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Sangye
01-26-2010, 02:09 PM
With so many new members, I thought I'd highlight a few common side-effects of high-dose pred:


1. Difficulty focusing on tasks

http://icanhascheezburger.files.wordpress.com/2010/01/funny-pictures-cat-has-lots-of-toilet-paper.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)



2. Tension in interpersonal relationships

http://icanhascheezburger.files.wordpress.com/2010/01/funny-pictures-cat-hates-your-job-performance.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)



3. Feeling isolated, social withdrawal

http://icanhascheezburger.files.wordpress.com/2010/01/funny-pictures-cat-has-fortress1.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)



4. Mood Changes

http://icanhascheezburger.files.wordpress.com/2010/01/funny-pictures-cat-sleeps-with-stuffed-toy.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)


(continued...)
(http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

Sangye
01-26-2010, 02:12 PM
A few more common side effects :


5. Insomnia, Daytime Sleepiness

http://icanhascheezburger.files.wordpress.com/2010/01/funny-pictures-cat-wants-his-coffee.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)



6. Increased Appetite

http://ihasahotdog.files.wordpress.com/2010/01/funny-dog-pictures-eated-pie.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)




7. Low energy


http://icanhascheezburger.files.wordpress.com/2010/01/funny-pictures-cat-does-his-job.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

Lightwarrior
01-26-2010, 02:59 PM
These are priceless, I can relate to all of them. Thanks for the light look and helping to make normal of an abnormal. :-)

elephant
01-26-2010, 10:40 PM
Sangye the pictures are great! Love the dog! I had a dog who ate my birthday cake! Jumped on the table and ate it, then got sick.

moyan
01-27-2010, 01:01 AM
Endorphins are jumping all over the room here, thanks Sangye

TBulger
01-27-2010, 01:38 AM
Great post - Thanks for the laugh!

Geraldine 1
01-27-2010, 08:09 AM
Thanks Sangye i can so relate i feel like a kangaroo bouncing all over the place. Now i know i am not flying solo.......

MCC
01-27-2010, 01:22 PM
Me too! :D

Sangye
03-08-2010, 02:41 PM
We always joke that being on high-dose pred makes you think you can lift cars....

http://icanhascheezburger.files.wordpress.com/2010/03/funny-pictures-cat-is-on-steroids.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

(and no, I didn't create this LOLcat-- the typo is killin' me)

JanW
03-08-2010, 03:15 PM
This is how I felt after I left the hospital on Friday...it rally bums me out that steroids have such bad long term effects because even at relatively low doses, it just maks me feel fantastic. Nothing hurts!

jola57
03-08-2010, 04:28 PM
Thank you Sangye, I so needed a laugh. My computer crashed, had to restore it, I am down to 7mg pred and feeling hurtful and achey, and it started raining to boot.

elephant
03-08-2010, 08:06 PM
That was cute Sangye. I think that big rabbit could of lifted that car up without steriods! :)

onatreetop
03-08-2010, 10:13 PM
That was great!!!Thanks for the laugh!! Good way to start the morning. I can relate to all of the above too. It almost looks like me minus 3/4 of the fur!!!!!

Sangye
03-09-2010, 12:49 AM
Jolanta, I'm so sad to hear you're not doing well. And a computer crashing--I bet that topped it off....

What's your doc's plan if the 7mg pred isn't enough to contain your symptoms? I really hope it turns around quickly. :)

moyan
03-09-2010, 02:28 AM
I am so embarrassed, I'll go and hide under the desk (so I can reach puter). I even need help carrying the grocerybags up my 5 steps!!! :)

Sangye
03-09-2010, 02:41 AM
Moyan, I'm the same way! That's the long-term effect of pred. It's only when you first go on it that it makes you feel stronger than you are. When I was first on the huge doses I was still incredibly weak. My mind was so BIG, though. It's embarrassing to remember those days. :D

moyan
03-09-2010, 02:47 AM
LOL At least one good effect! That's probably why I could have 13 people over for my 70. If I can I will send you a pic, I hate baking, but had a table full of spectacular treats, LOL.

elephant
03-09-2010, 03:12 AM
Happy soon Birthday Moyan. Save me some of those spectacular treats! :)

Sangye
03-09-2010, 03:18 AM
LOL-- only a bunch of people on pred would be begging to see the pics of birthday food. :D

DEE
03-09-2010, 08:29 AM
hi sangye hope things gong ok with u had a total wipe out day just did not have the strenghth to get out of bed dont know if still geting over infecton side affects of anti b or increase of preds hubby really worrried when i DIDNT want food said now he knows thigs not right roll on thurs when see wg consukt maybe he can sort things out again !! ps must be feeling better just had chippy butty (chip sandwhich) DEEx

elephant
03-09-2010, 09:26 AM
You don't sound very good, how long on the antibiotics? Do you have a fever? Joint pain? chest pain? Dee Hope your feeling better by tomorrow and enjoy your chip sandwich. :)

Sangye
03-09-2010, 09:39 AM
Dee, I think it sounds more like Wegs than an infection. I hope your doc can figure it out easily this week. Take good care-- :)

DEE
03-09-2010, 05:04 PM
thanks elephant and sangye anti b finish today been on for one week . fever now gone .always have joint pain some days better than others. its the itchy rash and pain in face thats driving me mad i had this two yrs ago when they thought was just celllulitus . preds help with swellling on face and chest could be a long session thurs but need to sort things out . atleast more with the world today and ready for breakfast !!!!!!! thanks again DEEx

moyan
03-11-2010, 06:44 AM
Hi all of you who know: When tapering pred, are you supposed to be more tired and achy for a while? I have jointpain too for the first time.

Jack
03-11-2010, 07:18 AM
Once you get below about 10 mg (for most people), you can expect some mild symptoms while trying to taper the pred dose. However, you should stop tapering if things become too bad. I've not been able to get below 10 mg without ear pain and deafness becoming a major problem.

The symptoms of pred withdrawal seem to be different if you forget to take it at your regular time (as I have just done today!). I did not take it this morning and have been feeling increasingly unwell all day - lethargic, aching body and a head ache. I've only just realised what I've done. It is not the first time!

moyan
03-11-2010, 07:22 AM
Thanks Jack, that's exactly it, no big deal, but want to know. :)

Sangye
03-11-2010, 07:22 AM
Jack, I'm glad you caught it. I talked to a woman with scleroderma who forgot her pred for a week. She was on 10mg and got really sick. The docs couldn't figure out what was wrong. She was pretty embarrassed about it. But you know how it is-- you can get pretty muddled with all this stuff.

Moyan, I think some joint pain is normal when tapering pred. But you should definitely tell your (lousy) doctor anyway. I have joint pain with Wegs so if I get it with a taper I know it's the Wegs acting up.

moyan
03-11-2010, 07:24 AM
Thanks Sangye. I will not worry unless it starts bothering me

onatreetop
03-11-2010, 11:26 AM
I noticed the difference the second day of decreasing the pred. from 30mgs to 20mgs. The evenings got harder and I was more tired earlier. I spread the doses out to 8 hours apart. So i take the first dose at 630am and the second around 230pm. By 7pm I am ready for bed. Not happening!!!! I have noticed that i am starting to shake more too.
ended up in the er again this morning with chest pain that was two minutes on and off for over two hours. I had taken my morning meds late, 730am and was in the er by 930pm. They hooked me up patched me with nitro and gave me 4 baby asprin asked for pee in a cup and monitored me til noon than let me go. They said nothing was wrong and everything checked out. So.........................................That was my day with my decreasing pred this week.

Sangye
03-11-2010, 12:07 PM
Onatreetop, I don't like the sound of this. Evening exhaustion after taking 10mg pred so late in the day, shaky, chest pain. Did they take blood? Has your glucose been trending high? Please call your rheumy tomorrow morning, okay?

JanW
03-11-2010, 01:36 PM
Yes, onatreetop -- these symptoms should be reported to your rheumy immediately, and he should get you in for an eval and blood work. You never want it to get so bad that you end up in the ER, with people who haven't even heard of the disease.

elephant
03-11-2010, 01:37 PM
Onatreetop so sorry you went through this.... I've been there (ER) many times in the last 15 years with chest pain. I have a feeling it is wegeners...did the ER physicians set you up to see the Cardiologist for more extensive work-up? I know this is the last thing you want to hear, after a horrible scary day. Like Sangye said, call your Rheumy at JHU. Hope your night is better and tomorrow much better. :)

onatreetop
03-11-2010, 10:43 PM
They started the iv but dont remember blood being drawn. It was all happening really fast. My glucose has been hanging in the 80- 110 area. I have to call for the fallow up anyway. Nitro gives you one heck of a headache. Didnt know that. I remember some faint withdrawel sysmtoms last weaning. But not like this. The valuim is decreasing with it. Maybe? that could be part of it?

Sangye
03-12-2010, 01:42 AM
I'm sure they must have drawn blood out of the IV. It's routine to rule out heart attack, etc....

I have no idea what effect decreasing valium would do. Going on or off any drug can cause problems, so maybe.

If it's not the valium or something else, my guess is that it reflects how much more exhausted your adrenals are. Pred is hard on the adrenals, no matter if one feels energized or drained while taking it. It's like a cat burglar that steals without being seen or heard.

elephant
03-12-2010, 05:00 AM
So Sangye, do you have a picture of a Cat burglar? :)

Sangye
03-12-2010, 05:15 AM
You KNOW I'm looking.... :D

DEE
03-13-2010, 12:45 AM
hubby dicovered yesterday never to take me food shoping after long hospital appointment feeling hungry and increased preds = buying pizza which i dont normally eat also triple choc muffins
enjoyed all of it but also ate fresh fruit too ;- he got over the shock off how much the all the extras cost fairly quickly DEEx

Sangye
03-13-2010, 12:50 AM
ROTFL-- triple chocolate muffins.... Oh yeah, ya gotta have those! :D

Sangye
03-13-2010, 01:36 AM
Excessive Appetite


http://icanhascheezburger.files.wordpress.com/2010/02/funny-pictures-cat-ate-mailman.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

DEE
03-13-2010, 02:10 AM
same back to u brilliant been awake since 6am im trying to stay awake body saying different can feel one of those i will just rest my eyes moment !! then it will be teatime ...................
Deex

elephant
03-13-2010, 02:33 AM
That cat looks like me in the morning, then I slab on some oil to calm my hair down!
Did someone mention Triple chocolate muffins? I want on too!!!!

jola57
03-13-2010, 02:59 AM
Jack I'm with you in the forgetting totake your meds department. I now keep a pill box with all my meds in my purse in case I forget. I drive to my office about 13miles and often just as i am parking I remember that I forgot to take my meds.
Moyan, I am down to 7mg pred and I am experiencing some pain and just general feeling bad. I think that i will be on 7mg for a longer time than 1 month.

DEE
03-13-2010, 03:02 AM
sorry elephant all triple muffins gone
dont know if u heard of them but its a vanill slice tonight a cake madde of pastry cutard and cream ;- extra preds must have kick in im stll awake !!!!!
back to sensible diet tommorrow !! DEEx

elephant
03-13-2010, 04:19 AM
Sounds good, I will have some of that. :)

DEE
03-13-2010, 08:02 AM
sorry just finished mine elephant hubbies in the fridge !! extre preds now been awake fourteen hours
forgot what higher does to me awake today probably sleep most of day tomorrow
but also forgot how much less pain i have left side of face not so swollen

eileenv
03-16-2010, 07:35 AM
HI sangye
these were really good, i loved the pictures, wonder if you could help me out, i'm currently on 7.5 of sreroids this has been reduced from 10mg i've had jolting awake as i've just dropping of to sleep. I had these when i came of temazepan i was on a high dose then and stopped suddenly wonder if you can help.

Sangye
03-16-2010, 09:47 AM
I'm a little confused. Did you just stop temazepam or was that awhile ago. You should never stop that drug cold-turkey. (I learned that the hard way!) I also learned temazepam causes depression, even if you take it sporadically as I did for insomnia.

Jolting awake can be a sign of sleep apnea. It can mean that you've stopped breathing and your brain jolts you awake to make you breathe.

moyan
03-16-2010, 10:15 AM
Or it can be your body telling you " go to the washroom"

moyan
03-17-2010, 03:15 AM
Yahoo!! First positive effect of tapering pred: I could pull the white collar up over the sweater in the back!! Progress! :)

elephant
03-17-2010, 11:12 AM
Yahoo Moyan! Love it when that happens!

eileenv
03-17-2010, 11:20 PM
Hu Sangye
i came of temazepan a couple of years ago, i admit to abusing them i would to a month perscription of 20mg in two weeks and them when i wasen't taking them i had really horrible jolting awake it wouln't let me sleep teh were really severe i would wake up breathless. I went to a sleep clinic but of course the night i spent there i didn't sleep!!. Then i realised myself that it was the withdrawel of the temazepan. That why when i started to have them again i wondered if it was the tapering of the pred, only this they are only small jolts. I haven't heard from the my rheumatoligist yet as you i am waiting a phone call from him, i had a nose bleed the night so i wanted to tell him about that as well if i get any more bleeds i will try to contact him again.

Sangye
03-18-2010, 12:29 AM
Definitely ask your doc what to do. I think another attempt at a sleep study is in order. Tell the sleep clinic ahead of time that you didn't sleep last time--maybe they can do something different.

Sangye
03-19-2010, 01:18 AM
If you're on Pred, the answer is "Yes!"

http://icanhascheezburger.files.wordpress.com/2010/03/funny-pictures-squirrel-sells-cookies.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

elephant
03-19-2010, 02:20 AM
Yes, I would! After I take something for nausea!

pberggren1
03-19-2010, 03:05 AM
Our cat Sophie plays with the squirrels in our back yard.

eileenv
03-19-2010, 06:48 AM
Loved the caption- hilarious, just thougt i would let you know that my rheumatoligist rang me today and i told him about probable sinus problem and he is going to refer me to an ENT specialist today. Also told me that my ANCA was still positive.

pberggren1
03-19-2010, 06:13 PM
Speaking of Pred - I saw my GP today and he put me on 10mg for 3 months or so.

I told him I saw the ENT on the 10th and he looked into my nostrils and said things look good - no signs of infection or swelling. I told him I have been off and on the Pred for the last 2 and a half months and that I started again myself last Thursday at 50mg for 5 days and am now at 25mg because the right nostril was closing off again. He said I shouldn't do that on my own and that anything over 10mg is dangerous long term. He said he only likes to use pred only if absolutely neccessary like if I am having a full blown WG flare. I agreed and told him I would contact him or the Rheumy from now on when regarding such issues and would see him again no later than 3 months and would see the ENT again next month and the Rheumy and Pulmo on June 2.

Right now the nostril isn't too bad. Still a little closed off but probably permanent damage from the sinus infections in October and December. The right nostril is a little sensitive as well and am still coughing up the hard and soft bloody chucnks.

Jack
03-19-2010, 06:20 PM
He is right. You should not self medicate with Pred unless you are very familiar with it indeed - you can become very ill or even kill yourself. 50mg is a big dose and could shut down your Adrenal function making it very difficult to come off the drug. However, reserving its use for a "full blown flare" is way too cautious and you could easily end up with permanent damage given that kind of treatment. A maintainance dose is often required to maintain remission.

pberggren1
03-19-2010, 06:29 PM
I'm thinking the same thing about the maintenance dose to maintain remission.

elephant
03-19-2010, 10:07 PM
Phil, I will probably be on Prednisone 10 mg for a very long time. I have been on some forums and found some WG are only on Bactrim DS twice a day...they have limited.

Sangye
03-20-2010, 12:39 AM
Phil-- everything that Jack said: Ditto. (Whew! Thanks, Jack! :D )

pberggren1
03-20-2010, 10:40 PM
Thanks Jack, Sangye, and elephant!

Hopefully in a few weeks I will start to feel better and my nose wont feel so tender and the chunks will go down and my energy level will go up.

After all I, like everyone else, needs to be nagged. I will try and keep you guys posted of the other stupid things I do the way I feel from day to day or if anything else changes.

eileenv
03-21-2010, 07:30 AM
I notice in your reply about pred you said about your right nostril closing off, and for a long time my right nostril there is a narrowing there like there is a blockage, i wonder does this happen to a lot of wegener people? perhaps you could help me out here-thanks

Jack
03-21-2010, 08:03 AM
One of the more common symptoms of Wegener's is nasal and sinus involvement. It can take many forms so a bit of a restriction in one side may well be WG. If it is troublesome, get it checked out by an ENT specialist.

eileenv
03-21-2010, 09:06 AM
thanks Jack
My rhuematoligist is reffering me to an ent specialist, he eventually got in touch with me thanks for your reply

pberggren1
03-21-2010, 01:55 PM
Ditto what Jack said Eileen!

eileenv
03-23-2010, 07:32 AM
thanks for info greatly appreciated, i'm just waiting for the letter for the referal to come throw

Cindy M
03-26-2010, 05:04 PM
I am currently up to 60 mg of preds again, can't seem to get below 40mg without alot of symptom flare ups. I have really noticed a decline in my activity level. I become very tired just grocery shopping, doing laundry etc. I am getting very scared because my meds don't seem to work and I just keep getting bigger and bigger and my energy level is getting lower and lower. It is getting very frustrating because I was hoping that by now I would be on my way to an improvement. I have tried not to do the feel sorry for myself but it is getting harder and I find that I am starting to become more angry and have less patience.

Jack
03-26-2010, 06:05 PM
Which Immuno-suppressant are you taking Cindy? Cytoxin? Perhaps you need to try something else.

elephant
03-26-2010, 09:45 PM
Cindy sorry you aren't feeling good. I agree with Jack, you need another medicine. Let your doctor know whats going on and if they are not really listening go to the next doctor. I wish you well! :)

moyan
03-26-2010, 11:25 PM
Hi Cindy and Jack and elephant. You describe exactly how I feel Cindy. No big problems, but the tired, short fuse and lately even little jointpain. Problem is, I would not know where to turn. The internist knows nothing about WG, he put me on pred for 2 years. I need to know what to ask for and then I can get my gp to prescribe it.
As of now I am tapering pred, 11 mg. today, 10 for 3 weeks tomorrow, :), 100 mg azathioprine, 3 days sulfatrim. And some stuff to protect me from meds.

Sangye
03-26-2010, 11:41 PM
Cindy-- you definitely can't stay at those high doses of pred like that. Jack and Elephant are right-- it sounds like the main immunosuppressant isn't working. Maybe you need a different one or a higher dose. What are you on?

Moyan--there is NO way you can treat yourself (by asking your doc to give you this drug or that)!

Here are my suggestions for both of you to find a Wegs specialist.
1) Call or email the VF
They talk to people all over the world and help them find Wegs docs. VF docs will consult with patients in other countries.
(800) 277-9474
[email protected]

2) Call Mt Sinai (Toronto)
They're doing that huge genetic study for Wegs, so they're likely to know where the Canadian Wegs docs are.
(416) 596-4200

I sure empathize with both of you. It's hard to feel hopeful when you feel lousy and things don't progress (or go backwards...). The first step is to get the right doc on board. Don't lose hope.

moyan
03-26-2010, 11:45 PM
Thank you Sangye, you just opened a door for me. I thought VF only talked with docs.

Jack
03-26-2010, 11:47 PM
Moyan - I agree with Sangye (how you feelin?) as usual. It is difficult enough for a specialist to treat this disease, you can't do it yourself based on internet research. One thing I would say is that it would be far more usual for you to be switching away from Azathioprine before going lower on the Pred. Something like Myfortic would be more suitable if your disease is under control.

moyan
03-26-2010, 11:50 PM
Thank you Jack.

Sangye
03-26-2010, 11:58 PM
Yes, good point Jack. They would definitely taper the pred after finding the best immunosuppressant (and the best dose).

Moyan, VF is an org for patients. Connecting Weggies to Wegs specialists is one of the main things they do. I'm sorry--I didn't know you didn't know that before... :(

Thanks for asking Jack, I'm feeling like poo. Forgetting those 2 doses of the CSF-pressure lowering drug was not good. The pressure starts building and it takes awhile for the drug to kick in and catch up. I imagine by tonight that part will be okay. Still way shaky and weak from the rtx. Gotta drive to JHU today and my head and eyes are dreading it. It's also rainy, windy and cold! Sheesh, this is going to be a tough one.

JanW
03-27-2010, 12:03 AM
Hang in their Sangye. Just echoing what everyone else said (and what I have said before), you can't stay on pred for years and years with no ill effect. I never even had the drug until five years ago, and with the (much lower than WG) doses I was taking for my misdiagnosed asthma I have ended up with osteoperosis, which I will need to be treated for for the rest of my life. I am a 44 year old premenopausal African-American woman with no other risk factors! I know that almost all of us here will have to have pred to save our lives at one point or another, but it should definitely always be used with a view towards the least amount possible to treat as it causes its own damage.

Cindy M
03-27-2010, 07:07 AM
I am currently on cyclophosamide 150mg

Sangye
03-27-2010, 08:23 AM
Ctx at 150mg should be enough to get the Wegs under control if it's going to work. They calculate the dose by your weight. Sometimes if you're in-between two doses they give you the lower dose because of ctx's toxicity. My Wegs doc put me on 150mg which was well below my weight-adjusted dose. Good thing, because even that dose was too toxic to me and I had to stop it.

Cindy M
03-27-2010, 11:14 AM
I am not sure what my weight adjust dose should be, but I have been on 150mg for quite a while at least 3 to 4 months. When you said the dose was too toxic for you what were you experiencing? I tend to feel nausiated with a headache. Also at times I end up spending alot of time in the bathroom and then end up with fischer tears and alot of pain. I am not sure if this is from the preds or the cyclo or something else all together.

Sangye
03-27-2010, 01:13 PM
I had no improvement in my Wegs symptoms so I knew it wasn't working. I was extremely fatigued before the ctx-- major sign of active Wegs-- and ctx was making it worse. However, I don't think I would have been able to tell how toxic it was based on symptoms. My blood work showed the bone marrow suppression.

Nausea and headaches are common symptoms with ctx. I had to take 50mg ctx 3 times a day instead of all 150mg at once. (It doesn't matter with ctx, as long as you get the daily dose in.) Are you drinking as much water as you should on ctx? At least 1.5 liters every day. Hopefully they told you about that. Also gotta pee it out as soon as it hits your bladder.

Cindy M
03-27-2010, 04:49 PM
I have been trying to make a conscious effort to change my drinking habits. I used to drink a fair amount of diet coke per day, probably 1/2 litre and about 1 - 2 cups of coffee. I did drink water but not to the extent I should, probably about 1/4 to 1/2 litre a day. Now I have decreased the pop intake quite a bit, some days I might have 1 to 2 glasses or less and some days I don't have any at all. I did however increase my coffee intake to about 3 cups a day. I now drink 1/2 to 1 litre of water a day but now I will try to increase it. As far as peeing it out that is not a problem unless I am going for the urine test where I seem to freeze under pressure. I am not sure if it is part of WG, or because of the amount of preds I am on but I have very little bladder control so when I have to pee nobody better be in my way. I usually pee about 3 times during the night. I have just gone to see a kidney specialist (there was some blood in my urine, because of fisher tears I'm sure) but everything was okay. I have an upcoming appointment with a urologist in April.

Sangye
03-28-2010, 12:32 AM
Cindy-- oh my gosh. They obviously didn't explain about the need to drink a LOT of water while on ctx. If Ctx sits in the bladder, it can cause it to hemorrhage (hemorrhagic cystitis). This is a very serious condition--difficult to treat and could become life-threatening. You must limit the time ctx sits in the bladder by drinking lots of water all day and peeing it out often. The blood in your urine may be an indicator of bladder irritation.

The other reason for drinking lots of water while on ctx is that it increases the risk of future bladder cancer. The more ctx is in contact with the bladder lining, the more likely it is to mutate the cells. So it should be highly diluted when it arrives in the bladder and peed out quickly.

These 2 conditions are not rare or remote possibilities. They are common in people who don't drink lots of water while on ctx.

Note: Other liquids don't count as water. If you're going to drink soda or coffee, that's on top of the 1.5 - 2 liters of water you should be drinking.

Lightwarrior
03-28-2010, 12:25 PM
Keeping cytoxan from hanging out in your bladder is paramount, I pee at least every 2 hours round the clock, and drink water like a fish. It is inconvientent, but compared to the alternative. I alternate a bottle of water with a bottle of water with crystal light to give some flavor without calories or sugar.

Cindy M
03-28-2010, 04:07 PM
THANK YOU FOR THE IMPORTANT INFORMATION. I do pee alot, sometimes its every 1/2 hour other times its longer. I will definately be monitoring and drinking more water. I have really been into water with fresh lemon lately. It's good to know this information but I really do start getting more scared and worried the more I find out. It really is scary out there.

Sangye
03-29-2010, 12:20 AM
I bet that frequent peeing habit has saved your bladder. Lemon is great-- very cleansing to the body.

I know that having more info can increase your fears sometimes. Let us know your fears and we can share what has helped us. We're all afraid of the same stuff!! :)

Cindy M
03-29-2010, 03:09 AM
Thanks, I will let you know!

jola57
03-29-2010, 03:31 AM
Cindy, this is one coke drinker to another. Drinking 2 liter bottle a day was nothing, but when I was diagnosed I stopped cold turkey. It was very hard and i had headaches you wouldn't believe. I do fall off the wagon so to speak and have a bottle or can but generaly do not drink it at all. I do drink carbonated water and that seems to take the edge off not drinking pop. I am not a coffe drinker but do have 8 cups tea a day.

elephant
03-29-2010, 09:30 AM
I am a coffee and tea drinker that requires alot of peeing. :)

Cindy M
03-29-2010, 03:33 PM
I have become quite the coffee and water drinker lately. The peeing alot can be quite the problem especially when you are out and there is no close bathroom. It has caused a few tense momemts. It has also caused people to look at you a little funny when you are out with them and you have gone to the bathroom 3 to their 1 times. I tend to blame it on the preds and say that I have lost muscle control because of them. Not sure if this is true but it does stop the questions and looks abit.

Lightwarrior
05-03-2010, 04:14 PM
313I found this picture that I thought related to Pred


http://www.wegeners-granulomatosis.com/forum/attachment.php?attachmentid=313

Sangye
05-03-2010, 11:10 PM
No picture!

jola57
05-06-2010, 11:30 AM
same here no pic

Cindy M
05-06-2010, 02:55 PM
Great pictures Sangye. Life with preds.

Lightwarrior
05-07-2010, 02:45 AM
can you see this?

http://www.greatfunnypictures.com/pictures/149_3918ps9.jpg

Doug
05-07-2010, 02:50 AM
can you see this?

http://www.greatfunnypictures.com/pictures/149_3918ps9.jpg

Lightwarrier- I don't recall giving you permission to publish my photo! Oh! I see it's a fat giraffe! Ha!

Lightwarrior
05-07-2010, 02:54 AM
ROTFL Doug, I didn't know I had a twin. Since you love cats here is one I think is symbolic, the dogs represent all of our wierd symptons and the cat is us bravely living through each one.

http://www.greatfunnypictures.com/pictures/273_dogs2.preview.jpg

Doug
05-07-2010, 02:59 AM
I know it's a brave kitty. It's walking right through the water, tail on high, which is a sign of a content, confident feline.

elephant
05-07-2010, 04:40 AM
Too funny ! That's how I felt last night eating a ton of Mexican food!

DEE
05-07-2010, 06:31 AM
thats what it feels after triple chocolate muffins !!!!!!!! everyone should try one ! looooooose fitting tops cover a multiple of sins and preds :) DEEx

elephant
05-07-2010, 09:28 AM
Gosh, I love food. I think about all the time. Oh, can't wait to go grocery shopping. OH MUFFINS...get in my belly!!!

Sangye
05-07-2010, 09:53 AM
LOL-- I can't leave you guys alone for a few hours, can I? :D

Lola
05-07-2010, 02:17 PM
Please don't bring up the word Muffin! I have a big muffin top around my jeans' waistband. ARrrgh.

Cindy M
05-07-2010, 02:47 PM
Muffin top around the jeans, how about looking and bending like your 9 months pregnant. What am I saying, I weighed less when I was pregnant.

sharon
05-07-2010, 08:02 PM
That Giraffe is too much. The funniest thing i have seen in ages. Thanks - was definetly a LOL moment.

All that talk of muffins - leaves me hungry for some of those triple choc ones i keep hearing about - muffin tops? horrible things . . mine has turned into a spare tyre!!

Sangye
05-08-2010, 12:18 AM
LOL-- I guess that old saying is really true "You are what you eat." Shoot. Better start eating Slim-Jims. :D

Col 23
05-08-2010, 03:10 AM
Ive developed this love of licorice, is that good. I think I read somewhere it was good for the adrenals.
Col 23

elephant
05-08-2010, 04:01 AM
I think licorice can increase your blood pressure.
I am going to make triple chocolate muffins tomorrow. I went to "Whole Foods" and ate about 5 pounds of food there....plus I had a brownie gelato. I don't feel guilty....because I deserve to treat my prednisone body once in a while. :)

Col 23
05-08-2010, 04:17 AM
Im going to make date cake tomorrow, oh it is tomorrow..
Interesting about the licorice because I have low blood pressure most times. Sometimes I think the body tells me what it needs.
cheers Col 23

Sangye
05-08-2010, 05:22 AM
Col-- please avoid licorice. It causes high blood pressure (which pred can do) and causes potassium loss (which pred can do). When I was a child my mom started passing out. The docs told her she must have a brain tumor. It turned out to be the daily modest amount of licorice she was eating--it was depleting her potassium. She discovered it many years later.

Licorice is very good for the adrenals but building the adrenals will boost Wegs. It's a great plant to use if you're healthy and know how to avoid problems with it. Bad news for a Weggie. I'm sorry.

DEE
05-08-2010, 07:03 AM
OH NO Sangye i think you will have to give up on me first post i read you asked about hrt not good news !! secondly caught out triple chocloate muffin eating !! AND NOW i read the post about licorice a friend from work bring them as my treat from her no wonder im not doing good !! but the one thing i am good at now is resting took a while for the penny to drop but do realise what its benefits are .

will try better this week :) DEE x

Sangye
05-08-2010, 07:49 AM
Nah, my devotion to nagging is more powerful than your love of triple chocolate muffins, licorice or the desire to be dry. :D

Sangye
10-17-2010, 02:48 AM
Ahem. Remembering the original thread topic....

http://ihasahotdog.files.wordpress.com/2010/10/129152134652057970.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

elephant
10-17-2010, 03:52 AM
That's me laying in bed and my daughter trying to get me up!

misskay
10-17-2010, 03:54 AM
I think I'm BOTH of them today....

elephant
10-17-2010, 03:55 AM
LOL! It is frustrating when your both!

Sangye
11-24-2010, 09:26 AM
http://icanhascheezburger.files.wordpress.com/2010/11/03fde943-73c6-407f-bf28-42f6a248ee43.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

(http://icanhascheezburger.com/)

elephant
11-24-2010, 10:39 AM
That looks like me staring through a window of a bakery...just drooling.

janNaz
11-24-2010, 01:42 PM
That looks like me staring through a window of a bakery...just drooling.

I know what you mean, Elephant! Only I can't just look....baked goods are definitely my weakness.

Col 23
11-25-2010, 02:32 AM
Hi All, love "Ever stop to think", me at a shopping centre today, couldnt remember why I went there, I knew I needed something. Anyway still very fatigued, bloods look okay, inflamation ESR up from last month but only 45. Still extremely fatigued, 1 big day out takes 3-4 days to regain any energy. Trying hydro therapy but wears me out for the day. All okay just been busy. cheers Col 23

pberggren1
11-25-2010, 05:29 AM
Hi All, love "Ever stop to think", me at a shopping centre today, couldnt remember why I went there, I knew I needed something. Anyway still very fatigued, bloods look okay, inflamation ESR up from last month but only 45. Still extremely fatigued, 1 big day out takes 3-4 days to regain any energy. Trying hydro therapy but wears me out for the day. All okay just been busy. cheers Col 23

Hey Col, what is hydro therapy? Is that something to do in a swimming pool?

elephant
11-25-2010, 05:39 AM
Take an easy Col, I don't like the fact that your tired. How are you otherwise?

Sangye
11-25-2010, 06:50 AM
I was just gonna post a "Where is Col?" thread.... You've been on my mind! I'm glad you're okay-ish, but it doesn't sound that great.

I've had the same pattern of 1 day out, several days in for a few years now. It's unpredictable though. Since the Wegs got under control, it's usually more like 2-3 days to recover rather than 3-4. I hope it gradually "costs" you fewer days to recover.

Is your hydrotherapy pool warmer than a regular pool? When I went to aquatic PT they used a large therapy pool that was heated to body temp. It felt great--no shock getting in-- but I noticed I'd be wiped out, inflamed and sore afterwards. Even though I didn't immerse my head, my nose would be red and sore after, too. I got kicked out within a few months because I learned all the exercises and was deemed to be strong enough to do it myself. I had a major fit! I didn't know how I'd get to a regular pool and didn't think the cool water would be good for me. But a few days before trying a regular pool, I had a couple of dreams of being in cool water and feeling very good. The dreams were so realistic I knew they were correct. When I finally went it felt exactly like that! Afterwards I didn't get inflamed or feel stiff and I had decent energy, in fact.

They have hot tubs in the same indoor facility, and most people pop into the hot tub after swimming. It does feel really good and it helps me avoid getting chilled on the way to the shower, but I've noticed if I stay in longer than 5 minutes I get the same inflamed, low energy feeling later.

Both the therapy pool and the hot tubs use bromine instead of chlorine. It smells different. Often, just the bromine fumes are very irritating to me--not just a lung thing, but that gut feeling thing.

Psyborg
11-25-2010, 09:42 AM
I actually had one of my worst episodes before diagnosis in a hot tub. Thought it would help with the muscle pain but blacked out when I finally stood up. Was pretty embarassing :)

Jack
11-25-2010, 08:58 PM
I can understand that. I don't take baths (only shower) for the same reason. It takes me a couple of hours to get better after having a bath even though I might enjoy it at the time.

Sangye
11-26-2010, 01:02 AM
Ever since I figured out the connection with hot water, I take cooler showers-- as cool as possible without getting chilled. Makes a huge difference in how red I get, and I don't feel drained afterward.

Thakator
12-09-2010, 02:16 AM
Will second the notion of using care with hot tubs. I've had one for years and love it. Used it nearly every day. Not so much now because of the Wegs, not as often and not nearly for so long at a time. It does make one feel good while in it but more often than not you feel worse ten minutes after getting out than before getting in (must be that inflamation thing). And, as Psyborg experienced, one can pass out upon standing from a protracted stay in the tub because of a noticably lowered blood presure. The manual that came with my tub warned about staying in too long if you have certain medical conditions (such as BP issues) - - but no mention of WG, of course. So, once again we see the benefits of this forum and the insights to be gleaned herein from those of you who have been travelling this path for quite some time. Thanks for sharing, Ron

DEE
12-09-2010, 04:18 AM
hubby installed a whielpool bath for me after asking sevedal peoples opinion all givunc different advice decided to just try an see found rgat tgree to foue mins max if any longer makes me sljghtly light headed and tited but worth it on a cold day