Looking for input.....

[Sean48]

Hi.....I just got my blood results back and my inflamation is normal and so are my blood tests. Very happy aout that. I have been on cytoxan for 3 weeks and am down to 40 mg of pred. I am glad to say I have not had any side effects. . I get very week just from having a shower or making a meal. I am still out of work and don't know when I am going back. Not that I am in a hurry. :-)
My doctor says my tiredness is the disease itself and the tests and surgerys I had in the 3 week stay in the hospita...... If my bloodwork and inflamation is good why am I so tired all the time? Some of you exercise. I can't imagine doing that.....How long did you stay out of work after being diagnosed?
My WG is my lungs, although i had so many of the other symptons....(like everyone I had excuses for them all.).....I had an open lung biopsy and biopsys done on most of my organs.....and without the lung biopsy, I wouldn't have been diagnosed.
Can anyone enlighten me any more on why I am so tired and how long some of you were like this. I am not driving yet either. I can't even imagine going for groceries.
Thanks for any comments you can send my way.....

[elephant]

Sean48, I have not worked for two years. But the first year I could not exercise...yes you will feel tired for a while. It is the cytoxan and the disease. How is everything else?

[Col 23]

Hi Sean48
I was diagnosed Dec 2009 and still get very tired. i also had it in the lungs and also the eyes. When I was initially on the high dose of Pre 80mg I couldnd sleep and was full of energy. Im now on 13 mg of Pred and taking Methotrexate and 9 months on I still need rest and more rest, just go with the flow and listen to your body for the moment. It takes a long time for the meds to kick in. My doc advises to go at 10%, no stress, take the meds and rest and let the meds do the work.
cheers Col 23

[JanW]

Sean: While I have not had the fatigue, nor been on ctx like many here, I have had surgery to repair my windpipe due to damage from WG (and will have to do it several more time) and can say that exactly what my surgeon warned was true -- surgery takes more out of you than you think. Although mine was a major surgery, it only takes about 20 minutes but I was wiped out for several days afterwards.

I just returned from the Vasculitis Foundation symposium with many attendees there with WG and yes, it does get better. Some of them absolutely were energizer bunnies...we started at 7 a.m. and went until 5:30 a few days, so it can be done. Many of them were people older than me (I'm 45) diagnosed several years ago.

[misskay]

Sean, I was diagnosed in June 2010 and also have lung involvement (our hosp stays and biopsie match pretty well). Talked to my Rhumy about this very issue this morning. He said "it's gonna be a while". Said it was the WG and the meds... once we get things more under control and get the Pred dose down more I should start having more energy. I have been on the Cytoxan for a month now. Have just started to do some small things on my own, but get very very fatigued. I can make a short trip to grocery and walk very slowly, taking breaks as needed (the other day a little old lady with a walker passed me I was moving so slow). Sunday night I made dinner (chicken and dumplings...) but both wiped me out. Even going to doc appointments exhaust me. He told me to be patient... I'm NOT! I want to feel like 'me' again.

My husband says he can see a big improvement in energy and how 'sick' I look... doc also ssaid hubby would notice changes before I did. He's right, as usual. Hang in there...

[andrew]

Hi Sean
As misskay aluded to, you'll look better a long time before you feel better :) Keep in mind that, metaphorically speaking, you've been body slammed onto a bed of nails by Andre the Giant. Your body has taken a massive hit and while your blood results look fine, it still has a lot of recuperating, repair and rest ahead. The worst thing you can do is push it too hard, that was my problem early on. There's also the meds. Both the Cytoxan and the Pred will slow you down. Remember that the Cytoxan is toxic and while it is wonderful for knocking your immune system on the head, it takes its toll on other parts of you as well. Rest and a good diet and more rest is the main thing you can 'actively' do to keep the recovery process humming along. Unfortunately, patience is key :) As for working, I was back at work almost six months after diagnosis and three months after leaving hospital. That's me though and you'll find that everyone is different. You may take a longer time or not but however long you take to feel more human is how long it's going to take....geez I nag a lot....sorry....oh, by the way, are you drinking heaps of water after taking cytoxan? You need to flush your bladder out after taking the stuff.

[Barbara1966]

Sean
I was out of work for 10 months the first 8 months I was not able to do anything, I lost some of my hearing and my lungs were involved. My biggest problems were coughing and walking - I would get out of breath just walking couple hundred yards and forget climbing steps. It took me forever to clean my house, just a simple task would require too much energy from me that I did not have. I stayed on cytoxen for a year. For the last four months I feel great but I still have days where it feels like I've no energy but that's getting to be less and less.

Stay positive will get better.

Barb

[Sangye]

Four years later and I'm still nowhere near being able to work again. I was in terrible shape at diagnosis and then immediately developed tons of blood clots. And many complications since. We're all different.

Andrew has it right about the ctx wiping out your energy. It puts out the Wegs fire but it costs the body a lot to do it. Wegs uses up a lot of resources when it's active. Rest and take time to let your body heal.

[brocky99]

I have been out of work for just over 2 years I was just thinking about working part time again end of 2009 but then had a flare in jan 2010 so have had to learn to rest more etc. As Jack and plenty others as said on this forum u will probably never feel how u used to feel ever again and we have to find a new normal. I was very tired on first diagnosis and breathless. I still am tired and take a nap every afternoon and i still cant climb stairs without weasing or go shopping without taking a rest and a sit down every so often. This used to really get to me because I am only 34 and was always doing something before i got diagnosed, but now i have accepted that i cant run round like an idiot and realise my new normal includes plenty of rest.

[andrew]

Andrew has it right ....

That's something you won't hear all that often :)

[Sangye]

LOL-- Mark the calendar! We'll celebrate the day next year. With headless gummy bears and gooey children (I don't remember what the Brits were calling those candies) :D :D :D

[DEE]

JELLY BABIES :) jelly sweets with pred sized tummies !!!!!!!!
DEEx

[Sean48]

Thank you all so much for all your input. It really enlightened me. Everyone has tips and info that I can relate with. I especially was glad to hear about the energy loss after just doing little chores. Those are the things that get the most of me. I must say I must still be sick as I am not climbing the walls yet. The part that I need to adjust to is the fact that I will (or may????) not be like I was again. I'm not an overactive person but I do want to get back to golf. For those in remission are you saying you still get loss of energy and tiredness? I am lucky for the facct I have no lung damage. I will have lots of nodules and scaring though. I take advair and spiriva for my copd and asthma. Maybe by the time I finish my meds I will find out it wasnt COPD after all and it was a WG sympton. I have gone back and read all your posts again and you are all so imformative. I sure do appreciate it. Hope all are having a good day today.

[zylodey]

Hey Sean, I was diagnosed last year in May. I have no signs of lung involvement yet, but have the saddle nose, damaged kidneys and had to get a pacemaker. I was 38 at the time. I went back to work a month after being diagnosed part-time for a week and then full-time the week after and am still working full-time with no sick days since. I was tired, but would just make sure I didn't push myself too badly - I have a desk job so that helps - but it is very busy. I also golf and got back in the swing of things by July - about two months after being diagnosed, and started with 9 holes and then up to 18 holes by August. I didn't keep score at first, just got back in the swing of things. This year, I am happy to say I did 36 holes one day - which did overdo it a little. I am not a very good golfer - 23 handicap so I take quite a few swings. I would say my golf game has even improved. I have not had any flares in the last year, just a case of the shingles in the spring. I should be off the prednisone by November. I am also currently taking Imuran but had initally started with cytoxin for 6 months. So have faith you will get your golf game back.

[marta]

Hi.....I just got my blood results back and my inflamation is normal and so are my blood tests. Very happy aout that. I have been on cytoxan for 3 weeks and am down to 40 mg of pred. I am glad to say I have not had any side effects. . I get very week just from having a shower or making a meal. I am still out of work and don't know when I am going back. Not that I am in a hurry. :-)
My doctor says my tiredness is the disease itself and the tests and surgerys I had in the 3 week stay in the hospita...... If my bloodwork and inflamation is good why am I so tired all the time? Some of you exercise. I can't imagine doing that.....How long did you stay out of work after being diagnosed?
My WG is my lungs, although i had so many of the other symptons....(like everyone I had excuses for them all.).....I had an open lung biopsy and biopsys done on most of my organs.....and without the lung biopsy, I wouldn't have been diagnosed.
Can anyone enlighten me any more on why I am so tired and how long some of you were like this. I am not driving yet either. I can't even imagine going for groceries.
Thanks for any comments you can send my way.....

Hi Sean,
My first three weeks were crazy slow. I was a complete waste of space, and remember a couple of weeks after getting out of the hospital still quite immobile (getting a drive to get my weekly bloodwork done) looking at a mom and toddler walking down the street wondering if I'll ever be able to do that again with my daughter. At that point, feeling the way I was, I honestly thought it inconceivable. It made me cry as we drove by. My doc told me that after an event like that and all that came with it including the lung biopsy and being laid out in a hospital bed for a couple of weeks I probably lost 50% of my conditioning. Luckily I was in pretty good shape before I got sick, so I was lucky. I normally am pretty active (more for fun than for health reasons,) but for some unknown reason I had taken on and just recently finished a pretty intense 3 month workout program that made me stronger - overall - than I had been before. I really think that played in my favour (Canadian spelling Doug.. ;) )
Things have improved dramatically. I still get tired and out of breath, but I'm going shopping, doing household chores, 'hanging out' with the Energizer Bunny - AKA my daughter, AKA Spiderman, AKA Catwoman and Beetlejuice. I've gone out for a few bike rides, several good mountain hikes, 11 holes of golf, and getting stronger all the time. I promise you'll feel better than you are right now. You'll definitely get stronger. I still have a hard time wrapping my head around the 'new normal' and in the spirit of 'ignorance is bliss' will continue to push for a feeling of the 'old normal'... I'll just do it in baby steps, tiny little baby steps. I got diagnosed in May by the way, so it's 3 months to the day that I started my treatment, saw my rheumy today and things are definitely looking up according to the lab work. I'm touching wood that everything continues in the same direction.
Take care, stay strong, and keep coming to this forum. I swear these people here have made a world of difference for me. I've gotten more from here than anywhere else. In fact I have a proposition for everyone on here to take this power and energy one step further - if that's possible, I just have to figure out a way to articulate it so that I can truly get my idea accross. Stay tuned fellow weggies.

[elephant]

Marta it's a pleasure to have you here on this forum! Love the way you write!

[Sangye]

Marta, I love your contributions, too. I'm amazed at how much you're able to do. I can't get anywhere near that and it's been over 4 years!

Yesterday while sitting on a JHU shuttle, I watched people walking briskly down the street in 96 degree sweltering humidity and stand around waiting for the next shuttle. I can't even conceive of walking like that or standing for longer than 5 minutes. And in that heat-- I became totally weak within a few seconds of having to walk or stand. Add the dizziness and being unable to even turn my head quickly and difficulty breathing...it was bad.

We can lose so much with Wegs that I often feel like I'm constantly trying to hold ground at best, forget about ever getting back to where I was. It can get me down. When I saw Avatar, as soon as the guy got into his avatar and started moving around, I burst into tears. I yearn to move like that again. I'm a very physical person.

And yet, staring out the same shuttle window yesterday at JHU, it wasn't long before I saw adults and kids in far worse shape than me. Many were permanently disabled. At least I had a good, strong body for 42 years. So many people never even get one for a few seconds.

[julia]

Sean48

Dx jun 2009. first 3 months napped everyday. Cleaned out 1 closet a week. Sometimes made dinner. Fold clothes. Shopped with someone with me. Drove on occasion.
Was resolved to the fact that this was the "new normal"

4th-6th month napped less. May go 1 or 2 days a week without nap. would have worked 1 or 2 days a week if I had opportunity. Driving and shopping on my own.

6-9month. Off cytoxen. on Imuran. Energy level better "new normal" looking better . Resting rather than napping. I could go back to work part-time just need to find something. (will have to be a desk job).

10-13 month. Feeling better all the time. (except here and there when tapering pred. ) Anxious to find part-time work. Started water arobics 3-4 days a week. To others I appear back to myself. Except for the added weight. Do most of the house work.

When I first read posts about the "new normal" I was resolved to the fact that I would be doing very little. I am happy that the "new normal" continues to get closer to the old normal.

Last night I surpassed the old normal. Took train into chicago, walked 6 blocks (+) to the "L" train rode that to the White Sox game. Alone. I would have never done that before. (met my mom at game)

For those of you familiar with Chicago. (I walked farther than needed because I was following the "L" tracks trying to find the entrance to the red line. Spotted a group with White Sox jerseys and followed them. Now I know the red line entrance is underground.)

[elephant]

Good for you Julia, your brave walking alone around that area. Sorry, I am a little fraidy cat! Sounds like you are progressing beautifully!

[pberggren1]

Hey Cherie, 23 handicap is not so bad. If Tiger keeps it up like he has been lately he will have a 23 handicap as well.

[elephant]

Phil how are you feeling these days? How is the Bactrim DS? Are you still taking that twice a day?

[pberggren1]

Phil how are you feeling these days? How is the Bactrim DS? Are you still taking that twice a day?

I am feeling not to bad elephant. I feel tired and a little weak about half the time. I am still on the bactrim DS twice day but see my Wegs specialist later today to discuss getting off all meds including Cellcept and Pred.

[brocky99]

wow thats great news phil hopefully. I have started with a rash again today on my chest and neck where it all began so going to speak to doctor tomorrow, dont feel ill tho but the rash was the first sign of the flare in jan so just want to get it looked at will prob have to have an anca test the markers on this was quite high in jan so will prob be best indication, the flu like symptoms i first had are now masked i think with the pred and azathioprine etc. will c doc tomorrow whilst at dialysis.

[Sangye]

Phil, so you haven't started on the major antibiotics yet? I lost track.

Lisa, so glad you're going to see your doc tomorrow. I hope it's not Wegs flaring up. Maybe u just stepped on the Wegs dog's tail and he got a little upset.

[elephant]

Lisa, just be careful not to step on the dogs tail. :)
Phil, my WG specialist and other doctors only like you to take you off one medicine at a time usually. Just to make sure you don't start flaring. My Rhuemy told me yesterday that she wants me off prednisone. So it will be a long time for me to get off it.
Phil when do you find out about the culture?

[Sangye]

Wow, Elephant, was that Dr Langford or your local rheumy? I hope you can get off of pred.

[JanW]

It would make sense to remove one drug at a time, so that when/if problems arise, you know what might be causing them.

[pberggren1]

OK guys here's the story:

I saw my Wegs specialist today. I have not started on the antibiotics yet. Still waiting for susceptibility testing results to see whick antibiotics to use. My Wegs specialist finds this a little odd because usually he treats infections like TB first and then waits for the susceptibility tests to come in and then adjust the treatment. He said he will slowly taper me off the Cellcept and Pred about 2 weeks into treatment and do weekly blood and urine testing along with clinic visits. He said we have to be very careful to watch for a flare and to catch it early. We had a very good talk for about 2 hours. We discussed many things but forgot to mention a couple of things. So hopefully next week I can start on the IV antibiotics.

[marta]

Marta, I love your contributions, too. I'm amazed at how much you're able to do. I can't get anywhere near that and it's been over 4 years!

......

And yet, staring out the same shuttle window yesterday at JHU, it wasn't long before I saw adults and kids in far worse shape than me. Many were permanently disabled. At least I had a good, strong body for 42 years. So many people never even get one for a few seconds.

Thanks elephant, thanks Sangye, you guys give me inspiration and also remind me of how totally lucky I was in my situation. I didn't have a lot of really gross stuff before I went in (relatively speaking, my mom is reading this over my shoulder and just gave me 'the look' as she came to emerg with me that fateful night,) and then miraculously (sp?) I fell into the hands of the 'Dream Team' who were all over me me like white on rice. I look at some of the stories on here and really feel like I've had some horse shoes up my bum, so to speak (read lots of luck). I think that it's also me being stubborn and well, lets say what we're all thinking... not so smart, that keeps me trying new things that I probably shouldn't be trying, despite the fact that I'm living on probably no more than 4-5 hours of sleep each night. (I haven't figured out the sleep thing yet, and I'm slowly starting to turn mad because of it, but hey, who knows where that'll lead. They say the line between genius and madness is a fine thin one... ha ha, hopefully if I fall off that tight rope I fall on the right side.)

Sangye, I read your post and I can't even imagine keeping the spirit that you have considering the battle that you have fought and continue to fight. You're an amazing woman and you truly rock. I totally know what you mean about Avatar. I had a similar reaction as I saw it for the first time when I was 'horizontal Marta'.

And yes, it is all relative. It all depends on what you compare to and it is us that choses what the reference point is going to be. I think that is why for me a Wegener's diagnosis was a blessing, as my first diagnosis that night was not a very promising one. I knew I would give it every ounce of fight I had in me but I think that remission with Wegener's is a much more attainable win that what they first told me I had to battle with. That doctor in ER gave me a great reference point to compare Wegener's to, and despite the fact that it made for a horrible first night in the hospital it turned out to be a mental blessing. I too feel like I've been blessed with the life I've had so far, so every day from May 07, 2010 is bonus, regardless of how it's handed to me that day, it's a bonus and I'm grateful for it and everyone in it.

[elephant]

Sangye, it was my local Rhuemy that wants me off the prednisone. Dr Langford would love to have me off it but she said it is hard for people with sinus issue's ( like myself) to get off it. The thought is too stay on Bactrim even daily to get off the prednisone. She told me to take one DS bactrim every other day and if I start to have more sinus problems then to take it daily. So I am keeping a journal and documenting how I feel daily. I see my local Rheumy in four weeks and I will bring my journal then.
Phil, wow that is a long time to spend with your WG specialist. Glad you got your questions answered.

[Doug]

(Canadian spelling Doug.. ;)) ~ Thanks! It actually helps keep people placed in the right country when the orthography typical for that country is used. Also, Canada seems to have a blend of British orthography and North Americanisms (Canadians and Americans do share sometimes!) that further place North Americans on one of the other side of the border. Saying that, I can't recall any other than to say I know them when I see them!! Thanks, marta. I'm with elephant: I love how you write!

[Sangye]

He said he will slowly taper me off the Cellcept and Pred about 2 weeks into treatment and do weekly blood and urine testing along with clinic visits. He said we have to be very careful to watch for a flare and to catch it early.
Phil, how much pred are you on, and how long have you been on it? I hope he knows how to taper it over a very long period.

[Sangye]

I too feel like I've been blessed with the life I've had so far, so every day from May 07, 2010 is bonus, regardless of how it's handed to me that day, it's a bonus and I'm grateful for it and everyone in it.
I like your idea of thinking of the days since dx as "Bonus Days." I'm gonna use that. Too often I view the days since as something less than--less function, less freedom, etc... Thinking of them as bonus days will help me shift that. Thank you, Marta! :)

[Sangye]

Sangye, it was my local Rhuemy that wants me off the prednisone. Dr Langford would love to have me off it but she said it is hard for people with sinus issue's ( like myself) to get off it. The thought is too stay on Bactrim even daily to get off the prednisone. She told me to take one DS bactrim every other day and if I start to have more sinus problems then to take it daily. So I am keeping a journal and documenting how I feel daily.
Yes, Dr Seo said the same thing about pred and sinuses. But you know Elephant, I would think you could at least get much lower on the pred (if not off altogether) by giving an anti-inflammatory diet, anti-inflammatory supplements and a Pitta-Kapha reducing plan your 1,000% effort.

From your past posts I think you already do an anti-inflammatory diet very well, so you're 1/3 there!

Anti-inflammatory supplements only work if you take them on a very regular basis. I know you can do that if you don't already (I forget... :D)

The Pitta-Kapha changes are the most difficult, but I know you can do that, too. It's such a huge trade-off: those changes vs pred. It's difficult in the beginning because you have to think about every single thing you eat, but then it gets easier. And you know I'll help you!

And if all that (plus daily Bactrim) didn't get you off pred, then at least you'd know you had done everything possible. Go for it, girl. :)

[elephant]

I am almost there with the anti-inflammatory diet. The reason I want to stay on this diet too is that my cholesterol is very high. So I really have two motivating reasons to stay with the diet!

[Sangye]

Awesome. Controlling Pitta and Kapha will help keep cholesterol in check. Pitta controls the inflammation aspect, and Kapha controls the excess "goo." :D

[marta]

Awesome. Controlling Pitta and Kapha will help keep cholesterol in check. Pitta controls the inflammation aspect, and Kapha controls the excess "goo." :D

My midsection and face are in desparate need of some Kapha by the sounds of it. ;)

[Sangye]

If you mean they're puffy or bigger than you'd like them to be, that means you already have excess Kapha. Don't go shopping for more! :biggrin1:

[marta]

If you mean they're puffy or bigger than you'd like them to be, that means you already have excess Kapha. Don't go shopping for more! :biggrin1:
I just saw "excess goo" and thought of my midsection. So yeah, I guess I'm not shopping 'cuz I've got plenty. My husband will be happy, he cringes when he hears the word "shopping".:scared:

[Happy Camper]

Sean 48
I was also just diagnosed on June22nd. I also had an open lung biospy to confirm the diangosis. After I was discharged from the hospital I started feeling much better very quickly. At about 4weeks I started to feel like myself again. I have been exercising a little and take care of my 3 small children. So hang in there, there is hope. To be honest I think I feel better now then I did for about 8 months before being diagnosed. I didn't realize how sick I was, just thought I was a tired nurse/housewife and made all kinds of execuses.
Did you have small/big nodules on your lungs? Did they grow fast? I was just curious how it happened for you. My grew so big so fast. Are your lungs still sore? Mine seem to get like a stiff feeling at night!
I don't know how much this is playing a part in my recovery, but I completely changed my diet around the minute I was diagnosed and haven't looked back since. I have spent more time and energy in the last 2 months researching anti-inflammotory foods/reciepes/cooking etc... I feel like its the only thing I have control of.

Sangye: I have been doing the diet and the supplements: do you mean like fish oil. I am not formiliar with Pitta-Kapha??? Whats that all about? It's been so much to learn in such a short period of time for me. And I don't really have much free time trying to be the "normal" mom of a 5, 3, and 2 yr. old LOL! I can use all the help I can get in this department

[Sean48]

Happy Camper
I had the same as you. Within a few weeks mine grew out of control. It was March when I had an xray because they thought I had an infection and by June both my lungs were full blown with large nodules taking up pretty much my whole lung. My right lung was the worse. They really didnt want to do the biopsy as they were so bad, but they had already done biopsys on everything else. My rhumey is the one who insisted as she knew it wasn't my RA. The surgeon didn't want to do it because of the danger but he did and they found the source. My lungs are not sore anymore nor are they are not stiff at night. I do feel strange when I take deep breaths and I don't do coughs very well. I actually think the past couple of days I have improved. I actually went to my sewing room (I am a quilter) and got it a bit organized. When i got sick my sister came to stay with me and I had material and quilts everywhere. She tried to straighten the room up (thats where she stays when she visits). I spent a few hours in there and thought for sure I would be sorry today but happy to say I did fine. Tonight I am good too. That was the first time since I have been sick that I even wanted to go in....I just wasn't interested...
I had ice coffee this afternoon and I am not too tired. Not a good thing. Its 11:00 here in New Hampshire.
I guess i will be listening to my breath to try to sleep. Meditation breathing does help. I had done yoga last summer for a few months but the place I was going was more into the money thing so I quit. I have been checking out some in my area and am going to start up again. I really enjoyed when I did do it. Sangye, Its a Kaupla studio. Are you familiar with the Kaupla retreats out in western Mass?
I havent been driving but I am going to start again. My doctor told me not to until I see her again, but I don't think she expected to see me doing so well and I never did ask her about it on my last visit. i see her again on the 30th. I don't think I will last that long.
I havent gone back to work and hope to stay out another month or so ... I guess that will depend on the insurance and doctors.......I don't want to go back part time as that will only give me part time benefits. Not 100% sure but if the suggest it I will check into it. I do well with the pay I am getting for short term disablility. After August I go on long term and get the same percentage so I only want to go back to work when I can go full time......I do desk work and not alot of pressure.
Well I have been a babbling fool. Coffee Preds or me????? ha ha.
Hope everyone is having a good day. Sangye.....The Pitta-Kapha diet....I must check this out. Or is this something different than the anti inflamatory diet.
I seem to be eating wayyyyyyy to many carbs.....

[Sean48]

Marta.....i can relate so much with you......I am glad you joined the forum too.

[pberggren1]

Sean48 or Sharon:

the Pitta and Kapha are refering to constitution types of ayurveda. You can look on the thread: wegs and ayurveda.

[marta]

Marta.....i can relate so much with you......I am glad you joined the forum too.

I too am sooo glad I joined the forum. I have gotten more from all of you that I could have ever dreamed. I can totally relate to people here and know that when I go on a rant, you'll know where I'm coming from on wont hate me too much.
you might do one of these....:wtf: but I won't see it, so it'll be OK.
Ahhh, sleep, that ever elusive old friend... can't wait till we meet again.

[gwenllian111]

Fatigue is something I struggle terribly with. Even though my bloods are fine, I still go to bed at 7pm every night and tire very easily during the day. People look at me and think 'she looks fine' but inside, I just feel exhausted!

I haven't worked for years, a combination of a lot of little flare ups, tracheal stenosis, neutropenia, but probably more than anything, the fatigue. I think it's a long standing symptom of WG, whether you're in remission or not x

[elephant]

Gwen, I am in remission..but still take four medication's for Wegeners to keep me in remission. I am tired by 1pm and have to take a nap. I feel like I am walking on a tight rope and tip toeing around the WG dog. :)

[Sangye]

Sean/ Sharon-- It's great that you're following an anti-inflammatory diet. Makes a big difference. Here are the 2 main threads with info on Ayurveda. I tried to distill it into simple stuff. Just take a piece at a time and work with it.

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/788-wegs-ayurveda.html

http://www.wegeners-granulomatosis.com/forum/medication/943-how-beat-some-preds-side-effects.html

[elephant]

I am cleaning my diet to 99% starting tomorrow. The one percent is weaning me off coffee. :)

[Lightwarrior]

Marta,
My doc put me on amitryptiline (brand name Pamalor) it is an anti-depressent in higher doses. He prescribed 5 mg and the lowest dose my pharmacy had was 20mg so I had to cut the pills into 4ths. I only took them for about three nights and was able to sleep the very first night. I found they made me tired the next day and since I was able to sleep on my own I didn't need them. I keep the prescription active in case and they can be taken prn. The other things I tried didn't work, no doz, benadryl, etc.

[marta]

Thanks Lighwarrior,

I'm doing / trying everything in my power to avoid another prescription. I just want to avoid adding to the soup. My regular doc (my GP) suggested Benadryl, which I haven't tried yet, and my rheumy told me to try over the counter sleep aids. I haven't gone there yet. I just tried something inspired by a post from Boomer, and will see if it works two nights in a row tonight.

I just realized today that as of next Thursday I'll be at the magic 20mg mark with prednasol. Holy $#!^*!!! I can't believe it. I'm a little freaked out. In a good way.

I just had a visit with my rheumy (last one two months ago and next one two months from now) and he said that we'll talk about getting off cyclophosphamide on our next visit. I also asked him what exactly is happening right now with the 'disease'. The way I kinda see it is that it is still maybe active but not progressing and very minimally active - I just base this on the odd weird feelings I get in my head, my poppy ears, the big giant blue bag under my left eye, my tiredness and general lack of energy. They are nothing compared to the last three weeks prior to diagnosis of course, but are there nevertheless. He told me that what's happening right now is that I'm in a drug induced remission and the objective is to get to a drug free remission. He said that a lot of the symptoms I feel are because of drug side effects rather than WG. I don't know if I fully buy that. Just doesn't ring right with me. My lab work is apparently all pretty good other than the fact that my red blood cells are a bit too large, so we're going to do some different tests to see what might be causing that. Hopefully nothing more than a vitamin B-12 defficiency. Any of you had that before? Large red blood cells? He also said that I might experience prednasol withdrawl symptoms... what would that entail? You guys have been here before and I'm just curious what pred withdrawl would feel like. It's better when you know what to expect, that way you don't panic when something new comes along.

Thanks as always.

[Sangye]

Marta, even Dr Seo thought my Wegs symptoms were just fallout from the drugs and disease damage, not active Wegs. It's very hard to tell. I can one thing for sure: trust your inner sense more than any test or opinion. If it's Wegs, it will continue to get worse. Sometimes the only way to tell is to let a little time go by.

[marta]

Thanks Sangye,

It's so strange not knowing, and the specialists not knowing. He sounded pretty sure of his answer but it also sounded like he's used it a few times, and there was a look of uncertainty... maybe I'm pred super sensitive, it's almost like having super hero powers - ha ha.

[elephant]

Marta, everyone is different when tapering the prednisone. I noticed more symptoms when I was tapering below 10 mg.
Hopefully they will find out about the Large red Blood cells.

[marta]

Hey elephant,

so the symptoms you noticed at less than 10 were pred withdrawl or wegs acting up? I remember reading something from Sangye that has stuck with me a bit... how Wegs is different from other AI diseases in that you could be fine one day and have kidney failure a couple of days later (not exactly in those words, but the spirit of the statement sure stuck with me). Honestly I've been quite lucky so far with the pred - I think. Aside from the chunky midsection and bigger face, sweats (which only came back a couple of weeks ago) and of course the insomnia, I haven't experienced a ton of the real yucky stuff that I hear about. Who knows, it could hit me later, but thus far I've had the proverbial horse shoes up my not so proverbial butt.

[pberggren1]

Hey Marta:

The insomnia may be the pred. You don't want to taper too fast off the pred, especially when getting to 10 and below. I believe that once down to 10 or 5 to taper by 1mg per month and not any faster. I could be wrong on that.

My wegs doc also said that he closely monitors anyone on ctx. He gives them his cell phone and home numbers. He said that the WBC cannot go below 4 and if it does he may have to take you off ctx. He also said that he would want the patient to call him immediately with any signs of infection like a sore throat or something like that. He also said he would like to see the patient in the clinic at least once a week and to do blood and urine work at least once a week as well.

[elephant]

Marta, I was having more WG symptoms and feeling a little more tired once I get below 10 mg. Now I am tapering 1/2 mg every four weeks. Right now I am documenting how I feel everyday so that when I see my local Rhuemy we can figure out if I need to increase the cellcept.
The insomnia is the prednisone. I could not really sleep until I was at 10 mg. I never took a sleeping aid because I take so much medicine I was afraid of a drug reaction.

[Sangye]

My wegs doc also said that he closely monitors anyone on ctx. He gives them his cell phone and home numbers. He said that the WBC cannot go below 4 and if it does he may have to take you off ctx. He also said that he would want the patient to call him immediately with any signs of infection like a sore throat or something like that. He also said he would like to see the patient in the clinic at least once a week and to do blood and urine work at least once a week as well.
Phil, I think your doc was just talking about your particular case. When I've been on (oral) ctx I've only had labs done every 2 weeks. I also only have needed to see the doc every 3 months-- sooner if there's a big problem that can't be dealt with via email. If the Wegs specialists saw everyone on ctx every week, they'd never have time to see anyone else!

[JanW]

Just the idea that Phil's doc is giving out the home and cellphone numbers is beyond the norm (at least in the US) indeed!

[Sangye]

Yes, none of my docs would do that. I wouldn't even want mine to. The Wegs docs don't get much down time, and I want mine to be well-rested.

[elephant]

I want mine to have a good night sleep so they don't wake up the Weggie dog. :)

[pberggren1]

My Wegs doc only has one patient, ME! So I guess he can afford to give out his phone numbers. But I am sure he was refering to when he was in the UK. It is very sparsley populated here so he may never get another Wegs patient besides me.