Small update on Elena

[Elena]

Just wanted to tell you guys that I was admitted to the hospital Thursday night.. I ended up having a hard time breathing, as it hurt alot and so I couldn't take any deep breaths, after I coughed a lot. Had to go to the emergency room and, as usual, when they learned I have WG they took me really seriously and sent me to the specialist hospital the next morning.

I was originally scheduled for dilation the 24th of January, as my trachea has been getting a lot tighter. Had an x-ray, a CT-scan and a bronchoscopy yesterday. What happened was that when I was coughing some phlegm got stuck, in the very small passage down to my right lung, which made it impossible for air to get through. As it was a bit of air left in my lung, I created pressure when I was coughing which made air leak into my Thoracic cavity (not a 100% sure if that's what it's called..). So now I'm so I'm really lucky (not) and get to spend my entire weekend and most of next week in the hospital, getting antibiotics and waiting for my dilation (which is being moved to an earlier date)

It originally hurt a lot to breath in, and my neck got really stiff, but all that has gotten better. I have also been getting some qualms and been throwing up some as well after getting to the hospital. Fortunately not too often.. Not much fun though..

[Sangye]

I'm sorry to hear this, Elena. It sounds very scary. I can't imagine throwing up under those conditions. Please do your best to stay calm! Do you have tv or some other way to distract yourself? Big hugs to you while you get treated. :hug2:

[Jack]

It can be really crap when it all starts going wrong and you end up in hospital. Hope they get you sorted out soon.

[elephant]

Take care Elena and hope your feeling better in a few days!

[Elena]

The first night and day was the worst, now it doesn't even hurt that much. I haven't been throwing up since yesterday either. So I'm feeling a lot better now.
I'm really grateful that I'm such a calm person. If I had been easily scared I probably wouldn't have been doing so well right now. But I'm pretty confident the docs here know what they're doing and that they take good care of me. And I have lots of stuff to distract me, such as very good friends who keep callling and making sure I'm ok ^^,

They are considering putting in a stent when dilating my trachea. But it's going to be kind of soft and made of silicon, so they can just take it out as soon as my trachea is properly healed. I was initially pretty skeptic to putting in a stent, but they explaned properly and explaned the different kinds of stents.
JanW; do you know much about this kind of silicon stent? Would like to hear your meaning as well, as I know you have a lot of knowledge about this : )

[jola57]

Glad that you were calm, it must have been scary and unpleasant. Elena, having a stent is better than not being able to breathe, I believe the silicon stent is widely used and has fewer complications which are easily treated

[drz]

Hope things are going better for you and improvement is on the way soon. Glad you are able to get good care.

[JanW]

Hey, Elena -- I don't have TS, only SGS (subglottic involvement); only the first two rings of my trachea had any scarring. I know that both stents and laser treatments are rarely used in major centers in the states because of the increased risk for scarring (granulomas grow over and around the stents or the scar tissue from the laser), but I also know that they are fairly frequently used internationally. Sorry I can't be more helpful but I think that the trachea is a whole different ball of wax, and harder to get to as well (and smaller I think). I don't know anything about the different kind of stents - never an issue in my particular case.

[Sangye]

I hope whatever treatment you get works great for you, Elena!:hug1:

[Elena]

Thank you anyways JanW. It seems that they will try without one more time and see how it works out, so it nothing I need to decide right now.

I'm most likely getting dilated on Friday (originally scheduled for Monday), so I'm really looking forward to getting home and back to my life now. Been in the hospital for 6 days now.. And thank you to everyone else as well!

[Elena]

Ok, had my dialition yesterday. They actually did try putting a silicon stent in, but they didn't have one small enough to fit. All the scartissue has changed the anatomy of my right bronchus a bit.. So, without the option of a stent they just dilated it with laser and a balloon, but not so much that it's fully open. Only 10mm in diameter. I'm not sure how wide it is supposed to be in a normal person? They didn't want to dilate to much at the moment, fearing damage. they want to be able to dilate more some time later instead. And also, they are going to keep a lot closer watch over it this time, making sure it doesn't get as bad as this time before dilating again. They also used Mitomycin C this time, so I'm hoping it will make a difference and make my thrachea stay open. If not "forever," at least longer than it did last time. They are really afraid of doing anything else than just dilating this way, because I'm so young. And any other options they have will have to be permanent. Not a good thing as I have a long life ahead of me..

Anyways, I feel a lot better after the dilation:) A bit frustrating that, although I get to go home later today, I have to come back Monday morning. They want a new CT, and they really don't trust the hospital where I live to be able to do it properly.. Also, I'm getting lots of antibiotics to keep infection away, as they're really afraid of me getting one in my Thoracic cavity. Which is really why they want a new CT. Making sure the air that leaked into it is gone..

[Deanne Hull]

HI Elena, glad to hear you are on the mend.

[elephant]

Hi Elena good luck and keep you head open. I was just reading yesterday that Norway is the best place to live in the World! Someday I love to visit this beautiful place!

[Sangye]

Glad to hear you're breathing better Elena! I hope this dilation lasts a long time.

[drz]

Ok, had my dialition yesterday. They actually did try putting a silicon stent in, but they didn't have one small enough to fit. All the scartissue has changed the anatomy of my right bronchus a bit.. So, without the option of a stent they just dilated it with laser and a balloon, but not so much that it's fully open. Only 10mm in diameter. I'm not sure how wide it is supposed to be in a normal person? They didn't want to dilate to much at the moment, fearing damage. they want to be able to dilate more some time later instead. And also, they are going to keep a lot closer watch over it this time, making sure it doesn't get as bad as this time before dilating again. They also used Mitomycin C this time, so I'm hoping it will make a difference and make my thrachea stay open. If not "forever," at least longer than it did last time. They are really afraid of doing anything else than just dilating this way, because I'm so young. And any other options they have will have to be permanent. Not a good thing as I have a long life ahead of me..

Anyways, I feel a lot better after the dilation:) A bit frustrating that, although I get to go home later today, I have to come back Monday morning. They want a new CT, and they really don't trust the hospital where I live to be able to do it properly.. Also, I'm getting lots of antibiotics to keep infection away, as they're really afraid of me getting one in my Thoracic cavity. Which is really why they want a new CT. Making sure the air that leaked into it is gone..
How about eating? Do you have a special diet? Hope you avoid any infection and heal quickly.

[Elena]

How about eating? Do you have a special diet? Hope you avoid any infection and heal quickly.

Huh, no, I don't have a special diet. Just eating what I usually do..
Actually I've been struggling a little with loss of appetite there last two weeks. My mom is kind of worried, as I'm loosing a bit of weight. And I don't really have that much to take from.. Trying to eat, but .. not that easy when I really don't feel like putting food in my mouth.

[drz]

Huh, no, I don't have a special diet. Just eating what I usually do..
Actually I've been struggling a little with loss of appetite there last two weeks. My mom is kind of worried, as I'm loosing a bit of weight. And I don't really have that much to take from.. Trying to eat, but .. not that easy when I really don't feel like putting food in my mouth.

Prednisone usually made me very hungry all the time so I gained quite a bit of weight. Initially I lost a lot of weight from the Wegener's disease. Later on I often had to eat some thing in the middle of the night when my blood glucose levels were dropping from prednisone wearing off even when I wasn't hungry. I found what worked best at these times was to drink some fruit juice or chocolate milk since it had carbs with out being too filling. I also took some of those high carb drinks (Ensure) to help you gain weight when I was trying to gain some weight back. Maybe those would help you. Weight loss is normal part of Wegener's for most people so monitor your weight.

[Elena]

I'm at 7,5 mg of prednisone now, and I'm not having any noticable side-effects from it. I lost the weight I put on on the higher doses pretty easily, wasn't even trying except some excerise. My weight has been kind of stable for a long time now, but lately I've been eating a lot less. And on top of that I now have very little appetite. Have been getting some of those high carb drinks here at hte hospital. I lost some weight when I first got sick, but now there's no sign of activity in my wegs. Neither in my bloodwork, nor any symptoms. Going to talk to the doc about it afterwards, so I'll see what he says. Kind of scared he's going to want to keep me here at the hospital even longer, cause I'm supposed to be going home this afternoon.

[elephant]

Elena, hopefully they will do a full blood work up on you. Need to write down everything that you eat so they can see how much you are eating ( calorie intake) and any type of activity that you do. Sometimes it can be a medication that decreases appetite, hopefully they will get to the bottom of this. Take care!

[Elena]

Finally I am officially in remission! It's the first time they've dared use that word since I got sick 3 years ago and it feels real good. I've been feeling good for a long time now, however every time I have, something still seems to be "wrong". Except this time :) Did a bronchoscopy and even my trachea seems to have healed a lot. No sign of inflammation or infection, just some remaining scar tissue.

It's been 6 months since my last rtx infusions, however this time they decided to hold off and see how I do without it. At least for another 3 months. They upped my imuran to 100 mg and I finally got to taper the pred a little. So now it's my second day on 6.25 mg and I haven't really noticed any difference. Going to stay at this dose until June and if everything still looks ok, I'm going down to 5 mg then. I hope I'll do ok tapering 1.25 mg at a time though, cause I looked it up and they don't seem to sell prednisolone pills at dosages lower than 2.5 mg in Norway. So I'm just having to split those in two.

My body seems to deal with meds real well. I mean I read about how badly some of you feel when tapering (even at higher dosages) or forgetting to take pred. But I've never noticed anything at all. Hoping that's a good sign!

Question: I've always taken imuran in two doses, one in the morning and one before bed. However, now I was told I could just take it all in the morning. How do you guys take it? And does anyone know if it makes any difference?

[marta]

Yeahhhhhh!!!!! Such wonderful news Elena. Congrats and enjoy every second of being 'normal'

I take my imuran all at once in the morning and it seems fine. I haven't had any problems at all with that part of the equation. I don't know if it makes a difference or not, but once a day has been no problem for me. I'm at 150mg.

Best of luck, and may the trend continue indefinitely.

[Brooke]

Great news!! Cheers to you!!

[pberggren1]

Gotta love the R word Elena. Congrats! I hope you can only improve from here.

[Al]

Great, Elena! Now, go out and do some living....

[vdub]

Remission is decent, isn't it? :-) I hope it sticks around a while for you...

[drz]

Finally I am officially in remission!

Question: I've always taken imuran in two doses, one in the morning and one before bed. However, now I was told I could just take it all in the morning. How do you guys take it? And does anyone know if it makes any difference?


That is great news. Congrats on reaching the magic and elusive R word. Hope your remission is long and you feel healthy.

I also take 100 mg of azathioprine (Imuran) in morning and 75 at night. I don't think it really makes much difference but I started that way when I had to increase my azathioprine and already had my pill box set up and had taken my morning dosage so I just added one to my night meds and just kept doing it. Split doses are sometimes easier on the body. My doctors say it is OK to split the dosage.

That pred taper of 1.25 sounds pretty large to me since I was splitting 1 mg pills four ways and tapering .25 every couple weeks. I stopped my taper at 5mg though since my doctors recommended I stay on that pred dosage as long as I am on the azathioprine. The said there is some belief it may help reduce the risk of a flare which you know aren't much fun. Best wishes for continued good health.

How are things in Hamar this Spring? Did you have a good winter?

[Sangye]

Wow, congratulations Elena!! I'm happy that you're in remission AND feeling so good. They don't always coincide!

I'm concerned about you tapering 1.25 mg at a time under 5 mg. That's a huge jump and it's not usually tolerated. How long have you been on pred? That makes a difference. I did the same taper as drz-- 0.25 mg every couple weeks. It got me down to 2.5 mg, where I've been stuck for a couple years.

[Elena]

Thank you :) I really hope this lasts for a looong time.

Well, I'm not sure about how much I'm going to taper at a time, after I reach 5 mg. But I assumed I couldn't split the pills into more than halves. Any ways it won't be for some time yet, and I'll make sure they don't make me taper to quickly.

drz: Everything fine in Hamar, it's been the warmest march of all time her. And our winter was really mild compared to how it usually is. I have been really busy studying though, and don't have time for much else. I have been snowboarding a couple of times though, which was great :)) Going to have a week of Easter Holidays now, just sleeping, eating, reading and relaxing. It'll be good to have some time off for relaxing.

[pberggren1]

You should be able to get 1mg tabs over there Elena. We have 1mg here and in the UK as well.

[Elena]

No there really does not seem to be any prednisolone 1 mg pills to be bought in Norway. But there seem to be 1 mg prednisone pills. Can anyone tell me the difference between prednisone and prednisolone? I only know that prednisone is transformed into prednisolone in the liver, or something like that.

[pberggren1]

I thought they are both the same thing, just different names.

[drz]

No there really does not seem to be any prednisolone 1 mg pills to be bought in Norway. But there seem to be 1 mg prednisone pills. Can anyone tell me the difference between prednisone and prednisolone? I only know that prednisone is transformed into prednisolone in the liver, or something like that.

Ask your pharmacist or whatever you call the person who dispenses meds for you. I would think they might be interchangeable for your use but the pharmacist could best advise you. I know my 1 mg pills are scored so they break easily in half.

[Al]

No there really does not seem to be any prednisolone 1 mg pills to be bought in Norway. But there seem to be 1 mg prednisone pills. Can anyone tell me the difference between prednisone and prednisolone? I only know that prednisone is transformed into prednisolone in the liver, or something like that.Elena, prednisone is, indeed, a "pro-drug". It is the passive form that gets converted into the active form by the liver. Prednisolone (AKA medrol, solemedrol, or methylprednisolone) can be in oral form--tablets or in a syrup--but the term usually refers to the liquid version appropriate for IV uses. It what what you get in your juice along with CTX or the like. Not sure, but I think the conversion ratio is something like 1 mg prednisolone=1.6 mg of prednisone. Prednisone is much less expensive, which is why its use is so widespread compared to prednisolone, However, if one's liver is distressed, the active steroid might be a better choice.

Al