Sangye's Status

[elephant]

He would culture clear boogers. The allergist I went to would just put a stick up my nose and he place my boogers on there and look under the microscope and he could tell if a infection was brewing. I don't know if all allergist do this, ( this would be less invasive). Compared to what the ENT would use a cotton swab and then have it sent out...it would take a week or so to get the results. I know if your having sinus drip for two weeks and your immunosuppressed....

[Lightwarrior]

Are you sure there is not fluid hanging around post neti-pot?? If it is not all draining you could be holding on to some fluid and growing bacteria?? I use a net pot, but I have a friend who doesn't because she tried it and didn't have much luck then two days later at work she bent over and a flood came and got her charting wet. If they swab your nares there doesn't have to be a lot to get a culture

[coffeelover]

Sounds like sinus infection! Ive had lots of those

[Sangye]

Lightwarrior, I had that happen once. It was about a hour after I had done it and I leaned over to cuddle one of my dogs. The entire amount came out like a faucet! Very funny.... :D

But nope, lately the water is flowing freely through both nostrils and nothing is left behind.

[Sangye]

Today I didn't have the huge headache, but a couple of times it threatened to start again. It begins with my eyeballs getting very painful and hard. It never spreads to my sinuses, though. I don't know what to think.

[jola57]

Could one of your meds cause it?

[Jack]

Not trying to alarm you or anything Sangye, but my first symptom of pain behind the eyes was not accompanied by anything I would have thought to be sinuses. No pain in the areas above or below the eye even when pressed.

[Sangye]

It took me a few days to realize it, but it's the actual eyeballs that start hurting and swelling first. The pain behind the eyes starts once the eyeballs are really sore and my whole head feels like it's going to explode.

I'm getting really tired of every day being like Groundhog Day, though. Every day I wake up on the edge of vertigo and with very poor balance. By the afternoon it eases up and I think "Yay, it's getting better." But then each morning it begins again the exact same way. I'm glad at least it eases up during the day so I can function.

I haven't decided if I'm going to email Dr Seo today. The 30 mg pred is helping get some of the excess fluid off, though. At least there's that!

[JanW]

I think you should email Dr. Seo, Sangye. Sounds like something new and different is going on.

[Col 23]

Hi Sangye, sorry that your still suffering. You may need some steriod eye drops.
Your description sounds like when I had sceritis initially and how it all started. Have you been to the eye specialist.
cheers Col 23

[jola57]

I get the eye pain often, it feels like someone is trying to pull my eyballs our of my skull. I went to my op doc and had them checked out. All was fine and it was deduced that it is the muscle behind the eye and is due to wegs. I get the steroid drops only when I have a prolonged pink eye. With the eye pain I do not get a headache, just a general head discomfort. Sangye, do go and see an eye specialist, it may be that it is same as mine but just in case that it may be more it is best to have it checked out behind the eyeball by a specialist.

[Col 23]

I agree with Jola, cant believe we are starting to nag you Sangye, you have trained us well.
cheers Col 23

[pberggren1]

Sangye, please get a hold of Seo as soon as possible. That sounds a little scary to me!

[Lightwarrior]

I haven't decided if I'm going to email Dr Seo today.

Sangye, I don't believe that you would let any of us get away with that. EMAIL or call him now please, don't wait. We need your nagging my friend.

[DEE]

Sangye email you must ,you would not let use get away with not doing it
we wont you to stay safe DEEx

[Sangye]

LOL-- I have trained you well, Grasshoppers. :D

Rest assured that I wasn't procrastinating or in denial. I emailed Dr Seo this morning and am waiting to hear back. It's only been 5 days since he put me on 30 mg pred and two of those days were the weekend.

As far as the eyes, the #1 thing that has to be ruled out is the elevated intracranial pressure. But unless there's a cancellation, I can't get in to see my neuro-opthalmologist for 3 weeks. He's the guy who can tell if the pressure is up.

Sinus-wise, the ENT is only in clinic on Fridays and is impossible to reach all week unless it's an emergency. I see the otologist on Wednesday for the second round of ear injections. I don't think he can check my sinuses, but I'll ask. He's in the same office as the ENT.

That's all I know! Now please stop worrying. :)

[elephant]

Ok, but will check on you tomorrow. :)

[JanW]

Indeed, I was worried when you didn't reply on my medrol pack thread, since you always having something to say about pred!

Ask the ear guy -- it does appear however, in my limited experience, that there are nose and throat guys, and then there are ear guys, all in the same office (sometimes with facial surgery guys).

[Lightwarrior]

LOL-- I have trained you well, Grasshoppers. :D

That's all I know! Now please stop worrying. :)

Your grasshoppers are just trying to help you keep that dog from waking up all the way LOL. It's the way we were trained, by a very caring Buddhist Nun.

[elephant]

Ditto to what Lightwarrior said. :)

[Sangye]

LOL- You guys have big hearts.... The Wegs dog that lives at my house is a tough one to read, I tell you. Is he sleeping? Is he stretching? He's a mysterious dog. :D

I haven't heard back from Dr Seo yet. His receptionist is busier than normal since she's covering for another office this week in addition to the many docs she already works for. As of 4:00 yesterday she hadn't forwarded it on to him.

On another note, one of the diuretics I'm on (lasix) depletes potassium. I can stay on top of it by drinking 6 oz OJ each day, sometimes more. The problem is that citrus really aggravates the Fire (Pitta) element if you have it on a daily basis. It also aggravates the Earth/Water (Kapha) element, which is famous for causing sinus problems and fluid retention. Kapha and Pitta are my 2 main constitution types, so it's a double whammy to drink OJ every day. There aren't too many fruit juices that are high in potassium and also low-Pitta and Kapha. Yesterday I got some prune juice to try it out. I had a glass last night and was up half the night with diarrhea. Okay, NOT gonna work. :D

[elephant]

I had a feeling that was going to happen....it get's me all the time.

[Sangye]

I heard back from Dr Seo. My internet has been down for most of the day so I finally called and spoke to his receptionist.

He says the oral steroids don't substitute for the ear injections and that I should definitely continue with them, as the window of opportunity is narrow.

He wants me to get a chest CT tomorrow while I'm at JHU-- been having some pain in my lungs the past few days. He also asked her to try and get me in to the neuro-opthalmologist sooner than 3 weeks. I told her about what happened with that office last week, so she's armed with info.

She said Dr Seo is "trying to be on vacation" this week. Poor guy. I don't think any of the Wegs docs ever really get to do that. Even another Wegs doc in their own office can't tell what to do with us since so much is dependent on history. She didn't know this. I told her we're all like rare zoo animals and that what we all really want is to just be giraffes again. Everyone knows how to take care of giraffes. :D

[Col 23]

Hi Sangye
Glad to hear that you have been in touch with Dr Seo and that your having a CT scan. Makes sense re- the steriods. Yes wouldnt it be wonderful if this WG was just a Giraffe.
Hope all goes well at JHU.
cheers Col 23

[DEE]

Sangye so glad things are been sorted for you :) kept it quiet about the pains in your lungs naughty !! you know we worry about you
you help us all the time
know what you mean about wg consults been on holday mines away for one more week and after my problems last few days they all keep saying we willl do this ! until Dr Abuzukouk comes back:) but in a way i ok with that because i have confidence that he is trying to do his best for me ,its not his fault i move from disater to another
please take care of you good luck for tomorrow DEEx

[JanW]

You did keep it quiet about the pains in the lungs, Sangye! You are being like an enigma wrapped in mystery and we won't stand for it, missy!

If you can talk about your diarrhea, you can talk about your lungs! ;-).

[Sangye]

LOL-- I knew it would worry you if I told you about the lung pains. And I didn't tell you about a couple other symptoms either....

I'm really working on trying to keep the anxiety level in me and around me down. I've had a habit of getting overly whipped up about things and I'm determined to change that. If I'd mentioned the lung pains you guys would have been all over me about getting through to Dr Seo faster. There was no way to do that, so I figured I'd just keep you from worrying. And see? It WORKED! :D

[JanW]

Okay, you got me. Good point.

You strike me as the least anxious/most accepting patient I know, so I guess this alters my worldview a bit.

I completely understand your reasoning, though.

[elephant]

So Sangye what were the other symptoms?? HMMM??

[Sangye]

Okay, you got me. Good point.

You strike me as the least anxious/most accepting patient I know, so I guess this alters my worldview a bit.

I completely understand your reasoning, though.
Even in person I don't appear anxious. I'm the calm one in an emergency. A couple weeks ago at our temple we got a tornado warning. We don't have a basement and the building is pretty old. Not exactly good shelter for a tornado. Most everyone was freaking out. It didn't even occur to me to panic, it was like "Okay, so let's make a plan."

The anxiety is an inner thing and has taken me a lot of therapy just to recognize that it's going on. It's more a chronic state of hypervigilance and hyper-attentiveness that doesn't look anything like the stereotypical nailbiter. It helped me as a doctor. I paid attention to every little symptom my patients had!

[Sangye]

So Sangye what were the other symptoms?? HMMM??
I'm feeling a bit more out of breath than usual. The other day I had to rest 4 times just to vacuum my tiny basement. It's not severe or even moderate SOB, but it's more than my usual. I'm also coughing more when I laugh or talk--dry cough but it's down in my chest. This is often what the Wegs dog looks like when it wakes up grouchy in my lungs.

Okay, that's it. No wait. I have a papercut on one finger also. And a little itchy spot on my head where my cockatiel poked his toenail. LOL :D

[DEE]

i hope you are taking care of that paper cut call the specialist !!!!!!!!!!!!!! honestly though Sangye take care of you DEEx:)

[elephant]

So Sangye, it also could be infection too? I had those symptom's a year ago and it was mild bronchitis. It went away after a month on Bactrim. But it also could be a sign of WG trying to wake up. So glad you are getting it checked out. We are here for you. Of course we will worry about you, and we want to know whats going on. We are all in this together! Thanks for sharing.

[Sangye]

I know it's not infection. We've chalked it up to that before! I don't have any other signs of infection--chills, sweats, extreme fatigue, fever. I can always tell if I'm fighting a bug because I'm completely depleted. I don't feel that way.

[JanW]

Thanks for sharing, Sangye, but I also wanted to say that I hope that you never feel pressured by us to share what you don't want to. We all look up to you on this thread, and would be devastated (speaking for myself and I am sure many others) if we thought you were getting worse. At the same time, I completely respect what you said early about trying to keep the anxiety level down and I would hate to think that you feel as though you have to 'set an example' by being more forthright than you might be comfortable being. I guess that all I am saying is to think of yourself first. I know that you feel a huge responsibility to this forum (as do I and many of us I'm sure) but that should never be a burden. Be well, my friend.

[Lightwarrior]

. There was no way to do that, so I figured I'd just keep you from worrying. And see? It WORKED! :D

Is that what you think????? I learned a long time ago to "listen to the sound between the drum beats" and I know you have many sounds between those beats. I respect your silence, but I still worry.

[Sean48]

Hope you feel better and get some rest.

[Sangye]

JanW and Lightwarrior-- no worries, I only share what I'm comfortable sharing, which is most everything. :D It really is just about not fanning the flames of anxiety in my mind. So many of my symptoms always come and go, and I'm learning how to allow that ebb and flow instead of jumping on each one. I keep a watchful eye and take action when needed. So you guys really never have to worry about me not getting myself to the docs or going into denial. I love that I can share or express anything here and you all will support me.

So, quick rundown of today: Had a chest CT (no results yet), got the 2nd steroid ear injection and started vestibular PT. That doesn't sound like much but it required a 2 hr drive to Baltimore plus hopping 5 different JHU shuttles on 2 different campuses, walking a ton in the heat and driving back home. I'm totally fried. It was much more than I could do. I was crying by 2:30, totally spent. I was gone for over 10 hours. I'm going to try and get someone to drive me next week.

The ear injection went well. I think my hearing is a little better because I could hear the tuning fork almost equally in both ears. Before the final injection next week I do another hearing test to find out for sure. The otologist said he could look in my sinuses next week if they're still an issue. That was fine with me-- I just couldn't take more today! He looked in my nose and said it looked okay.

The doctor who does the vestibular PT gave me the best news ever. He said the PT will take 6-7 weeks and will correct at least 90% of the imbalance and wooziness I have. WOW!! I had no idea that was possible. I was like a limp noodle and sprang to life for a couple minutes when he said that. This imbalance and semi-vertigo thing has greatly decreased the limited function I had. But boy, the PT is HARD. Basically my head is telling me not to move it much or everything goes loopy. But the only way to undo that is to force the head and eyes to move a lot! There are exercises I have to do 3x a day-- things like look at a spot on the wall while shaking my head side to side for a full minute. Just doing it for a couple seconds was rough. I'm happy to do it though, since it's the only way out of this horrible state. I'm so fortunate that I have access to this kind of care. If I didn't have these amazing docs at JHU, I'd be completely deaf in one ear and stagger around the rest of my days.

[elephant]

You are blessed Sangye and thank goodness you have great health care. That was a long day, but you got through it. So glad to hear your hearing has improved! Yipee!

[JanW]

that all sounds like very positive news, Sangye!

[DEE]

GOOD NEWS SANGYE :) DEEx

[Sangye]

Of the many times I got up in the night (nothing special, just diuretics pulling off all the swelling from yesterday), one time I hardly had any swirliness at all. I was like "What? I can walk in a straight line without holding onto the walls?" It was incredible, especially since the middle of the night and mornings are the worst. The next potty trip was back to swirlies again, but it gave me hope that things are going in a good direction.

Otherwise, I am completely toast today. Gonna go do my PT exercises. The thought is very unpleasant since I just got up and things are swirly. But it's gotta be done in the morning, midday and evening. No slackers at this house. The Wegs dog can sniff those out.

[Col 23]

Cant believe you drive to docs and endured all that and drove back again. Im glad that if your able to get someone to drive you that you wont have to go through that again. I dont
think you can talk slackers at your home...give yourself a big pat on the back and a gold star.
cheer Col 23

[elephant]

Sangye, how is your hearing today? Is your headache gone? Just checking....123...checking...

[Sangye]

Col, that's so funny. That's how I made it through the day yesterday. I literally was staggering around, constantly on the verge of collapsing from heat exhaustion. As I walked from one place to the next, I'd give myself mental pep talks and remind myself how well I was doing, that I make it the next few feet, etc....

Elephant, my hearing is on/ off today, but he said that would be normal. I do think it's better than before the first injection, though. I haven't had another headache for several days--glad for that!

[elephant]

Sangye thank goodness your hearing is better and no headaches! Phew!
Sangye you crack me up! You really need to be a writer for sitcoms/ movies. Comedy of course...

[Lightwarrior]

Sangye thank goodness your hearing is better and no headaches! Phew!
Sangye you crack me up! You really need to be a writer for sitcoms/ movies. Comedy of course...

You could write the entire plot around a big mean ugly dog(wegs) and the crazy funny things we do to almost wake him up and then how we keystone cop it to get him to go back to sleep.

[elephant]

Thumbs up on that one LIghtwarrior. Who want's to be the sleeping dog??:)

[Sangye]

Oh, that's a GREAT idea! Wouldn't that be hilarious. Hmmm, thinking of a new thread....

[Sangye]

Wow, this is kinda hard to believe, but it seems like the vestibular PT exercises are already working! I just did the second set for today (3 total) and I'm feeling less wobbly and can turn my head without everything going as zonky. COOL!!!

[JanW]

Wow, Sangye, isn't it great when things actually work. It's like when I first started taking the medrol and I'm like, damn, I'm not limping. It was a freaking miracle (one I wished happened before i was out in Long Beach and walking around at the conference).

[Sangye]

Yeah, it's pretty shocking actually! I'm not used to things working the way they're supposed to with my Wegs treatment! Like I was on 1,000 mg solumedrol and got tons of clots-- shouldn't happen with inflammation controlled like that. I was on ctx and got sicker-- shouldn't happen. The whole past 4 years is one long string of "shouldn't happens." LOL

[elephant]

JanW, so glad you are feeling better. So are they going to increase your methotrexate now>
Sangye, the reason why your "shouldn't happens" happened is that your WG dog was wide awake the whole time eating processed food, dark chocolate, coffee, red meat, cheese and triple chocolate muffins!

[Sangye]

Sangye, the reason why your "shouldn't happens" happened is that your WG dog was wide awake the whole time eating processed food, dark chocolate, coffee, red meat, cheese and triple chocolate muffins!
Only some of that time! In the beginning I was eating my usual very healthy diet. But then yeah, maybe that old dog was just hungry for what was on my plate. :D

[JanW]

Yes, elephant, by 2.5 mg, so one tablet more. We go up from there if necessary. I am still on the lowest end of the scale -- 15 mg.

[elephant]

Sangye, I was just teasing you. I know you ate pretty good even during those four rough years!
Janw, did they talk about diet effecting WG? Exercise?

[JanW]

They were asked that question a lot and also asked about nutritional supplements. I'm sure Sangye would have a lot to say about the fact that it's not surprise that the docs put no stock whatsoever in any nutritional supplements (other than supplementation we might have to do to stave off affects of our other meds -- eg calcium). The refrain was to eat a good balanced diet, the same as you should if you didn't have vasculitis and to exercise within your limitations because it's good for your health.

None of this has been proven to have an impact on the big question: what makes people relapse or getting serious disease, when others do not.

[Sangye]

Elephant, remember a few months ago I fessed up to having fallen into terrible eating behaviors? It was due to a combo of pred, GI problems from the drugs I was on, my constitutions changing so much that my usual foods were harming me, not being able to stand to cook, not having a stove for a year, and financial issues. It was a rough time!

[Sangye]

They were asked that question a lot and also asked about nutritional supplements. I'm sure Sangye would have a lot to say about the fact that it's not surprise that the docs put no stock whatsoever in any nutritional supplements (other than supplementation we might have to do to stave off affects of our other meds -- eg calcium). The refrain was to eat a good balanced diet, the same as you should if you didn't have vasculitis and to exercise within your limitations because it's good for your health.

None of this has been proven to have an impact on the big question: what makes people relapse or getting serious disease, when others do not.
So frustrating. The studies are out there demonstrating that fish oil is anti-inflammatory, that vitamin D reduces symptoms (esp pain) in autoimmune diseases, that an anti-inflammatory diet reduces global inflammatory markers, etc..... Are they specific for Wegs? No. But it's not rocket science. If a supplement or diet reduces inflammation, it's a given that it's going to benefit a Weggie.

On the other hand, I think it would upset me even more if our Wegs docs were trying to give more detailed nutrition advice since they don't have the training. LOL-- there's just no pleasing this girl, is there? :D

[LisaMarie]

ok my loves....eat drink and be merry...WG is a breast of many shapes and colors...I have gain 15 pounds since I started my lovely 60 mg of pred daily...and asside eating a few milk dud s along the way i have stayed tru to my better health diet....since my lovely trach is being a bit contrantry i can not exercise...walking a bit causes stridor...so i have decided that I can deal with anything for a while...and at times I am aloud to yell and scream and be mad ...and act a little crazy ...as my husbands says..but if coffee and chocolate in moderation makes me feel better...then i gonna have it ...you know when we were little and our mothers said :don't touch that : then all we wanted to do was touch it...same idea..i guess ...i take calcuim with vit d and a prenatal vitamin every day....I eat mung beans to help give me energy with spinach or bitter root leaf.....i drink green tea to help get rid of that lovey sputum ....and try to use all natural supplements when I can...unfornately with this disease and the drugs we take it is not always a good thing to do the healthy supplements...I guess we all need to watch ourselves and listen to eat other...what works for one...may help another......papaya enzyme is great for digestion issues with pred,,,it helps digest protiens so your stomach acid does not work soo hard...hence decreasing the chances of ulcers....just my take on things...Sangye take care and if you need any spanish or filopino or italian remedies I can send then your way...take care and ...as I say ....EAT DESSERT FIRST!!! lol

[elephant]

LisaMarie, yes I have eaten dessert first. Highly recommend it!
Sangye, yes I recall that you were eating other things because of your health. You had to do what you had to do, under your circumstances! Wow, and you survived that!
JanW, I even asked my WG specialist that same question, and got the same answer you did. :)

[Sangye]

I'm at the point where the reality of all my past food choices--some under my control, some not-- has sunken in. I have 60lbs that I didn't begin with and no way to get it off. So for me, I wish I could turn back the clock to those early days when I just ate whatever I wanted to eat, when I was so mad at having Wegs and at having my life taken away from me that I thought "I don't care. I deserve this cupcake and I'm going to have it. It's the only joy I have today." I wish I could have known what it looks like down the road when the weight won't come off and all the complications that arise from that.

[Sangye]

On a happier note, wow-- I can't believe how much better the vertigo-swirliness is doing today!! Those exercises make such a difference. How can they work so fast?

Several of you mentioned your own or family members' ongoing issues with vertigo or unsteadiness since having vertigo. PLEASE look into getting Vestibular physical therapy. It's only a 6-7 week program. You learn a few home exercises and go back the next week for more. You might have to do some research to find it. Check with major hospital PT programs near you.

[LisaMarie]

I'm at the point where the reality of all my past food choices--some under my control, some not-- has sunken in. I have 60lbs that I didn't begin with and no way to get it off. So for me, I wish I could turn back the clock to those early days when I just ate whatever I wanted to eat, when I was so mad at having Wegs and at having my life taken away from me that I thought "I don't care. I deserve this cupcake and I'm going to have it. It's the only joy I have today." I wish I could have known what it looks like down the road when the weight won't come off and all the complications that arise from that.

we all feel that way at times ...food can be comforting.:.we can not change the past.just learn from it and go on.....you'll be back where u were when the breast finally gets exhausted so hang in there.....enjoy the chunky monkey you r today..we are all beautiful chunky monkeys

[LisaMarie]

excuse my typo benadryl is kicking in

[Sangye]

Unfortunately it's not just about appearance. Having all this extra weight keeps me from stretching and makes it harder to stand or walk. I'm still limber enough that I could touch my toes to stretch, but the size of my stomach won't allow it. So I can't even get a decent muscle stretch. It keeps me from doing yoga, which I did daily for over 10 years. Many other complications from it, too. A major one is that it's a contributing factor to the elevated intracranial pressure.

[elephant]

Sangye it will come off eventually, it is going to take time. It is not easy losing weight, even the healthy people complain to me that they can't lose weight.

[Col 23]

:unsure:Hi Sangye, remember hydro therapy, Ive started talking about it again and am trying to get my head around making some sort of committment. Its just so hard to commit to anything right now. I went to visit my daughter for a couple of hours,( she is only about 15-20 mins from my home) and came home and slept for 4 hours. I had to cancel another appointment that day. Sooooo frustrating. I may be up to it as the weather warms up. Ive also thought about just concentrating on going to Hydro therapy and if thats all I do that day so be it. But its all thoughts at the moment. Brain active, body not willing.
You have been through a lot and the medication doesnt help. Hang in there.
cheers Col 23
PS had to try the smiley

[Sangye]

Col, I hope you do the hydrotherapy. You'll just love it. I haven't been able to go for many months now but when I did it was all I could do that day. It felt great, though-- not like losing a day just because of Wegs, you know?

[Sangye]

Well dang, feeling VERY vertigo swirly again today. It started last night right after I finished my vestibular PT exercises. I laid down to talk on the phone for a couple minutes and it fired up.

The doc had warned me that sometimes the exercises can make it worse. He had said if it happens to back off them a bit and call if it's not okay within a few days. I just talked to him yesterday and was telling him how amazing I felt.

It's awful feeling like this. I'm staggering around and even just sitting in a chair things are all over the place. I haven't been this bad for many weeks now. :sad:

[JanW]

Sangye: I hope it gets better for you today. Try to take it easy.

[Col 23]

Oh no. Does it make you feel nauseous as well,how long does it last?
Col 23

[Sangye]

I'm not nauseous, just totally wobbly and everything's all swirly.

[elephant]

Sangye so sorry you are feeling this way. Don't walk outside the neighbors might think your a drunken sailor! :)

[Sangye]

Aargh... It's still going on. I haven't been out of the house (basement) since Wednesday, trying to recover from that long day at JHU. Today I have to get out of here and do a few errands. I'm really depressed right now about how bad this is. Just feeling like I can't make any progress without getting totally thrown back to the beginning. The last few months I've been getting in a deeper hole--less and less function.

[Jack]

Oh Sangye, how I wish I could help. God knows, I've been there often enough, but I can't think of any good advice other than to hang on and wait for things to improve. They always do given time even though the respite may not be permanent, but any progress feels so good and the setbacks hit hard. In the meantime, try to take it easy if you can. I'm not so sure that working hard at some of these things makes them better, sometimes it just takes time.

Hope your day improves and that tomorrow will be better.

Jack.

[Sangye]

Thanks, Jack. I know you totally understand how it feels! I just want to sit in a corner and cry today.

[elephant]

Oh Sangye, I was trying to be funny and make you laugh...sometimes it's good to cry and get it out. I wish I could do something for you too.

[pberggren1]

Sangye, can you describe the vestibular PT for us?

[Sangye]

It's okay, Elephant. I usually can laugh about stuff but today I'm just having a hard time finding any humor in it. It's such a horrible feeling to be spinning non-stop.

Phil, I'll give an example of an exercise but please, if anyone has vertigo or unsteadiness DO NOT try this without guidance. It might not be okay for you to do it:

Look at an X on the wall at arm's length and shake your head back and forth for 1.5 mins while keeping the X in focus. Then do it again shaking your head up and down.

It's very uncomfortable!

[Sean48]

Sangya. I cant imagine having vertigo like that. I can remember my teen and party years after drinking too much and being dizzy. I can't IMAGINE what your going thru is like....I hope you feel better soon.

[Sean48]

I wish there was someithing to fix you Sangye, but we can't ..... Sometimes crying gets it out and you may feel better after you get it all out..... I hope so.

[pberggren1]

Wow Sangye, that sounds extreme!

[DEE]

:sad:sorry to hear things not to good hope things better today DEE X

[Sangye]

Well THANK GOODNESS sometime during the night it started to ease up. I'm not as good as I was on Friday, but I'm not too far off from it. The PT doc had said the exercises could exacerbate the vertigo temporarily-- boy howdy was that right.

The problem is there's no way to tell if it's just due to the exercises kicking it up or if it's a return of the vertigo. I'm going with the "temporary exacerbation" theory.

The interesting thing was that along with the vertigo yesterday I had a total sense of my mind dulling out-- I was depressed, felt distant, hard to think, etc.... It was exactly how I feel when I have a migraine-- the only time I ever lose my sense of humor. It's not just due to the pain, either. I'll still laugh through terrible pain. The first sign that a migraine is clearing up is that I start to smile. Even before the pain goes away. This morning I woke up happy again and knew the vertigo would be decreased. I'm going to ask the docs if there's a correlation. There is such thing as a vestibular migraine, but I don't know anything about it.

[elephant]

Glad your a little better. Hang in there. :)

[LisaMarie]

hope u feel better soon....we need u healthy you keep us in line....still feel like a Mack truck ..but surviving...

[elephant]

LisaMarie, hope you feel better soon. Rest today if you can. :)

[Lightwarrior]

looking at the JHU site on vestibular migraines your symptoms fit Vestibular Migraine (http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/vestibular_migraine.html) I am glad that you have a Wegs specialist, I hope this is sorted out quickly. I worry about your mind "dulling out". I am glad that you can smile today my friend.

[Sangye]

I just heard back from Dr Seo-- emailed him this morning with an update. He thinks the majority of my symptoms are due to the rapid steroid taper with the vertigo treatment and are worse because I'm so sensitive to pred. I'm going to lower the pred to 27.5mg starting tomorrow. I don't know how he came up with that number (currently at 30mg) but I trust his knowledge.

I've been having really bad pain in my right kidney area for several weeks. Now before you all have a fit, know that I was doing labs during that time and my kidney function has been perfectly fine as usual. It's just gotten much worse and is not going away. I'm going to have a kidney CT on Wednesday to see what's going on. It does seem related to lasix. I've always had some pain in that kidney within an hour of taking lasix. As we've increased the dose the past few months the pain has increased, too.

None of my docs have any idea about kidney pain due to lasix. It's not listed as a side effect and I don't see a mechanism for it. Have any of you heard of such a thing?

[Sangye]

Also, Dr Seo spoke to my neuro-opthalmologist. Apparently when he said I should go to an ER if I'm concerned about my vision, he meant Wilmer ER-- JHU's eye institute ER. I didn't even know there was such a thing. He just said "Go to an ER." Grrrr. He's really gonna get an earful when I see him on the 27th.

[elephant]

Sangye never heard of Lasix causing kidney pain. I gave that drug all the time to my patients...even IV push. You already know this...just watch the potassium and signs of dehydration. I will google it and see if I see anything that pops out.

[Sangye]

I had my first kidney stone in that kidney in 2008. I got a kidney infection within the week but treated it quickly with Bactrim. Ever since then that kidney is always a little pinchy feeling and taking lasix makes it hurt for about an hour. The more we've increased the lasix dose lately, the more it hurts. The past few weeks it's become a large area over the back ribs that hurts like crazy all the time. (It's not gallbladder-- no symptoms of that.) I'm on 30mg pred and can't believe how much this thing hurts.

[elephant]

Could it be the Lung? You can have pneumonia and not show other symptoms.

[Lightwarrior]

With all my kidney stones I do notice that my kidneys hurt for the rest of the day if I take lasix.

[Sangye]

Elephant, we just did a chest CT last week-- showed resolution of ground glass opacities (hemorrhaging) since last October when I started rtx.

Lightwarrior, do you see a neph? If so, can you ask them about this?

[elephant]

Lasix can increase the creatinine if you have alot of fluid and venous insuffiency....I googled it. :)

[Sangye]

Interesting... But my creatinine is always fine.

[Lightwarrior]

Interesting... But my creatinine is always fine.

Mine too, i see the neph i work with. I will ask next time I see him

[MCC]

Oh Sangye, so sorry to hear you are still not doing well!
How are you doing today?

[Sangye]

The vertigo is better, thank goodness for that. I do think the high dose pred is really hitting me, though. I bet it's shutting off my adrenals. I'm really pale, and have no energy or strength whatsoever. My bloodwork has been fine (eg no anemia) and my chest CT was good. So I think Dr Seo is probably right that most of what's going on with me is due to the pred disruptions in the past 1.5 months. I hope that's all it is-- easier to fix. I do more labs this Wednesday.

[Jack]

Thank goodness you feel a bit better today, you just need to sort out the Pred thing now. ;) One major problem at a time is more than enough.

[Sangye]

LOL-- That was yesterday. Today I'm swirling again. Do I scream or cry?

[Jack]

Make up your mind! ;)

You are supposed to go through one problem and put it behind you so that you can get on with the next. You are not allowed to just have the same one over again. It shows lack of imagination.





(Sorry to hear it Sangye - hang in there. )

[Sangye]

LOL-- that made me laugh. I think pred has destroyed my creativity!

[DEE]

SORRT TO HEAR THAT THINGS NOT SO GOOD SANGYE AS YOU WOULD KEEP YOUR CHIN UP DEEx

[elephant]

Oh Sangye, how much more of this? So sorry you have feel so out of it.

[Sangye]

Man, I am just not doing good at all. Really wiped out. I just vacuumed my tiny room and I'm gasping for breath. My muscles feel crampy all over. I'm going to eat a big pile of potatoes in a few minutes and load up on potassium. I have to get a few errands done today and still have strength left over for a huge day at JHU tomorrow. I don't even know how I'm going to take a shower today....One of the monks is going to drive me tomorrow and I told him he's gonna have to wheel me everywhere. Even so, I can't even imagine doing anything since just walking around a little basement is too much.

The one thing that reassures me that this is really due to the pred is that my arches have gone completely flat in the past few days. That correlates with very loose ligaments-- adrenals. When I first went on the 60mg pred in July, my adrenals perked up and my arches did, too.

I bet you're all looking at your arches right now, aren't you?

[marta]

Sorry to hear all of this Sangye. Yes I am looking at my arches. The potatoes... have you ever tried chia seeds? They are high in potassium and all sorts of other good stuff. The crazy endurance runners use them to keep everything balanced as well as high protein for extra energy. The Mayans use to use them and live only off them and water when they went for their week/month long journeys. They're quite something - the seeds, not the Mayans (although they're pretty cool too.) The only downside is they get stuck in your teeth and you have to do a mirror check before leaving the house (I say as I pull some out from between my teeth from breakfast.) Hope it helps, you never know where that one little magical thing that makes a day better comes from.

[DEE]

would we ? yes :biggrin1: arches what does she mean ? i thought it was me been paranoid about mine hurting so much and no one seems bothered about it
thanks Sangye its another symptom thats not just in my mind :predrage:
DEEx

[Sangye]

Thanks Marta. I don't know anything about chia seeds but will look into it. I always wanted to be a crazy endurance runner...or a Mayan. Halloween was always a struggle.

[marta]

Thanks Marta. I don't know anything about chia seeds but will look into it. I always wanted to be a crazy endurance runner...or a Mayan. Halloween was always a struggle.
It's good to have a goal. Let's shoot for at least one of those. Your choice. ;)
As for Halloween, we can all dress up as 'normal people', with their skinny faces and strong bones, and working organs and stuff.

[Sangye]

You can get a good idea about "healthy" peoples' adrenals by looking at their arches too. Pronating feet are a classic sign.

I just ate 2 big potatoes. Now I can barely breathe but it's because my stomach is all potatoed.

[Lightwarrior]

Man, I am just not doing good at all. Really wiped out. I just vacuumed my tiny room and I'm gasping for breath. My muscles feel crampy all over. I'm going to eat a big pile of potatoes in a few minutes and load up on potassium. I have to get a few errands done today and still have strength left over for a huge day at JHU tomorrow. I don't even know how I'm going to take a shower today....One of the monks is going to drive me tomorrow and I told him he's gonna have to wheel me everywhere. Even so, I can't even imagine doing anything since just walking around a little basement is too much.

Okay, you have vaccumed, my gut feeling is that you shouldn't take a shower unless you have someone in your little basement to help you if you need it. Dried apricots are also high in potassium. :unsure:I wish you had someone spending the night with you tonight so you wouldn't be alone. I can't wait until you get to JHU tomorrow, please conserve and take extra care until then. Go to that safe place inside and imagine us sheltering and comforting you. I'm worried.

[Sangye]

It's good to have a goal. Let's shoot for at least one of those. Your choice. ;)
As for Halloween, we can all dress up as 'normal people', with their skinny faces and strong bones, and working organs and stuff.

LOL-- When you dress like I do, you get used to people thinking you're dressed up for Halloween. At JHU a few weeks ago, a couple was standing several feet away from me. The woman pointed to me and asked him in a really loud voice, "What the heck is THAT?" LOL-- like I wasn't even a person! I wasn't close enough to answer her myself but it made me laugh the rest of the day.

[Sangye]

Okay, you have vaccumed, my gut feeling is that you shouldn't take a shower unless you have someone in your little basement to help you if you need it. Dried apricots are also high in potassium. :unsure:I wish you had someone spending the night with you tonight so you wouldn't be alone. I can't wait until you get to JHU tomorrow, please conserve and take extra care until then. Go to that safe place inside and imagine us sheltering and comforting you. I'm worried.
Thanks, Lightwarrior. I have a friend who has agreed to be my on call person during the night. It saves me from having to dial a lot of numbers just to find someone who answers or who can get here.

[Lightwarrior]

Thanks, Lightwarrior. I have a friend who has agreed to be my on call person during the night. It saves me from having to dial a lot of numbers just to find someone who answers or who can get here.

Put your friends number on speed dial so you don't have to remember it, paint that number with polish so you can feel it in the middle of the night if you get into trouble and feel confused. Keep your phone within reach. (Now who's nagging??)

[DEE]

:hug3:Sangye p[ease look after youself . hope they can help tommorrow:hug1:

DEEx

[pberggren1]

You need one very big hug Sangye!

[Sangye]

Okay, did my errands. They were non-negotiable. If there was any way to avoid them I definitely would have. One of the things I had to do was replace my phone! It's been dying the past few days and I didn't think this would be a good night to be without one.

I don't know what's going on. I've taken plenty of potassium, magnesium and electrolytes. I'm still getting muscle cramps all over--the pred ones, in the tendons. I'm extremely weak. My abdomen is hugely swollen. The whole time I was out I constantly felt like I was going to collapse. I'm going to email Dr Seo's office so he'll see it first thing in the morning. I feel better knowing he's in clinic tomorrow and I'll be there for labs.

We're supposed to get huge rains here all day tomorrow. The friend driving me to JHU wanted to cancel the trip. I said NO WAY. Not only do I have to get to the appts (hearing test, 3rd ear injection, CT kidney, labs and more) but I feel much safer being at JHU in this condition than at home.

[elephant]

Sangye hope you have a better day today. Take care.

[Hammy8241]

Thinking of you and holding your hand....if thats allowed.

[Lightwarrior]

I don't know what's going on. I've taken plenty of potassium, magnesium and electrolytes. I'm still getting muscle cramps all over--the pred ones, in the tendons. I'm extremely weak. My abdomen is hugely swollen. The whole time I was out I constantly felt like I was going to collapse. I'm going to email Dr Seo's office so he'll see it first thing in the morning. I feel better knowing he's in clinic tomorrow and I'll be there for labs.

We're supposed to get huge rains here all day tomorrow. The friend driving me to JHU wanted to cancel the trip. I said NO WAY. Not only do I have to get to the appts (hearing test, 3rd ear injection, CT kidney, labs and more) but I feel much safer being at JHU in this condition than at home.

I wonder what your lactic acid is??? Liver enzymes?? Have a safe journey, I'll be that little light bouncing off the wall to bring you strength (lol) :hug3:

[Brooke]

Hi Sangye - I haven't been on in a while, but I see y ou are not feeling the best. I hope you get better soon!

[Sangye]

Okay, I'm finally home again after 13.5 hours. I sent Dr Seo an email this morning before leaving, and they called me on the way to say I should come in first thing. What a relief!

Dr Seo thinks the steroids are making my body go nuts. I was doing great tapering off pred until June, when I tapered too fast below 1mg and almost shut off my adrenals for 3 weeks. I was just correcting it when the hearing loss/ vertigo thing hit and I had to go on 40-60 mg for 2 weeks with a 1-week taper back down to 3mg. That was disastrous. My adrenals didn't come back on. So last week I went back on 30mg which has been like hitting them with a board. Again.

He thought I'd have a hard time going off the 40-60mg pred so fast, but he didn't want to interfere with the ENT's treatment. In all honesty, I would have fought that suggestion tooth and nail. Remember at the end of June when I had a fit because he said I had to stay on 3mg pred for another 6 months? :blushing: Well, now we know that if I ever have to do high doses again I have to taper off slowly.

He's done tons of tests I didn't even know about in the past few weeks. I don't remember everything he rattled off. But I really got that he's left no stone unturned.

Here's what we discussed:
- Ritux is still at a therapeutic level and seems to be containing the Wegs very nicely.
- Chest CT from last week looked great.
- Last potassium was on the low side and since it interacts with magnesium, they may both be too low. That would cause muscle cramps, muscle weakness and overall weakness. Magnesium deficiency can cause shortness of breath, too.
- Neither of us thinks I could have a pulmonary embolism because I'm on blood thinners and my INR has been on the high (or very high) end the last couple weeks.
- EKG today was normal
- My entire abdomen was still hugely distended this morning-- even the sides. Today's kidney CT will give a general look at the abdomen. If it persists we can do a regular CT of the abdomen.
- If the shortness of breath persists we can do pulmonary function tests.
- No signs of cancer, infection, liver disease or many other big problems

[Sangye]

I also saw the Otologist again. My hearing improved a bit-- just enough that he didn't feel it necessary to do the third steroid injection. (He was willing to if I wanted, though. I really like that they emphasize evidence-based medicine at JHU.)

He thinks I might have had a vestibular migraine on Friday, especially since I have a history of migraines. I already know my migraine triggers but he gave me a list of common ones and suggested I avoid them for 2 months. I don't eat most of the foods on the list anyway.

[Lightwarrior]

Okay, so how is he going to handle the pred dosing and tapering?? I have to tell you, I have been anxious all day waiting to hear from you. I half expected to you to be admitted. I'm glad you are home, still keep your phone close. I'm curious as to the CT of the abdomen. How are you correcting potassium and mag? Sooooooooooooo glad you are feeling well enough to post. Sleep well tonight and know we all have you in our thoughts.

[Sangye]

I wondered if I was going to be admitted, too! Thanks for keeping me in your thoughts all day.

He lowered the pred to 27.5mg yesterday and I'm supposed to stay at that for a couple weeks. I couldn't bear to hear the details of how slowly we're going to go. We did more labs for potassium and mag today.

I'm feeling like I got run over but I knew you guys would be worried. I also knew I'd forget half of it if I waited until tomorrow. :biggrin1:

[Sangye]

Thinking of you and holding your hand....if thats allowed.
Aww, so sweet Hammy. Thanks.

[DEE]

HI Sangye
glad to hear your home tried to stay awake last night to see if you posted anything but had to give in and go to bed !!
its 6 am now and was pleased to see your post come up on my screen take care of you and REST after your big day yesterday:hug2:DEE x

[elephant]

Sangye, glad your OK. I too thought you would be admitted. You mentioned your abdomen being swollen, and shortness of breath. It could be that there is so much fluid pushing up in the lung area that it's causing some Shortness of breath. It's just a thought. A lung function test would be good too.

[Sangye]

Another thing Dr Seo said yesterday that mayl be helpful to some of you, "We've had excellent results with ritux at this institution, especially in controlling your type of involvement." (My type being refractory, primarily lung causing alveolar hemorrhage)

Each time I've seen him he is much more hopeful about ritux. So many more Weggies are on it, and the data is pouring in.

[Brooke]

Glad you are ok Sangye and that is great to hear about the Rituxan, I hope it helps everyone!:thumbsup:

[LisaMarie]

:hug3::hug1:Sangye...sending all the gppd vibes I can your way....please keep well ...we need you ...glad you re not in the hospital and glad to hear more positive things on rituxan...it is my life line right now ...I know it may be crazy but I am putting alot of stock in it so I hope it works for more...only 2 more doses then we will see......

[Sangye]

Thanks Brooke and Lisa Marie.

Lisa Marie, it doesn't sound crazy to me at all! Since ctx didn't work for me, rtx was my only chance. I sure put a LOT of stock in it too! I know it's gonna work for you, too.

[marta]

BTW, nice to have you back Sangye, it was so quiet here without you yesterday. :wink1:
I'm glad you made it through what you anticipated to be a gross day, and now it's over, and only good days ahead.
Right?

[Sangye]

BTW, nice to have you back Sangye, it was so quiet here without you yesterday. :wink1:
I'm glad you made it through what you anticipated to be a gross day, and now it's over, and only good days ahead.
Right?
Thanks, Marta. Unfortunately, Dr Seo said it will be many weeks until I'm feeling better. I'm in terrible shape today. :thumbdn:

[marta]

Thanks, Marta. Unfortunately, Dr Seo said it will be many weeks until I'm feeling better. I'm in terrible shape today. :thumbdn:I'm so sorry to hear that Sangye. I wish I could jump through the screen and give you a big hug, or make you some yummy stuff that would make you feel better (that works for me :drool: - I finally get to use this smiley). Stay strong and know that we're all thinking of you, and sending you tons of good, healing vibes. Do you get massages? That's always someting nice... just a thought. Lots of love coming your way.

[Sangye]

No massages.... If you have had chemo you should only get very light massage. Otherwise the chemo can be released into your bloodstream and do damage or even be deadly. People who have had chemo and are able to detox (eg. cancer) afterwards can have regular massage once they detox. That isn't an option for us.

Thanks for the love, though. That's good no matter what we've got!

[marta]

Whaaaaaat????? Nobody told me this. I've gone for a few since the EVENT, and of course they feel so incredibly good. So once we finish chemo, can we have them? Can you tell this is traumatic news to me? I loooove massages. What a total bummer.

The love is good, nay great, but you don't get that instant physical gratification you do from a massage.

[DEE]

Thanks, Marta. Unfortunately, Dr Seo said it will be many weeks until I'm feeling better. I'm in terrible shape today. :thumbdn:

Hi Sangye hope todays a little better slow and steady as you would say take care of you DEEx :hug2:

[elephant]

Hi Sangye hope todays a little better slow and steady as you would say take care of you DEEx :hug2:

Ditto to what Dee said.

[Sangye]

Thanks you guys. I had a major cry last night before bed. I just can't believe that I'm this weak again.
Pred + Sangye = Mess

[Sangye]

Another thing Dr Seo told me was that even with these high doses of pred, it might be best for me to split it into multiple doses (up to 4) throughout the day. He said it may be that the big hit and drop is part of what is wiping me out so badly. I suspect that's true. About an hour after I take it, I turn sheet-white and feel like I'm going to collapse. It continues for many hours. Today I'll try splitting the dose.

[Jack]

I've often thought of splitting the dose myself because I suspect that I'm running low by the time morning comes around, and pick up after taking my pills. Since you are more sensitive than most, you are in a good position to see if this has any effect. Let us know how it goes.

[Sangye]

LOL-- Okay, I'll be the guinea pig for this one.

[Sangye]

Something else Dr Seo told me this week that might be of interest to you guys. He said that every time you go back on pred the body reacts completely differently. It's especially true for the high doses but any dose can do it. I can sure testify to that! I was miserable on the original doses in '06, differently miserable on 4mg, surprisingly fine (!!) at 40-60mg, then miserable at 30mg.

It doesn't just apply to being off pred and going back on it. It can happen if you're on a low dose and have to increase it. Isn't life in Weggie Land JUST GRAND? :glare:

[Jack]

It is impossible to predict so many thing associated with Wegs and its treatment, perhaps we need a Forum clairvoyant.

Has anyone been to a clairvoyant? How did you get on?

Sorry, that might be hijacking the thread! :blushing:

[DEE]

Jack how much preds do you take a day ?

[Jack]

10mg.
For a long time I was on 5, but had to increase for some reason (forgotten now) and now I can't reduce it without increased deafness and ear pain.

[elephant]

Jack I am still fighting that battle. Same thing over and over. drop down to 5 ear hurts, sinus worse, clogged really bad...

[Sangye]

Okay, guys I'm in need of your advice. I'm getting worse every day. I went through my daily log of symptoms and my emails to Dr Seo, trying to see if I could figure out what's going on.

Ever since I went back on 30mg pred I've gone downhill every day. It's been 4 days at 27.5 mg and I've gotten noticeably worse each day. The past couple days I've been retaining huge amounts of fluid. What makes it strange is that I wake up with not that much fluid and within a couple hours of taking the pred I suddenly fill up with fluid everywhere. This is despite the morning diuretic. As the fluid builds I also get very short of breath and weak. I've never had this pattern before. My usual pattern is to get lower extremity swelling by the evening.

These aren't the only symptoms but they're the most objective. Because it's getting worse by the day, and because I'm really having a hard time coping with it right now, I'm considering lowering the pred tomorrow to below 25 mg. I'm feeling really depressed--- not just as a result of frustration, but chemically from the pred. I can tell the difference. I'm thinking 30 mg is just way too high a dose-- that we should have raised it to about 20 mg and tapered down from there.

When I saw Dr Seo the other day he was kind of exasperated by my complaints. He can't give me any idea of how long it will go on for. So I can't really ask him what to do because he's just going to say "I already told you to stay on 27.5 mg for another few weeks." He had said I'd feel better if I were on a much higher dose of pred but that it wasn't okay to do that. I'm just not convinced about that. I think my body is saying this is way too high already.

Ideas? Does this even make sense?

[Jack]

That is a bad situation to find yourself in Sangye, but I think that in your position I would try dropping the dose. You are not going into the sort of territory where you might get Pred withdrawal problems so if it goes badly, you can just bang the dose up again and have another think.

I would not usually advise this sort of action, but I know that you are aware enough to handle it.

Perhaps if you split you dose, you can see how things are going during the day and cut out the last dose if you are doing OK?

Best wishes go out to you.
Jack.

[Sangye]

Thanks, Jack. I did split the dose into three today. It still happened, and each time I took more I got worse. That's what really got me thinking that this is too much pred.

If I needed the pred to control Wegs I wouldn't monkey with it. I'm only on it because we tapered it too fast. Man, my body has gotten really thrown around in the past 3 months. Just moving several pounds of fluid in and out each day is very hard on multiple systems.

[elephant]

Sangye, I can't figure it out either. I agree with Jacks statement.
I am concerned about the fluid building up. It's like your body can't get rid of it. When was your last Echocardio gram?

[Sangye]

I did an echo very recently. I don't think my heart is a problem, just that the fluid builds up in my lungs as well. I've had increasing problems with fluid retention the past several months.

Before the current problems began, I'd get up in the morning with some fluid retention. It would be harder to breathe. As soon as the lasix kicked in and I started peeing it off, I could breathe easier. The echo was normal. Of course I had already peed out that day's fluid.... It's like subclinical congestive heart failure.

[elephant]

Glad your echo was good. You may need something stronger to rid of this fluid.

[Sangye]

Dr Seo didn't want to increase the lasix. I don't know why. I'm only on 40mg bid.

[JanW]

I don't have anything to offer other than best wishes while you figure it out. You will no doubt have many people here who can offer valuable advice.

[Lightwarrior]

The first thing that pops into my head is pulmonary hypertension, it could even explain your dizziness and it is a bit like subclinical chf. I think that could be coupled with adrenal insufficiency secondary to the prednisone up and down. I will keep thinking. Your Dr. Seo may be really good at Wegs but as a specialist I wonder if he is missing a bigger picture?

[Sangye]

He ruled out pulm hypertension when we did the last echo, since I had some of the same symptoms-- to a lesser degree.

I decided I'm going to decrease the pred by 5mg tomorrow-- to 22 mg. I think that's what a regular taper down from 30 mg would be like. It's worth a try. This is exactly how I felt when I was first on pred in 2006. My lungs were still hemorrhaging and were full of clots, though. Glad those aren't still happening. Thanks for thinking on this, Lightwarrior. You nurses have such valuable field experience.

[Sangye]

Okay, so I have been experimenting today....

I lowered the pred by 5mg and took it all at once instead of splitting it into smaller doses. I've had much less of a problem with fluid retention, shortness of breath and depression. I'm going to stay at this dose a few days and then lower it again when it feels right.

When I originally had trouble with the ENT's speed-taper off 60mg, Dr Seo said my body would sort it out given time. He only put me on the 30mg slow taper because he thought it would give me relief sooner to go back on a higher dose. Unfortunately, those higher doses feel like they're beating the pulp out of me. I think I can find a middle ground taper. If I'm going to be uncomfortable anyway, I might as well avoid the damaging side effects of pred.

[JanW]

Wow, Sangye, thank goodness you have the medical experience and personal knowledge to work on this yourself; I don't think I would know where to turn.

I hope you continue to feel better.

I am also going to let everyone know here, since I know everyone reads here, that I will be on a cruise with my kids until the end of next week and won't have access to the internet. So don't worry about me, I'm just off enjoying myself, not sick or anything!

[Sangye]

Yeah, there was actually more to my decision than I wrote. It requires understanding the biochemistry of adrenal function-- way too long to explain it here! But I knew I was going to be on my own with it. Dr Seo only sees it from a medical point of view. My chiropractor only sees it from a holistic point of view. I'm the only one who understands both at this point, and obviously the only one who's in the body knowing how it feels.

It's going to take time, but I feel more positive about getting through it.

I hope you have a great time on the cruise. Stay healthy and enjoy yourself. :smile1:

[MCC]

Hi,
I'm so sorry Sangye that you are feeling so unwell still.

Do you think a diuretic type tea may ease the fluid retention- like dandelion?

[elephant]

Sangye glad thier is some improvement.
JanW have a wonderful time with your family! Lots of good food on the cruise!

[Sangye]

I got up this morning and felt even better. Because the pred has long worn off by then, I knew that meant to lower the dose even more. I lowered it to 20mg and felt MUCH better all day. I never swelled up or got depressed. In fact I'm my usual happy self again. So tomorrow morning I'll see how I feel when I wake up and decide whether to stay at 20 mg or drop it some more.

[DEE]

Please be careful Sangye DEE x :hug1:

[Jack]

Don't push the point too far Sangye. Try to show a little patience. ;)
If 20 is working for you, then stick at that for a while until there is good reason to reduce again. Try not to wake the dog up!

[elephant]

Sangye, I agree with all the above statements. I don't want to see that WG dog running around on this forum. :lol:

[Sangye]

Hang on, you guys. Remember that the Wegs dog is nicely asleep and the only reason I'm on this dose of pred is because tapering too fast made my adrenals unhappy. It didn't wake up the Wegs. Even Dr Seo never expressed concern about waking up the Wegs with all the pred changes the last couple months.

I can tell the Wegs is still asleep. The improvement in my symptoms when I lowered the pred was that noticeable.

Right now the only concern with dropping the pred too fast is not to upset my adrenals again. Last month they tapered me off the 60 mg in ONE WEEK-- 40-40-20-20-10-10-5-5 then back to my usual 3 mg. :scared: Thankfully I kept my daily log and can see that I did great until it dropped to 10mg. Well duh-- it was crazy to think my adrenals could catch up to that, especially since they had spent most of the prior month in near shutdown.

My primary goal right now is not "Get to 3mg as fast as possible." It's "Give my adrenals what they need so that I can get back down to 3mg and feel good again." It's clear that doses over 20mg were way too much for them and were weakening them by the day. Staying on that longer only makes the problem worse.

I was patient for the past several weeks, thinking my adrenals would settle down with the 30 mg. I'm really glad I figured out what the problem was. I think I'd be in the hospital by now if I hadn't.

[Jack]

It is just that you are scaring us Sangye.

It was not only the Wegener's that I was concerned about, but your ear problems too and your posts are giving the impression of rushing things a bit. I'm sure you are sensible enough and know what you need well enough to look after yourself, but we are concerned for you and don't want it to go wrong just when you are starting to feel better.

Hope today is another good one for you (relatively speaking).

Jack.

[jola57]

Sangye, I'm with Jack on this one. Please, please take it easy. We know how badly you want to get of pred but take it realy nice and slow. I have been giving a lot of time between tapering, at least 1 to 2 months even at you dosage at 30 to 15 going down by 5's. Same with 10 to 4, at least 2 months per 1mg. I am happy to say I am holding on 4 (sometimes alternating with 5) for the past 3 weeks and except for some pain in the arms I am doing fine. I rushed las year and look where it got me. So as much as you want to get down fast - take your advice - and taper by tiny increments giving it at leaszt 1 to 2 months in between. It is our time to nag at you LOL

[Sangye]

Okay. Lemme try again... :smile1: I know you guys are worried. I'm really sorry because the last thing I want is for you to worry about me, especially when I'm doing better! I understand where you're coming from.

Jolanta, it isn't at all about me trying to get off pred. Really. It's about being at a dose that was supposed to fix something but is actually harming me. Why would I continue to do that? I honestly don't care right now what dose of pred I'm on. I just want my adrenals to recover.

Jack, the thing you guys don't know about me is that no matter what it looks like when I post something here, I'm an extremely slow decision-maker. I analyze things to death. I don't make any decisions impulsively. No one will go shoe-shopping twice with me because I take forever analyzing the shoe for its biomechanics, fit, etc... Seriously. Hours. To buy one pair of sneakers. So while it looks like I just woke up and said "Hey, I'm gonna take 20 mg today" I actually had spent a lot of time the day before reviewing my daily notes, symptoms and adrenal physiology. It became clear that we were doing the exact wrong thing. And each day that I decide how much to take has quite a bit of analysis behind it.... It's embarrassing actually. Like a mild form of OCD.

As Dr Seo reminds me every time, this isn't an exact science. The best medical decisions are made based on evidence with a bit of intuition thrown in. You can harm a patient with too much emphasis on one or the other.

I also wanted to tell you that since I'm not accumulating huge amounts of fluid, the vertigo is way better. I had a hunch it was a contributing factor. They know that a high salt diet can cause Meniere's disease or just vertigo attacks and that diuretics often help. I saw this trend as I dissected my daily notes. The vertigo had been improving until I went back on the 30mg and started retaining fluid. And those splitting headaches I was having? I believe they were also due to the fluid retention, which elevates the intracranial pressure. I already have a problem with that.

So please, stop worrying. I'm fine. If I'm not fine I'll tell you and you can commence worrying again. :biggrin1: Big hugs to you guys.

[Sangye]

Oh, and my arches are looking fabulous today. :thumbsup: That's an objective sign of happier adrenals. They had gone completely flat on 30mg pred and have perked up with each drop in dose.

[elephant]

I was rolling on the floor laughing Sangye. Note to self , " Do not take Sangye shoe shopping." I will take you to Whole foods.

[Sangye]

LOL-- it's no better there! A couple months ago I broke my neti pot and they didn't have the same one at Whole Foods. (I had spent a LOT of time deciding on that one many years ago....) They only had one with a handle but I didn't like it. I bought it because I had already done an internet search/evaluation and had discovered I couldn't get the one I wanted without paying much more and waiting a week for delivery. I had gone on numerous websites, read reviews, analyzed all the alternatives.....

I grilled the salesperson. Are you sure you don't have any other kinds? This is Whole Foods! I can buy 5 different brands of vitamin C, but you only have ONE neti pot? I tried to be polite but she was interfering in my carefully thought out plan.

I brought the Whole Foods neti pot home and tried it. I fussed about the different angle of the spout. I think it makes my neck hurt to use it. Yes, it definitely does. See that? I didn't have that neck tightness before I got it.... Is it really cleaning my sinuses as well as the last one? I don't think so. I mean look, not nearly as much water came out.... The spout doesn't fit as snugly in my nostril, either. Look at all the water that pours out and across my face....I didn't like that it was big. What if someday I have to travel with it? I can't stick this beast in a carry-on.... I didn't like that it looks like a teapot. What if I'm in the hospital and whoever is staying at my house uses it to make their tea? I didn't like that it was hard to tell how much to fill it. If I use too much water the saline solution will be too dilute and that will irritate my sinuses....

I even kept the BROKEN neti pot on my bathroom counter for a week, looking at in longingly. It was so perfect.... The best. I mean, look at it. They really thought through all the details. Not like this new piece of junk that some artist threw together because they wanted a neti pot that looked like a teapot.....

Now you know. Life in Sangye's head. :blushing:

[Jack]

I think I was happier before I read that. :unsure:
Perhaps some more therapy is called for.


:wink1:

[Lightwarrior]

LOL-- Now you know. Life in Sangye's head. :blushing:

Nice try, but we are still going to worry about you, it's in our DNA, it is the way you trained us. :flapper:

[elephant]

Here are a bunch of smilys for you Sangye. :flapper::hug2::thumbup::drool:

[Sangye]

LOL-- therapy, worries and smileys. Okay, that's good stuff. :biggrin1:

[Lightwarrior]

LOL-- therapy, worries and smileys. Okay, that's good stuff. :biggrin1:


That's becaus you are good stuff :hug3:

[jola57]

Ok, is the one in the middle showing us what I think he is showing us LOL. Sangye, we worry just like you worry about us. Sometimes knowlede makes us blind, so as long as you are comfortable so are we. Aren't those smileys adorable.:thumbup:

[Sangye]

Ok, is the one in the middle showing us what I think he is showing us LOL.
ROTFL I did not notice that! I've been mooned by a smiley!

I love the smileys. They make me laugh every time I see them.

[DEE]

Sangye i thought i was good at changing the subject:wink1:
take care of u DEEx

[Sangye]

Hey, I wasn't the one who pointed out the smiley's butt-crack! :laugh:

[LisaMarie]

Sangye
you are a compassionate complex person that we all love and need!!!!! so take it easy please!!!!!!.......also i found a neti pot in an asian supermarket once so try the quirky stores ...it may have that buried treasure you need...have a good day...remember we love you:thumbsup::drool::hug1::wub:

[Sangye]

Do not try to lure me into looking for a new neti pot. I don't think I can take the pressure again! :ohmy:

I'm doing fine-- please don't worry about me.

[LisaMarie]

Do not try to lure me into looking for a new neti pot. I don't think I can take the pressure again! :ohmy:

I'm doing fine-- please don't worry about me.
ok send me the pic brand and serial number and i will go on the savanger hunt for it ...i love quirky stores .....lol.....maybe it will keep me out of trouble???

[Nancy]

Hey Sangye from one to another -
I hear your logic and considerations with Pred taper as well as the primary purpose for being on the Pred in the first place. I agree and do not feel like the Prednisone is in my best interest at this time and the taper that Doc wants me to do is PAINFULLY slow... I have never seen nor heard of one this slow in the history of mankind and 23 years of healthcare experience...
I do know that when people who are aware of you and share some common experiences with start to "gang" up on you - it may be time to review... I know that I can argue my way out of a paper bag...well, most times. I told my doc I would pay him under the table to stop the prednisone - he laughed and asked my mother to talk me into being patient - I told him I do not have any patience and have always been unable to produce it. I am not certain Pred is healthy - but continue to examine the treatment course...from as independent a view as possible. A bit of knowledge is always somewhat dangerous in the wrong hands or inpatient mindset.... I am your seperated twin regarding the over analysis on many issues... there are so many "bases" to cover - why not take the time...Your body VERY obviously doesn't like the pred and teaches you a new outlook on the world everyday - hence the dizziness for sideways and from the ground up views... You know the slower the wean the less issues with adrenals and WEG monster waking up... If you have the fluid retention - consider Bumex - it pulls from other places than the Loop of Henle - more overall systemic aggressive... minmal price difference - since they are both old meds...
It is important to have others realize that your medical training and awareness of multiple "faces" of your body and WEGS provides a lot of information in decision-making and that others need to depend and trust their health care provider for treatment decisions but not be afraid to speak up...especially when your gut tells you too... Be careful of experimentation without knowledge with meds and dosages... ( I feel like such a Hall Pass stooge)... Do not harm yourself by changing your meds without a medical care provider to confer with... It could cost you a Flare or worse...:blink:

[LisaMarie]

nancy i have to agree with u..and being nurse for 20 years ...we take care of patients we are not wired to have patience....lol..but i am trying to learn.....each of us is a complex WG survivor....so we have to listen to our bodies...right? the tough part is getting everyone else to listen and understand.....Sangye i hope u feel better today

[Sangye]

That is all good advice in general. I would never mess with pred if I didn't know the drug, adrenal physiology/ biochemistry and my own body very well. There was enough objective evidence that showed we were doing the exact wrong thing-- raising it way too high and tapering way too slow from there. We actually created a problem that wasn't there before.

When Dr Seo raised it back to 30mg, my gut told me we should do 20mg and taper from there. I'd felt great at that dose and it was only the 4 day taper off that that created the problem. I didn't argue with him and went on the 30mg. I toughed it out for 2 weeks, believing he must know best, even though I was getting new and worse symptoms by the day. They were not typical pred side effects. By the last few days of it I was in deep trouble. The problems were escalating by the hour. If I had stayed at that dose I'd be typing this from the hospital.

The fact is that when I lowered it I improved immediately. I understand what he based his theory on, but he was wrong. He thought I'd feel even better on a dose way above 30mg. Thank goodness we didn't do that.

I'm not going to speed-taper off the 20mg. I'll taper at a slow pace, even slower once I get below 10mg. I'm going by my body's reaction, though--not deciding ahead of time exactly what the taper will look like.

So please, you guys. This isn't about me being stubborn or ignoring my doctor. It's about knowing what was going on in my own body, knowing how to fix it and having the skills to do it safely. I was in quicksand and Dr Seo thought I was on stable ground. What was I going to do? There was no way he was gonna listen to my idea, so I was on my own to test it.

Our docs--even the Wegs docs-- aren't perfect. Last year he didn't believe I was flaring until my lungs were bleeding. I knew it 4 months before. I also knew the Cellcept was too low and asked to raise it. He didn't agree, but when the hemorrhaging started he said if we had raised it earlier I could have avoided the severe flare, ctx and maybe rtx too. Yes, the Wegs docs are brilliant and know things we don't. But in the end we're the only ones occupying the body in question.

[LisaMarie]

That is all good advice in general. I would never mess with pred if I didn't know the drug, adrenal physiology/ biochemistry and my own body very well. There was enough objective evidence that showed we were doing the exact wrong thing-- raising it way too high and tapering way too slow from there. We actually created a problem that wasn't there before.

When Dr Seo raised it back to 30mg, my gut told me we should do 20mg and taper from there. I'd felt great at that dose and it was only the 4 day taper off that that created the problem. I didn't argue with him and went on the 30mg. I toughed it out for 2 weeks, believing he must know best, even though I was getting new and worse symptoms by the day. They were not typical pred side effects. By the last few days of it I was in deep trouble. The problems were escalating by the hour. If I had stayed at that dose I'd be typing this from the hospital.

The fact is that when I lowered it I improved immediately. I understand what he based his theory on, but he was wrong. He thought I'd feel even better on a dose way above 30mg. Thank goodness we didn't do that.

I'm not going to speed-taper off the 20mg. I'll taper at a slow pace, even slower once I get below 10mg. I'm going by my body's reaction, though--not deciding ahead of time exactly what the taper will look like.

So please, you guys. This isn't about me being stubborn or ignoring my doctor. It's about knowing what was going on in my own body, knowing how to fix it and having the skills to do it safely. I was in quicksand and Dr Seo thought I was on stable ground. What was I going to do? There was no way he was gonna listen to my idea, so I was on my own to test it.

Our docs--even the Wegs docs-- aren't perfect. Last year he didn't believe I was flaring until my lungs were bleeding. I knew it 4 months before. I also knew the Cellcept was too low and asked to raise it. He didn't agree, but when the hemorrhaging started he said if we had raised it earlier I could have avoided the severe flare, ctx and maybe rtx too. Yes, the Wegs docs are brilliant and know things we don't. But in the end we're the only ones occupying the body in question.
Oh Sangye i hope i did not offend you..that was not my intent....I know we know our bodies and it is hard to get anyone to listen to us...even the best WG doc...we are just concerned.......I know you are a educated woman who is very intune to your body and the way you r wired.....please accept my apoligy...have a good day

[Jack]

The internet is an imperfect tool for communicating accurately and you may be thinking that we are ganging up on you when you know that we would never do that, we're all just scared about the problems you have been having. I'm so glad that you have been able to work out the correct strategy for your meds. and you are right not to predict how to progress from here. Just use the same techniques that have brought you this far and adjust things accordingly.

Hope you continue to progress towards a rude state of health!

Jack.

[Col 23]

Hi Sangye
Sorry havent been on for a while, been up and down with different thiings and had visitors.
Sounds like you have had a rough and frustrating time of WGs and Pred, I hope that its settling down and your feeling much better.
cheers Col 23

[Lightwarrior]

Thanks you guys. I had a major cry last night before bed. I just can't believe that I'm this weak again.
Pred + Sangye = Mess

Remember everyone, how Pred interacts with our Sangye. I don't think anyone is trying to offend her and I'll bet she doesn't either. We just need to let her vent about our mothering (or should I say nagging) at some point she will be so very proud of us.

[RCOSSIO]

Sangye when i got 20..at first my doc lowered it to 15...and that was a rough ride. Had to go up to 40. When I got to 20 the second time he again lowered it to 15...dejavu. The third time i got to 20, he wanted to lower it again to 15 and I said no way Jose in my perfect Spanglish.

I decided knowing my BODY...that it was best to lower by 1mg every week...and u know what i have and I am at 2mg quicker that I thought.

I agree docs are not perfect...but we know our bodies better than they do :)

[Sangye]

Richard, it's so true. And it's not like I've been at these high doses for long or am trying to control Wegs. That's when you have to go at a snail's pace.

For the rest of ya-- I know you mean well and are just honing your nagging skills.

I actually figured out the mechanism of what went wrong. The adrenals shut down after you've been on at least 20mg for at least 3 weeks. During the 2 weeks on 40-60mg, mine didn't shut down. I know that because I felt quite good on them. But when Dr Seo put me on the 30mg, they shut down within 9 days. From a holistic point of view, when pred shuts down the adrenals, it continues doing deeper damage to them. So my already damaged adrenals were being drained by the day. This is lasting damage. If I had gone on 20mg instead and tapered just a couple mg that first week, my adrenals never would have shut down and never would have been further depleted.

Since I got down to 20mg, I don't have the severe kidney pain. That tells me my kidney and adrenal gland were really taking a beating. :sad:

[me2]

It seems to me from all I have read and all I have personally experienced that managing prednisone is one of the most difficult aspects of treating our WG. It seems that the range of dosages and the size and speed of tapers affects many of us VERY differently and the doctors have no way to look at us and tell how the drug will affect us and how we should increase or decrease at any given time. I think they go by what they are taught and whatever their experience with other patients might be. It falls on us the patients to be especially in tune and informed (reading other peoples experiences).
Some time ago my doctor was adamant that I take prednisone on alternate days. I tried this several times and each time I got worse quickly. For some this might be a good strategy. For me it was not. The lesson for me with prednisone is to listen to my body more than my well intentioned doctor.
The doctor I have now leaves the strategy almost totally up to me. Sometimes when I am at a loss I ask him for advice and I do what he says if I don't have an idea. Its not a perfect system but prednisone and WG defy perfect treatment don't they? We must always be aware , and constantly learning.
I couldn't find the thread on weight loss and pred so I will insert my comment here - I have managed to loose another 4 pounds. Woo HOO
I attribute this to increased exercise ( because I am feeling better and can do it now) and careful diet management. I have added a new little trick to my bag of anti pred-fat ideas. I bought a bag of lemons recently and have been drinking a whole lemon juice in two glasses of water. So far it works good as an appetite suppressant. I was taking it for vitamins and detox and was surprised it also decreased my appetite. Of course just the water can have that effect too.
Sangye your experience with pred is very different from mine so I can't offer any suggestions - just get better anyway ok?
Richard when I read your posts I hear some kind of music in the background- what is that you have going??

[jola57]

Too much of the "good stuf" Sangye is no good it seems. As with all of us there are no simple or precise answers, its all learn with luck in between. I hope all will go well and you can taper without shutting down. Good luck

[elephant]

Me2, Congrats on the 4 pounds off! Yahoo! :thumbsup:

[Sangye]

Some time ago my doctor was adamant that I take prednisone on alternate days. I tried this several times and each time I got worse quickly. For some this might be a good strategy. For me it was not.
Same here. :confused1:



I have managed to loose another 4 pounds. Woo HOOWHOOYA!!! That's great to hear. :w00t:



Richard when I read your posts I hear some kind of music in the background- what is that you have going??ROTFL Same here. :laugh:

[Sangye]

This may help some of you who are tapering and wonder when you've dropped too low.

For me, a 100% indicator is afternoon sleepiness that wasn't there before I lowered the dose. I don't know if this is universally true but I bet it is. Pred starts to wear off by the afternoon. If you're not getting enough your adrenals will poop out.

Almost all the other symptoms I get-- fluid retention, weakness, pale, depression-- occur whether the dose is too high or too low. These probably vary a lot between individuals depending on pred sensitivity and other conditions.

[elephant]

I usually have to take a nap every afternoon. I take a 30 min to 1 hour nap. I reduced my prednisone to 7 mg a couple of days ago. I am wondering if I need to split the dose..take half in the morning and half at night.

[Sangye]

Elephant, did you need a nap before you started tapering?

[elephant]

I always napped when I can. I don't sleep well at night sometimes. I figure if I can walk 4 miles every other day with out huffing and puffing...I'm doing pretty good. :w00t:

[Sangye]

Yeah, that's great! Woot for you!!!!

The afternoon sleepiness to watch out for doesn't get better with a nap.

How fast are you tapering, Elephant?

[elephant]

Not fast enough! :) I have been playing around with 7 mg since beginning of June, then moved it to 8 for three weeks and 7 1/2 for three weeks and now 7. I do feel better after a nap, is that a good indication that I am alright ( no adrenal insuffiency)?

[Sangye]

Since your sinuses and ears are kicking up a fuss (from another thread), it sounds like you're dropping too fast for the Wegs, although probably not too fast for your adrenals. Feeling rested after a nap is a good sign adrenal-wise. If your adrenals were not functioning, a nap would not be restorative.

What dose did you start at, and when did you start tapering it?

[elephant]

July of 2008 I was on 60 mg and then tapered but them put back on 60 mg of pred Feb 09'. In oct 09' I was at 5mg ( if I can recall). I seem to get worse...ears clogged up, sinus more stuffy, facial pain...so I went to my ENT and he suggested that I go up to 10 mg and see how I felt. It worked. I was on 10 mg for about 3-4 months and then decreased 1 mg 4-6 weeks. On June 15, I went down to 7 mg and the sinus stuff started again...well I had a sinus infection confirmed by culture. So has a appointment 4 weeks ago with my rheumy and we are increasing the Bactrim ( instead of one reg strenght bactrim every other day, I take DS Bactrim every other day) and it seems to be working right now. I have been documenting How I feel...if this doesn't work will try Bactrim DS daily or increase cellcept 2500 mg.
So July came around and I increased it to 8 mg of prednisone and them went to 7 1/2 and now on 7. I plan on staying on 7 until the end of sept.
My Rheumatologist ( local) wants me off prednisone and like to increase the cellcept because prednisone has caused so much damage to my body.

[Sangye]

Are your sinuses and ears doing okay at the current 7mg? It's so good to document it. I'd be totally lost without my daily notes. I lose all sense of time and objectivity.

[elephant]

Today yes. Tomorrow will be third day on 7mg and one DS Bactrim. I am beginning to think the Bactrim is the key. Things change on a dime in Weggie world!:rolleyes1:

[Sangye]

I hope the Bactrim does it. That's a good trade-off for pred.

[RCOSSIO]

ME2...I like to say the background music is us weggies chemically induced...you know I was born during the hippie years...yeah that's it.

[Sangye]

I saw my neuro-opthalmologist today. Everything with my eyes and intracranial pressure is fine. The symptoms I was having seem to be easing up since I dropped to 20mg pred so we think the 30mg pred storm probably raised the pressure a bit for a couple weeks. I'm really glad it's under control again. It was an exhausting day. The tests they do for this condition are completely exhausting as well.

[Lightwarrior]

I'm really glad it's under control again. It was an exhausting day. The tests they do for this condition are completely exhausting as well.

I'm very glad it is under control again also, hope you have more relaxing days ahead.

[me2]

Sangye, I'm glad you are finding some relief from your eye problems. I could write pages and pages (I tend to write too much here anyway) on the eye problems I have had. How scary they were, how long they lasted, how many different causes (all WG but oh so veried) , and how baffeling to doctors AND ... drum roll... my eyes are just fine today and have been for a long time. Hang in there.

[me2]

Oh yeah Richard, that makes sense. So much of my life is chemically induced why not that nice music and those beautiful colors. And the occassional crazy mood that nobody understands.

[elephant]

Sangye glad your eyes are good. Seems things are heading you way!:hug3:

[Sangye]

Seems things are heading you way!:hug3:
And at least I can see them coming.... :laugh:

[Col 23]

The light at the end of the tunnel and its not a train....Yeah..
Col 23

[Sangye]

Super long day at JHU yesterday. I did a brain MRI to get a look at the inner ear. The otologist wanted that just to be sure there's nothing weird going on there. As soon as the first MRI sound started, the vertigo kicked in. It didn't keep going, but when it was over and I stood up, it was in full swing.

It was over 100 degrees here yesterday and I had to go to the downtown JHU campus, too. That meant shuttles and walking. I was already in pretty bad shape. My last appt was with vestibular PT. It turned out to be a good thing that the vertigo was kicked up. The doc did some tests and could clearly see nystagmus in my left eye. That provided objective clues about what's going on with my inner ear.

We think it's a fluid issue. I'm having lots of problems with fluid retention (ever since I've been on the high dose pred again). It's more than the usual pred side effects. When it's kicked up, the vertigo is also. He's gonna talk to the otologist about the results and I'm gonna work on some nutrition things I know that are probably at the root of the fluid problem. My guess is it's either caused by adrenals or vitamin B6 deficiency (which would be worsened by adrenal problems), and it could be both.

[LisaMarie]

hope u r feeling better today

[DEE]

REST SANGYE JUST REST:hug2:

[elephant]

Sangye I had fluid in my ear too, but it got better with prednisone. It goes to show how sensitive you are too prednisone. Thanks for the update. Keep us posted. Here's a couple of elephants giving you a big hug.:hug3:

[Sangye]

There's no fluid in my middle ear. It's general fluid retention that causes increased fluid in the inner ear only. I'm resting for the next several days. Nothing I have to do..... Thanks for the Elephant hugs!

[me2]

I have had weird inner ears stuff at times too. Not nearly to the degree you are having problems but enough to sympathize. At least you have doctors that are listening to you and are blood hounds after the problem. Last time I had trouble my doctor said "Its probably wax in your ear"
I said "In 53 years I have never had wax build up in my ear. In fact one time you told me I had the cleanest looking ears you have ever seen. I thinnk its the WG" He just blew me off as a whiner. Fortunatly it went away with continued treatment of the WG. That or the fact that WG symptoms like to move around. I hope yours decides on a camping trip away from you soon.

[Sangye]

Both the otologist and the vestibular PT doc have spent a lot of time with me going over all the differential diagnoses. They're happy to have my daily log of symptoms since it gives them good clues.

They've said the hearing loss and vertigo could have been caused by a viral infection, Meniere's, an autoimmune process (not necessarily Wegs) or fluid retention. In my case I think it began as a viral infection and has been exacerbated by fluid retention. Ironically, the fluid retention is a result of the adrenal mess caused by the high-dose pred that was used to treat the hearing loss..... Big vicious circle!

As good as my ENT is, he really wanted me to see the otologist. Are you able to see one, me2? They might have a better answer for you.

[me2]

Thanks for the suggestion Sangye. My hearing stuff is really all cleared up some time ago, but its good to know the path if it pops up again.
I just had Cytoxan infusion yesterday so I have been sleeping a lot but feeling a little chipper just this afternoon. I can feel that the infusions really are helping me. I am still working on my Mesna supplement project. I was able to get full articles of studies at the University Library yesterday and emailed them to myself. I haven't had time to go over them yet but I am excited at what I am finding so far.
I got some good ideas from people I talked to at my infusion, my nurse, my doctor, but especially the medical library librarian.
She suggested that I talk to Bastyr college - great idea, don't know why I didn't think of it .
Also I was a bit dissapointed that my doc and the librarian pointed out that the studies I have found so far are rat studies. This means that the results are a bit weak as far as saying it will work for humans. She pointed out that the National Institute of Health funds studies of alternative medicine and I should look into that.
I can see I have a lot of work to do on this but the preliminary results are compelling that there might be some good natural treatments to help protect from several of the negative effects of Cytoxan. Meanwhile I have adopted the no-brainer supplements that won't likely do any harm and have been proven to help rats. I will eat cheese and think 'rat thoughts' to help them be effective.

I can appreciate how complex your head problems are. I have a simular story but it relates to central nervous system damage. I will probably never know what caused the problem directly but as with you it is likely an offshoot of WG and prednisone ie, susceptablity to viruses , other autoimmune problems and fluid etc . The disease process there eventually did stop. It left me with some damage but its not that bad really. The scariest part was when it was active- I don't need to tell you that.

[Sangye]

D'oh! Bastyr--of course! That's a great way to go since naturopaths are trained in pharmaceuticals as well. Glad the ctx is helping you feel better. I can't even relate to that since ctx made me so sick. LOL

[pberggren1]

Sangye, I am glad the Otologist was on the ball and ordered the MRI right away. What is nystagmus?

[Sangye]

The MRI wasn't urgent. He wanted me to do it within a month. It's just to make sure there isn't a problem with the inner ear.

Nystagmus is an involuntary movement of the eyes. They flicker or sometimes track back and forth.

[Fran]

What an awful ordeal for you in that heat too - my heart goes out to you with all the complications you put up with. This nystagmus, has it been caused by that labyrynthitis you suffered a while back as I see on google it is a probable cause, or other mitigating medical problems (or combination of both) - because, oh boy did I get off light, when I had it - just a short course of prochlorperazine and that was more or less it apart a few hearing probs. which are nothing compared.

Rest up, keep cool - Hoping you can get some real respite with your health very very soon Sangye. http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[Sangye]

Thanks Fran. The nystagmus in the left eye shows that the left vestibular (balance) nerve is hyperactive compared to the right. This effectively "proves" the vertigo is happening. It also helps differentiate the cause of the vertigo. Even though the otologist and vestibular PT believe me, it sure is nice to have some objective evidence of something that is usually just a subjective complaint.

I've had enough skeptical looks from docs lately regarding other subjective symptoms-- one of the most frustrating parts of Wegs for me. It's not enough that you have all this going on, but then you have to convince them that it's happening and that it's as bad as you say it is. :glare:

[DEE]

I never wish any harm to anyone really, but I sure wish sometimes that some doctors, nurse practioners, and medical receptionist could just have a little 'taster' of wegener's and it's various bounty !! MY HUBBY SAID THAT LAST WEEK WHEN WE WENT TO HOSPITAL APPOINTMENT AND THE CONSULT DID NOT SEEM TO BE LISTENING
HE SAID HE SHOULD TRY BEEN YOU ON A BAD DAY AND MAYBE HE WOULD LISTEN THEN
SO SANGYE YOU HAVE MY SYMPATHY I YHINK I KNOW WERE YOU ARE COMING FROM
EVEN WORSE IF THEY THINK THE SYMPTOM DOESN NOT FIT:rolleyes1:
PLEASE TAKE CARE OF YOU

[Fran]

I don't wish anyone any harm really, but I sure wish that some doctors, nurse practioners and medical receptionists could have a 'taster' of wegener's and all it's various bounty !! http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[Sangye]

I think we've all thought that at times, Fran! :wink1:

[Sangye]

Well. Score another one for Sangye.... Since we increased the lasix (diuretic) a couple months ago, I've been telling Dr Seo that my potassium is going too low-- maybe not everyday, but a lot of days. Eating a banana isn't enough. He kept insisting it was fine and I kept insisting it wasn't. Finally a couple weeks ago he agreed to test it every 2 weeks to look for a trend. He didn't want to prescribe potassium before that, since too much potassium can cause problems, too. Okay, fine, but I've been in bad shape.

I did labs on Monday and just heard from his office that he's calling in a scrip for potassium. Potassium deficiency can cause muscle weakness, fatigue, edema, sodium retention, headaches, irregular heartbeat-- sound familiar?? These are all symptoms I've not been able to get under control for weeks now. I'm still on a (very) low-salt diet, but the smallest amount of salt that I have causes huge fluid retention.

Dr Seo is a great doc, but I own the body and know when something is off. Don't let anyone tell you they know your body better than you.

[brocky99]

hi sangye hope you feel better soon. you definately seem to be going thru it at the mo. U have so much knowledge about this disease and it symptoms im just glad u know your own body and can tell the doctors how u r feeling and what u think the problem is, we learn so much from you on this forum. I know when i feel different but sometimes its not cos of the wg i just need to learn to understand what means what. I need to stary looking into the dialysis machine now its tells u so much but seems so complicated, an going to ask in a few weeks once i get used to doing 4 hrs the dr last week said i wasnt dialysing very well so want to know why really.

[elephant]

I was on potassium pills last year and that is when I was on high dose's of prednisone. Yes we know best!

[Jack]

And yet I have the opposite problem - Potassium too high. It scares all the doctors, but hasn't killed me yet. ;)

(Yes, I do know what it can do to you.)

[Sangye]

I saw Dr Seo today for a routine follow-up. I'm down to 5mg pred, which is almost where I began when the vertigo/hearing loss started in July. I still don't have any Wegs signs/symptoms and he feels it's still under control. He wants to see the results of today's blood work, though, as it shows how active the rtx is (by measuring the CD19 type of B cell-- the ones destroyed by rtx). We'll redo rtx when they start to recover--hopefully not until early 2011.

About Ritux:
While I am the biggest fan of rtx, he emphasized that there isn't data on its safety for Wegs beyond 5 years. He said he's still most comfortable with ctx for patients, since it's been around for 40 years and the risks are well-known. If it hadn't been so toxic to me, he'd use ctx for me instead. He cautioned me about being a cheerleader for rtx because of the uncertainty. So there you have it. :flapper:

I asked him why some people are put on imuran or mtx right after rtx, but I'm not. He said it's reasonable to put people on those meds, but I have a history of not tolerating much so we're gambling that I don't need anything in-between rtx infusions.

Other stuff:
Lower extremity swelling has become a HUGE issue. The swelling is unbelievable and doesn't really respond to diuretics. After saying he was out of ideas about the cause, Dr Seo said obstructive sleep apnea could cause leg swelling. I've been trying to get a sleep study done for over a year (!!) but haven't been able to get medically stable enough to do it. I'm going to get it scheduled asap. Wouldn't it be great if that was the cause of the swelling and overwhelming fatigue/ weakness?

Meanwhile, the only specialists I haven't seen about the swelling are pulmy, cardio and neph. He's willing to send me to whichever I choose, but I should decide soon before they get booked for the holidays. I'm wavering between cardio and neph. I don't think a pulmy would have anything to contribute.

Finally (I think), I asked about testing my adrenal function someday. Last year the JHU endocrinologist said I had to be off pred for 3 days to do the blood test (AM Cortisol). Dr Seo said now would be a good time to do it, before the rtx starts to wear off and the Wegs can kick in again. He's worried that it could anyway, but feels that restarting the pred again would keep it under control. I'm going to get a little more stable at 5mg or lower before I do it. He said what we both know-- that I will feel like absolute death for those 3 days-- but there's no other way to get the info. :unsure:

[me2]

Sangye,
Good to hear from you here. Thank you so much for sharing your recent knowlege about cytoxan and rituxan. I either don't have great docs like you or they don't talk to me enough. Maybe I have both. Either way , the info you share is VERY much appreciated. I am currently doing cytoxan infusions every two weeks. I had one just two days ago. Man, would I like a vaction from that. Still , it could be worse. I have been mostly up and around. Thats better than how Wegener's treats me.
I'm sorry you have this mysterious swelling. It must be so frustrating and here it gets put on the back burner as you deal with other things. I have a crazy thought. What about a good massage therapist. I don't know if it would help but at the very least it could feel good. I'm sure you know that a gifted and knowlegable massage therapist can some times help resolve truely serious medical problems. Its just a wild thought but you deserve some kind of medical treatment that feels good.
I know what the pred situation you are in feels like. I'm going to bet almost everyone here knows the special pleasure of pred withdrawl. I'm sending mental prednisone to help tide you over. You don't need a prescription and I don't need to know if you have insurance to cover it .

[pberggren1]

Thanks for the update Sangye.

My doc said basically the same thing about the rtx vs. ctx issue.

I'm sorry to hear you will feel like death for 3 or more days to do that test for your adrenals.

I would also take all 3 docs, neph, pulmo, and cardio, if it is no extra cost to you. Maybe I am being too cautious or anal or like a mother hen.

I hope the cause of your swelling can be found soon.

[DEE]

Sangye glad you had a productive visit ,i like my wg consult for the same reason he never rushes and is always willing to explian
i took a friend with me last time and she was very impressed with him .
hope they get to the problem of the swelliing soon
take care of you DEE x

[Col 23]

Hi Sangye and all
Havent been on for a while very up and down. Great to hear that your down to 5mg Sangye but can empathise with the other. Im down to 10mg and feel very weak after a week on 10. My nose has some bleeding and burning sensation, knees swollen and painful, feet tingling and numbing, ankles swelling, occassional ear pain, lumps in my legs, some minor eye pain and major fatigue. I know the swelling and pain in knees is due to RA and inflamation and although I wasnt able to get an answer from the Rheumy or the GP about the lumps, I read on the net somewhere that is related to the RA. I think Im starting to flare now Im down to 10mg but I was told to hang in there by Rheumy and was given Mobic and pain killers to get me through. If it gets much worse I will be going back to doc. I feel like Im back to the beginning again but not as bad so hopefully I will get through. I have been reducing pred my 1mg at a time for 3 weeks at a time , that 1mg sure does make a difference. I also had major swelling, I looked as if I was going to give birth. Doc did xrays an I was impacted so had to take something for constipation, still swollen at times. Probably too much info but hope it might help someone.
cheers Col 23
Wishing all well.

[elephant]

Sangye, thanks for sharing and I agree with Phil..need to see all three specialist. I have all three, esp you had a billion lung clots and bleeding....it's good to rule that out re: edema.

Hi Col, I have a feeling you are flaring with WG. When I was first diagnosed they thought I had arthritis...but it was truly WG all along. All those symptoms that your having sound to me like you need to talk with your WG specialist asap. Just looking out for you. Thanks for keeping us updated.

[Sangye]

Dr Seo also mentioned yesterday that another drug that had the potential to be as good as ctx or rtx is not going to be used. (I don't remember if the study was stopped or if it was completed and has been shown to be ineffective or harmful) I didn't get the name of it-- a long one! At any rate, he said nothing else is coming down the pike any time soon-- rtx is it. There are other drugs being studied for milder Wegs, though-- along the lines of imuran, mtx, cellcept, etc....

[Sangye]

I'm really sick today. The woman who drew my blood yesterday had an obvious cold. She's not a very polite person on a good day. She was open-mouthed coughing all over me! You know how close they have to stand to draw blood, and taking my blood takes a long time. I tried not to breathe much, but it went on for awhile. So surprise-- in the middle of the night I got a sore throat that has now gone crazy. My whole face is swollen. My eyes are almost swollen shut. I feel unbelievably weak. I'm going to call the office manager there today and raise a little hell. It's the phlebotomist in the Vasculitis Center, so all the patients are immune-compromised. The lab is tiny-- about 7 ft x 7 ft, meaning any germs accumulate in there pretty fast. There's only one phlebotomist there at once (only one could fit), so it's not like I had a choice. I am just furious about this. Who needs Typhoid Mary in a blood lab? :angry:

I probably won't be on much today. Thanks for the comments above-- I'll have to get back to them later.

[MCC]

ugh how unprofessional of her to work with a cold like that! Poor you Sangye x