Hello from Europe 2 :)

[Wegetarian]

I'm surprised I don't feel worse from the pred actually. I mean the 80mg I was on last year played some tricks on my mind, but now with the second dose of 1000 I just feel a bit hyper-active. Got a bit over hour hours of sleep on Wed, and 5 hours on Thu. Maybe I'll be better able to sleep here at home. After tomorrows IV I guess its 80mg in pill form.

Thanks, I'm sure I'll be fine. The doc I had this week was so lovely, and really took her time to answer any questions I had. I think she is away for the weekend and another doc will be there next week too.

A bit worried about the Cyclo IV's though. Really not anything I look forward to... was so happy I could avoid them last year.

On the bright side I think I'll have a very nice sick leave if I don't get into worse shape than I'm now. I think if I could get a couple nights of sleep I'd feel wonderful. Well, not likely to happen when I'm on 80mg pred - lol.

[drz]

I'm surprised I don't feel worse from the pred actually. I mean the 80mg I was on last year played some tricks on my mind, but now with the second dose of 1000 I just feel a bit hyper-active. Got a bit over hour hours of sleep on Wed, and 5 hours on Thu. Maybe I'll be better able to sleep here at home. After tomorrows IV I guess its 80mg in pill form.

Thanks, I'm sure I'll be fine. The doc I had this week was so lovely, and really took her time to answer any questions I had. I think she is away for the weekend and another doc will be there next week too.

A bit worried about the Cyclo IV's though. Really not anything I look forward to... was so happy I could avoid them last year.

On the bright side I think I'll have a very nice sick leave if I don't get into worse shape than I'm now. I think if I could get a couple nights of sleep I'd feel wonderful. Well, not likely to happen when I'm on 80mg pred - lol.

The high pred can certainly get your mind racing and mess with your moods and thinking. I remember the euphoria was pleasant but the nightmares and paranoid delusions were worst experience of my life.

Have they told why they are going with IV CTX? My doctors told me the oral was generally more effective and easier to adjust daily for any adverse reactions to the CTX. There must be some advantage to IVs and reason for this choice for you. My guess is it is to get you up to a therapeutic level quickly.

I remember having some interesting ones that were very unpleasant, like needing to have a catheter for weeks and that took a couple years to repair (surgery to help empty my bladder and reduce my frequent bladder infections) but I think most people do fine with CTX IVs and don't have any big problems. CTX also tends to work faster than RTX so that should be reassuring for you. I started my CTX with two IVs too when i was really sick and needed help quick so that might be why they are recommending it for you.

[Wegetarian]

Thanks Drz, yeah from what I read before CTX would be the quickest way to stop Weg's in its tracks. Guess it can takes several weeks before RTX kicks in. Not sure about the pill vs IV form. Heard today that they have second thoughts about the CTX, not sure about the details. The nurse just mentioned that they ordered it for me, but will still evaluate if they are going to use it. Did hear yesterday that my urine was a bit better, if I remember correctly the value that was 4000 went down quite a bit (Still way over the limits but going down). The results from my the computer chest-xray hadn't came on Friday when I asked, but perhaps they got it and the results weren't worrying dunno really. Just speculation from my part, but guess they must have some reason for second guessing the cyclos. Don't think I'll know more before Monday when the the urine results are in and I see the doc again.

Went today to get my third and last infusion of 1000mg's of Pred, only slept three hours last night and even after three cups of coffee I felt I could fall asleep when they put the drip on. Didn't take long for me to feel like the Duracell Bunny, lol Have to say that besides having my head feel like a giant light-bulb, you know the hyperactive feeling you get on high-pred, I didn't really notice much at all. Maybe slight melancholy. But last year when I was on 80mg I felt a lot worse, with frequent mood-swings and got easily annoyed (well still do get annoyed). I did manage to get a two hour nap at home, and feel real good. My throat had some white spots, and my uvula had expanded a bit - happens to me fairly often when I have the flu. Called the hospital and they said its enough that I come there tomorrow morning unless I start feeling worse. I have no fever or anything, and really nice to be at home with the family since its the last few days before their vacation ends (I'll have a long one, it seems )

[drz]

White spots on throat can be signor esophageal thrush. There is another thread started recently on treating this as it can be another complication of having Wegs and its treatment.

[annekat]

I hope you feel better soon, Dan, and are somehow able to get more sleep. Pred doesn't affect my sleep much, even at the oral high doses, but I've never had an infusion of it and 1000mg. sounds astronomical. I think that would keep me awake, too, not to mention how it would make me feel. As for oral CTX, I was very happy with how quickly it stopped the disease activity, especially in my lungs. Never had it by infusion.

[Alysia]

oh Dan, I am so sorry only now I read it (being busy with Phil at the hospital)
mtx sometimes is just not enough to keep the wg-monster sleeping....
wishing you fast and easy recovery. sending prayers and hugs

[Wegetarian]

Thanks for the well-wishes and the kitty-pic.

Right now they are prepping me for CTX infusion. Wouldn't allow me to leave for lunch as they wanted to start it early (there is a good Nepaleese restaurant 500m from here and I've always sneaked away for a lunch, the pred makes me so hungry and the hospital food can be... well... its hospital food).

Gone up 5-6 kilos since last Wed, that's like 1kg per day. Starting to feel the buffalo hump too.

The changes in my lungs appear to be from Wegs. Biopsy for the kidney now scheduled for Wed.

I feel real good, but have difficulty writing as I have this IV stuck in my right hand.

[mishb]

I hope the infusion goes smoothly Dan and that you can get out of that place.

Worry about getting this latest bout of WG under control before stressing about humps and lumps - you've done it before and you will certainly knock it back down again

[Wegetarian]

Yup, everything going good so far. The bag of cyclos is almost empty and zero nausea or other bad feelings. They did put something for nausea, and I got a friendly PM about asking for mesna to help prevent bladder issues (turns out they use something else here, but for the same reason). They also put a huge bag of water in me at first, and will put a second one after the cyclos.

The nurse even told me to stop drinking, I had lots of coffee and water in the morning and now with the IV's they don't want me to take too much fluids.

Called a friend and got him to agree to bring me some take-out and chocolate in the evening. So looking forward to it since the pred makes me feel like I'm starving.

The only downside is that they only serve ONE cup of coffee! Can you believe it? They bring it with breakfast and its not even strong. I did convince the to bring two cups with my breakfast tray, but like that would do me for the day. Last summer when I was hospitalized I realized they had a fridge for patients, figured they would have one here so I bought this cold coffee in one litre packs and go fill my cup throughout the day. Unfortunately its in the other wing and I don't want to lug this huge IV thing there, but this angel of a nurse fetched my bottle for me so now I'm getting my fix of coffee while getting a fix of CTX. Woohoo! Hooray for coffee!

[Wegetarian]

So yesterday they said they'll turn me over to the Neph. department as the kidney involvement is the main issue now. They did take another X-ray of my chest, since the one they got weren't too clear and although it may well have been Wegs it could also be a fungus or tumor. I told the doc that it sounds good, and I realize Wegs doesn't protect me against any other disease so I appreciate that they check it it. Isn't it wonderful when you steal the words of a smart forum memmber, and then the doc now thinks I'm the smart one

Also my weight went up about 7 kg in 5 days, obv liquids, but they wanted to make sure there is no liquid in the lungs as I developed a bit of a cough (I blame the pred).

They also wanted the biopsy from my kidney, but said they don't need to wait for the results since it should be apparent that they are involved but they want the biopsy for closer inspection so the plan was that I come today at 7am, have the biopsy at 9.30 and after 4 hours of rest I'm OK to leave the hospital. Well... it didn't go that well. During the biopsy they said that they'd like to take two samples, because they will have a much easier time analyzing them and if I don't feel too bad they will do it. I said I got some stomach pain from the cut, but its OK to take two. She noticed that there was some internal bleeding from the first cut and said she won't take another one.

They took some extra bloodtests to see if my hemoglobin was dropping, but my last test was a few days ago so they couldn't be really certain if it had dropped after the surgery or not and decided that I should stay here for the night and we'll check again tomorrow. I think I'm fine though, I mean they checked the bandage and it was OK and they monitored my pulse and pressure every hour but I'm cool with staying a bit extra. I really don't want to run up-and-down the stairs at home while wondering if I have some internal bleeding in my kidneys.

So with any luck I'll be at home this time tomorrow for good.

The plan is 5x cyclo IV's, then probably Aza. Heard that they initially planned pred for 1.5 years, keeping 80mg for a month and then 60 for two weeks. Man its gonna suck... I hate what high dosages of pred do to me. Well... I guess its relative... I mean it does wonders too.