* Hello from Europe :) *

[Wegetarian]

(I posted this thread three days ago, but for some reason its not visible in the forum for other users than me, like if I try to access it without being logged in I just get an error about an invalid thread. I did mention about this in the about the forums section. Anyway, I'll just create this new thread and hope it works )

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.

[Alysia]

Hi wegetarian,
I'm glad your thread is finally visible to everybody
you were lucky to get dx and treatment early enough. if it is wg, watch out that your docs will not do with you the mistake my docs did with me, of treatment only with pred and bacrtim, and no immunosupressant. (untill things becams worse and worse...).
do you have only nose involvement ?
were are you from ? (I wonder about "a pale blue dot") maybe we "share" the mediterranean ?
welcome to the forum. it is the best wg-doc in the world.

[Wegetarian]

Hi Alysia,

Yes - I feel really lucky that they diagnosed me so quickly and after reading about the disease more I still feel amazed they could do it so quick. All-in-all I've felt that I've been in great hands and felt it was great that the last doc I talked to further expedited me into getting into treatment as the center with specialists they were gonna send me to was busy and wanted to have me start treatments sooner. I do fully expect that they will give me some other medications than just cortison and antibiotics, and will hopefully soon update with whats planned for me. (If not then I'll just start a fuss and make sure I get the best treatment I can get ). 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.

I am a bit worried about the doctors appointmet though. I mean it feels like I have a million questions but I understand I will most likely not have a lot of time since its very hard to get those appointments so they probably won't have as much time as I'd want. Been looking into the different medicine options so that I'd at least have a basic understanding of what we'll do. I just feel I know so little about this and medicine in general that I'll certainly have the doctors word, but would still opt to get one of the lightest medicines with the least amount of negative side effects.

To my knowledge its only in my nose. I did get a cough at the hospital, and it got worse the following week. I called the hospital and went for a check-up last week and they figured its most likely a flu and we discussed we wouldn't take any new x-rays as I have the appointment with the specialist this week. The cough has also gotten better, it might be the new antibiotics I started taking (have to check the name, something ending with Forte which I guess many here are using). So I'm not overly worried. My bloodtests from last week's monday seemed to be fine and we upped the cortison which I guess made me feel a bit better. Will know the results from this weeks blood tests tomorrow, but I guess they only checked the blood sugars.

I've noticed my mood has changed in the last few days. I suspect it could have to do with the cortisons I've taken, since my face feels a bit rounder and my appetite has changed, would love to take some snacks all the time. I also feel like I get annoyed much easier. I also know cortison makes it harder for me to sleep. I have some natural sleep hormones which evens it out a bit, but do feel tired when I wake up and at times I only get 4 hours of sleep which makes me feel so exhausted the following day. I'll try to get an appointment to a therapist too, its not something I've done before, but I have a feeling it might be helpful in dealing with all the emotions related to this. Up until a few days I was surprised how lightly I was taking all of this, and not sure if its starting to sink in now or why I'm feeling differently. I've always liked to plan my future, but at the moment it feels like I just need to take one day at a time and see where I'm heading.

I would love to get in better shape as I've spent so much time in bed this summer and get so easily tired, but from what I read I should avoid the gym while taking cortisons and I've felt too tired to go out for a late night walk.

Then again maybe its not just the cortison, it feels like I've spent the last week mainly reading about this disease and the forums and although I love to get the information its not too cheerful and might contribute to me feeling like I do. Was hoping this would be a walk in the park, and hopefully it can be easily treated but I've read so many stories filled with difficulties that I do have to consider it might not be an easy journey.

I've also looked into some local resources, and joined this rheumy-organization who also have Weg members. They seemed to organize quite a lot of intersting things and suggested I could well apply for a 5-day spa trip where they try to help plan how to cope at work. Dunno if I'll apply though since that would be a week away from the family but its certainly something I've thought about a lot. A local organization also offers yoga-type excercises and pilates nearby. Figured that might be worth a shot as I really loved yoga ages ago, and remember how it felt relaxing and helped me sleep.

I sure hope my posts aren't too long-winded. Guess I have a bit too much time on my hands

[Alysia]

Hi,
the beginning of having wg is overwhelming
and sure pred affect our mood

I think it is good idea to go to psychotherapy. I'm doing it even before becoming a weggie, I'm now starting my 19 year in psychotherapy
but I suggest you to go to psychoanalysis psychotherpy and not to cognitive behavioral therapy.
anyway, this forum is my best therapist. there are things that "only a weggie can fully understand a weggie"

[annekat]

Wegetarian, long winded posts on here are OK. Writing out what you have been through is therapeutic and helps you sort it out in your brain. Eventually, you may not feel the need to write as much. And what you have written is interesting to the rest of us. It is a subject we are all too familiar with, and it is another example of how everyone's WG experience is a little different.

[mishb]

Hi Wegetarian,

I like your explanation which is nearly as mine was - and also others on here.

It's really nice on here to realise that you are not alone and that others are also going through the same thing.
Hopefully they get you on to all of the correct medications, next Thursday and you will start to feel even better than you do.

Take care and ........

[Wegetarian]

Thanks for the kind comments

I'd say reading about other peoples experiences have been one of the best things about this forum. Well that and also knowing how these different medicines behave, although a lot of the more technical info I've found from other webpages. It does surprise me how little doctors tell about the side effects and how they behave and I found it very comforting to know that pred effects a lot of people strongly. I mean having fairly strong changes in my mood recently and not knowing what causes it would be awful.

next Thursday and you will start to feel even better than you do.

Haha, well actually I haven't felt as awful in weeks. I got to sleep after 11.30 pm yesterday and my daughter woke me up a bit after midnight. I got her right back to bed but couldn't sleep until probably a half hour later. Then my son got up at 5.30am, I tried getting him back to bed but with no luck. Tried snoozing, but my knew my alarm was set at 6am so I'd get to the doctor in time so figured I might as well just get up and let the others sleep. Man I was tired. I mean I rarely feel rested in the mornings after I got my illness, but when I only get about 4 hours of sleep I can certainly feel the difference. I have a sensitive stomach and not sleeping usually makes it upset, the strong antibiotics I'm taking doesn't help this at all (Cotrim forte trimetroprim 160mg, sulfamethoxazol 800mg but I guess most have it as another brand.. such huge pills too).

Anyway when I was walking the half kilometer to the bus stop my lungs felt strange, like taking a deep breath felt uncomfortable and I had this feeling of pressure at the upper part of my lungs. So annoying that it feels like such a chore to walk a short trip. Just yesteday evening I had gone for a similar walk with no issues, but I think the lack of rest really affects my body.

I was supposed to be at the hospital 15 min before the appointment, but there was a convenient bus route that got me there 30 min earlier. I wasn't sure who I was meeting so I asked the docs name and googled some. To my disappointment she wasn't a rheumy at all. I kind of expected that though, since they wanted to start the treatments at this hospital.

So about the time of my appointment I see a very young woman go into the room where I'm supposed to have the appointment. I figured she was a nurse since her outfit didn't really look like a doctors outfit, but she had a very confident walk and a cool coffee cup so was wondering if she was the doc and wondering if she'd ever see a Weg before. 10 minutes later a more mature woman goes to the office and I figure she is my doc. A half hour past the time for my appointment I start to worry that something is up. I knock at the door and ask if they are still planning on seeing me. The young nurse apologises a lot and says they will see me in just a while.

So they then ask me in and it turns out they spent the half hour reviewing my details and checking up on treatment methods. The doc explains that its not her speciality, but they have been consulting experts. It turns out they have been discussing with a professor, whom I unfortunately haven't had the honor of meeting, but who I hear has been commenting my case before. Even though the doc wasn't a specialist she says she's treated Weg's before and they will keep consulting the experts and she listens with great attention to all my symptoms and worries.

She said they are planning Methotrexate in addition to the prednisol, which was my expectation based on what I had read. She also called for more details about the dosage and starting of the treatments. We had a fairly long discussion and she wanted to consult the professor but wasn't able to do that during our appointment so she suggested I wait in the lobby and we'd have another meeting once she received all the necessary information. I also highlighted my conserns about the pred and about feeling quite weak

Its so nice when you feel that everyone there is looking out for you. I mean even though I was at first a bit worried about not having a meeting with a rheumy I felt all my concerns were addressed and that she did everything to get the best possible care for me. I knew they spent a lot more time on me than what my appointment would have called for even though they must be real busy since it was tricky to even get that appointment. I asked the nurse if I could have a pillow while I wait so I'd be a bit more comfortable, but instead they suggested I'd take a nap in a bed they had on the side of a room. Was so nice to be able to rest, since I still felt quite bad.

(These days I'm not noob at being in hospitals, so I brought my own coffee, drinks, snacks and entertainment with me - I highly recommend doing this, hospital magazines suck. Had no trouble spending the almost two hours while resting in the bed while watching a movie.)

So we discussed we'd start with a lose dose of Methotrexate, starting at 5mg and going slowly up to 25mg.
We'd also cut down the cortisone to just 60mg in the mornings, and after about a month we'd try to go down to 40 and then slowly to 35.
I was earlier told I might be on antibiotics for the remainder of my life, but we might try to cut them off in two months or so.

In addition we discussed that I'd go to the lab about every two weeks. They will also prescribe some things to prevent bone damage from the pred and vitamins for the Methotrexate.

I mentioned the changes in my mood, and they said they'd also send me to a therapist. (Although frankly I assume the lines must be clogged so I don't have too great hopes of getting an appointment, but doesn't hurt to ask).

So if my lab tests come back fine then I'll start the treatments tomorrow.

We also discussed my returning to work, at first she figured I'd need to take at least two weeks off and then figured a month might be better. After consulting the professor they agreed that I'd take a couple of months. I do think that sounds like a good idea, since I can definitely feel I have a lot of healing to do and I also know its going to be stressful times at the office due to a project we are having. I've discussed with my company, and I'm confident they can deal without me so not really an issue there. I also really like to have some kind of plan, I mean getting two weeks off just keeps me thinking about returning and how we will handle the sharing of information at the office etc. On the other side I do miss my co-workers, and figured I'd go and stop by to one of our meetings to see them. We also have a company party coming up which I plan going to. I suspect there will be copious amounts of alcohol which unfortunately I need to leave for the others since I've read alcohol doesn't go too well with the drugs. Such a shame, I really like free alcohol.

We also discussed that I'm not allowed to go to the gym or go swimming in the near future. Its a sad since I'm in such bad physical shape after being in bed all summer. I do understand the cortison and my condition is limiting what I can do, but had hoped to be able to do more. Guess I'll just have to settle for some walks and I'll also go to this yogaish kind of thing that is starting nearby in September (its organized by a rheumy group so I expect it to be quite light and relaxing). Perhaps I'll also sign up for their pilates class, dunno. I just always felt yoga is so relaxing and the class they have nearby is at a perfect location and time so I know I'll easily go there.

Still I kind of wonder why they don't discuss more about the medicines to the patients. Like if I hadn't asked about the gym I doubt I had ever received that information and could have hurt myself pretty bad. Dunno, maybe its common sense for people to not do anything when on sick leave, but my first thought was to try to get better and in shape now that I have time and some energy. I've also read on how the meds work, and asked the doc if my assumptions were correct that the pred calms down the immune system so much that it stops attacking me and the Methotrexate will further bring down the immune system so that I will very easily catch infections. I guess these were decent estimates, but when I return to work in a few months I suppose it will mean that I'll catch a ton of flu's since I use public transport, have small children who bring their friends (how often have sniffles) to our home and work in an open office where someone is always sneezing or coughing... So I kind of wonder how many days I'll be without a flu during the winter. Well... I guess that's a problem for the future. Just something I was wondering about based on what I read about those meds...


Again a very long winded post, but I have to say I feel so relieved when I have decent knowledge about my treatment plan and know I'll have ample time to start the treatments. To be honest I'm really enjoying the time spent at home with the family. Granted I'd love to have back the energy I had during the spring, but if I'd be working 8 hours a day and taking the kids to day care and going grocery shopping on my way home I doubt I'd have more energy or time to spend with my family than I have now. I also love not being in a rush anywhere. Kind of feels like time stopped at some point. Even though I drive the kids in the morning I'm not in a real rush anywhere, and I know I have time to relax when needed. Kind of a luxury I haven't had in a while.

I also went for lunch with a good friend I haven't seen in months. We've been friends since we were less than 10 years old and it was great to see him. So nice to see friends face-to-face. I'll mostly likely go and chug a few beers with another friend in the evening. Its against his policy to drink during weekdays, but I said to him that I'll start the treatments tomorrow and it will be months before we can do that again so I think I'll be able to coerce him to get slightly tipsy with me I bet I'll be exhausted at night, but I'm sure it will be worth it anyway and I'm only talking about a few beers anyway.

[mishb]

I'm sorry to hear that you weren't feeling very well but I'm glad the doc's finally have a medication plan for you.
5mg of MTX is very small indeed. I wouldn't think it would do very much at the level. I started on 10mg then went to 15 and then 20mg over a three month period.

I work full time in an open plan office and catch public transport (an hour each way) to and from work.

**Touch wood**, I have not had a cold or the flu yet and it's been 4 years.

I have mentioned in many posts, I always wear long sleeves and sometimes gloves.
I do not touch, buttons or doors on trains, trams, traffic lights, elevators, toilets, office doors etc.
I wear a scarf all of the time and put it around my mouth and sometimes nose, as if my face was cold
- little do they know that I am protecting myself from their germs.
On airplanes I wear a surgical face mask but could probably have easily used the scarf there as well.

All of these precautions, plus hand sanitiser after shaking someones hand, using someones pen or signing for a parcel - I feel, really helps keep the bugs away.

So, as I say again, I hope you start to feel better, once the new meds start kicking in.

[Alysia]

Hi Wegetarian,
It sounds like having WG gives you some advantages now
I'm walking every morning at least 30 min everyday, for years. I started just after the acute onset and it helps my breathing (lungs and nose), my joints and my soul.
It seems that you are in good hands. it is so important.

[Wegetarian]

mishb, yeah - I suspect they want to ease me into the medication with such a small dosage to avoid side effects. Didn't really ask for details though but I suppose I could ask tomorrow when they call me if I should rather start with 10. Good point about the gloves. I have very sensitive skin and my hands dry out as soon as it gets cold outside, kind of like they start feeling now. I do touch my face all the time, probably not a great idea once the meds kick in but I suppose gloves would help. I did actually consider buying a hand sanitizer today, nothing I've been concerned with before but it sounds like a good precaution now. I'm a fairly big guy, so I think a scarf on my face would look a bit suspicious though and will try to avoid that . Thanks for the tips

Alysia, yeah I'm surprised I get such great care that I feel that they have given me. Everyone at the hospital has been incredibly friendly to me, and it feels so great when you notice that the doctor really listens to what you are saying and does her best.

I expected to be completely exhausted tonight, but I think I've had a great day even though the morning was really rough. Thinking about it I think the doctors visit relaxed me quite a bit since I know a bit more about the plans about my treatments. I'm a bit drunk though, I asked my friend if we could meet earlier and since he didn't reply I took the liberty to go to his yard and open a beer Was a fun evening for sure and I'm going to bed happy.

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