Finally getting off Preds

[DEE]

hi just to say
i was told today i can reduce preds from tomorrow going from 22.5mg to 20 mg for three weeks then 17.25mg until 26th aug when i will find out my results off test today eg bloods and i had x ray of hips and spine
will have had bladder investigation and seen rheumy by then depending on what the total picture is by then we talked about possibly starting Imuran as like Rose i need to get off cxt but can do this only slowly as ive been on it for so long
wg consult happier that im more stable now and does not what to rush into anything that might take me backwards again fingers crossed at least it gives me somethingto work towards :)
DEEx

[elephant]

Glad to hear that Dee! Your heading in the right direction.
Rose- Once Dr Langford said I was in remission ...I believe her....just hard to accept the new normal ( my brain doesn't get it) so any little thing brings doubt...which is not good.
I will call her next week, I have some questions.

[Rose Cozzette]

hi just to say
i was told today i can reduce preds from tomorrow going from 22.5mg to 20 mg for three weeks then 17.25mg until 26th aug when i will find out my results off test today eg bloods and i had x ray of hips and spine
will have had bladder investigation and seen rheumy by then depending on what the total picture is by then we talked about possibly starting Imuran as like Rose i need to get off cxt but can do this only slowly as ive been on it for so long
wg consult happier that im more stable now and does not what to rush into anything that might take me backwards again fingers crossed at least it gives me somethingto work towards :)
DEEx excellant! just going down on the preds is good. i wonder if being on preds so long makes it harder to move down on it and how the interactions of it with the other meds are affecting our whole programs. no one has been able to answer this but i have hopes yet. :}

[Rose Cozzette]

Glad to hear that Dee! Your heading in the right direction.
Rose- Once Dr Langford said I was in remission ...I believe her....just hard to accept the new normal ( my brain doesn't get it) so any little thing brings doubt...which is not good.
I will call her next week, I have some questions.
yeah, this new normal is not where we want to be. i tried to convey this to Dr Langford but dont know if i did . acceptance is key yet if we dont keep on fighting for ourselves we wont get as far as we want to go. sigh...

[Sangye]

Acceptance is not the same as capitulation or resignation. It's taken me a long time in therapy to just begin to get that! :)

[Rose Cozzette]

Acceptance is not the same as capitulation or resignation. It's taken me a long time in therapy to just begin to get that! :) the word acceptance is as difficult to understand as the word forgive. they both have so many interpretations that the meanings get confused. in teaching a friend Reiki i was discussing loving oneself and then thought that i need to love my body more than ever now, esp in the state it is in. that changed for me my self image and how i started moving towards self healing with more positiveness. if thats a word. lol

[Sangye]

Yeah, that's a biggie Rose. I still have a tendency to get mad at my body for failing me all the time. It feels like I'm dragging an anchor around.

[pberggren1]

Oh, come on now Sangye. You are smarter and stonger than that to be mad at your body for failing you. Your body has never failed you. You know that deep down. Keep strong and positive and don't give up the fight on Wegs. We all know it is tough but we all need You and one another so keep on truckin'.

[Rose Cozzette]

Yeah, that's a biggie Rose. I still have a tendency to get mad at my body for failing me all the time. It feels like I'm dragging an anchor around. i know, i want so bad to do things again, and get tired and sore and ache. and no new answers yet i tild both dr. langford and baker that i want to be studied and looked at so progress can be made in finding answers. wonder how loud i have to shout to be heard. so how much acceptance am i doing i wonder since i want my full self back ??

[Rose Cozzette]

Oh, come on now Sangye. You are smarter and stonger than that to be mad at your body for failing you. Your body has never failed you. You know that deep down. Keep strong and positive and don't give up the fight on Wegs. We all know it is tough but we all need You and one another so keep on truckin'.thats true, i do rely on sangye for support when i need it. as i do with all of you. so we are all here for each other, always...

[pberggren1]

It's always hard Rose. It took me a while to accept Wegs as well. Sometimes I go into denial and get depressed and then other times I fight back with a vengence.

[Sangye]

No, no Phil, it's not that I'm giving up or anything. It's just a natural response to dealing with the chronicity of Wegs. It affects me most when I'm trying to do something but am limited by weakness or other symptoms. My mind doesn't have Wegs and it wants to do something (eg. take a shower, walk a little faster, hang out with a friend to talk) but my body says "No." It's exacerbated by the fact that for 4 years the Wegs and its complications have been relentless. I often find myself saying out loud, "Oh, come ON!" Normal frustration.

[Rose Cozzette]

It's always hard Rose. It took me a while to accept Wegs as well. Sometimes I go into denial and get depressed and then other times I fight back with a vengence. i guess thats what i do too, tho i feel sometimes like i'm spitting in the wind. everyone tells me how well i am doing but so much is different and less that it's hard to see where i really am. at least i can look in the mirror now, i wouldnt at first. i am not so angry as dismayed at this new me. and impatient.

[Rose Cozzette]

No, no Phil, it's not that I'm giving up or anything. It's just a natural response to dealing with the chronicity of Wegs. It affects me most when I'm trying to do something but am limited by weakness or other symptoms. My mind doesn't have Wegs and it wants to do something (eg. take a shower, walk a little faster, hang out with a friend to talk) but my body says "No." It's exacerbated by the fact that for 4 years the Wegs and its complications have been relentless. I often find myself saying out loud, "Oh, come ON!" Normal frustration.
you said it so well, that is how i feel. this has been the longest year of my life, even after my son died i saw hope because i believe the soul lives on. now i dont know what to feel abt this change.

[pberggren1]

That is good to hear Sangye. I know you are strong!!

[Doug]

Generally, I am a look ahead kind of person, but I adjust somewhat by looking back. I visualize the parts affected, and how damaged they were when I started this journey. Could I do thus and so in December 2003, the month my body finally crashed, on December 19th? How about a year ago? And so on. It helps me with perspective.

Yes, I would love to spend a whole day walking through Bessey National Forest on a lovely fall day, with my Nebraska Ornithologists' Union buddies. It won't happen this year, but I haven't put it off the agenda. One day, it may happen that I am able to join these friends in a limited way, enjoy the warmth of a fall day, the migrating warblers and vireos, the mountain and western and eastern bluebirds (Nebraska is right on the eastern edge of the range of some western birds, and the western edge of the range of some eastern birds: It is a cornucopia of birdy treats!)...!

I would be depressed, I think, if I focused on the what-I-can'ts right now, so I focus on things like I saw an American goldfinch harvesting thistle seeds in my backyard. They wait until the end of the summer to raise families because they feed their nestlings seeds, which, of course, mature at the end of summer. All other species, of course, have done their thing starting (here) in as early as February for the Great Horned Owl (they feed their nestlings pheasant, squirrel, grouse, so February is as good as any time, I guess!).

I got off on this thought, but you get the idea! Rephrase your circumstances: Last year I couldn't do thus and so, but this year I can do such and such. The changes may be small, but any progress is a victory over Wegener's granulomatosis! Cindy climbed Mount Everest. You may never climb THE Mount Everest, but you will metaphorically climb any number of "Mount Everests" in your healing process. Glory in each one, and work toward the next.

[Sangye]

Yeah, I do that. It's just the progress has been unbelievably slow and I've spent a fair amount of time actually going backwards. There were many things I could do a year ago or 2 years ago that are way beyond my reach right now.

[Doug]

The regressions help focus us on our dependence, really, on finding medical relief from the on-going business of WG in our lives. I don't take for granted that I always be in remission, nor do I do things (over-doing physical things, allowing myself to be stressed for long periods of time, etc.) I think might cause a flare- or, if i do, I kick my butt and fly straight until the next time! Your experience is one of the worst I can recall on this forum, if not the worst, because of your sensitivity to Prednisone and the botched treatment you got in Arizona. It's a small plus, but it is one of the things, your particular medical history, that gives you high credibility on this forum: You've been there and done just about all of that!

[Sangye]

You've been there and done just about all of that!

LOL when the vertigo and hearing loss hit 2 weeks ago, a friend asked "Is there any part of your body that hasn't been affected by Wegs or complications?" We actually went organ by organ, and no, there isn't! At one point or another, every single part of my body has had a noteable "issue." Most have resolved, though.

But hey, many Weggies have it WAY worse than me. Dr Seo has told me about some. It's bad out there.

[Doug]

Yeah, just locate one of those horror story worst possible case sites with photos of people with grangerous extremities and horrific pseudo tumors on the optic nerve, etc.! WG must have been too horrible to comprehend before they learned how to manage it.

[drz]

yeah, having been a sp therapist i know the dangers of not keeping on top of it. it feels like little "things" are running around in my body saying where do i go next? what else can i attack and bother? sheesh...

I thought the antibody congress met every night to decide what to attack next. Like any congress though sometimes they can't agree and then they don't do anything for awhile and our body gets a rest. 8)

[me2]

I can relate to everything being said here. What torture and test of spirit. Relentless yes. I have been in the trenches for about ten years now. I cannot even begin to remember all the things gone wrong in this time. Talk about a life going backwards. Perhaps my most dramatic episode was when I was on a bicycle trip in rural western China and I collapsed unable to walk. It would be figured out later that WG had attacked my cerrebellum. Our guide on the trip was a young local Chinese man. He said if I could just walk a little further up the path there was a road where I could catch a bus. In agony and fear I had to tell him I couldn't walk that far. I could only walk two or three steps without collapsing. Walking aggravated the horrible feeling in my head. This great young man looked at me and instantly understood how serious my problem.
He told me to stay sitting and wait and he would get help. Minutes later he came back with another young man with a motorcycle capable of handeling the trail we were on. It took me back near the hotel in the small town where we were staying. He couldn't take me to the hotel because motorcycles were not allowed on that street. Trying to walk to the hotel I was in agony and unable to get far. I encountered some westerners at a streetside cafe and asked if someone could help me get to my hotel that I was very sick. I will never forget the feeling of looking into their eyes and being told no. No.
I moved on and encountered a young Aussie man who imediately and readily agreed to help me. I asked the hotel owner to use the hotel phone. He told me I had to go a few blocks away and get a calling card. I told him I couldn't . He didn't understand. I stood in the lobby of this hotel in front of him and a couple of his staff and just cried unable to walk or make myself understood. He then got the idea and sent someone to get me a card.
I called my doctor at his home in Seattle and by a MIRACLE he was home. I had never called him at home before. He amazingly diagnosed me over the phone and told me to up my prednisone. It didn't help much and I left my tour group to cross China by myself to get back to Beijing and fly home. By the time I got to Beijing I was forced to use a wheel chair.

Its a long story but the jist of that episode is that I am left with permanent central nervous system damage. It took a very , very long time to be able to walk very well again and I still suffer bad sensations in my head. Not real bad but enough to limit my activities. I take Neurontin and also Diazepam at bed time to cope with the damage. I count myself lucky actually that I regained enough ablitity to keep my independence.
I cannot describe what I have been through. I remember trying to research problems with the cerrubellum and reading "not a lot is known about problems with the cerrubellum because people frequently die who have cerrubellum problems". Great.

I told my doctor that I had read that one night on the internet. He knows how much I research things. He then said "Sometimes you should just watch TV." Ha We had a good laugh.

I really appreciate reading about the experiences of people here. It really helps to not feel alone. Other people profoundly don't understand what this disease has done to me. Not my friends , not my family. I feel very isolated at times. Hanging out with you guys is good for my soul. Thank you.

[drz]

Had you been in a long remission when you decided to take such a trip?

Your experience is why I am doubtful I will ever travel very far away from adequate medical care at least not until I feel fairly secure i am not likely to need it.

I am a long way from attaining any remission as I was just diagnosed three months ago and have needed frequent in patient hospital care since my diagnosis

[elephant]

I have been on medicine for years and never felt comfortable about traveling outside the country because of fear of getting sick or losing my medicine. So I would rather travel in the states. I fear that if I go to another country that doesn't speak English ( communication) then something bad will happen.

[me2]

I don't remember how long I had been in remission. I think it hadn't been very long. I remember asking my doctor if he thought it was ok for me to travel and he said something like "You have to live your life. I'll back you up here." So, he was the one I called at home.

In retrospect I still would have done it again. Not in the sense that I would have done it knowing I would get sick but in getting on with my life as soon as I feel able. I do remember at that time that I did feel able. I don't now. I'm not sure I will again since I have damage that makes me concerned about getting too far away from knowlegable doctors. Everyone has to decide what is in their own best interest.
I remember seeing a discussion somewhere here about the woman climbing Everest. When I was young and got extremely ill with WG and then got remission I went on to enjoy another twenty years of good health and was capable of doing anything I wanted too. I worked my body very hard. I wasn't quite as tough as before but pretty close. I was in a state where pushing myself didn't harm me. I"m not in that state now. I don't know if I will ever be in that place again but if I am , I will be as active as this body allows.

[elephant]

Me2 twenty years is a long time to be in remission. You were medicine free?

[Sangye]

I'd have to be very stable for a very long time before I'd even travel far from Maryland at this point. It was bad enough being stuck in a local hospital two weeks ago-- unable to get transferred to JHU the entire week because they had no beds open. Even though both my hospitalist and I talked with my JHU doc, the hospital didn't have certain testing capabilities. They also messed up his orders. All of this might have cost me my hearing.

[Jack]

The main reason that I no longer travel abroad is that my wife is scared that I will get stuck in a hospital miles from home. My forthcoming trip to Cornwall is OK because she thinks she can bundle me into the car and get me back to a local hospital.

[drz]

No, no Phil, it's not that I'm giving up or anything. It's just a natural response to dealing with the chronicity of Wegs 4 years the Wegs and its complications have been relentless. .

I have told people that WG disease is like those old terminator movies where the parts of the robot are still crawling or trying to crawl toward its intended victim. It never gives up and keeps trying to get its target. if WG wasn't trying to kill me I would have to admire and respect its persistence and tenacity because it keeps coming and coming at me it seems.

[Lightwarrior]

I have told people that WG disease is like those old terminator movies where the parts of the robot are still crawling or trying to crawl toward its intended victim. It never gives up and keeps trying to get its target. if WG wasn't trying to kill me I would have to admire and respect its persistence and tenacity because it keeps coming and coming at me it seems.

Good visual, now maybe we can visualize how to neutralize those creepy robot parts.

[Sangye]

LOL-- I think of Wegs as an elite Ninja warrior.

[Hammy8241]

The main reason that I no longer travel abroad is that my wife is scared that I will get stuck in a hospital miles from home. My forthcoming trip to Cornwall is OK because she thinks she can bundle me into the car and get me back to a local hospital.

I can understand your wife’s concerns Jack. Cornwall can be a dangerous place to visit. BIG Crabs, smugglers (Bring me back a bottle please) and the infamous Cornish Pasties not to exclude the fresh cream scones and teas across the county border.:)

Have a relaxing time and i hope you manage to put on weight;)

[Jack]

http://pixzii.com/wp-content/uploads/2009/11/pirate-crab-photoshopped-animal.png
......................................

[Hammy8241]

Ha ha. Very good. That was quick Jack. You must have been waiting for me!
Am i getting predictable?

(Tr5 ok too - one on autotrader for £20+k!)

[Sangye]

ROTFL-- This was great to wake up to! "Ar-ar-ar" clickety, clickety, clickety..... :D

[elephant]

Drz, I had the same visual thoughts relating this to WG. " It never stops and will try to find you it will never stop until it finds you." Too funny.
But , remember the robot does get squished. :)

[LisaMarie]

I can understand your wife’s concerns Jack. Cornwall can be a dangerous place to visit. BIG Crabs, smugglers (Bring me back a bottle please) and the infamous Cornish Pasties not to exclude the fresh cream scones and teas across the county border.:)

Have a relaxing time and i hope you manage to put on weight;)

Hey Jack eat a few cream scones for me and of course cornish pasteries......i willl try to send you all my pred weight gain that is fat not H20...lol Hope you have a great holiday

[pberggren1]

A TR5 can be that much Hammy?

[Jack]

£30,000!
There is no way anyone would pay that.
http://www.autotrader.co.uk/search/used/cars/triumph/tr5/postcode/sk96dn/radius/1500/quicksearch/true
(http://www.autotrader.co.uk/search/used/cars/triumph/tr5/postcode/b928bl/radius/1501/quicksearch/true)

[pberggren1]

I thought that was a little high for a TR5.

[drz]

Drz, I had the same visual thoughts relating this to WG. " It never stops and will try to find you it will never stop until it finds you." Too funny.
But , remember the robot does get squished. :)

but doesn't it re assemble and come back in a sequel, even though it was re programed to be a good guy.

[pberggren1]

That is a good movie. I just can not remember the name of it.

[elephant]

The terminator is the movie.
Drz, LOL...

[Sangye]

I'm going to start a new silly thread about Wegs movies. Because I can. :D

[Lola]

Phil, what was the movie that entailed horrible fat worms or maggots crawling into the crevices of the victim's skiull? Was that the Fly?

[pberggren1]

I'm not sure Lola. But it does sound familiar.

[Rose Cozzette]

I thought that was a little high for a TR5. I am really enjoying the dialogue thats been going on! we weggies do have a good sense of of humor. started the cellcept on just 500 and will increase in a week if alll goes well. am being very cautious now. just diarrhea and lethargic, not too bad ,eh? see the ENT tomorrow for the voice prob. got the summary from cleveland, my life in the last year in a nutshell. lol

[Rose Cozzette]

I'm going to start a new silly thread about Wegs movies. Because I can. :D Creature from the Black Lagoon will do for a first title. lol

[Rose Cozzette]

hope you have a wonderful time! pretend we are all there with you enjoying enjoying...

[elephant]

?Rose, do you see a ENT that specializes in WG? Is he at the Cleveland Clinic? Did Dr Langford recommend him

[pberggren1]

Rose, you have a good sense of humour!

[Rose Cozzette]

Rose, you have a good sense of humour!
thank you, it keeps me from getting too serious abt myself. lol sorry so long to reply, was offline due to a power surge and had to wait for my daighter to reconnect me, the wireless thing got fired i guess. so my computer is back downstairs.

[elephant]

Welcome back Rose. Glad your back. How are you?

[Rose Cozzette]

Welcome back Rose. Glad your back. How are you?started 500 mg of cellcept for 10 days and now on 1000, not feeling too bad with it, the lethargy is the worst. had a little stomach distress at first but is better. it feels really different on this med as to the others which felt so toxic. this one feels like its running around doing things. and once estab. on it then we can try and decrease the preds again. would love to have some sight back so i can drive again. even if only for short trips. how are you doing?

[elephant]

Doing good. We may be increasing my cellcept to 2500 mg if my sinus stuff does not settle down. We are trying more Bactrim right now to see if it cools things down. It's a waiting game. :)

[Rose Cozzette]

Doing good. We may be increasing my cellcept to 2500 mg if my sinus stuff does not settle down. We are trying more Bactrim right now to see if it cools things down. It's a waiting game. :)hope they try the bactrim for up to 20 days as that seems to be key, do it long enough to make a difference. it did for me. our weather here is so varied that my sinuses act accordingly. back to hot and dry.

[elephant]

Thanks for the input Rose. Been feeling a little stuffy and ears getting clogged and I feel like I am talking inside my head. It is so annoying. Right now I am doing 1 DS Bactrim every other day. So if that doesn't work in two weeks will go to every day.

[marta]

Thanks for the input Rose. Been feeling a little stuffy and ears getting clogged and I feel like I am talking inside my head. It is so annoying. Right now I am doing 1 DS Bactrim every other day. So if that doesn't work in two weeks will go to every day.
You and me both. I hate that feeling of talking in my head. I'm allergic to Bactrim too, so not getting that good stuff.
I'm not sure if I'm feeling the way I am from weaning the pred or the crazy smoke in the air. There are about 300 forest fires in the province next to us and the air is saturated with smoke - you can't even see the mountains. Today I had a crazy experience in that within 20 minutes of being outside I went from slight pain in my chest (ribs, and all the good stuff underneath I rekkon) to severe pain and not able to inhale as everything was so tight and painfull. I honestly thought I was having a heart attack.... I wonder if this disease has made me into a hypochondriac :sad:

Once I got into my swealtering house and layed down for a few minutes, the pain in my chest subsided. I've gone out a few times since and within a couple of minutes I feel the start of the pain in my ribs again - so I'm hoping it's all from the smoke. I'm still talking in my head though, and headache, and sore throat, and stuffy - I'm really really hoping it's the smoke, but I will hold off on taking it down 5mg tomorrow (which is my day to go to 20mg) and hold it for another wee little bit. We're also going on holidays so I'd hate to get sick while away from home.

Oh well, keep on truckin' with uncertainty :w00t:

[elephant]

Marta, have a nice Holiday. Marta, my rheumy was concerned about my sinus symptoms...so just keep an eye out. I bet all that smoke caused your lung pain. Especially with our disease we are so sensitive to any environmental pollution.

[JanW]

Wouldn't hurt to talk to your doc either, Marta. Any of us would hate to get sick while on vacation, but if you're on a certain weaning protocol don't try to 'go it alone' and alter that protocol because you feel as though reducing the pred may be adding symptoms. Discuss with your doc before taking matters into your own hands---remaining at higher doses of pred as well as tapering come with their own risks/rewards.

[Lightwarrior]

Wouldn't hurt to talk to your doc either, Marta. Any of us would hate to get sick while on vacation, but if you're on a certain weaning protocol don't try to 'go it alone' and alter that protocol because you feel as though reducing the pred may be adding symptoms. Discuss with your doc before taking matters into your own hands---remaining at higher doses of pred as well as tapering come with their own risks/rewards.

I agree with you and elephant that it is most likely the smoke, however Jan has given you solid advice...don't go it alone, contact your doctor before going up or down or holding off. Stay safe talented one. :cool:

[Sangye]

Ditto. Might not be a good time to lower the pred dose, all things considered. I hope you feel better! I run a HEPA air purifier non-stop in my home. Makes a big difference. We've had a lot of red-alert days due to air pollution this summer. When I was doing errands I'd have a hard time breathing but after being at home for an hour I could breathe well again.

[marta]

Thanks Jan and Sangye,

I'm not on a specific weaning protocol per se. I've been told to take off 5mg ever 1 to 2 weeks based on how I feel, which has feels like too much power in the hands of a neophyte, but that's how it is. So I've been going every week, but I think this week I might hold off for two weeks. Once I get to 20mg which is supposed to be today, I'm to take off 2.5mg every 2 to 4 weeks based on how I feel, so there is lots of padding on either side of the time line for each 'lowering'. I think that taking that into account I wouldn't hurt the situation too much if I prolong 25mg a bit longer, just to see how things progress in the next week.

I've also just called my folks (who are coming with us on holidays - isn't that cool) to bring their hepafilter with them, thanks Sangye for the idea, as where we are going is in the middle of where all the fires are... I know, I know, it's crazy but we've paid $4000 bucks that are non refundable, and I can always stay inside when/if the smoke is bad. I can almost hear you guys rolling your eyes right now.:blushing:

[JanW]

Take care of yourself, marta -- I find myself much more sensitive to the external environment than I was prior to WG.

I've not been on pred and had to taper, but it just seems odd to me that they wouldn't want to examine you clinically and/or have blood/urine draws to ascertain your level of inflammation on a pretty regular basis (especially when first diagnosed), before making med changes. The standard in WG is generally get the inflammation down quickly (pred), keep the inflammation down long-term (immunosuppressant) all the while monitoring your blood/urine for any signs of trouble. Generally after a six month or longer time period on the immuno without pred (although I know that this isn't true of a lot of people, and seems based on what people have said here that the six months and off pred protocol is a newer one), a gradual strategic weaning off of immuno to see if drug free remission can be maintained (or, if you start on ctx or rtx, a step down to a lighter immuno and then step off).

How you feel is one piece of the puzzle, but not the only one that docs like to rely on. I was having blood/urine every other week for the first few months after dx, and was only on 15 mg of mtx.

[Sangye]

Jan, it's pretty standard to taper pred like that. Inflammatory markers aren't likely to jump with those small changes, and not within 2 weeks.

Marta, oy.... I understand about the non-refundable money and all. But your health is also non-refundable! I hope this doesn't wind up costing you more. Make sure the hepa filter has new filters before you go.

[me2]

Marta,
There is a desenitization protocol for bactrim if it is something you wanted to take. I was allergic to it too and after the program I have been able to take it for years. It works for 80% of people, not too bad of odds. It is just a measured program of taking very small doses and working your way up to treatment dose.

[marta]

Jan, it's pretty standard to taper pred like that. Inflammatory markers aren't likely to jump with those small changes, and not within 2 weeks.

Marta, oy.... I understand about the non-refundable money and all. But your health is also non-refundable! I hope this doesn't wind up costing you more. Make sure the hepa filter has new filters before you go.

Oy is right. I did get bloodwork done yesterday so if there's anything up, I'm sure I'll hear about it on that front. There's not too many places I can hide from the smoke right now. Our entire province (Alberta) is blanketed by smoke and there is a provincial air advisory for the entire (first one this year), and I believe most of BC is smoky as well which is where we are going. Mom and dad just went out and bought two hepafilters for our trip so if I have to stay inside and play on my computer, so be it... a quicker start on our book project.

Live and learn. Live being the operative word... oh I guess learn is too.

Thanks for the advice ladies. I told my rheumy last week that you all have been my lifeline, and I have no idea where I would be without this group. :hug1:

[Rose Cozzette]

You and me both. I hate that feeling of talking in my head. I'm allergic to Bactrim too, so not getting that good stuff.
I'm not sure if I'm feeling the way I am from weaning the pred or the crazy smoke in the air. There are about 300 forest fires in the province next to us and the air is saturated with smoke - you can't even see the mountains. Today I had a crazy experience in that within 20 minutes of being outside I went from slight pain in my chest (ribs, and all the good stuff underneath I rekkon) to severe pain and not able to inhale as everything was so tight and painfull. I honestly thought I was having a heart attack.... I wonder if this disease has made me into a hypochondriac :sad:

Once I got into my swealtering house and layed down for a few minutes, the pain in my chest subsided. I've gone out a few times since and within a couple of minutes I feel the start of the pain in my ribs again - so I'm hoping it's all from the smoke. I'm still talking in my head though, and headache, and sore throat, and stuffy - I'm really really hoping it's the smoke, but I will hold off on taking it down 5mg tomorrow (which is my day to go to 20mg) and hold it for another wee little bit. We're also going on holidays so I'd hate to get sick while away from home.

Oh well, keep on truckin' with uncertainty :w00t: boy, the sinuses remain a biggie. i had to start using the humidifier again at night as would wake up with headache, used it last night and ok today. i too always feel my head and ears are full, even tho audiogram says i dont have hearing loss i still cant hear good. i read these studies where giving anibiotic in larger dose for 10 days and then decrease for 10 more is best way, it worked for me. hope the fires clear up, luckily we didnt have any this year, we did last year and it ws hard.

[elephant]

Right now I am taking one Bactrim DS every other day. PLUs my other wonderful meds.:rolleyes1:

[Rose Cozzette]

Right now I am taking one Bactrim DS every other day. PLUs my other wonderful meds.:rolleyes1: had a few bad days. the cellcept seems to build up and then cause a reaction. so was in the bathroom and couldnt sleep so very tired. ugh... are you having any of these symptoms?

[Jack]

The diarrhea seems to come and go. I've had a really bad day with it today in spite of taking Imodium, but it has not been at all bad for the past 2 weeks. I'm hoping that it will be OK tomorrow because I have to go out for the day.

[Sangye]

Rose, when I was on Cellcept I had to start and stop it several times for different reasons. Each time the side effects were worse for the first month and then they seemed to level off. The diarrhea persisted but didn't go on all day-- just hit right after a meal. And like Jack said, sometimes it was better than others. Hang in there.

[elephant]

I never had diarrhea on cellcept and lets hope it doesn't happen. I would keep a diary of when you take cellcept and how many times you go. But I do go to the bathroom (pee)alot, been doing that for 20 plus years.
Jack where is that smiley that whistles?

[Jack]

I stole it, but feel free to steal it from me. Just right click over it and save it to your own computer and then insert it in your post as an image.

399

[elephant]

Thanks Jack.

[JanW]

I know I've said it before here but Dr. Merkel at the conference said that Cellcept causes intractable diarrhea in about 10 percent of WG patients; in which case a switch to Imuran could be in order. Studies have not shown that it is more effective than imuran in terms of disease treatment. It is however being pushed a lot recently by its maker for use in autoimmune diseases -- my rheumy mentioned this at my second visit and said what Merkel says, "I'm not convinced its any better than anything we currently use."

Good luck Rose!

[elephant]

That is why I was given Imuran first, they really wanted me on that. Even after my drug reaction my Local rhuemy wanted me back on it. I was like " No way." I don't think she believed it was a drug reaction. She was not there at the hospital when this all happened. I still think she is a good doctor.

[Sangye]

Jan, that means 90% of Cellcept users don't get diarrhea.

[JanW]

Of course, but it also means that if you have regular diarrhea on the drug you are far from an outlier. Only the patient can decide if this side effect is acceptable vs. another drug that is equally effective and that they might be able to take that doesn't have this side effect. Docs should be telling people that this is a possible side effect of the drug (and I assume they are).

[DEE]

i was told yesterday about the diarrheoa fact when taking cellcept .but i already get it taking warfarin so we hasve to play wait and see game as usual :ohmy: think i would prefer that than any more damage frpm cxt and preds DEEx

[Sangye]

Jan, yes you are absolutely right. I missed the "intractable" part of the statement!

[Rose Cozzette]

i was told yesterday about the diarrheoa fact when taking cellcept .but i already get it taking warfarin so we hasve to play wait and see game as usual :ohmy: think i would prefer that than any more damage frpm cxt and preds DEEx i dont know, having a bathroom day again. i cant take any of the other meds due to kidney and liver problems so it is a waiting game. am going to stay at 1000 mgs of cellcept tho as i dont think i will be able to tolerate more. and no the docs did not say abt diarrhea being a big problem even tho i tell them i have stomach distress with most meds. sigh...

[Jack]

Do you take anything for the diarrhea? I used to take Imodium, but it did not help much unless taken by the handful. I now take Tramadol for the pain in my legs and feet and the side effect it has of constipation seems to help a lot.

[Rose Cozzette]

?Rose, do you see a ENT that specializes in WG? Is he at the Cleveland Clinic? Did Dr Langford recommend him no, my ent is one i have seen in the past and is not up on weggies. i do need to find one but may have to go to denver area for one. i have found that my voice is bad cause i dont talk much, am by myself too much i guess but over the weekend i was with people and talked more and my voice got stronger. so guess i will have to talk out loud to myslef and the dog now. lol

[Rose Cozzette]

Do you take anything for the diarrhea? I used to take Imodium, but it did not help much unless taken by the handful. I now take Tramadol for the pain in my legs and feet and the side effect it has of constipation seems to help a lot. i have just taken imodium and it seems to not work as well anymore. what is bad is the quickness of the need to go so i may or may not make it in time. sigh...

[Jack]

I can sympathise. :(
The problems I have had recently with mobility have caused difficulties in that area.

[drz]

Elephant, I started a thread awhile back called "Thoughts on Bisphosphonates." That would sum up how I feel about them! Jack has no option at this point and has to take them for his safety.

I think your rheumy is showing good judgment by trying to get you off pred. Any reduction is good, and any amount of time off of it is very good. You can definitely be in remission without pred! I was off it for 2.5 yrs. I wasn't in remission, but I didn't have seriously active Wegs, either. Just "smoldering" Wegs. If we had increased my Cellcept, I think I would have been great. But many people maintain remission just fine without pred.

Besides, I want some company in the "Dropping 1 mg a Month" club. :D

What are symptoms of smoldering Wegener's. I might be getting to that stage but don't recognize it.

[Sangye]

Rose, try drinking 2 oz of aloe vera gel mixed in a glass of water, morning and night. Aloe is very soothing to the gut. That helped control the diarrhea when I was on Cellcept. Made a big difference.

I'm now allergic to aloe, so I don't know what I'd do if I ever needed to go back on Cellcept!

[Sangye]

What are symptoms of smoldering Wegener's. I might be getting to that stage but don't recognize it.
No easy answer to that! Basically any symptom you had prior to diagnosis can be smoldering Wegs. Any new symptom can be, as well. For that reason, you need to inform your doc when you notice anything off.

[Rose Cozzette]

Rose, try drinking 2 oz of aloe vera gel mixed in a glass of water, morning and night. Aloe is very soothing to the gut. That helped control the diarrhea when I was on Cellcept. Made a big difference.

I'm now allergic to aloe, so I don't know what I'd do if I ever needed to go back on Cellcept! i have used aloe gel in the past for barretts esoph. so cant hurt to try now. i forget the things that worked in the past for stomach probs. cant wait to decrease the preds again. think i will not try to increase the cellcept since i am doing ok weggie wise on this dose. sinuses are a little wacky right now, due to change in seasons. had increased the prilosec to help the stomach from all the drainage and now tapering back so tho it helps the gut it also causes side effects, esp w/blood thinner. still cant see very well so cant drive yet but am working hard to improve using visulaizing and conscious thought. tired today.

[Fran]

Happy Birthday Rose !

[Rose Cozzette]

Happy Birthday Rose ! thank you! turning 64, oy...

[Sangye]

Happy Birthday Rose! I hope you have a good one. At least you get one day a year when you shouldn't feel guilty about eating cake! :flapper::w00t:

[Rose Cozzette]

Happy Birthday Rose! I hope you have a good one. At least you get one day a year when you shouldn't feel guilty about eating cake! :flapper::w00t: I know and i have been having small pcs from it since we got one to share with the fam llast weekend. thank you! going for one night to breckenridge, used to go there often and cross countgry ski or hike, unfortunatley not any more of that and i do miss it. hope to get back to short walks now that its getting cooler. oh the compromises we have to make...

[Fran]

Well Rose, now you've told your age I better own up that I am 70 ( oy oy lol )http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[DEE]

Happy Birthday Rose muffins all the way shhhhhhhhhh dont tell Elephant :love: DEEx

407

[elephant]

Ha! I see it. Happy Birthday Rose! Can I have a piece of cake that Dee brought!:thumbsup:

[jola57]

Happy birthday rose:hug3:

[marta]

Happy Birthday fellow Virgo Weggie. Many many more to come.

[Rose Cozzette]

Well Rose, now you've told your age I better own up that I am 70 ( oy oy lol )http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)i used to laugh when people would say you are only as old as you feel, not so funny now. sigh...of course my mind still thinks i am oh so young! lol

[Rose Cozzette]

Happy Birthday fellow Virgo Weggie. Many many more to come.
and a very Happy Birthday to you! what is your day? I have so many family and friends that are virgo its not funny... of course we are all just wonderful beings! :}

[Rose Cozzette]

Happy birthday rose:hug3:Thank you! It was a good day...

[Rose Cozzette]

Ha! I see it. Happy Birthday Rose! Can I have a piece of cake that Dee brought!:thumbsup:
I wiil share with all of you, and in virtual space you can have whatever flavor and size you want!:flapper:

[Rose Cozzette]

Happy birthday rose:hug3: Thank you! I do enjoy celebrating birthdays... anyone's will do. lol

[Rose Cozzette]

Happy Birthday Rose muffins all the way shhhhhhhhhh dont tell Elephant :love: DEEx

407
I enjoyed the muffins! Thank you, now if i could just have a nice drink...

[marta]

and a very Happy Birthday to you! what is your day? I have so many family and friends that are virgo its not funny... of course we are all just wonderful beings! :}
September 2. My very first Happy Birthday wish was from this site - Andrew is so on it. Virgos rock, we get along splendidly with each other as well. I have lots of Virgos in my family too, we usually have a big Virgo Party every year, and missed it this year due to scheduling conflicts.

[maggiedee]

Don't know if this will help anyone..Recently diagnosed with Wegeners and at about the same time decided to change my husbands and my diet plan. Began cooking and eating using the Mediterranean Diet. Am not doing it to lose weight but just a healthier style of eating. It appears to be alleviating a lot of the prednisone side effects and have just added cellcept to the medication pot. So far only an occasional bit of nausea. This diet uses lots of fresh veggys and fruits and olive oil and onions and garlic...all the good stuff and so easy to prepare. Have been on the prednisone since the first part of July and am now finally down to 30mg's a day. Poor prednisone doesn't stand a chance when it hits the olive oil in my stomach...Sits there with a confused look on its little pill face and gives up.

[me2]

I love to hear when someone is doing well and finding ways to eat as healthy as they can. Thanks Maggidee. I had to up my prednisone a few days ago and I am bummed about that. So, I need encouragement on the positive ways to deal with it. I like olive oil, I use it on my pop corn instead of butter, also nutritional yeast, tamari sauce and turmeric. So maybe I should sprinkle prednisone on my pop corn. Predni-corn

[elephant]

Hi maggiedee, glad you are doing good. The mediterranean diet is healthy. How much cellcept do you take?

[pberggren1]

I would love to hear more about this Mediterranean diet Maggiedee.

[Sangye]

Hi Maggiedee, welcome to the group! It's great that you're eating a healthy diet. My family is Greek and whenever I don't feel well I'm naturally drawn to eat some Greek food. Always makes me feel stronger.

[Rose Cozzette]

September 2. My very first Happy Birthday wish was from this site - Andrew is so on it. Virgos rock, we get along splendidly with each other as well. I have lots of Virgos in my family too, we usually have a big Virgo Party every year, and missed it this year due to scheduling conflicts. well Happy Birthday! a good friend is also on the 2nd. my energy level goes up now, love the fall. i should start a virgo party too, and invite my sagitarian daughter as she says she's surrounded by virgos. lol virgos do rock!

[Rose Cozzette]

Don't know if this will help anyone..Recently diagnosed with Wegeners and at about the same time decided to change my husbands and my diet plan. Began cooking and eating using the Mediterranean Diet. Am not doing it to lose weight but just a healthier style of eating. It appears to be alleviating a lot of the prednisone side effects and have just added cellcept to the medication pot. So far only an occasional bit of nausea. This diet uses lots of fresh veggys and fruits and olive oil and onions and garlic...all the good stuff and so easy to prepare. Have been on the prednisone since the first part of July and am now finally down to 30mg's a day. Poor prednisone doesn't stand a chance when it hits the olive oil in my stomach...Sits there with a confused look on its little pill face and gives up. welcome to our weggie world! and you cant go wrong with that diet, is just plain healthy. my doc told me to go on statins to reduce cholecterol etc but i didnt, as i am a zombie on them, and my scores went down anyway! waiting to hear what he has to say. and you can look forward to decreasing the preds, am on cellcept and seems to be settling down finally. will try more olive oil. :}

[Col 23]

Thanks maggiedee, the diet sounds like something I would like. Im now down to 11 mg of Pred, start 10mg tomorrow, lost 3 kilos but seem to naturally be going for the healthy stuff now not so many cravings.
Still having minor flares, been up and down with lots of things. Havent been on the site for ages as had lots of staying visitors and been in hospital 2 Fridays in a row due to weg flare and dental issues. All sorted out now.cheers Col23

[jola57]

I have broken the allmighty 90KG mark for the third time, must be lucky right? Now onto 89 , 88... and so on. I have upped back to 5mg for couple of days, just getting hip pain and just feeling out of sorts.

[elephant]

Jola is this hip pain new?

[Sangye]

And what do you mean by feeling out of sorts? Could be adrenal insufficiency.

[maggiedee]

I do hope you give it a try. It is just the best. The prednisone has messed up my taste buds to a certain degree but the flavor combinations of this diet really hit the spot. It is so easy to prepare most of the dishes and also quick. I do 99.9% of the cooking in this home even when I am feeling wretched so this diet makes it a bit easier on me. I can't say enough good things about the side benefits to this way of eating.

[jola57]

No, the hip pain is like at the beginning of wegs. Being out of sorts for me means these little pains in fingers, hips, left foot. I also have to talk to my GP about these cold bursts in my legs and head. I think that my little vessels are breaking, which would not be a good thing, especially in my head. It feels like a cold burst and last a split of a second. When I was giving blood last month my vein didn't close properly and when i went to give urine sample it must have popped open and I felt this cold rush on my arm and blood dripping from my left arm. I always thought blood would be warm not cold. Let me tell you it was an interesting way of getting a urine sample. I didn't know which way to hold either of my hands. :blushing: Joking aside I don't have any headaches but I think that I should mention this to my doc next week.

[pberggren1]

I didn't know that Weggies could give blood. My previous Rheumy, whom I could rant about, said that Weggies blood was no good so I stopped giving blood. When I was in college I was the only one in my class that gave blood each month. All of my classmates were too grossed out by it. I said I did it for the free cookies and juice. :wink1:

[jola57]

Sorry Phil, I meant giving blood for a test. I too had to stop when I started to take Synthroid 25 years ago. Before that I was a regular blood donor. Ah how well I remember the cookies and orange juice.

[Sangye]

Phil, it's true-- Weggies blood is no good. It's great that you donated blood while you could. That generosity comes back to you!

Jolanta-- your list has me worried. How soon can you seen your Wegs doc?

[Rose Cozzette]

No, the hip pain is like at the beginning of wegs. Being out of sorts for me means these little pains in fingers, hips, left foot. I also have to talk to my GP about these cold bursts in my legs and head. I think that my little vessels are breaking, which would not be a good thing, especially in my head. It feels like a cold burst and last a split of a second. When I was giving blood last month my vein didn't close properly and when i went to give urine sample it must have popped open and I felt this cold rush on my arm and blood dripping from my left arm. I always thought blood would be warm not cold. Let me tell you it was an interesting way of getting a urine sample. I didn't know which way to hold either of my hands. :blushing: Joking aside I don't have any headaches but I think that I should mention this to my doc next week.I wpuld get hot butsts, not cold ones but they have gone away. still get sharp pokes around my body like a needle. ??? i figured they were from nerves coming back as the wegs inmproved. i also had a blood draw start going wacko after the tech didnt wait long enough for the bleeding to stop but it didnt drip out, stayed in the taped area. so i tell them now to wait. all these little things that happen are baffling. :{

[Rose Cozzette]

Phil, it's true-- Weggies blood is no good. It's great that you donated blood while you could. That generosity comes back to you!

Jolanta-- your list has me worried. How soon can you seen your Wegs doc? I had hip pain before and it comes ands goes now as the arthritis flares. am feeling more achy now as it gets cooler, but the yoga really helps to keep it down and keep me flexible. I ask all kinds of questions abt what i feel but dont often get satisfactory answers. see the kidney and rheumy docs today and will ask to decrease the preds and stay on 1000 mg of cellcept. still having side effects and now more eye problems tho those may be allergies for this time of year. oy

[elephant]

Rose your on a low dose of cellcept, are you in remission?

[Rose Cozzette]

Rose your on a low dose of cellcept, are you in remission? the kidney doc says i am in partial remission. both he and the rheumy agree that due to the side effects i can stay at this dosage for now and today started decreasing the preds by 1 mg every 2 wks down to 12 and then review my progress. my kidney function is always a concern and according to the mayo scale is at 46%. it varies and he would like to see it stay around 50%. hopefully the preds will help as it goes down. the doc said one pt. he has can only be on 250 mg of cellcept due to side effects. and some are on 3000 so it really depends on the individual. see the eye doc tomorrow as my eyes are so blurry for 4 days now. just one thing after another. oyoyoy

[jola57]

Rose, isn't wegs just full of surprises? Sangye, for now untill I see my GP, I am just taking it easy. No new burst of cold felt so all is good.

[drz]

Phil, it's true-- Weggies blood is no good. It's great that you donated blood while you could. That generosity comes back to you!

Jolanta-- your list has me worried. How soon can you seen your Wegs doc?

We can be glad other people are donating. I have a nephew that has donated plasma a couple dozen times. He was delighted to find out that i received over 120 units of plasma during my early treatment and said that really made him feel good thinking i might have got some of his plasma.

[Sangye]

That's a great way to look at it, drz. A couple weeks ago, a friend emailed me info about donating plasma. I told her "The only one who wants my blood is me!" :laugh:

[pberggren1]

That's a great way to look at it, drz. A couple weeks ago, a friend emailed me info about donating plasma. I told her "The only one who wants my blood is me!" :laugh:

I'll take a plasma TV though! :wink1:

[elephant]

Me too Phil, your too funny!

[drz]

I'll take a plasma TV though! :wink1:

Would a TV set work with your plasma? (smile)

[pberggren1]

Would a TV set work with your plasma? (smile)

Yes, I believe it would.:thumbsup:

[Rose Cozzette]

Rose, isn't wegs just full of surprises? Sangye, for now untill I see my GP, I am just taking it easy. No new burst of cold felt so all is good. well it seems my cataracts are much worse, no wonder i cant see, so get the first one removed on oct.7 and the second oct. 21. will be glad to get it over with. how are you feeling?

[elephant]

Hi Rose, just had mine done Sept 17th and I can almost see 20/20 out of my left eye. I am going to get the right cataract removed Oct 6th. Good luck Rose and let me know how it went. :flapper:

[Jack]

You will enjoy being able to see clearly again and the operation is a breeze. You'll be able to get some reading glasses for Christmas!

We're all here to support you :)

[Rose Cozzette]

Hi Rose, just had mine done Sept 17th and I can almost see 20/20 out of my left eye. I am goint to get the right cataract removed Oct 6th. Good luck Rose and let me know how it went. :flapper: Will do. Glad to hear yours is going well. I am counting on mine to do well also. :thumbsup:

[Rose Cozzette]

You will enjoy being able to see again and the operation is a breeze. We're all here to support you :) Thank you,Jack!

[jola57]

feeling good, saw my family doc but talked about the foot and forgot to mention cold bursts in head. they have not repeated.

[Rose Cozzette]

Will do. Glad to hear yours is going well. I am counting on mine to do well also. :thumbsup: Good morning, glad to hear you are doing well. decreased the preds to 13 mgs now and slept 6 hrs straight last nite for the first time in who knows how long! cont to have more strength slowly. take care... Rose

[Rose Cozzette]

feeling good, saw my family doc but talked about the foot and forgot to mention cold bursts in head. they have not repeated.oops, sent the last message to myself. lol anyway it was meant for you. glad you are doing well. decreased the preds to 13 mgs now and slept 6 straight hrs for the first time in who knows how long! take care... Rose

[elephant]

Rose glad you had a good night sleep! Congrats on going down to 13 mg of prednisone!

[Rose Cozzette]

Rose glad you had a good night sleep! Congrats on going down to 13 mg of prednisone! thanks, slept 5 1/2 hrs last nite. amazing what just 1 mg less can do. do you think that cellcept acts kind of like preds? in some ways it seems that way to me. how's it going for you now?

[elephant]

I think cellcept can cause insomia, depends on the person. I have been on cellcept since april 2009 and I think it is doing its job. How long have you been on it?

[marta]

oops, sent the last message to myself. lol anyway it was meant for you. glad you are doing well. decreased the preds to 13 mgs now and slept 6 straight hrs for the first time in who knows how long! take care... Rose

To dream the impossible dream.... (it's a good thing you guys can't hear me sing)

To dream at all....

This is music to my ears Rose. I'm going to 15mg this weekend, and then 12.5 in a couple/few weeks. Can't wait to have a good night sleep. CAN'T WAIT!

[elephant]

Marta, I use to think like that too...I use to stayed up and watch any reality TV tht was on....You will get your sleep soon!

[marta]

From your mouth to you know who's ears elephant.
Last night I went to bed early - 1:30 am - I've been going down about the 3am or a little later mark lately. Next week Hana starts Nursery School and I have to be up at 7am - eeeeek, I'm afraid already.

[Sangye]

Marta, a big part of why you can't sleep is that you're staying up so late. If you stay up past midnight, the Fire element kicks in and keeps you awake. You're meant to be sound asleep by then, and it should be creating REM sleep for you. Once you pass midnight, your body has lost the signal to go to sleep. To fix this, you're gonna have to go to bed by 11:00. Even if it means just laying there....

[marta]

Sangye, I knew that was coming. I know I know. It's a bad vicious circle, and when I'm in bed I get angry just laying there not being able to sleep, when I'm up I can get stuff done and feel more productive.
Next week will be the beginning of an interersting experiment. Maybe the whole circadian rhythm will get switched a bit. Who knows. I'll be forced to follow your advice whether I like it or not.

I know everything you're saying. I know that the best time for organ regeneration is sleep between 10pm and 3am - I totally overshoot that, but I can't help it. I've tryed everything you posted in the other thread about sleep - it's the one thing that really really gets me. I'm on 15mg of pred next week, and then 12.5 in a couple more....

It's so funny as I was posting the one above you, I knew that you'd be giving me heck (being part of my new extended family and all) I was sorta ready for it and definitely expecting it. :tongue1:

[Sangye]

LOL! Yeah, you've learned to brace yourself when you say something like "I'm going to bed at 3am and can't sleep." :laugh:

[marta]

Yes. Braced as braced could be. Ninja stance and all. lol.

[Sangye]

LOL-- Even Ninjas cannot elude my nagging. I'll find them. It just takes a bit longer. :flapper:

[marta]

Ninjas don't elude, we welcome it. It's good training.
That reminds me - one physical thing that Wegs hasn't taken is my ninja reflexes - Hana (my monkey) calls me 'ninja mom' when I pull out my 'catch anything, anywhere' move. ha ha he he ho ho.

[Rose Cozzette]

I think cellcept can cause insomia, depends on the person. I have been on cellcept since april 2009 and I think it is doing its job. How long have you been on it?
I have been on cellcept for 2 mos. and the sleep disturbance was pretty immediate. now with less preds i can sleep some nights, only broken 1 or 2 xs but sat. night i got 3 hrs and then was awake the rest of the time. very annoying and i get so tired then. but slept sun. night so recover more quickly now. and walkimg some w/o the cane tho still get dizzy spells at times, from the sinus stuff. so dry here and no rain in sight. amd feel am getting some memory back finally. so onward and upward. i go to bed at pretty much the same time every nite, 9:30 or so and i stay in bed even if i cant sleep. do deep breathing, progressive relaxation and Reiki on myself. this all gives me focus so to keep me from starting thinking so much. when my grandaughter is here i get less sleep and am more active but its good for me to focus on her and not me. lol do you know of anyone who has gotten a growth on the body from cellcept? I see my primary doc today and will show him, I know it can be a side effect of cellcept. maybe its my imagination but it hurts at times and seems to be a soft mass on the shin abt 3-4 in. long. anyone?

[marta]

Hi Rose, Sleep sleep sleep... that elusive old friend.

As far as the shin thing, I don't know if this is it, but I was warned that I might get growths on my shin that match the growth you get on the back of your neck from high dose prednisone. It's similar to what people with Cushing's Disease get - the hump and the shins. I've definitely noticed the hump but nothing on the shins yet. I'm expecting it though as pretty much everything I was warned about as far as side effects of the meds go has come to fruition. Apparently it's a fat pad that is slightly different in composition and texture than regular fat - my doc said it's more sinue-ey (is that a word?). So hopefully that's all it is and it doesn't give you an extra reason for concern, as if we don't have enough stuff to stress us out behind the curtains of our eyes.

[Sangye]

Rose, you may have erythema nodosum on your shin. They are painful lumps below the skin, often on the shins. Nothing they can about them. I've had a bunch for years. They don't hurt unless I touch them or bump into something.

[elephant]

I never had those, but had every other symptom from pred..fat pads everywhere.

[pberggren1]

Hi Rose, Sleep sleep sleep... that elusive old friend.

As far as the shin thing, I don't know if this is it, but I was warned that I might get growths on my shin that match the growth you get on the back of your neck from high dose prednisone. It's similar to what people with Cushing's Disease get - the hump and the shins. I've definitely noticed the hump but nothing on the shins yet. I'm expecting it though as pretty much everything I was warned about as far as side effects of the meds go has come to fruition. Apparently it's a fat pad that is slightly different in composition and texture than regular fat - my doc said it's more sinue-ey (is that a word?). So hopefully that's all it is and it doesn't give you an extra reason for concern, as if we don't have enough stuff to stress us out behind the curtains of our eyes.

You've been watching too much House.:wink1:

[me2]

Phil , I am shocked at your statement. I cannot imagine watching too much House. At times it seems like I am watching a documentary
about doctors I have had. Give the show credit, when WG got mentioned on the show it was only after several other diagoneses were tried and tossed.
As a side note , I think the comment about the fat being different is interesting. I am dealing with pred weight and it seems different to me. Really, tenacious stuff. It has a sinue-ey soul if nothing else. It is not jolly or baby like in character at all.

[pberggren1]

Phil , I am shocked at your statement. I cannot imagine watching too much House. At times it seems like I am watching a documentary
about doctors I have had. Give the show credit, when WG got mentioned on the show it was only after several other diagoneses were tried and tossed.
As a side note , I think the comment about the fat being different is interesting. I am dealing with pred weight and it seems different to me. Really, tenacious stuff. It has a sinue-ey soul if nothing else. It is not jolly or baby like in character at all.

I was joking about House. It is one of my all time favourite programs.

[jola57]

Notice how even House has to look at all the symptoms and still needs time and misdiagnosis to finaly come out on top. Sounds familiar?

[me2]

I was joking too Phil. I just didn't write it very well and joking is tough sometimes in writing. I liked your joke about House. It is one of my all time favorites too. Maybe some episode he will cure WG for us.

[Elena]

ooh, in what episode did he mention WG? I think I've watched them all, but maybe it got mentioned before I had even heard about WG ..

[me2]

Hi Elena,
I don't remember the specific episode but WG was mentioned in one of their differential sessions. I just about jumped off the couch, I couldn't believe it. Lucky for the person on the board WG was ruled out and they just had some other terrible disease. If memory serves me correctly (after chemo and pred I can't be sure) someone from the vasculitis foundation wrote the producers of House to thank them for the reference about WG and inquire as to whether they were using the show to teach people about Vasculitis since a lot of the diseases that get mentioned are vasculitis. I think the answer was cryptic and non-comittal but said that some one involved in the creation of the show had family with vasculitis. Don't quote me on this. I may have some details wrong, but I'm sure I'm conveying the spirit.
The show does raise awareness right along with eyebrows.

[DEE]

I think they decided it was Lupus (sp) watch a repeat a few weeks ago

[BrianR]

Hi all. Here is my first post and all I can come up with is something about a "House" episode. "I am Brian, husband of Marta" (has a nice ring to it don't you think?). Marta taped the House WG episode the other night. Turns out the lad in the episode did not have WG but rather a free roaming toothpick in his system that wreaked havoc with every organ it punctured along its merry way. This is plain evidence as to why flossing is far superior to picking your teeth! Toothpicks are meant only for olives and onions that adorn the blessed martini.

On a more serious note, this forum is very helpful to me. I am profoundly grateful for the opportunity to get to "know" you all. Peace and strength.

[Doug]

"Brian, Husband of Marta" sounds like one of those quasi-Biblical Hollywood extravaganzas of the 1950s! It is always good to have input from the affected others of weggies. You guys put up with a lot and I, for one, can only say bless you and thank you for what you do!

[me2]

Hi Brian,
Thanks for placing the WG episode on House. Those who quote House simply too shall serve. Thanks for joining us.

[elephant]

Thanks too Brian for joining us. I am a House fan too.

[marta]

Funny that Phil started this chat as he knows I stay up at night and watch House. :wink1:
Hi Brian :love: finally made it on - mmmm, martini.
Funny too that this House talk is on today as I posted exactly about that episode on my babble-blog about it this morning. Yeah it was a Romani boy whose organs kept either shutting down or in spleen's case just plain old exploding. They were convinced it's Wegener's. Shows you what a kind and friendly disease we're all sportin'. Like Brian said, turned out to be a toothpick. I think there might be another WG episode too, so I'll keep waiting and I'll have a collection.

[pberggren1]

I have heard WG mentioned on at least 9 episodes of House and 2 episodes of ER.

[Rose Cozzette]

Rose, you may have erythema nodosum on your shin. They are painful lumps below the skin, often on the shins. Nothing they can about them. I've had a bunch for years. They don't hurt unless I touch them or bump into something. this sounds just like it. my PT said it could be fascial so might be able to work it out. who knows??

[Rose Cozzette]

Notice how even House has to look at all the symptoms and still needs time and misdiagnosis to finaly come out on top. Sounds familiar? too too funny...

[Rose Cozzette]

Hi Rose, Sleep sleep sleep... that elusive old friend.

As far as the shin thing, I don't know if this is it, but I was warned that I might get growths on my shin that match the growth you get on the back of your neck from high dose prednisone. It's similar to what people with Cushing's Disease get - the hump and the shins. I've definitely noticed the hump but nothing on the shins yet. I'm expecting it though as pretty much everything I was warned about as far as side effects of the meds go has come to fruition. Apparently it's a fat pad that is slightly different in composition and texture than regular fat - my doc said it's more sinue-ey (is that a word?). So hopefully that's all it is and it doesn't give you an extra reason for concern, as if we don't have enough stuff to stress us out behind the curtains of our eyes.it does feel fatty and i do have the small hump on my upper back. and the fat face... oy well gald to hear i am not alone in this, LOL

[Sangye]

this sounds just like it. my PT said it could be fascial so might be able to work it out. who knows??
I would be very cautious about doing myofascial work on that. Ask your Wegs doc first. If it's an inflammatory thing, fascial work will make it go crazy. One of mine became a huge, excruciating ulcer that took nearly a year to close.

[jola57]

Brian, welcome and happy to have you with us.

[misskay]

Saw my Rhumy Tuesday... we're going to try and lower the Pred to 15mg this weekend if the bloodwork looks ok. He said he'd call me Thurs or Fri and let me know. Put me on Celebrex twice a day also... and is going to ask the Pulmy to move my appt at the end of October to earlier if possible. Seems I've picked up a cold/or something... been coughing, snotty nose, headache, slight fever since Saturday. Spent the afternoon and evening sitting in a lawnchair at a hot air balloon festival, and by the end I was chilled to the bone and not feeling well. It was 75 degrees when we left the house, so wore flip flops (due to vasc sores on toes I can't wear shoes) and a T-shirt... no coat or sweater :/ He wants him to check me before it gets worse... and before he'll allow me to get flu shot. Wish me luck.

[Sangye]

Misskay, I can't believe your rheumy gave you Celebrex. It carries a very high risk of blood clots. Along with the 23% higher risk of clots due to Wegs, it's an unacceptable risk just to relieve pain. There are other alternatives. There have been many class-action lawsuits filed against the manufacturer because the risks of heart attack and stroke are so high.

Regarding the flu vaccine, it's contraindicated to receive any vaccination if you currently have any infection, including a cold.

[Jack]

I tend to agree with Sangye, supported by the fact that my own consultant will not allow me to take this type of medication.

[misskay]

wow... I'll ask him about it when he calls....

[Rose Cozzette]

I would be very cautious about doing myofascial work on that. Ask your Wegs doc first. If it's an inflammatory thing, fascial work will make it go crazy. One of mine became a huge, excruciating ulcer that took nearly a year to close.i tried a little manipulation and the lump felt better. re: celebrex i agree fully with you, my hubby ended up having a heart ablation due to increased heart rate. and i had tried it before and had side effects so had to stop.

[Rose Cozzette]

I would be very cautious about doing myofascial work on that. Ask your Wegs doc first. If it's an inflammatory thing, fascial work will make it go crazy. One of mine became a huge, excruciating ulcer that took nearly a year to close. getting my left eye done this week and can hardly wait. rough having one good and one bad eye. how are you doing? having to adjust the warfarin due to less preds. so far so good on 12 mgs.

[DEE]

Rose how much warfaryn are you taking ?

[elephant]

Rose are they putting a lens in too? My doc removed my cataracts and then put in prescription lens, I don't need glasses anymore....just reading glasses.

[Sangye]

Rose, pred and warfarin don't interact, so lowering pred shouldn't affect your warfarin dose at all.

[Rose Cozzette]

Rose how much warfaryn are you taking ?right now it's at 20 mgs a week, had to increase a little with the preds decrease.

[Rose Cozzette]

Rose are they putting a lens in too? My doc removed my cataracts and then put in prescription lens, I don't need glasses anymore....just reading glasses.
yes, i can see good w/right eye and will also w/left after thurs. is quite different as i have always had myopia since birth. and the colors are so bright now, didnt realize how much i lost with the cataracts as it was gradual. hope it will make a difference in my walking improving as i shouldnt be so wobbly, was blaming it on the sinuses and it s some, but being able to see will be wonderful.

[Rose Cozzette]

Rose, pred and warfarin don't interact, so lowering pred shouldn't affect your warfarin dose at all. hmmm, the pharmacist said preds does affect warfarin.

[elephant]

Rose, I am so glad you are doing great with your eye's!

[Rose Cozzette]

Rose, I am so glad you are doing great with your eye's! me too, at least one thing is fixed! lol

[DEE]

right now it's at 20 mgs a week, had to increase a little with the preds decrease.

ive lowered my preds and warfarin gone up to 8 -9 mg a day
the lab said that Imuran could be making the difference
gp on holiday so going to sort with wg consult on thurs pm
INR test been done weekly for now
im hoping this does not effect getting my eyes done having assessment next tuesday cant wait
glad yours are sorted DEE x

[elephant]

I hope you can have yours done Dee. How is the Imuran doing?

[DEE]

I hope you can have yours done Dee. How is the Imuran doing?
think Imuran doing ok to a point hard to tell
left side of nose crusting !!! and joint pain still a problem but dont know if that is preds tappering or the weather been colder :rolleyes1:
i have noticed that i have less energy again and have been sleeping again in an afternoon:ohmy:
at least it does not upset the tummy or effect the bathroom department !! which has got to be a bonus
will be glad when i speak to wg consult again to get some answers probably everything as should be i just dont know
will let you know after i see him tomorrow DEEx

[Sangye]

Dee, I wouldn't chalk up those symptoms to cold weather, though I understand how easy it is to do that. Nose crusting, joint pain and afternoon fatigue sounds like Wegs. How much pred are you on?

[DEE]

Dee, I wouldn't chalk up those symptoms to cold weather, though I understand how easy it is to do that. Nose crusting, joint pain and afternoon fatigue sounds like Wegs. How much pred are you on?
im on 17. / 2.5 preds until i see wg consult tomorrow

[JanW]

Correct me if I'm wrong, Sangye, but if the immunosuppressive dose is right for the patient, they shouldn't be seeing a recurrence of WG symptoms by lowering preds. If the preds are what is keeping the symptoms from 'breaking free,' it seems to me that the main engine to induce remission isn't being given at the right dose (or it's the wrong medicine).

My nasal symptoms probably disappeared within a month of full-dose mtx. It was minor crusting and bleeding, but still abnormal. I've had no problems since.

[DEE]

its because i had a bad reaction to the last immunesuppesive drug
the new drugis not been given at full strength till we see if my body can tolerate it
ive tried mxt it did not work thats when i had major flare and ended on cxt for a year
cellcept was the next not to work
i asways have problems when i go less than 20mgs of preds but i also know that i can stay on this high dose for ever
thurs dasy will get me some answers DEE x

[Jack]

It is not so simple as immuno-suppressants keep the Wegs in check and the Steroids suppress ongoing symptoms. There is a complex interaction between the two which is why Wegs can only be controlled by combination therapy. I'm not even sure that the mechanism is fully understood by the doctors which is why it took so long to discover.

[elephant]

Dee, I have to agree with Sangye. My feeling is that he will increase the Imuran and see if that works, but he should see you soon after the increase dose of Imuran to see if that is decreasing the WG symtoms. Don't down play your symtoms when you see him tomorrow. Lets us know how it went and have a good nap.

[Rose Cozzette]

ive lowered my preds and warfarin gone up to 8 -9 mg a day
the lab said that Imuran could be making the difference
gp on holiday so going to sort with wg consult on thurs pm
INR test been done weekly for now
im hoping this does not effect getting my eyes done having assessment next tuesday cant wait
glad yours are sorted DEE x it shouldnt affect your eye appt., seems only elevated blood sugar and blood pressure will keep you from having them done. did you have blood clots when you first got sick? i did twice and so the warfarin. plus a family history of clots. i am up to every 3 wks for INR being done so thats an improvement. tomorrow i get the left eye done and i am so ready!

[elephant]

I will be thinking of you Rose!

[Rose Cozzette]

It is not so simple as immuno-suppressants keep the Wegs in check and the Steroids suppress ongoing symptoms. There is a complex interaction between the two which is why Wegs can only be controlled by combination therapy. I'm not even sure that the mechanism is fully understood by the doctors which is why it took so long to discover.
I agree with you there, Jack, that it took them awhile to find how to combine meds to stop the wegs, esp from doing further damage. i told them in Cleveland that research really needs to be done to find a cause so to study us for several yrs previous to getting it. i believe the key is there but perhaps so obvious it isnt seen. just my take on it.

[Rose Cozzette]

I will be thinking of you Rose! Thank you! I am so ready...

[Rose Cozzette]

its because i had a bad reaction to the last immunesuppesive drug
the new drugis not been given at full strength till we see if my body can tolerate it
ive tried mxt it did not work thats when i had major flare and ended on cxt for a year
cellcept was the next not to work
i asways have problems when i go less than 20mgs of preds but i also know that i can stay on this high dose for ever
thurs dasy will get me some answers DEE x
boy, i can relate to you, i just dont do well with meds, my list of allergic reactions is getting longer. am so glad i can take cellcept as the 3 others caused problems. when i see the docs i tell them everything whether they want to hear it or not. sometimes i stay seated even when they get up and it keeps them in the room longer. lol

[DEE]

thanks everyone friends are taking me tomorrow .but will go into see him by myself which i like on occasasions as i think i tend to be alittle more honest when i on my own:rolleyes1:
Rose i had mulitiple blood clots back in April and have never got passed two week testing and bounce in and out of range like a yo yo:unsure:
keeping fingers crossed they will still do my eyes
will post tomorrow when i get back
thanks again guys :sleep:

[JanW]

Jack I guess if that is true then I wonder why the researchers at the conference talk about using prednisone for max six months for remission induction and then when flaring reintroducing/raising dosage of immunosuppression. It didn't seem as if they were suggesting a linkage as much as suggesting that many WG patients are in such dire straights at dx that they need immediate lowering of inflammation/relief from symptoms that cannot wait for the immunosuppressive agent to kick in. Nothing that I heard at the conference led me to believe that pred should be regularly on board even a year past initial diagnosis, assuming that the immunosuppressive were doing their job as effectively as they should be.

And of course, in cases such as mine where symptoms are not as severe, or are surgically managed, the docs and patient can afford to wait for the immunosuppression to work without giving pred, barring unforeseen circumstance.

[elephant]

I guess it depends on the circumstances..having swollen joint pain, severe headaches, deafness and such would be prudent to get the inflammation down with prednsione along with the other immunosuprressant. I know I could not wait a month or two for the medicine to kick in, so taking the prednisone was a god send to me. The first two meds( immunosupressants ) did not work, so I would of been in big trouble.

[JanW]

Don't get me wrong, I think that there is no question that virtually all docs would agree that at diagnosis, the disease must be treated with both. What I am trying to understand (and this is complicated by the fact that I'm not on pred), is, that if, as the pred is decreased, and the symptoms return why wouldn't the doc say, 'hey, maybe the immunosuppression isn't as strong as it should be' in addition to tweaking the pred dose if necessary. Maybe that is what they do for the most part, but it seems more complex that that from what I'm reading.

[Jack]

It is a while since I looked any of this up, so perhaps my memory is at fault, but I'm sure that the early, unsuccessful treatments used Immuno-suppressants alone and also Steroids alone. It was only the combination of the two that had a significant effect on mortality. Also, in the days when I was getting flares, the first course of action was to increase my Pred. Although Pred does also have an immune suppressing effect so maybe that was the reason.

[Sangye]

Correct me if I'm wrong, Sangye, but if the immunosuppressive dose is right for the patient, they shouldn't be seeing a recurrence of WG symptoms by lowering preds. If the preds are what is keeping the symptoms from 'breaking free,' it seems to me that the main engine to induce remission isn't being given at the right dose (or it's the wrong medicine).

My nasal symptoms probably disappeared within a month of full-dose mtx. It was minor crusting and bleeding, but still abnormal. I've had no problems since.
Yes, that's my understanding of it. Your response to mtx is a great indication that they are using the perfect drug for you.

[Sangye]

At the higher doses, the pred is anti-inflammatory in addition to immunosuppressive. So it acts very much like the regular immunosuppressant, except it works immediately, while the immunosuppressant usually takes several weeks to kick in. It's a powerful anti-inflammatory--nothing else like it-- and just taking down the inflammation quiets the Wegs down considerably. However, that isn't a lasting calm. That's why they use a strong immunosuppressant in addition.

If Wegs symptoms return once the pred is lowered, it means the main immunosuppressant is not working properly-- wrong drug or wrong dose.

[Col 23]

Hello
I am finally down to 9 mg of Pred, been suffering a bit once I got to 10mg of Pred, but painkillers and anti inflammatory drugs got me through. However still had no energy, constant aches and major major fatigue. Went to Rheumy who advised that all my bloods are now within the normal range and it appears I am in remission Wegs. Methotrexate was lowered to 20mg from 25 and in two weeks I go down to 8 mg of Pred. However I advised that I was still not right and my husband who came with me reiterated this given I could hardly walk and had immense pain in the feet and lower legs. I also had lumps all over the top part of the legs. After a full examination he declared that I had Fibromyalgia, and I have to have a check for diabetes and also for sleep apnea. He gave me tablets for the Fibromyalgia and advised that I should feel a lot better on these. I have had to cancel so many outings and appointments due to fatigue and being totally wiped out lately that I have no declared myself a SPONTANEOUS WOMAN!!! The bitter/sweet of it all.
Col 23

[Jack]

I bet you have not got Fibromyalgia. ;)

[elephant]

Your Rheumy should go by symptoms, not blood work. Sounds like WG is active, need to see another Rhuemy, is that possible?

[Col 23]

This is interesting, my usual Rheumy was on holidays. They all say they can only go on the bloods to determine where WG is.
Col 23

[Jack]

The trouble is that there are no reliable blood tests for Wegener's activity, just indicators that something might be happening (or not). This is the main reason that Wegener's is so difficult to diagnose and has to be decided on the basis of probability unless confirmed using biopsy. The observation of symptoms is probably more important than blood test results since these can give both false -ve and +ve. My own blood test results are all over the place, but I have to stop new doctors from treating me because they have been this way for many years and I generally feel quite well.

[Col 23]

Thanks Jack and Elephant for your replies , I also forgot that he wanted a scan of the lumps and Im awaiting an appointment time. I was surprised by the Fibromyalgia and the rest of it.
Back to one day at a time and a barriage of tests.
cheers Colleen

[JanW]

I agree with Jack about the fibro. Sometimes, unfortunately, docs use this as a catch all when they can't figure out what's going on.

Major fatigue is a major WG symptom and typically the first one my rheumy asks about in a visit (after joint pain, another telltale sign for me). He's not even really discussing my blood results with me at this point (been normal for months) except to reassure me that liver enzymes remain within normal levels.

Any good WG specialist will tell you that if a weggie is feeling ill the first thing you think of is wegs, not an add-on disease.

Sorry you are going through this, Col.

[JanW]

And Sangye, thanks for clarifying this. So many times I see people on this boards start to lower preds and then break out with weggies (not pred lowering) symptoms, and I always think that their docs have not gotten the main immunosuppressant right. I do understand that individual cases can be difficult to treat but it almost feels as though there is an 'over reliance' on pred in some quarters -- that is, if I can't get the imuran dose quite right, at least I'll be able to keep this patient comfortable with a higher dose of pred -- something the experts are saying we should be really wary of simply because of pred's long-term effects (which you know as well as any of us). It is far from a benign drug.

[misskay]

I lowered to 10mg Pred on Tuesday... having quite a bit of lower back pain, along with knees and hips. Ugh.... hopefully it is on temporary discomfort and will ease up soon. Going to give it a few days to straighten out on its own before I call the doc and whine... also getting blood when I blow my nose again. So maybe we lowered too quickly or too soon?

[elephant]

Misskay, just make sure the joint pain subsides in a few days. Your nose could be dry too. Are you having headaches or sinus pain ( cheeks, eyes, teeth)?

[Col 23]

I had the same at 10mg, blood from the nose and coughing up a some in sputum. It went on for about 4-5 days but went away and havent had that since, I think its all part of getting off the Pred. Rheumy did say to suffer it through and gave pain killers and anti infammatory drugs that help a bit. She did say if symptoms didnt subside after a week to come in.
cheers
Col 23

[me2]

Good discussion here.WG puts doctors in the very uncomfortable position of having to actually listen to their patients. I mean this in both the positive and negative sense. In the negative sense it means they have to set their egos aside and trust and respect the person sitting in front of them that has not been to medical school . In the positive sense it is good and proper to WANT objective information to go by and to seek it out to the utmost. I feel sympathy for doctors who have other much more straightforward conditions to treat people for and how they must groan inwardly when the WG patient walks through the door. It means they can't totally rely on science. Heck I wish we could , but wishing don't make it so. My own blood work basically sits flat even when I am close to death. Fortunately I have a doc that understands that there is very weak correlation between my blood work and how I am doing.
I have worked my way through the big guns of treatment in recent years and have been stuck on higher doses of pred. By that I mean anything higher than ten. Ten seems to be the threshold of trouble for me that I cannot seem to get below without trouble. I cannot take daily CTX so I am getting infusions of 500mg of CTX once every two weeks. Anyone know of a more aggressive attack than that? I am showing some improvement but the imrovement curve seems to be flattening out a bit too soon.
You all get better so you can just come here and tell jokes or stories or something to keep me entertained ok? I think it was Socrates who said that the primary role of the physician was to keep the patient entertained until he got better.

[Sangye]

Col, that is exactly how I was for 2 years while the Wegs was active but not enough to be obvious to anyone but me. My labs (inflammation) looked okay the whole time. It wasn't until my lungs began to hemorrhage last summer that my doc knew it was Wegs. Please don't accept the idiotic diagnosis of FM or agree to living on painkillers, etc.... If the Wegs fire is smoldering, it's doing damage. I know how frustrating it is. Even Dr Seo discounted my concerns for months until my lungs started bleeding. I knew the Wegs was active for those 2 years and I knew that it was flaring even more, a full 4 months before my lungs made it obvious.

[me2]

Wow, Sangye. What we WG's have to go through is just unbelievable. Right now I feel like my treatment is not adequate but with everything I know I don't know what to do. This illness continues to challenge my mind and my heart to the utmost. I can see that it is the same for so many others here.

[Sangye]

Good discussion here.WG puts doctors in the very uncomfortable position of having to actually listen to their patients. I mean this in both the positive and negative sense. In the negative sense it means they have to set their egos aside and trust and respect the person sitting in front of them that has not been to medical school . In the positive sense it is good and proper to WANT objective information to go by and to seek it out to the utmost. I feel sympathy for doctors who have other much more straightforward conditions to treat people for and how they must groan inwardly when the WG patient walks through the door. It means they can't totally rely on science. Heck I wish we could , but wishing don't make it so. My own blood work basically sits flat even when I am close to death. Fortunately I have a doc that understands that there is very weak correlation between my blood work and how I am doing.
I have worked my way through the big guns of treatment in recent years and have been stuck on higher doses of pred. By that I mean anything higher than ten. Ten seems to be the threshold of trouble for me that I cannot seem to get below without trouble. I cannot take daily CTX so I am getting infusions of 500mg of CTX once every two weeks. Anyone know of a more aggressive attack than that? I am showing some improvement but the imrovement curve seems to be flattening out a bit too soon.
You all get better so you can just come here and tell jokes or stories or something to keep me entertained ok? I think it was Socrates who said that the primary role of the physician was to keep the patient entertained until he got better.
That is such a great post, Kirk. My chiropractor made a crack about the Wegs docs the other day, like how bored they must get with only a few drugs to treat us. I couldn't contain my laughter. Ain't nothing boring about Wegs. I think he was surprised at how ferociously I defended the Wegs docs after my initial laughter. I haven't known him that long. He didn't see me pre-diagnosis like my Arizona chiro did, so he doesn't have a very accurate picture of how deadly Wegs is.

Love the quote by Socrates. That's how my office was--lots of laughter all the time. Many of my patients said they'd fake symptoms just to come for a good laugh. I'd say, "Am I treating your backbone or your funny bone today?" LOL

[Sangye]

Wow, Sangye. What we WG's have to go through is just unbelievable. Right now I feel like my treatment is not adequate but with everything I know I don't know what to do. This illness continues to challenge my mind and my heart to the utmost. I can see that it is the same for so many others here.
Hang in there, Kirk. I forget if you have a VF doc on your case?

[me2]

Sangye, first things first, thanks for the good belly laugh. I don't get many. How much do I owe you for a funny bone adjustment?
I don't have a VF doc involved. I've asked my guy several times but each time we come up with treatment that makes sense. I have never ordered him to do it. Maybe its time to break the news to him gently. "I'm sorry doc but I think we should see other people. Its not you its me"
Well, not that exactly but its the same kind of conversation. I've suggested Dr Langford - any other suggestions here for my next visit?

[Sangye]

LOL I think that's perfect. It's not you, it's me....

Any of the VF docs are great. Are you unable to travel to a center? I know you've explained all this before.... :blushing:

[Col 23]

Hi Sangye
Yes I feel very frustrated and confused, I know Im not right and I feel overall the same as I did before diagnoses. Im having total write off days where I just cant get up. Im eating too much and sleeping way too much. I feel like Im not being heard but dont feel I can do anything about it. I dont think anyone has the knowledge to treat this here after reading the threads. I might get in touch with the VF and see if I can get any support.
I suppose everyone is different with WGs and that makes it even harder.
cheers Col 23

[me2]

Hey Col 23, lets both get in touch with the VF. It certainly can't make us more tired or drive us to eat more right? You are right that everyone is different with WG. Very wildly and insanely different - a big part of the problem for everyone concerned. I have thougt many times "How in the bleep is my doctor supposed to figure this out when I can't and I'm the one that has it." Well, we keep trying. You keep trying.

Sangye, I live near Seattle so any trip to a V center would be pretty much a one off thing. I can't afford to travel that far too often. So I think I'm stuck with the consult idea. Not that that is a bad option. My doc is a good guy. I think if I insist he would make an honest follow through. It is frustrating that I would get the conversation second hand though. I'm informed enough to participate but I guess it doesn't work that way.

[elephant]

Hi Col and Me2, I was at this point soon ( confused and sick and tired) after my diagnosis. The eye opener was this forum, getting a WG specialist. I love my Rheumy, but she has very little experience in Wg and will admit it. You will feel much better if you can have your doctor consult a doctor from the VF or if you can go see a WG specialist. I see Dr Carol Langford at the Cleveland Clinic she is very good. Take baby steps, you guys can do this. I know you don't want to hurt your doctors feelings or step on any toes, but you need to. Seeing or consulting with someone who knows WG inside and out will give you guys some relief...no more confusion...

[JanW]

The closest center to you folks in the west is University of Utah (just opened) and Cedars-Sinai in LA (not opened yet -- I think -- but soon). Over 100 docs came down to the VF symposium in Long Beach and I bet some of them were from the West Coast. Even getting in touch with one of those people -- someone who cares enough about wegs to actively learn -- is better than what a lot of folks have.

I'm just going to throw this out there, and I really don't want anyone to take it the wrong way, but...the specialists have all lost patients to this disease. They KNOW it's not just live with joint pain and bloody noses and here let me up your dose of pred again. When I had my rash that I describes to you guys last week my rheumy made me come in the next day and after examining me left the room and made a call and came back with an appointment for me with the derm within 24 hours. When I called Dr. Lebovics for an initial consult after the rheumy came back with the suspicion of wegs, I was seen within 24 hours. If I called him and said my head felt funny, I can imagine them saying come in immediately.

So what I mean to say is that these guys are incredibly humbled by the disease process that they have seen. They know that they don't know it all, and they don't try to pretend as though that have the magic bullet. And they do understand how truly life-threatening this disease is. I'm a very compliant, very educated patient, and the last thing all my docs always say is, "If ANYTHING changes between our visits (which are only six weeks apart), you are to call the office immediately."

[Sangye]

Very well put, Jan. :smile1:

[Col 23]

Thanks Jan and Sangye, Me 2 and Elephant.
Something is not right and the more I think about it I think the Rheumys have puffed up confidence and no knowledge but what they have learnt off the internet with Wegs. Okay they understand Vaculitis but this one is tricky. Come Monday I am definitely getting in touch with VF and see if I can get some help. Let me know how you get on Me2. Thanks for all your input, Im so damned frustrated, confused and just a bit worried. If I have to fly east to get some sense I will.
Cheers Col 23

[me2]

Thanks Col23. I am going to insist on a consult with VF myself thanks to the discussion here. If the people there are as stumped as I feel right now then at least I know its tried the best. I wish you the best Col23. I look forward to sharing in our good results here.

Jan, I really liked your pep talk. As Sangye said, well put. I am a compliant patient also but without a pro-active doctor that just becomes neglect.

[Sangye]

Hang in there, Col. So glad you're making that call.

[elephant]

Me too, it will make a world of difference.

[JanW]

Col, actually, and unfortunately, they have probably never seen much actual vasculitis. When it comes to vasculitis, WG is definitely king and if they haven't seen us, they certainly haven't seen HSP, or Takayasu's or temporal arthritis, know what I mean?

[Rose Cozzette]

thanks everyone friends are taking me tomorrow .but will go into see him by myself which i like on occasasions as i think i tend to be alittle more honest when i on my own:rolleyes1:
Rose i had mulitiple blood clots back in April and have never got passed two week testing and bounce in and out of range like a yo yo:unsure:
keeping fingers crossed they will still do my eyes
will post tomorrow when i get back
thanks again guys :sleep:
hope all went well, i know how iffy everything can be. my surgery went well so had a little scare, woke up that am with blood red eye but doc said no problem and now i can see 20/20, is quite wondrous. and am cont to decrease the preds down to 11 mg but now have to increase the cellcept by 250 a day for 2 wks and then 500 a day. kidney doc feels i am "smoldering" so here we go. already been in the bathroom. sigh...

[Rose Cozzette]

Thanks Jan and Sangye, Me 2 and Elephant.
Something is not right and the more I think about it I think the Rheumys have puffed up confidence and no knowledge but what they have learnt off the internet with Wegs. Okay they understand Vaculitis but this one is tricky. Come Monday I am definitely getting in touch with VF and see if I can get some help. Let me know how you get on Me2. Thanks for all your input, Im so damned frustrated, confused and just a bit worried. If I have to fly east to get some sense I will.
Cheers Col 23 Hi Col, been gone for a few days so just read all of this. please be persistent and know we all support you, this forum has been a godsend for me as it will be for you. try to always focus on your well-being and not the sickness, it really does work, and call to you those who can help you. I have done this since day one and it has worked, its all abt the energy we create, keep it positive. am thinking of you. Rose

[DEE]

hope all went well, i know how iffy everything can be. my surgery went well so had a little scare, woke up that am with blood red eye but doc said no problem and now i can see 20/20, is quite wondrous. and am cont to decrease the preds down to 11 mg but now have to increase the cellcept by 250 a day for 2 wks and then 500 a day. kidney doc feels i am "smoldering" so here we go. already been in the bathroom. sigh...
Rose i had to change from cellcept to imuran because i spent all my time in the bathroom !!
rose did you have general or local anethetic ? was it just one eye you need doing soon we will be able to start a cataract club :smile1:

[Sangye]

Rose, have you tried taking cellcept with meals? That helped me a lot. I still had a few rounds of diarrhea each day-- usually right after eating (not just meals when I took cellcept). Also, drinking 2 oz aloe vera gel (mixed in a glass of water, twice daily) helped tremendously. It almost stopped the diarrhea altogether. It works by soothing the gut irritation and won't interfere with any meds.

[elephant]

HI Rose I am on cellcept 2000mg and I am doing good. I do take culturell for the stomach. I even take Bactrim DS daily. Glad your doctors are keeping a close eye on you. Isn't it wonderful to see 20/20!

[freakyschizogirl]

Hi all...gonna come slightly off topic here...My pred dose has come right down now...I'm on 10mg a day so do i still need to take my 20mg Omeprazole acid blocker?? Cos doing the math here...i dont think i need it.

[elephant]

I tried to get off it, but I still take Nexium 40 mg every other day. I am on 6 1/2 mg of prednisone. You might have to do trial and error. Good Luck!

[Sangye]

Freaky, it's very individual once you get to 10mg. Some people continue to need it, some don't. I stay on it until I'm below 5mg. I don't want to take any chances. Like Elephant said, you might have to just try it and see.

[Rose Cozzette]

Rose i had to change from cellcept to imuran because i spent all my time in the bathroom !!
rose did you have general or local anethetic ? was it just one eye you need doing soon we will be able to start a cataract club :smile1:i had general anesthetic tho seemed lighter this second time. i had both eyes done. the imuran made my liver go wacko and the methotrexate made my kidneys bonkers. today is the second day for increase in cellcept and so far so good . i drove for the first time in 1 1/2 yrs this week to walmart, abt 6-7 min. drive and did ok tho felt i had to be overvigilant. hope the cellcept doesnt make me feel woozy so will go cautiously and this town is small so will start slowly. am tired of having to wait on others to get around. oh, and i agree to be a member of the cataract club. lol

[Rose Cozzette]

Rose, have you tried taking cellcept with meals? That helped me a lot. I still had a few rounds of diarrhea each day-- usually right after eating (not just meals when I took cellcept). Also, drinking 2 oz aloe vera gel (mixed in a glass of water, twice daily) helped tremendously. It almost stopped the diarrhea altogether. It works by soothing the gut irritation and won't interfere with any meds.
i was told to take it on an empty stomach but if you do with meals that should work. i dont like to take anything on an empty one. i take omeprazole 40 mgs daily, did increase it since cellcept. i forgot abt the aloe juice, i had taken it in the past and it helped.

[Rose Cozzette]

Hi all...gonna come slightly off topic here...My pred dose has come right down now...I'm on 10mg a day so do i still need to take my 20mg Omeprazole acid blocker?? Cos doing the math here...i dont think i need it.
i have taken omeprazole for years so just cont w/it tho i wonder what it does long term to my insides. the preds didnt bother my stomach but the other drugs did. i figure waiting a while til more settles down is safer as you dont need another problem cropping up.