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Sangye
12-25-2010, 03:00 AM
I've been sick all week with a cold and it just keeps getting worse. The first couple days it wasn't a big deal other than how weak it made me. I thought it was licked by the second day. The past couple days it really took off. The nasal congestion ran amok and has jammed up my sinuses. They are so painful-- my whole head is pounding, my eyes are swollen and watery, etc... Most of you know the drill. I don't normally have sinus stuff, even if I get a cold. I have an on/off productive cough.

So far the mucus is pale yellow so I don't think it's bacterial. But I'm unbelievably weak. No fever. My appetite is not great. I've been using the neti pot-- a little temporary relief, not much. I bumped up my pred from 3.5mg to 4mg today, hoping to control some of the inflammation and pain, and give me more energy. I also used Flonase this morning.

My PCP's office seems to be closed and no one is answering my page. I rarely see her anyway. Does anyone have any ideas or advice?

BTW, I know how I got sick. Last week Dr Seo said my vitamin D levels were low (from testing a couple months ago. Grrr. Would've like to know sooner.). I was also overdue for a chiropractic visit. I got sick Sunday night within a few hours of being near someone who had a bad cold. :glare:

misskay
12-25-2010, 03:20 AM
Got the same thing happening here Sangye... mine started about 2 days after we stopped the Cytoxan. If you have a vaporizer, try a little eucalyptis oil or Vicks Vaporub in the water, seems to help me *at least as long as I hover over the thing*
Going to give mine a few days to straighten up... then call the ENT and Pulmy since I have the wet, barky cough as well as the sinus issues.... DO NOT need pnuemonia setting back in at this point.

Sangye
12-25-2010, 03:24 AM
Oh, I hope you feel better. Are you sure yours isn't Wegs since it started after going off ctx?

I don't have a vaporizer and can't use things like eucalyptus anyway because I live in one room and have a bird. Things like that can be deadly to them.

DEE
12-25-2010, 03:40 AM
oh dear hope things imptove soon Sangye thought i was starting with a cold yesterday fingercrossed think its holding off :thumbup:
take care of you :hug1::hug2::hug3:

misskay
12-25-2010, 03:51 AM
That's why I'll call the doc Monday if I'm not seeing improvement... not sure it isn't the Wegs... haven't reached 'remission', and no Cytoxan. Also not sleeping well (but that could be due to doubling the Pred from 7.5 to 15mg), and woke up last night with night sweats again :/

Jack
12-25-2010, 04:49 AM
Sorry to hear you are feeling poorly Sangye. I'm afraid I have no advice that you won't already know - just look after yourself and have plenty of warm drinks. Upping the Pred is probably a good move in the short term (in fact I've just treated myself to a double dose for other reasons) and perhaps something like Paracetamol might help.:hug2:

freakyschizogirl
12-25-2010, 04:57 AM
Aww sorry to hear you are sick Sangye. If i am round people coughing i tend to wrap my scarf round my mouth and nose to stop those pesky germs from getting in.

Hope you feel better soon :hug1:

me2
12-25-2010, 05:10 AM
Sorry you have contracted this bug. I have developed extreme methods of dealing with my sinuses that most people are not willing to do because they involve some initital discomfort. Here is one that involves no disomfort and I have my own lonesome theory as to why it is a good idea.
Buggies like to be comfortable. Our sinuses are like a trip to Hawaii to bugs. Also, part of my theory is that the body must ultimatly defeat the bug invasion. Good blood flow will be the supply lines. So, to the method James...

Get a bag of small cubed or crushed ice. Take a wash cloth and run hot water from the faucet until hot as can be . Soak wash cloth in hot water. Wring it out and wrap it around the ice bag. Take the warm feeling bag and lay down and put it on your forehead. Gradually it will turn cold. So gradual that it is not uncomfortable. I usually do this treatment for about a half hour.

When you get up and quit. Your forehead will be ice cold. It feels better. Your body responds by increasing blood flow. Blood flow fights the war.

To really go nuts, like I do when under attack, then go to the shower and take a shower. Put you face directly in the shower stream so that the water is pounding on your face. You fore head, nose, and those cheeks. Then reach for the teperature control. This only works if you have the single type control that is higher up on the wall, so you do not move your face during the whole procedure.
Turn up the hot water. Gradually turn it up in increments. You will be able to get the heat up to an astonishing degree. I do not know why the face can adapt to such heat. I have tried it on hands and feet and they do not adapt as much. I have had other , normal people, try this and it seems to be true for everyone.
After getting the heat up quite hot let it blast those sinuses. Then abruptly turn the water off. When you come out your face will be beet red. It feels good. The sinuses get a massage and increased blood flow.

If my crazy stuff doesn't work for you its ok. You will get better anyway. I hope it is soon.

BrianR
12-25-2010, 06:43 AM
Hi Sangye. Sorry to hear about the sinus cold. What a bummer! (er...header). Marta has sinus involvement and just got a corticosteroid nasal spray. She has only used it once and intends on using it very infrequently but she did say it helped. Her Doc said she could "hit it pretty hard" if she wanted to with one shot in the morning and a double shot before bed. Just a thought as maybe it keeps the steroid limited to the nasal passage rather than oral pred into your whole system??????

Get better!

pberggren1
12-25-2010, 07:18 AM
I'm sorry to hear you are suffering like this Sangye, especially at Christmas time. I know it must be bad if you are resorting to using Flonase.

andrew
12-25-2010, 08:33 AM
Ouch Sangye that's not fair! Just read me2's solution. I reckon it's crazy enough to try, at the very least it'll be a diversion :) I hope you're better soon whatever happens.

elephant
12-25-2010, 12:07 PM
Sangye a cold that is getting worse doesn't sound like a cold. Hope you get your answers soon and get to speak or see a doctor soon. Thinking about you.

Sangye
12-25-2010, 12:24 PM
Thanks you guys. It's been improving a bit throughout the day, but is still pretty bad. That's the weird part-- every day it gets better as the day goes by and then hits hard during the night. We'll see if I've turned a corner tonight. I got some benadryl in case my sinuses get out of hand tonight.

Terri
12-25-2010, 02:34 PM
Ahh Sangye, sorry to hear you are not feeling well.
Hope you can see the up side soon.
Take care and Happy Holidays to everyone!

Sangye
12-27-2010, 01:47 AM
Today is the first morning I woke up not feeling like death warmed over. I slept pretty well and don't have all the congestion. I do still have some chest junk that is only noticeable if I cough. It's very odd. I don't have any urge to cough but if I do, a lot of mucus comes up. I keep making myself cough to keep it moving. I also took Mucinex the past few nights to keep it moving.

Thankfully I didn't need to resort to me2's extreme sinus-clearing measures. I mean, holy cow. I think my sinuses got scared just reading that and figured they'd better get to work. :ohmy:

It's amazing how a simple cold flattened me so much. It proves that just 2 of the things I usually do-- maintain proper vitamin D levels and stay adjusted-- make a huge difference.

me2
12-27-2010, 04:02 AM
This is good news. Another set of sinuses 'scared straight'. Getting well is the important thing. I too take vitamain D twice a day to keep those levels up. I live in the 'dark' state of Washington so I consider it especially important.

Sangye
12-27-2010, 04:09 AM
This is good news. Another set of sinuses 'scared straight'.
LOL For sure! :w00t:

DEE
12-27-2010, 04:28 AM
glad you are feeling better today :smile1:

elephant
12-27-2010, 09:16 AM
Sangye sounds like the drainage had a party in your lungs. Glad you coughed those party animals out! LOL!

Sangye
12-27-2010, 10:02 AM
Yeah, they're still hanging around asking if they can party again. Mucus is so disrespectful. It'll wreck the whole house if you let it. :biggrin1:

Elena
12-27-2010, 01:26 PM
Just have a question about corticosteroid nasal spray. I'm using nasonex (don't know if that's what it's called outside Norway as well) as maintenance/prevention. To hinder new sinus infections. Is this normal? From what you guys have written in this thread it seems this isn't normal or even a "good" thing :
I know it must be bad if you are resorting to using Flonase.

pberggren1
12-27-2010, 04:25 PM
I would stay away from it if you can and just use nasal irrigation.

elephant
12-27-2010, 10:21 PM
I agree with Phil. I had multiple ENT's pushing me to use it and I used every kind of steroid nasal spray out there. They were hoping it would open up the sinus and keep infection away. The nasal sprays did not work, and if you continue to use them....one of the side effects is glaucoma. You can also get fungi infections and all sorts of lovely stuff if you use long term. I Figured this out when I stopped using the nasal sprays... the glaucoma got better. I also have been on a high dose of prednisone for years...but down to 5 1/2 mg now. Sorry to be a downer. :(

Sangye
12-28-2010, 01:30 AM
Elena, corticosteroid nasal sprays are very bad to use on a regular basis. Weggies don't need more steroids. Even though the MDs will tell you the amounts in the sprays are too low to cause much trouble, that's not true. ANY steroids are enough to cause trouble, especially when used chronically.

Also, all nasal sprays (except for saline) cause "rebound" inflammation. This is a well-known side effect and is listed on the product. It means that once the drug wears off, the inflammation in your nasal passages and sinuses actually increases to worse than it was before you used the spray. It creates dependency on the spray.

JanW
12-28-2010, 01:42 AM
I used nasonex for years and my sinuses never got better because my WG was undiagnosed. It does leave me to wonder whether it had a contributing effect on my severe osteo, considering that I was never on long-term oral steroids for my (misdiagnosed) asthma, and inhaled steroid nasal sprays were one of my main ways for getting the drug (the other being occasional pred prescriptions).

Brooke
12-28-2010, 03:11 AM
Glad you are feeling better Sangye. I just got over some sinus crud. I took a hot washcloth and placed it over my face, basically from the nose up to my forehead and left it there for a while. I took tylenol as well, that seemed to help with sinus pain and pressure.

Sangye
12-28-2010, 03:23 AM
I've said many times that I don't know how you guys with sinus involvement can stand it! I was doing very poorly last week, but the thing that really put me over the edge was having my sinuses jammed up.

I didn't want anything to do with heat, though. Cool sounded better to me. I did Flonase once and upped the pred from 3.5mg to 4mg for 2 days. That seemed to do the trick. I kept up with the neti pot, too. These are all things I've learned from reading about what you guys with sinus issues do. I really appreciate the knowledge base we have! :thumbsup:

Jack
12-28-2010, 07:14 AM
Cold used to help my sinuses a lot too and I would even go outside and stand in the cold for some relief.

Hope you are getting over your troubles now Sangye, I have not been feeling that good myself, but it is hard to put a finger on it (tinnitus, verigo, stomach, lack of any energy). I hate days like that and start getting bad thoughts about heart failure or kidney problems even though the symptoms don't fit. I'm supposed to be visiting my sister tomorrow so I might go for the Pred solution to get me through the day.

elephant
12-28-2010, 02:32 PM
How is your blood pressure Jack? It could be low or high?

Sangye
12-28-2010, 02:55 PM
I had a feeling you might be under the weather, Jack. Do you think you're fighting off a bug? I don't recall if you normally have a bit of vertigo. It could be an inner ear virus if it's new.

I'm a lot better but it's in my lungs now. Today was my first day out in 4 days. I didn't have an urge to cough all that time, but would make myself cough periodically to get the stuff out of my lungs. After being out (in the unbelievably freezing cold) to do errands today, now I'm coughing up a storm. I'm going to see my PCP tomorrow so she can take a listen. It's not bacterial, just making sure it isn't digging its heels in.

pberggren1
12-28-2010, 04:12 PM
I had a feeling you might be under the weather, Jack. Do you think you're fighting off a bug? I don't recall if you normally have a bit of vertigo. It could be an inner ear virus if it's new.

I'm a lot better but it's in my lungs now. Today was my first day out in 4 days. I didn't have an urge to cough all that time, but would make myself cough periodically to get the stuff out of my lungs. After being out (in the unbelievably freezing cold) to do errands today, now I'm coughing up a storm. I'm going to see my PCP tomorrow so she can take a listen. It's not bacterial, just making sure it isn't digging its heels in.

How do you know that it is not bacterial? I'm glad you are able to cough the stuff up to get rid of it.

Did you get lots of snow there as well like in NY and Boston?

Sangye
12-29-2010, 01:13 AM
I don't have copious amounts of mucus, even when I cough stuff up. It's light yellow or clear. And the fact that I'm stronger tells me it isn't bacterial or getting worse.

Here in Maryland we got.... 3 snowflakes. Yup, it was quite the blizzard. I was disappointed because I love the snow. But since it makes getting around much more difficult for me it's good that it didn't happen while I'm sick.

Psyborg
12-29-2010, 01:36 AM
I feel your pain...I'm on cold number 2 from people at work that insist on coming in sick. Annoying...I don't know how many ways I can ask people to stay away. The boss even told people to work from home if they are sick, but no they insist on coming in.

Sangye
12-29-2010, 05:09 AM
Yeah, it's very frustrating. You can take all the precautions in the world but without the cooperation of those around you on a regular basis, you can get into trouble.

pberggren1
12-29-2010, 07:39 AM
I don't have copious amounts of mucus, even when I cough stuff up. It's light yellow or clear. And the fact that I'm stronger tells me it isn't bacterial or getting worse.

Here in Maryland we got.... 3 snowflakes. Yup, it was quite the blizzard. I was disappointed because I love the snow. But since it makes getting around much more difficult for me it's good that it didn't happen while I'm sick.

So let me get this straight. So if one has a cold and is improving and getting stronger then it is not bacterial?

I am glad you are getting better and that you don't have to deal with a bunch of snow.

Sangye
12-29-2010, 01:49 PM
So let me get this straight. So if one has a cold and is improving and getting stronger then it is not bacterial?


It means it's less likely. If someone is not immune-compromised they can fight off many bacterial infections without antibiotics. But an immune-compromised person will probably not be able to kick a bacterial infection.

elephant
12-29-2010, 11:29 PM
In rare occasions I have seen patients come in with almost 6 months having a sinus infection and the only symptoms was a runny nose on and off. They also had to be treated with a powerful antibiotic. If cold like symptoms persist over a month, then I suspect infection.

Sangye
01-03-2011, 02:38 AM
I started antibiotics (Augmentin) a couple days ago because I wasn't getting better and have sizeable fatigue. I also had a few sweats and chills, so I thought a bacterial infection might be brewing. I've taken 2 days' worth of the antibiotic and have had very bad stomach pain and diarrhea (going 5 times in 10 minutes). I don't think I can continue taking it--at least not today. I'm going to stop for today and call my doc tomorrow.

In 2007 I was hospitalized with severe intestinal inflammation after just 1 or 2 doses of amoxicillin. (Augmentin is a combo of amoxicillin and clavulinic acid) I'm wondering if I can take this drug again.

Jack
01-03-2011, 02:59 AM
Try a different antibiotic Sangye. You should not take one that you react so badly to and there is quite a choice if you need something non specific.

Sangye
01-03-2011, 03:03 AM
Yeah, I just don't see how I can take 7 days of this. It's gotten exponentially worse with each dose. I'm allergic to 2 other classes of antibiotics, so we don't always have a lot of choices. But there should still be something I can take. I could page them and get a different prescription today, but I don't think my gut could handle it. I'm gonna let my gut recover a bit today and call them tomorrow.

JanW
01-03-2011, 03:24 AM
Good luck Sangye!

Palmyra
01-03-2011, 04:16 AM
Hey there Sangye,
Could it be a viral cold? If you are having GI issues with the Augmentin, Dr P here (joke...) would advise you to discontinue. My daughter (Crohn's and Weg,) finds the only antibiotics her gut can tolerate are: azithromycin (especially for respiratory infections, hope you are not allergic to the e-mycins!), bactrum and flagyl.

All but bactrum are used to treat colitis.
Have you tried any pro-biotics for your gut? It helps restore flora after a bout, for the daughter.

Good luck to you dear...no fun being under the weather.

elephant
01-03-2011, 04:22 AM
Hi Sangye, I am allergic to penicillin, but can take ceftin for sinus infections and other bacterial infections. It doesn't seem to cause stomach issues for me either. Glad you are going to the doctor, are you seeing the WG specialist or GP?

Brooke
01-03-2011, 08:53 AM
Get well soon Sangye!

Sangye
01-03-2011, 01:06 PM
I'm allergic to azithromycin and the fluoroquinolones (Avelox, levaquin, cipro). I don't think the reaction to amoxicillin is an allergic one, just a severe GI intolerance. (Maybe that's an allergic reaction, I don't know) I always take probiotics and it didn't touch it. The pain started almost immediately after the first dose and got worse with each dose.

The cold was definitely viral and I held off taking an antibiotic. My PCP gave me the scrip to use if I got worse. I'm not convinced that it's bacterial, but figured it was worth a try to see if I improved.

Thanks for the well wishes, everyone.

elephant
01-03-2011, 10:17 PM
Sangye how are you feeling today?

Sangye
01-04-2011, 12:24 AM
My stomach feels better-- whew! Otherwise I feel the same as I have for the past week-- very draggy, fatigued, some congestion (not tons), cough. I'm not getting worse (not drastically, anyway) but I'm not getting better. I think the Wegs is waking up more and more because I have a fair amount of joint pain and stiffness. Maybe increased disease activity is making it harder to fight off this bug? I have no idea what's going on.

I do labs at JHU on Friday. I'll drop a note to Dr Seo in the next couple days to let him know everything.

LisaMarie
01-04-2011, 03:47 AM
Hey augmentin is a wicked drug because it has Clavulanate Potassuim in it which tears up your gut and I am allergic to so I can not take augmentin but I can take other PCN...so maybe you have an intolerance to the clavulanated potassium...just a thought ,,,,hope you are feeling better ?:biggrin1:

drz
01-04-2011, 05:06 AM
My stomach feels better-- whew! Otherwise I feel the same as I have for the past week-- very draggy, fatigued, some congestion (not tons), cough. I'm not getting worse (not drastically, anyway) but I'm not getting better. I think the Wegs is waking up more and more because I have a fair amount of joint pain and stiffness. Maybe increased disease activity is making it harder to fight off this bug? I have no idea what's going on.

I do labs at JHU on Friday. I'll drop a note to Dr Seo in the next couple days to let him know everything.

Do any of your markers generally increase along with clinical symptoms? I am about the same state with some mild symptoms like fatigue, joint pain, congestion etc and markers have increased some. I expect I will increase my Azathioprine today or tomorrow since my TPMT test results are back from Mayo and hope that helps contain the Wegener's. What meds are you taking to control the Wegener's at this time. Are you taking anything that might cause side effects like what you are experiencing. Hope you get better soon. I remember one of my doctors saying when I was first diagnosed and in the hospital that, if you are not getting worse, then you are getting better. This seemed to be generally true even though it sometimes took awhile. Good luck in getting it figured out.

pberggren1
01-04-2011, 07:46 AM
Oh Sangye, I sure hope you are not flaring. I cried for you last night after reading what you are going through with the antibiotics. Please get better soon. I am always thinking of you.

elephant
01-04-2011, 08:17 AM
Sangye glad you on top of this. Need to get this straighten out so that if it is a infection is doesn't cause a flare....and if it is a WG flare need to put out the little fire. I know you already know this, but I like to say it. :)

JanW
01-04-2011, 08:23 AM
Sangye - you're due for another round of rtx soon, aren't you?

Sangye
01-04-2011, 11:58 AM
Thanks everyone. drz, I don't have upper respiratory involvement so the congestion wouldn't be from Wegs. Phil, it broke my heart that you were crying about me! You have so much on your plate. Please don't worry about me.

Lisa Marie, that's good info about Augmentin. I suspect the problem is the amoxicillin in it, since I had a problem with straight amoxicillin in 2007.

I saw my chiropractor today. I've been having trouble with diaphragm function for many months and it's been really bad lately. That can keep you from taking a deep breath and can prolong a respiratory infection and cough. I wanted to get that corrected and see how I do before calling my PCP or emailing Dr Seo.

Sangye
01-04-2011, 12:01 PM
Sangye - you're due for another round of rtx soon, aren't you?
We're hoping to wait until March--a year since the last one. I have a feeling it'll be sooner, maybe February.

elephant
01-05-2011, 01:34 AM
Sangye, it sounds like your trying everything before you call the doctor....sounds like someone I know. :)

Sangye
01-05-2011, 01:56 AM
Elephant, don't worry, Dr Seo already knows about the increasing Wegs symptoms because I saw him Dec 15. And my symptoms right now are so unclear that my PCP wouldn't be able to sort it out. Sometimes you have to let a few days pass to get an idea of what's going to resolve and what isn't. I don't want to take antibiotics if it's just a lingering cold. (Especially not after what happened with just 2 day's worth)

If the diaphragm isn't working properly you can't take deep breaths and clear out the lungs. It also causes shortness of breath.

Lightwarrior
01-05-2011, 07:59 AM
I'm so sorry to hear that things are not well with you Sangye. Can your chiropracter friend impact the diaphragm?? You need a functioning diaphragm to breathe.

Sangye
01-05-2011, 08:16 AM
Yeah, it's been a chronic problem. I saw him yesterday. We tried something different that will hopefully correct it.

Sangye
01-08-2011, 12:33 PM
Man, I'm just not doing well at all. I seem to be over the cold but I have a bad dry cough. I can't take a deep breath without coughing. And I hurt everywhere-- literally every joint is sore. Still really weak, too. I emailed Dr Seo yesterday but didn't hear back. (I made sure his receptionist passed the email to him) I did monthly labs at JHU today so maybe by next week we'll know what's going on. I feel exactly like I did when my last flare was cranking up.

I'm feeling pretty down about all this. I got dx'ed in June 2006 and except for 2 two-week periods, I have never had a time where I felt okay. Last year I finally got into remission but within a week had the acute hearing loss/ vertigo thing and had to go back on high dose steroids. It should've only been 2 weeks but it turned into months. It messed me up so badly and now I can't get below 3mg pred. In November I felt like I was stabilizing a bit from all that, then the Wegs symptoms started cranking up. Then the cold from hell, and it's gone downhill from there. And if it is Wegs making me feel awful right now, we'll re-treat with rtx which makes me feel even worse for 6 weeks. Something to look forward to.... I'm feeling hopeless about ever getting out of this stupid hole. :sad:

drz
01-08-2011, 12:52 PM
Man, I'm just not doing well at all. I seem to be over the cold but I have a bad dry cough. I can't take a deep breath without coughing. And I hurt everywhere-- literally every joint is sore. Still really weak, too. I emailed Dr Seo yesterday but didn't hear back. (I made sure his receptionist passed the email to him) I did monthly labs at JHU today so maybe by next week we'll know what's going on. I feel exactly like I did when my last flare was cranking up.

I'm feeling pretty down about all this. I got dx'ed in June 2006 and except for 2 two-week periods, I have never had a time where I felt okay. Last year I finally got into remission but within a week had the acute hearing loss/ vertigo thing and had to go back on high dose steroids. It should've only been 2 weeks but it turned into months. It messed me up so badly and now I can't get below 3mg pred. In November I felt like I was stabilizing a bit from all that, then the Wegs symptoms started cranking up. Then the cold from hell, and it's gone downhill from there. And if it is Wegs making me feel awful right now, we'll re-treat with rtx which makes me feel even worse for 6 weeks. Something to look forward to.... I'm feeling hopeless about ever getting out of this stupid hole. :sad:

Anything we can do? Would flowers help? Sorry you are feeling down now. You generally seem so able to handle the stress of this difficult disease so it must be hard to be so down now. What does Rituxan do to you that makes you feel so bad? I 've only had a couple IV of Rituxan early in my treatment and don't remember much about any side effects exccept my bladder locking up and creating bladder infection. Colds really sap your energy so hope you can get some rest. Would a strong narcotic cough med help you get some rest? just a thought. We care about you!

Sangye
01-08-2011, 01:48 PM
Thanks, drz. I'm usually a very resilient and hopeful person. I've gone through periods with Wegs where I feel hopeless about things improving. I think that's pretty normal, considering how it's gone.

I don't know if it's the rtx or the 100mg solumedrol that I get along with it, but I get extremely weak soon into it, and by the time the infusion is over I can't even walk out. I stay very weak until the next infusion. Each week I get weaker and weaker, barely making it through the month. I've done the 4-dose protocol both times and will likely do the 2-dose protocol next time. Maybe it'll be better in between infusions.

Fortunately I'm not coughing when I lay down. That's usually the case with me, whether I have pneumonia or hemorrhaging lungs. I've been sleeping okay, but last night I was in tons of pain. Thanks again-- I appreciate your kindness. :smile1:

pberggren1
01-08-2011, 01:52 PM
I so understand what you are going through right now. If I were there I would hug you and not let go. Have you tried using a humidifier at night to help with the dry cough? I sure hope it is not the Wegs flaring up for you. You have to drive all the way to JHU once a month just to have blood work? Can't they do it at the local hospital or lab?

me2
01-08-2011, 01:59 PM
Sangye, So sorry you are still feeling down. I am a very optimistic person like you and I have at times felt myself tested to the limit.
My scenario has some simularities and some differences from yours. I have been batteling my flare for ten years now but with some longer periods of time of feeling ok. Not great but ok. This illness knows no decency and is not a respector of persons or effort. Having said that, it can also get better unexpectedly. I am doing better in recent times than my fears would have let me believe possible. I've still got a ways to go to say I can let up on working on it.
I wish there were something I could do for you. You have always been a great help to me. I wish you lived closer I could bring over some veggie soup.
Its not a cure but it feels good. If there is something that I can do just say the word. I'm in an up time and I have some time right now.

Sangye
01-08-2011, 02:01 PM
Yeah, you definitely know what I'm going through Phil! The cough isn't bad at night, it's all day long. I've felt the Wegs waking up since November but Dr Seo wants to wait until my labs show it and my symptoms get bad enough to require re-treatment. I don't have any option if rtx stops working or I become allergic to it, so he wants to limit its use in me. I get that, but it's also depressing to think that I have to crash so badly before we re-treat.

I go to JHU weekly anyway, and I trust them to do my labs properly. The local labs and hospitals are awful. It's worth the drive.

Sangye
01-08-2011, 02:02 PM
Thanks, Kirk. I really appreciate that, and I'm glad you're going through a good period. I hope it gets better and better for you.

Jack
01-08-2011, 09:20 PM
All my sympathies go out to you Sangye, I just wish that I could do more to help. I know everyone on the forum feels the same and we would all go out of our way to help if it was at all possible. I may have had it rough in the past (and also more recently come to think of it!), but at least I had the occasional break or could see a good prospect of improvement so it reminds me how lucky I am in many ways.
I hope you are receiving some good support from friends and that you will soon have at least a few good days to improve the mood.
:hug2:

renidrag
01-08-2011, 09:48 PM
I am sorry to hear of this setback Sangye. Will keep you in our prayers.
Dale

elephant
01-09-2011, 12:17 AM
I am sending you a big hug to you Sangye. I am so sorry you are going through so much pain. Sangye maybe your one of those people who can't get below 3 mg of prednisone. Dr Langford said that she be suprised if I was able to get below 5 mg. Please don't lose hope, and know we are here for you always!

DEE
01-09-2011, 12:40 AM
Sorry you are not so good Sanjye wish i could heip more if i could please take care of you DEEx:hug1:

JanW
01-09-2011, 02:38 AM
So sorry to hear that you are feeling down, Sangye. Lean on us (like we lean on you). We are here for you.

Sangye
01-09-2011, 03:27 AM
Thanks, everyone. I'm so grateful for your kindness. My friends are very compassionate (it helps to hang out with monks and nuns, you know?), and it's also nice to be able to come on here and vent.

Elephant, I got down to 1mg pred last year and was doing fine. I ran into trouble when I dropped below it too quickly--not Wegs activity, but adrenals shutting down. Because of adrenal issues, I might not be able to get off pred completely but probably only need 0.5 to 1mg. For the 2.5 yrs I was off pred I was in terrible shape. The disease wasn't under control, though so it's hard to say. Right now I can't get below 3mg out of concern that it'll wake up the Wegs even more.

I'm a good example of how you can have the disease under control but still be in terrible shape due to collateral damage and other complications. Really tired of being such a good example, though. :glare:

jola57
01-09-2011, 07:19 PM
I.m with you on this one and holding at 4mg,= being too scared of another flare and cytox

Sangye
01-10-2011, 01:59 AM
Jolanta, I'm so glad you got down to 4 mg. Weren't you on 10 mg for a long time?

marta
01-10-2011, 12:09 PM
Hey Sangye,

I've been thinking about you a ton lately. I've been more off the computer than on (just the odd drive-by posting) but you've been on my mind. I sincerely hope that things iron out for you SOON! This is crazy indeed what you're going through. I hope with all my heart that you feel better soon. You're such an inspiration for soo many people, and if I could magically appear there and make things better, I would in a flash. Take care of yourself.

dunkie2202
01-10-2011, 12:29 PM
Sangye Isn't there a blood test that can check if your adrenal gland is working? I thought I read that somewhere.

Sangye
01-10-2011, 01:59 PM
Yes, it's AM Cortisol. But you can't be on any pred or it just measures the pred.

jola57
01-10-2011, 06:46 PM
Yes I was on 10 for 3 months. This time the tapering is working and I don't want to muff it up. I took close to two months per 1mg down. On a good note, I am goin g to do the oxymetry soon to see how oxygenated I am at night when I snore. Sangye, did they start you off with the oxymetry or right away with the sleep evaluation

pberggren1
01-10-2011, 06:55 PM
Yes I was on 10 for 3 months. This time the tapering is working and I don't want to muff it up. I took close to two months per 1mg down. On a good note, I am goin g to do the oxymetry soon to see how oxygenated I am at night when I snore. Sangye, did they start you off with the oxymetry or right away with the sleep evaluation

Oxymetry, is that where they put that little clamp on your finger when the nurse comes around to check your blood pressure as well?

elephant
01-10-2011, 10:17 PM
Yes, phil it is a clamp that goes on top of your finger and measures you oxygen level.

dunkie2202
01-10-2011, 10:22 PM
Yes, it's AM Cortisol. But you can't be on any pred or it just measures the pred.

The n whata happens if your addrenials don't kick back in??? back on pred :crying:

Brooke
01-11-2011, 01:42 AM
Sangye, I hope you start feeling better real soon. Sorry you haven't been feeling good lately. When was the last time you had the Rituxan Infusions?

Sangye
01-11-2011, 02:23 AM
Jolanta, measuring the O2 levels is just part of the sleep study (though I'm glad you're at least doing that). They measure if you stop breathing, how many times, and when it occurs (ie during REM sleep or not) and lots of other stuff. I stopped breathing 45 times an hour during REM sleep but they say that's normal. They didn't record my breath stopping at other times and that's why they said I didn't have sleep apnea. I'm doing the repeat study tonight.

Brooke, thanks. I did rtx last March (2010).

Sangye
01-11-2011, 02:29 AM
Jolanta, I think it's great that you're going very slowly tapering the pred. Dr Seo really emphasized this (many times!) for those who've been on pred for awhile.

Dunkie, they would never stop higher dose pred just to do the AM Cortisol. It wouldn't be accurate to do that, because obviously your adrenals won't be working. You have to be off pred completely to do the test, or maybe just on 1 or 2 mg. In my case, we think my adrenals are damaged enough to require a tiny dose (0.5 to 1mg) pred indefinitely, regardless of Wegs activity.

Brooke
01-11-2011, 05:35 AM
Sangye, do you know when you will do Rituxan again?

Sangye
01-11-2011, 06:04 AM
We're hoping to make it to March, but I'm waiting on labwork.

drz
01-11-2011, 06:27 AM
We're hoping to make it to March, but I'm waiting on labwork.

What lab work would indicate an earlier need for Rituxan treatment?

Is the cold getting any better?

me2
01-11-2011, 07:03 AM
Sangye, My thoughts are holding vigil with you as are many others here to see you get better. As a friend in China who cares about me just said "I do hope you will gets better and better until someday there is no better to go. :)"

Thank you so much for the fine tuned insight into prednisone reduction. I just read a pretty good web site about it but I still had questions. Questions you have now anwered. What is amazing is that I can guarantee my doctor would give different answers than you have and would disagree with what some of what you have said. I know from experience that your information is accurate. What I mean is that I think many doctors do not understand the fine points of prednisone reduction and use by patients who have been on it long term. I guess there are not enough of us for them to get the idea. I remember when I could just change doses willy nilly and no effect. Now it is embaressing the amount of difficulty I have going down ONE mg. No more mr tough guy.

I have big news to add. In trying to improve my current treament and secure better consultation on my future treatments I am making the trip to Cleveland to see Dr Langford. I am very excited to go. I have read her published papers and followed some of her patients here and I even met her at one of the conferences.
My current doctors made some simple mistakes with big consequences recently (again) and I just want to talk to someone who really knows this disease.
I am working on my summary of care. My current state and questions about ... well, about all kinds of stuff.
I am also changing doctors here. That is a little scary but I am hopeful to get someone I can work with. I will of course ask Dr Langford if she can recommend someone here.
I went to a WG conference in Cleveland a few years ago so this also feels like a somewhat of a return pilgrimage. Ironically I am not as sick as I have been the past ten years. I feel good enough to walk around, my mind is clearer than it has been in a long time. What a strange time to seek the best help huh? But like everyone else I want to feel like I am on the best program I can be and be as healthy as I can be and not go backwards right away. (I know , a tall order for an old Weggie)

I would be interested in other peoples thoughts about approaching remission. In the past treatment was continued agressively (like it was thirty years ago when I was first diagnosed). One benifit I think may have been a higher remission rate and longer remissions ( mine was drug free for twenty years). Now, to reduce exposure to these toxic drugs the treatments have been fine tuned and toned down. But have they perhaps backed off too much? How do you tell?
In my current postition I have suffered so much these past ten years with books full of episodes and pain and suffering I am ready to err on the side of being continually agressive. I am willing to take a chance on the drugs because the disease has been so relentless.
I feel blessed that I will now get the benifit of one of the great WG doctors to help me take my best shot.

I will share any good stuff that I learn when I get back as so many here share generously from their experience.

PS It is a long story as to why, but I am doing a 500 mg Cytoxan infusion this next Friday with NO anti nausea drug. Has any one else done this or have some suggestions? I have some oral promethazine that I can take. A friend has offered some Maryjane but I don't use it. Maybe I should if it would help. I had EXTREME head pain from the Zofran (anti-nausea drug) I was taking with the infusion. I did one infusion now without the Zofran and NO head pain. So that was good. Weeks of bowel trouble cleared up after quiting the Zofran too.

If anyone reading this is there in Cleveland and would like to meet a fellow Weggie let me know and we can set up a day and time to meet. I will be there Jan25 thru 28.

Brooke
01-11-2011, 07:13 AM
Sangye - Do you know if any of your B Cells have come back? Or is that the lab work you are waiting on ?

elephant
01-11-2011, 01:49 PM
Me2, I am clapping and so happy you are going to see Dr Langford. She is humble and very good! Have a safe trip and can't wait to hear all about it.

Sangye
01-12-2011, 04:53 AM
Brooke, we are looking at inflammatory markers (ESR and CRP) and checking if the type of B cells killed by rtx are returning.

Sangye
01-12-2011, 05:01 AM
Sangye, My thoughts are holding vigil with you as are many others here to see you get better. As a friend in China who cares about me just said "I do hope you will gets better and better until someday there is no better to go. :)"

Thank you so much. Love that quote. :smile1:



What I mean is that I think many doctors do not understand the fine points of prednisone reduction and use by patients who have been on it long term. I guess there are not enough of us for them to get the idea. I remember when I could just change doses willy nilly and no effect. Now it is embaressing the amount of difficulty I have going down ONE mg. No more mr tough guy.Most of what I've learned about pred is from Dr Seo. He really understands pred and how much more difficult it is to taper the longer you're on it. Rheumys work with pred all the time but he's the first one I've met who really gets it.



I have big news to add. In trying to improve my current treament and secure better consultation on my future treatments I am making the trip to Cleveland to see Dr Langford. Best news I've had all day! :thumbsup:



I am also changing doctors here. That is a little scary but I am hopeful to get someone I can work with. Second best news I've had all day! :thumbup:

This is all great stuff, Kirk.

drz
01-12-2011, 01:18 PM
Brooke, we are looking at inflammatory markers (ESR and CRP) and checking if the type of B cells killed by rtx are returning.

What kind of numbers for ESR and CRP are good for you? Are the B cells removed by plasmaparesis treatment? What test measures those?

Is the cold any better? When will you get results of sleep study?

dunkie2202
01-12-2011, 11:56 PM
I am doing a 500 mg Cytoxan infusion this next Friday with NO anti nausea drug. Has any one else done this or have some suggestions? I have some oral promethazine that I can take. .

Hey me2,
They have been giving me 1000mg Cytoxin IV every mth and last week forgot to give me the anti nausea drug. I was lucky enough to have some Maxalon at home ( nausea tablets ) and just used those when I found it necessary. You can take them three times a day. Prescription needed.
I've never thought of using promethazine for vomiting. I thought they were only for allergies. I personlly take them for nerve rash to stop me from scratching. They will make you sleep though.....but being on pred that would be a good thing aaaaahhhhhhh sleep lol

Sangye
01-13-2011, 02:21 AM
drz, as long as ESR and CRP are within normal range it's fine. However, my inflammatory markers tend to not increase until I have severe activity. Go figure.

B cell count is measured in a routine WBC count but when using rtx they also order a CD-19, which measures the sub-type of B cell that is depleted by rtx. When rtx is still working the CD-19 is undetectable. As rtx starts to wear off it begins to increase.

drz
01-13-2011, 08:05 AM
drz, as long as ESR and CRP are within normal range it's fine. However, my inflammatory markers tend to not increase until I have severe activity. Go figure.

B cell count is measured in a routine WBC count but when using rtx they also order a CD-19, which measures the sub-type of B cell that is depleted by rtx. When rtx is still working the CD-19 is undetectable. As rtx starts to wear off it begins to increase.

Thanks for the helpful info. Since you are feeling so lousy right now are any of these markers suggesting any problems or showing any indication of what treatment might help you? We are hoping that things will start to improve for you sometime soon. Being down to one spoon early in day doesn't feel good and we want you to get better.

me2
01-13-2011, 08:10 AM
Hey me2,
They have been giving me 1000mg Cytoxin IV every mth and last week forgot to give me the anti nausea drug. I was lucky enough to have some Maxalon at home ( nausea tablets ) and just used those when I found it necessary. You can take them three times a day. Prescription needed.
I've never thought of using promethazine for vomiting. I thought they were only for allergies. I personlly take them for nerve rash to stop me from scratching. They will make you sleep though.....but being on pred that would be a good thing aaaaahhhhhhh sleep lol

Hey Dunkie, Thanks for the information on your Cytoxan adventure. It sounds like you did ok so I should too even though I'm up on the top half of the world where things work differently. I didn't know promethazine was used for other things either. Now I'll have to do a little research before my big day and make sure I have the type of thing I need on hand.

Sangye, thanks for your comments above and your info about Rituxan. It gives me some questions to ask the docs now. I don't think my CD-19 was monitered at all so I question as to whether Rituxan didn't work for me.

Sangye
01-13-2011, 10:09 AM
drz, rtx worked great for me. Doing another round is all that is planned. It's just a question of how soon do we do it.

Sangye
01-16-2011, 02:14 AM
Well I'm just feeling lousy. I'm over the cold but I can't get rid of this dry cough. I cough if I take a deep breath or even a semi-deep one. I'm just wiped out, too. And lots of joint pain. Last night I was just sitting and every part of my body was hurting bad. No fevers, chills or sweats though.

I emailed Dr Seo a week ago but didn't hear back. I'm going to email him Monday morning and ask about my labs from last week and if I can do another round of rtx beginning Feb 1. I have a couple of urgent things to get done before the end of January and I think I can wait until then.

pberggren1
01-16-2011, 02:20 AM
I wish I was there with you Sangye.

elephant
01-16-2011, 02:26 AM
Sangye, I think you need to contact your doctor now, I am concerned. Sounds like Weg is moving fast on you. The cough and all over body ache is concerning.

Sangye
01-16-2011, 02:40 AM
It's not building fast--just gradually getting worse. I'm assuming my labs still look pretty good or Dr Seo would have let me know. Symptom-wise, I'm in that window where my docs (including Dr Seo) have not listened in the past when I say I'm not doing well. When we wait until my labs look bad it's too late and I wind up in the hospital. I can tell that level of bad is about a month or two away, which is why I'd rather re-treat before that starts. He also said he wants to wait to re-treat until I can't stand the symptoms so we can delay using rtx as long as possible.

I think I'm okay. This is following the exact same pattern it always has. Of course I could be wrong about that and this could be the last post you ever receive fro.........

(Just kidding :laugh::blink:)

drz
01-16-2011, 05:02 AM
It's not building fast--just gradually getting worse. I'm assuming my labs still look pretty good or Dr Seo would have let me know. Symptom-wise, I'm in that window where my docs (including Dr Seo) have not listened in the past when I say I'm not doing well. When we wait until my labs look bad it's too late and I wind up in the hospital. I can tell that level of bad is about a month or two away, which is why I'd rather re-treat before that starts. He also said he wants to wait to re-treat until I can't stand the symptoms so we can delay using rtx as long as possible.

I think I'm okay. This is following the exact same pattern it always has. Of course I could be wrong about that and this could be the last post you ever receive fro.........

(Just kidding :laugh::blink:)


How many Rituxan treatments have you had for Wegener's disease? Are they concerned about the impact of Rituxan on your body so they want to stretch them out as much as possible. I know people who have had a dozen or more treatments complain about various side effects from it. I only had a couple sessions and don't remember what impact it had on me.

Sangye
01-16-2011, 05:26 AM
I've had two rounds of 4 infusions each and we plan to do a 2-infusion round next time since it seems to work just as well.

Dr Seo is delaying treatment for two reasons
1) No other option (I can't use ctx again because it's toxic to my bone marrow) and
2) Too many unknowns about the long-term side effects since I'm "only" 47.

Sangye
01-18-2011, 02:49 AM
I emailed Dr Seo this morning but forgot that it's a holiday (Martin Luther King Jr's birthday for non-Americans). I'm at the point where just sitting to meditate I have so much pain I can hardly focus. :sad:

DEE
01-18-2011, 03:56 AM
:hug2::hug3::hug1:DEE x

pberggren1
01-18-2011, 06:52 AM
Oh Sangye, I wish I could take your pain away. I sure hope you are not flaring but as you said it sure points to it. I hope Dr. Seo gets back to you soon. When is your next appt. with him?

Sangye
01-18-2011, 07:05 AM
Thanks guys. I don't see him until March. I don't need to see him right now since I can describe what's going on. He might want a chest x-ray or CT to make sure I don't have a lung infection before doing rtx. I'd be okay with that.

Sangye
01-19-2011, 01:10 AM
Just got an email back from Dr Seo's receptionist saying he agrees with restarting rtx. What a relief! (well, you know--sort of) :rolleyes1::blink:

Jack
01-19-2011, 01:28 AM
It may not be ideal, but it sounds like this is what is needed. Hope things look up soon.

Sangye
01-19-2011, 01:38 AM
Yeah, it's definitely needed. I've noticed lately I'm looking for another reason (besides Wegs) for this pain or that symptom. Like my wrist will start hurting and I think "Well, I did carry that heavy grocery bag....." Or I'm stiff all over and think "Maybe I need more fish oil." I noticed this in my daily log and know from past experience that it means the Wegs dog is barking.

It's not denial, since I felt the Wegs waking up. It's more like doubting myself because the symptoms are subjective and vague. Wegs is crazy-making.

Palmyra
01-19-2011, 02:00 AM
Best wishes to you Sangye, and I hope the Rtx works its magic very quickly. In the interum, I hope you find a way to feel better...distraction is good! I have a task for you that might keep you busy for a moment. Where/how did you get that picture of Putin reminding us to 'stay on task'. I loved it!:thumbup:

Sangye
01-19-2011, 02:08 AM
I've always got plenty to do-- no worries there! Andrew is the one who put the Putin pic in our choices of "smileys." To use it in a post, click on the smiley face above your reply and scroll down to it. You can also click on Go Advanced instead of Post Quick Reply and you'll see it in the list of smileys there, too.

DEE
01-19-2011, 03:15 AM
Sangye so giad things are going to be sorted for you and for your comment about your hands !!
ive had the same for about ten days not been able to grip with either hand and no ptressure in them if that makes sense
have got worse since i lowered preds worse at night seeing gp wednesday hopefully
like you i have been saying to hubby its alright it will go away tomorrow :rolleyes1:
once again i hope they sort things for you quickly DEE x

Sangye
01-19-2011, 03:18 AM
Dee, it sounds like your Wegs is not under control. I wonder if you have what Dr Seo called "rumbling Wegs." That's what I had when I was on cellcept. Since you were on ctx for so long, maybe you need rtx. You have to be able to lower the pred.

DEE
01-19-2011, 03:47 AM
yes i know what you are saying is right , i so want to get off the preds and im due my other cataract surgery in two weeks !!! will let you know what tomorrow brings
take care of you DEE x

Brooke
01-19-2011, 06:22 AM
Good luck to you Sangye!

Sangye
01-19-2011, 07:34 AM
The infusion clinic called to schedule the rtx and said the order was for 4 infusions instead of 2 like we planned. I emailed Dr Seo's office to ask why he changed his mind. His receptionist said she just wrote the order based on the last one.

This is an excellent example of why you have to be proactive your care. I almost didn't email him to ask why he ordered 4. I figured he had a good reason. If I hadn't, I would have received twice as much rtx as he wanted.

elephant
01-19-2011, 10:01 AM
Glad you on the ball Sangye and you will put this barking WG to sleep. The next one is in Feb or sooner?

Sangye
01-19-2011, 12:41 PM
Wow, I posted the info but it's disappeared....

I'm doing the first infusion on Feb 2. Still waiting to hear back if we're doing 2 weeks in a row or skipping a week. I'm really happy about doing only 2 infusions vs 4, but I have to say I'm also worried that it won't work as well. I just have to trust the Wegs docs who say it does.

elephant
01-20-2011, 08:15 AM
Sangye just take it one day at a time. You never know the 2 infusions might put the WG dog for a very, very, very, very long timmmmeee.zzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Sangye
01-20-2011, 09:12 AM
Yeah, it's just my own worrying--nothing based on fact. The facts show that 2 infusions work just as well as 4. I'm gonna start telling myself that 4 infusions worked but it was overkill. :biggrin1:

Elena
01-20-2011, 09:13 AM
I've never gotten more than 2 infusions.. With 14 days inbetween, if I'm remembering correctly. It's always worked ok with me. Hope it does for you as well Sangye! You really do deserve it.

Sangye
01-20-2011, 09:21 AM
Thanks, Elena. We're doing them 2 weeks apart, which is the standard protocol for 2 infusions. I'm hoping I'll tolerate it better than the weekly infusions for a month!

Elena
01-20-2011, 09:33 AM
I'll cross my fingers for you!

drz
01-20-2011, 02:40 PM
Thanks, Elena. We're doing them 2 weeks apart, which is the standard protocol for 2 infusions. I'm hoping I'll tolerate it better than the weekly infusions for a month!

It should give you more time to recuperate between treatments. Best wishes for successful improvement or even a miraculous remission!

Sangye
01-21-2011, 12:56 AM
Thank you! It got me into remission last year. I didn't get to enjoy it or recover at all because a couple weeks after finding out, I got the severe labryinthitis and hearing loss and had to go back on high dose pred for long than we thought. It was a mess for many months and weakened me. This time I expect FULL cooperation from my entire body. I'm issuing a formal notice to my cells. :biggrin1:

chrisTIn@
01-21-2011, 03:27 AM
I'm doing the first infusion on Feb 2.

Keeping my fingers crossed for you too, Sangye.
Hope it will work for you, and you will be going to feel better!

Brooke
01-21-2011, 03:54 AM
You go Sangye! Tell those cells who's boss!

DEE
01-21-2011, 04:36 AM
EVERYTHING crossed for you Sangye wishing you an easier road DEE x

me2
01-21-2011, 04:51 AM
NO sleeper cells !! Everybody wake up and do your job lovingly for Sangye.

Sangye
01-21-2011, 06:32 AM
LOL! Except the Wegs dog. You go to sleep, lil doggie.

Sangye
01-23-2011, 02:50 AM
I saw my Wegs ENT (Dr Kim) yesterday for a follow-up. The lovely scope up the nose and down the throat-- eech--but no subglottal stenosis and things looked pretty good "along the way," too. :thumbup:

The latest sleep study showed mild sleep apnea. I told him I barely slept because of pain but I didn't want to do another study for awhile. I also told him about the first study, in which the bed was left elevated. He was very upset that the "sleep doc" discounted my experience. He kept saying "Was that a Hopkins doc?" The docs are just not like that here. When he saw the doc's name he groaned and said he wasn't a sleep doc but a pulmy, and not the best to interpret results.

Dr Kim said elevating my head could definitely help and that I wasn't nuts. It can help with apnea and also the increased intracranial pressure I have might mean that laying flat builds pressure in my head. NO ONE thought of that last one, not even brilliant me! LOL

Anyway, with mild apnea he recommends non-invasive (ie non-CPAP) measures first. He thought the torso-length wedge pillow is perfect to try. He offered to order another sleep study if/when I wanted and we could do it at another location, too. He was awesome.

I have to go back to the "sleep doc" next month but at least I'm not concerned about anything he tells me. :biggrin1:

drz
01-23-2011, 03:37 AM
Sounds like a good consult. Good news is always welcome. Hope the ideas above help you sleep better.

pberggren1
01-23-2011, 04:33 AM
I'm glad you have a good ENT Sangye. And at least now you will have a real sleep doc.

DEE
01-23-2011, 06:41 AM
:thumbsup::thumbsup:Sangye it was my ENT that was telling everyome i had WG when no onr was listening !!
great news DEEx

elephant
01-23-2011, 10:33 AM
Great to hear Sangye. How are you otherwise?

Sangye
01-23-2011, 10:54 AM
....cough cough cough cough cough cough ouch ouch ouch ouch ouch cough cough cough ouch ouch ouch...

LOL REALLY looking forward to getting that rtx. :wink1:

pberggren1
01-23-2011, 10:57 AM
I sure hope this round of rtx can get you feeling better. I'm glad you have good friends that help you out. Without them you would not survive. It is like the same thing with me and my parents. If I did not have them I would be totally lost.

Brooke
01-24-2011, 09:07 AM
Sorry you aren't feeling well Sangye. Sounds like you had a great visit/appointment with the ENT doc. Glad things are looking good in your throat! Coughing sucks, I hope you get better soon, hang in there.

Bren
02-14-2011, 03:49 AM
HI everyone, I have a few questions. I m new to the blog and a new to Wegner's.. I have been treating for 2 years I have limited Wegner's and subglotic stenosis . my Rhym Dr has only seen one of me and had not treated that person very long before he left that Clinic.. So I asked him if he would talk with Dr Speck he was agree to that so I will be heading to Mayo on Feb 28th. and seeing Dr Kaslebauer in ENT as my Subgotic area is closing up I have had 2 surgery's. so my Dr took me off all meds was on Meth and Cytoxan.. I have come down with a whopper of a cold in my chest and ache all over like I got run over by a steam engine, ears are playing some kind of games when I move my eyes .. I have had it for 3 days don't seam to be getting any better. cough all night have had 3 nose bleeds in 24 hours that last from 10 min to 30 min. we can not get my blood pressure under control at all. it was 159/99 to 111/80. not sure if I should let anyone know or let it run its course any advise would be so grateful!!! Thanks :unsure:

DEE
02-14-2011, 03:54 AM
I would let them know NOW

Daggar
02-14-2011, 04:00 AM
Call your doctor and explain your issues ... if he doesn't seem to respond ... get to your hospital's ER.

Sangye
02-14-2011, 04:23 AM
Bren, that doesn't sound like a cold at all. It sounds like major Wegs activity. Bleeding in the lungs will feel exactly like pneumonia. It can look like pneumonia on x-ray, too. If you go to the ER (and you should) they need to do a CT scan to get a better idea of your lung situation.

Also, if you're going to Mayo anyway, I suggest you establish yourself as a patient of Dr Specks (or any of the Wegs specialists). He can come up with a treatment plan that your local doc can follow. (If you only have your local doc consult with him, you are left to the whims of your unskilled doc.) It gives you direct access to the Mayo doc, too. Elephant and many others do this and receive excellent care.

marta
02-14-2011, 05:41 AM
HI everyone, I have a few questions. I m new to the blog and a new to Wegner's.. I have been treating for 2 years I have limited Wegner's and subglotic stenosis . my Rhym Dr has only seen one of me and had not treated that person very long before he left that Clinic.. So I asked him if he would talk with Dr Speck he was agree to that so I will be heading to Mayo on Feb 28th. and seeing Dr Kaslebauer in ENT as my Subgotic area is closing up I have had 2 surgery's. so my Dr took me off all meds was on Meth and Cytoxan.. I have come down with a whopper of a cold in my chest and ache all over like I got run over by a steam engine, ears are playing some kind of games when I move my eyes .. I have had it for 3 days don't seam to be getting any better. cough all night have had 3 nose bleeds in 24 hours that last from 10 min to 30 min. we can not get my blood pressure under control at all. it was 159/99 to 111/80. not sure if I should let anyone know or let it run its course any advise would be so grateful!!! Thanks :unsure:

Bren, I just read this and started crying because I so know what you're feeling right now. I was in the same boat and also feeling uncertain as to what to do next. My family convinced me to go to Emergency and it was the best thing I ever did, so that's what I would suggest to you. Go to emergency, bring your meds and your med history with you, and tell them what you're planning on doing with Mayo, at the very least they can ensure that nothing fails on you in the meantime, at best they might hook you up with someone in your area who has experience with this whacky disease. Or they can get you into Mayo sooner based on what's going on in your body. Take care of yourself. Please!

Natalie
02-14-2011, 08:46 AM
Hi Bren , I havent meet you yet , Im Natalie :) I drop in every now and again to have a read up on posts and see whats happening with everybody and read the new members stories . It sounds like you do need some medical attention right away all your symptoms sound all to familiar . Take control and get some medical attention ASAP .

LisaMarie
02-15-2011, 03:24 AM
:sad:Bren
If you have not already seeked Medical attention ...do so now...PLEASE...I will be at Mayo seeing Dr specks 2/21-2/25/11 is the plan...I see him 2/21 at 1400...so if you want I will keep you posted...Mark has already seen him and said to bring your own copy of med records because things get lost and mis placed soo if you can send a copy and keep a copy.......i was hospitalized in September with resp failure and somethiong unidentified in my lungs ..I almost died and like you thought prior to going to the doctor it was just a side effect of the drugs...and when he wanted me to make the referral to at pulmonary doc ...i didi not think it was that big of a deal...i ended up at the specialist office with Sats of 83% and spent 14 days in the hospital and am still recovering ...so please go to the ER ...Keep us posted

coffeelover
02-15-2011, 07:21 AM
Bren,

Are you going to the Mayo in Rochester MN. I would call them and tell them you need to get in sooner. Be forceful...they will do it.

Sangye,

So glad you are feeling better.
LIsa (just catching up to these forums)

Jack
02-15-2011, 08:29 AM
Sangye - unless I've missed it somewhere, I'm in need of an update! :wink1:
How are things progressing now with this round of rtx, better or worse than expected?
How are you getting on with the wedge bed? Is it the success you hoped for?

Sangye
02-15-2011, 09:24 AM
Rtx treatments : It's very unpredictable. I'll be doing okay one minute and the next I'm shaking and extremely weak. Overall it's been much better not having the weekly infusions, though. That was like going through the slapping machine before I even got back up on my feet.

I'm not struggling emotionally with the extreme physical weakness this time. I know it only lasts 6 weeks, and since I got my important stuff done ahead of time I'm not stressed out about not having energy. It's easier when you know what to expect, even if it's unpleasant.

Wedge pillow: I wish it were wider. I have a hard time getting comfortable or turning over. Gotta be very awake to do it because I have just enough room. I'm not always comfortable. Last night my neck was hurting and I removed the wedge pillow. Boy, my airway closed right up and I broke out into a huge sweat to boot. Back on the wedge! Because the rtx is wiping me out, I can't tell yet if the wedge is giving me more energy.

Brooke
02-15-2011, 10:01 AM
Sangye - Can you tell the difference between the Rituxan Infusions? Can you tell a difference in getting 4 infusions in a month vs 2 ? I might be getting the 2 infusions this time.

Bren
02-15-2011, 10:43 AM
Thanks everyone!
went to to my Family Dr today as I had another nose bleed I have had 5 now sence Saturday. anyway they check my nose noted it was very irritated should keep it moist with Vaseline.. then they check my ear as I have like ringing in my ears and like a vertigo feeling.. hard to explain.. that was ok,, she did a chest xray and she said its normal but it did show some spider kind of feelers but the radiologist said its normal , my white blood count is 3.7 little low she said Normal is 4.1-4.9my my hemoglobin is 13.2
It just don''t seam right when I have so many symptoms and when I go to do a test , they come back all right ...I feel I m a hypochondriac but my Family Dr reassures me I m not!!!!!... does anyone else have this happen to them?
I get to the point of not knowing what to do anymore..
I am getting worse sore throat and my voice is getting really raspy.. this scares me with my subglotic stenosis... I do have a cough that is in my chest, maybe that is where my sore throat is coming from.??., constant drainage down the back of my throat I just wish everything was black and white .. Yeah I know Medicine is not black and white- frustrating

Sangye
02-15-2011, 11:00 AM
Bren, even a great family doctor will not have the expertise you need. Nose bleeds with Wegs aren't happening because you have a Vaseline-deficiency. When can you get to a major center for proper care?

Bren
02-15-2011, 11:05 AM
Feb 28th in Mayo 2 weeks from today..

Sangye
02-15-2011, 01:43 PM
Okay, glad to hear that. I think you told us that already but it's hard to keep up!

drz
02-15-2011, 02:55 PM
Lab results can often lag behind our symptoms and how we feel. It took awhile for one ER to realize this when my HGB was dropping from bleeding in my lungs for me but after the third visit, they treated me for the symptoms and how I felt and didn't wait for the lab results to catch up with what was going on in my body because they knew what the lab results would be in a few days.

Bren
02-15-2011, 06:57 PM
drz.. what did your chest X-ray look like with the bleeding in your lungs what were some of your symptoms?

Sangye
02-16-2011, 02:39 AM
I also have had bleeding my lungs (twice now). My lab work looks great until I'm in the ICU basically.

Even when my lungs were completely filled with blood (all lobes, top to bottom), the chest x-ray only looked a bit of abnormal and resembled atypical pneumonia. The CT however, was horrific. At that time I had extreme difficulty breathing with profound fatigue and weakness. I could only walk about 5 ft without doubling over gasping for breath, as if I'd run a marathon. When my lungs hemorrhaged to a lesser extent in 2009, the chest x-ray looked fine but the CT was awful. I had difficulty breathing, increasing fatigue, night sweats, joint pain and a skin rash.

Jack
02-16-2011, 03:19 AM
I hope they have done the urine tests for kidney function too, they are very simple and should be routine. Renal failure has very few symptoms until it is too late. I speak from personal experience! :sad:
I'm worried about the standard of care you are receiving.

JanW
02-16-2011, 03:44 AM
I'm very concerned about your raspiness with subglottic stenosis (I have that also). SS requires a really close eye, because it can go from mild to severe in no time at all.

LisaMarie
02-16-2011, 05:27 AM
Bren
Prior to my crash and burn in SEptember that almost took my life ..my labs always looked basically ok....elevate liver enzymes were the worst...so don't beat yourself up...I am a nurse and no medicine is not blackand white...it is what it is ...everyone is wired differently and we all react differently...I will be at Mayo in Rochestor on Monday...praying they find something that will work for me...I hate having subglotic stenosis...as Jan has said it can close so fast ..but at times i feel like I am calling the doc all the time...but I would rather be wrong and check then right and ignore it....Just something to think about

drz
02-16-2011, 07:55 AM
drz.. what did your chest X-ray look like with the bleeding in your lungs what were some of your symptoms?

I don't know what the x-rays looked like. I just accepted the doctors word on whether they showed more bleeding or less bleeding. I think they could also generally hear it when they listen to my lungs. With bad bleeding i coughed up a cup or two of fresh blood which was pretty clear evidence. Milder bleeds might be only a teaspoon or two. Later on the main symptoms were increased fatigue and drop in hemoglobin. Sometimes this was quite rapid so they started giving transfusions as soon as we realized what was happening.

Sangye
02-16-2011, 09:24 AM
My lungs sounded perfectly clear and my pulse oxygen was 100% (even at high altitude). When my lungs were completely full of blood I only had a little dry cough. In 2009 when they bled again I coughed up about a teaspoon. Apparently my lungs are stealth hemorrhagers. :rolleyes1:

Bren
02-16-2011, 11:40 AM
Gosh you guys are all so awesome!
I felt terrible all day so wiped, the cold has loosen up in my lungs .. NO nose bleed today!!! :thumbup: but major crusting.. had a migraine, also. came home from work to try sleeping it off, but no luck...could someone please tell Mr Migraine he was not invited ;)
I m so looking forward to see Dr Speck on the 28th like Lisa Marie hope they have something to get me back on my feet

elephant
02-16-2011, 12:27 PM
Bren, I am so glad you are going to Dr Speck! If you get any worse please go to the ER. You will feel so relieved once you see him and you will be taken care of.

DEE
03-01-2011, 05:23 AM
Sangye you have not given us an update on how you are doing lately hope things are going ok wiyj you DEE x :smile1:

Sangye
03-01-2011, 07:28 AM
Thanks for asking, Dee. I'm doing okay. Not great, but not awful. I still have a fair amount of joint pain. The rtx should start working in another 2 weeks. It made a huge difference not having the infusions weekly. I sure hope the 2-infusion protocol works as well as the 4 did.

drz
03-01-2011, 09:36 AM
Gosh you guys are all so awesome!
I felt terrible all day so wiped, the cold has loosen up in my lungs .. NO nose bleed today!!! :thumbup: but major crusting.. had a migraine, also. came home from work to try sleeping it off, but no luck...could someone please tell Mr Migraine he was not invited ;)
I m so looking forward to see Dr Speck on the 28th like Lisa Marie hope they have something to get me back on my feet

Bren:

Progress report please. Hope it went well!

elephant
03-01-2011, 12:27 PM
Sangye, me too. Hoping all goes good in the RTX department.

me2
03-01-2011, 12:44 PM
Sangye, I was hoping to be synchronized with your rtx treatments so we could compare progress but mine got delayed to check out possible lung infection. Good news- its not lung infection so I should be starting rtx soon.
My doc is perhaps not as well versed as yours but he is sometimes surprisingly good and I asked him AGAIN about the two vs four weeks protocol.
I did both some time ago. He was nice enough to let me request what I wanted- the four week.
He said the protocol is somewhat arbitrary at this point. He said that "Your B cells are gone so there really is no need to keep doing treatment."

I'll just have to take his word for it and the fact that this seems to be the accepted protocol now. It makes me think a little of the Cytoxan protocol and how aggressive it was 30 some years ago. Years of experience have allowed for refinement.
I hope you feel good way sooner than I do Sangye so you can tell funny stories about all the stuff that you are doing with your new found health and energy..

Sangye
03-01-2011, 03:15 PM
Aww, that's really nice me2.

So you're doing the 4 infusion protocol? Dr Seo said some vasculitis centers started out doing 2 and some started with 4. They each kept doing what they knew. (JHU was a 4-infusion center, so that's why I had that protocol the last two times) But he said at this point they're all starting to see that both protocols give the same results. I guess that means the B cells are wiped out with only 2 infusions.

A good argument for doing the 2-infusion protocol is that it's 50% less exposure to the drug, therefore less chance to become allergic.

When is your starting date? I'm really glad to hear you don't have a lung infection!

me2
03-02-2011, 01:42 AM
I will be doing the 2 infusions. They only did the 4 infusions last time because I requested it. I requested it because I knew that it was intitially done as 4 and I wanted to do the more tried and true method rather than the new method. Well, 2 infusions at this time has become the new tried and true method it sounds like to me.
I am sitting by the phone waiting to get the call from my doc saying that my insurance has approved it. They approved it last time, I'm hoping there is no problem this time. The doc thought I should get my first infusion this week.
In the mean time I am actually not doing too bad considering the rough ride of the past few years but I am jacked up on 40 mg of prednisone and that is pretty dissapointing. I'm just taking it one day at a time and trying to be thankful for just being better than I was even if I have to take prednisone to do it.
Of course, given that Rituxan works slowly it will be a while before I can even think about reducing prednisone.
But thinking about that only requires a little bit of my time each day. The rest of the time I will spend thinking about other things that are of importance - most of them more fun (not all, like you would think. Don't forget tax time is approaching- THAT is like having an auto-finance disorder that is incurable.)

Sangye
03-02-2011, 03:16 AM
I hope you get to start it this week and that it starts working faster than you expect. :smile1:

Bren
03-06-2011, 12:15 PM
Well, I have put a big 1 1/2 week in !!!!... first of all I had to be rushed to Marshfield which is 2 hours away, for emergency surgery, to have my appendix out.. -(they did not burst but didn't have much time before they would of) they would not due the surgery at the hospital in my home town, due to my small airway.. my ENT Dr -(which is from Marshfield) was in the OR the whole time, to make sure everything went well, he was please they could get a #5 down my airway.
I went to Dr Speck, he said my labs where a little high but thought it was from surgery as I had that on 2/23 and saw him on 2/28 .. Good news from him and the ENT Dr. in Mayo. They both felt things were looking good. and took me off all meds at this point to see what will happen. -(I think its a trial) just to see what will come of it.. they feel my nose vessels have been damage from the wegners, my job will to keep working on my crusting/nose.. he would like me to do a EGD and a swallow study as I have tightness in my throat, and pains in my upper stomach area. When they did the CT for my appendix , a Nodule on my lung was discovered.. I read that in my notes.. no one has told me about it as of today?? not sure what is up with that but will be asking questions, at my post op apt.
over all it was a good visit at Mayo.. now we just do the waiting game.. to see what the next step in this journey will be. .
thanks for asking
Bren

Sangye
03-06-2011, 02:10 PM
Very happy to hear that you made it to Mayo, Bren. (And sorry about your appendix!) You're in good hands with Dr Specks. I hope you can stay off all the meds! :thumbsup:

pberggren1
03-06-2011, 03:52 PM
Bren, did Dr. Specks see the CT report about the nodule in your lung?

Bren
03-06-2011, 10:20 PM
I m thinking he will? The CT report stated it, I took the CT and all my notes down with me, so they can scan them into their system.. looking forward to his report. Dr Speck did give me the option to stay on Meth or come off it, so we decided to come off of the Meth for now -(as a trial) .. he told me that it does not take long to get into him if I need to see him on a ASAP bases

Sangye
03-07-2011, 01:31 AM
Bren, I'd give his office a call and make sure he sees the CT scan report. I can't imagine he'd take you off your meds if you still have a lung nodule.

drz
03-07-2011, 07:00 AM
Glad the surgery worked out well. Sounds like they worked together to give you the best care. Your follow up services should get all your questions answered. Good luck and best wishes for better health!:biggrin1: