a patient and try to get the x-rays while I'm there instead of using the appointments. This was really nice as they sent me the same day for the pics (had to wait for some hours before they could give me thing they put in the blood to get better pictures, guess they needed to wait for some blood results). Once the pictures were taken I was taken to the ward and got antibiotics as an IV.
The following day I had a regular doctors check up and they prescribed some prednisolon for me, I think I started with 40mg but later they said I need to take 20mg more. So I figured they must have received some results since they wanted to change my dosage. At the evening I had such a wonderful feeling - I mean I had been clogged for about three weeks and could just feel my nose opening up and being able to breath a bit again and feel some smells. The IV antibiotics also felt like they were working and didn't feel so weak anymore.
The following day I asked why they changed the dosage and they had consulted another doctor and suspected Weg but hadn't received all the results they needed. I spent three nights in the hospital and felt really good the last day. They said we'd get a better confirmation once the biopsies are in but it does look like I have Weg. They also said they'd sent me to a specialist to talk about the treatments, but were unsure when they'd take me there since its a different hospital.
So last Tuesday the biopsies seemed to indicate that it was Weg. From my understanding my condition is really light, as it should be isolated to my nose. I did develop a cough at the hosptial, and it got worse when I got home. I don't cough up any blood, just some slime. Wen't for a check-up and the doctor I saw figured it was unrelated and I have an appointment with an specialist so no need to take any new x-rays for now.
I'll go next Thursday to talk about starting the treatments, looks like I'll start the treatments at the hospital I was at to save time.
All-in-all I'm again amazed how well our health care system works. From what I read online it sounds like a disease that is very rare and so tough to diagnose. I also felt that the doctors did an amazing job at getting me back at my feet and I'm surprised they could diagnose me so quickly. Guess I wouldn't have minded if they had sent me to a specialist a bit sooner from the health clinic, but frankly I didn't have much energy to request anything either since I was just hoping the antibiotics would start working and wanted to go home and mostly saw different doctors each time.
At the moment I'm taking way too much medication for my liking. I have 80mg of prednisolon, stuff to help my stomach from pred, calcium to prevent pred from hurting my bones, antibiotics to prevent new infections to my nose and I also take some of those helpful bacteria to not upset my stomach from the antibiotics and melatonin tablets to help me sleep at night. I feel the prednisolon makes it harder for me to sleep though. Didn't take anything before, so now having to be popping pills all day feels awkward.
I'm real happy I'm feeling as good as I do. I was prescribed a lot of painkillers, but haven't needed them. When I use the neti pot I do feel it afterwards hurts a bit when I breath through my nose - but I still feel its very helpful in clearing my nose. My nose it a lot more sensitive than it used to be (maybe its a good thing as I can't pick my nose anymore
). I think it got ever so slightly crooked after the swelling went down, so Weg might have made some damage there.
Guess I'm mostly anxious about the future. From what I've heard it should be easily treatable since we caught it so yearly on and it has been isolated to my nose. Feeling quite fatigued, perhaps a mixture of sleeping badly while on prednisolon, recuperating from the operation and Weg related. Dunno, but still happy I can now do stuff with the family. The three weeks I were feverish at home I mainly had to stay in bed all day, so compared to that I just feel so good.
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* Hello from Europe :) *
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). Anyway, I have high expectations since I've received such good care. Its silly cheap too - just received the hospital bill for 130 euros and they had me there over three nights and did tomography x-rays of my nose, lung x-rays and teeth x-rays in addition to the numerous blood samples and doctor visits. Kind of think they could charge more for that, seems just silly to send such a small bill since the govenrment pays the bulk anyway.
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