Long Term

[Empty bucket]

I was wondering what is considered long term use of preds ? If you've been on preds for long term should you taper slower than short term use ?

[elephant]

My thought is if you have been on prednisone for longer than six months you really have to taper very slowly especially with Wegeners. I have been on prednisone on and off my whole life. I was on prednisone about 15 years continuously, then off for 10 years and now I am on again...

[JanW]

The longer you're on the longer you should take to get off, is what I've always heard. Also, while some people may have to remain on steroids their whole life once they are diagnosd with this disease, goal is always to get to the smallest dose possible -- pred does have it's own side effects, many of which don't show up until years later.

[renidrag]

I started at 80mgs a day and six months later was off completely, and still am. Dropped from 80 to 2.5 and done.
It is however not the preferred way from what I read on this forum. I was very nervous doing the taper as directed but I followed Doctors orders. Most users here will drop very very slowly. Some can not get off at all.
Dale

[Sangye]

An endocrinologist told me if you're on at least 20mg for 3 weeks, then your adrenals have shut down and are dependent on the pred. That means you have to taper gradually. All of our docs know that-- it's pretty basic.

What they don't all appreciate is how slowly most people need to go once they get below 15mg. And slower below 10mg. Snail's pace below 5mg. You have to tiptoe out of the room so you don't wake up the Wegs. :D

[JanW]

The other thing that you need to grasp is that if your body is going to be under any stress -- my surgery last month for instance -- that docs may need to offer additional steroids because your adrenals cannot ramp up to do the job to deal with the stress. I had a steroid shot for 'allergies' in September, and the ENT and rheumy calculated together how much additional steroid I would need post surgery for my body to deal with the stress. And didn't send me home with any additional, because my docs believe that the risk to me is not worth the reward at this time.

[Empty bucket]

Thanks All. My doctor always seemed happier that I was off the preds and wasn't to concered about the ctx. Actually I think the preds worked great for me but he just didn't like for me to take them. I had no side affects from them either.

[JanW]

Preds always make you feel great. It's what they do to the insides that's not a pretty picture. The risks of ctx have been pretty well established. Unless you don't respond to anything else, you shouldn't be on it for a long time.

[Sangye]

I know it does for many people, but pred doesn't make me feel great. It makes me feel weakened and depressed. Even the big hits of pred during the rtx infusions instantly made me feel awful. I've got no love for pred... no love at all.

[renidrag]

I must be very light on my feet
Dale

[jola57]

Sangye I'm sorry that you you can't get the pred benifits. I for one am grateful that pred works for me otherwise i would have no energy whatsoever.

[Sangye]

Amazing-- I can't even imagine that! It's like if someone said "Wegs makes me feel so alive!" LOL

[elephant]

Increasing the prednisone got rid of my stuffy nose and fluid filled ( feeling full sensation in the ear). Now I am sticking prednisone up my butt! Suppository hydro cortisone 25mg twice a day, along with hydrocortisone cream to those stupid hemorrhoids!!!!

[jola57]

elephant I will bet you that the discomfort you feel is far better than when not taking the suppositories, this disease makes us so sore in every place imaginable

[Lola]

[QUOTE Now I am sticking prednisone up my butt! Suppository hydro cortisone 25mg twice a day, along with hydrocortisone cream to those stupid hemorrhoids!!!![/QUOTE]

I am really glad to see my old arch enemy being stuck where the sun doesn't shine!

[Sangye]

LOL-- I'm with you on that, Lola! :D

[moyan]

I love the part of pred that I can blame everything on it: Hitting a door, missing a step etc. etc.

[elephant]

Hey Moyan, I still blame everything on Prednisone. :)

[Lightwarrior]

[QUOTE Now I am sticking prednisone up my butt! Suppository hydro cortisone 25mg twice a day, along with hydrocortisone cream to those stupid hemorrhoids!!!!

I am really glad to see my old arch enemy being stuck where the sun doesn't shine![/QUOTE]


ROTFL

[elephant]

Glad my hemorrhoids are not the size of Easter eggs!

[Sangye]

..Or Easter Bunnies!

[elephant]

Too funny Sangye. I think you would hear a very loud scream from here to Maryland. Wow! I would make national television!

[Sangye]

And you'd be pooping fluff for weeks.... :D

But really-- how are you feeling? Have you recovered from surgery?

[elephant]

I think I have. I don't really have any pain. I am still taking care of my In-laws. Father in law is mostly blind and mother in law is very weak. So I am shopping and preparing meals for them. I am cleaning and making sure my family is taken care of. It has been very stressful but what else are we going to do. So between taking care of kids, dogs and in laws ...oh yea we are taking care of a friends dog too. I am surprised I don't have a constant eye twitch.
Thanks for asking Sangye. How is your day going?

[Sangye]

Sheesh, Elephant... that doesn't sound good. I hope your in-laws can go home soon.

[elephant]

They are leaving Saturday. Hope she stays well to go home. She needs to see a Cardiologist and Pulmy for her new onset of AFib. They need to see if she has cancer in her lungs too. So I would like them to be home for all that. I talked to my mom today and I told her all the stuff that has been going on here. I really could write a book, we laughed so hard we cried.

[DEE]

elephant hope your book has some happier chapters soon :- DEEx

[elephant]

Dee, I have been told by my English teacher H.S and College that I am a creative writer, but my grammar is horrible. I actually took classes and had private tutors to help me, but it really only helped a little bit. My brain handles Math/Science, not English. I really do want to write a book some day, but I would have to have someone else edit it and comb through it and make sure it makes sense. I remember, I wrote a English paper in College and I thought it was fabulous.....Ha, Ha,....my sister took my paper and started to laugh. She said, " this is awful! You need to learn how to write! Oh, my gosh!" I felt like a piece of rat poop.
Anyways that's my story and I'm sticking too it! :)

[Sangye]

I love your writing! Anyone can fix grammatical errors, but not everyone can be a good writer. That's what editors are for!

[moyan]

Morning elephant. What the heck is AFib?

[pberggren1]

I thinks AFib stands for Arterial Fibrilation which I think is irregular heart beat.

[moyan]

Thanks Phil.

[pberggren1]

I could be wrong though. Better get Sangye in on this one.

[JanW]

I'm not Sangye, but it is atrial fibrillation.

[elephant]

A+ plus for everyone! Excellent! Thanks Sangye for the words of encouragement.
A fib is atrial fibrillation- irregular heart beat.

[pberggren1]

I might have AFib?

[elephant]

How high does your heart rate go Phil? Did you have a ECG yet?

[pberggren1]

My last ECG was backin early February before I started taking the Atenolol. I started taking the Atenolo on March 23. My bp is 120/80 now and my heart rate is about 65 to70. But I still can feel my heart beating or pulsing. I see my GP on April 6 so maybe I will sugest an ECG. I am a little worried that he will up the Atenolol from 25mg to 50mg and it will lower my bp and heart rate even further.

[elephant]

Phil your blood pressure is ok. Your pulse rate is good. I personally like to see my blood pressure around 110/70 and my pulse runs around 50-65. I start to feel my heart beat when it is around 68, especially when I am laying down. If I am busy I don't notice it too much. I don't think that your GP will increase your Atenolol. But you may want to ask if you could trial and error by taking 37.5 mg of Atenolol. Just cut the other in half. That might help bring the pulse down a little bit. You need to take your blood pressure a couple times a day to check on how your doing. I have been on Atenolol for over 20 years, and other blood pressure medicines. I have three blood pressure machines. I check my blood pressure often. Good luck Phil. Lets us know how our appointment went.

[pberggren1]

I don't even have a blood pressure machine. I go to the local pharmacy and use the machine there. Thanks for the idea of 37.5mg dose. Maybe that will get rid of the strong heart in chest feeling.

[Lightwarrior]

I don't even have a blood pressure machine. I go to the local pharmacy and use the machine there. Thanks for the idea of 37.5mg dose. Maybe that will get rid of the strong heart in chest feeling.

You can buy an automatic cuff at any drug store. They run anywhere from $25 up. I found one for $4.00 at a garage sale, so you might keep your eyes open. Maybe a second hand shop or a goodwill type of store?

[pberggren1]

Thanks LW. I will look around.

On another note: I called the CT department and asked if my Pulmo ordered contrast dye with my CT in May. They said it is up to the Radiologist at the time when I have the CT scan. I will politely refuse and explain why.

[JanW]

Phil - that's not the way I've ever had it done, here. The doc is always writing on the script -- "with cst or without cst." The radiology tech (because usually the radiologist -- a doctor -- isn't operating the equipment) just follows the prescription (exactly like a pharmacist). When I refused the contrast, which you can do, of course, they called the radiologist in so that he could read the films on the spot -- and see whether he was going to have to tell my doc that they were clear enough, or not.

[DEE]

phil i bought a bp machine and use aleast twice a day .as i find the results are a good indicator what is happening
at the moment if i have raised bp and pulse plus raised temprature i know i have to get intouch with gp or clinic
just helps you make a decision when you need to ask for help
my wg consult as me to record results as it is also an indicator as to if medication working
i still get what seems like a pounding heart and my pulse can be 90-102 usually it rights itself if i rest for awhile consults keeping eye on it .will ask the question about it on thursday
will let you know if they advice anthing different
DEEx

[pberggren1]

Thnaks DEE and JanW.

I'm sure you are right JanW. I have never heard of a tech making that type of decision. The doc that orders it always decides. I guess I will refuse when the time comes and see what happens.

[Sangye]

Phil - that's not the way I've ever had it done, here. The doc is always writing on the script -- "with cst or without cst." The radiology tech (because usually the radiologist -- a doctor -- isn't operating the equipment) just follows the prescription (exactly like a pharmacist). When I refused the contrast, which you can do, of course, they called the radiologist in so that he could read the films on the spot -- and see whether he was going to have to tell my doc that they were clear enough, or not.
Yup, same here (doc has to specify on the scrip). But I've never had a CT tech or radiologist who would deviate from the doctor's order. If I said to do it without contrast but the scrip said with contrast, they wouldn't do the CT. They page the doc and ask what to do. There have been times when the doc wrote "with contrast" but they weren't able to get an IV in me. They still wouldn't deviate from the scrip without speaking to the doc first.

[pberggren1]

Maybe when I get there and talk to the tech and they say that the doc ordered the contrast I should just go ahead with it. What do you guys think.

[Sangye]

I think if contrast isn't necessary then you should never use it. It adds to your radiation exposure quite a bit. Also, many people develop allergies to it after repeated exposure. If that happened you couldn't use it in the future when you might really need it.

Neither I nor my docs ever would have predicted how many CTs and x-rays I would need just in these first 4 years (equivalent to 3 times the radiation of Hiroshima).

[pberggren1]

How many CT's have you had Sangye? I have had about 7 or 8 I think.

[Sangye]

I've had about 25 CTs, about 50 x-rays. Most of the CTs and x-rays have been chest. One chest CT is equivalent to at least 100 chest x-rays, but could be much more.

[pberggren1]

Wow! That is alot!

Most of my CT's have been chest and nasopharynx. I have had about 10 x-rays of chest and head. Do Ultrasounds give radiation? I've had a couple of ultrasounds done of my kidneys.

[Sangye]

Ultrasounds don't use radiation, just sound waves. MRIs use magnetic fields--no radiation. Although every time I get an MRI I have major objective side effects. Supposed to be harmless!

[elephant]

I had ton of chest x-rays, and I am guessing 10 ct scans of the chest and sinuses. Pre and Post being diagnosed with WG.

[JanW]

Phil -- Why don't you just talk to your doctor and ask for a prescription without contrast. When I had my first CT of the chest done I refused the contrast because I wouldn't sign the waiver (the one where they say that I am aware that contrast can cause a sudden, serious allergic reaction resulting in death). Because I had considered myself a highly allergic person (little did I know that the symptoms I was having were WG) I said 'no way.' Because I go to a private radiology clinic, the radiologist I saw was a partner and no doubt felt empowered enough that if he could read the scan, he would just report that it was done without contrast. He in fact said, "I don't know why most docs order these with contrast -- you rarely need it for a baseline CT."

I'd never get contrast if it wasn't absolutely necessary.

[Sangye]

My Wegs doc has said the same thing. One of the only times you need contrast for a chest CT is if you're looking for blood clots in the lungs. Then it's absolutely necessary.

[eileenv]

I am like Sangye the preds are maing feel awful and am getting deppresed, i'm hoping to get my ent appointment through soon the rheumatoligist marked it as urgent i wonder if he will do a biopsy.

[pberggren1]

I forget where you live Eileen? I am going to call my Pulmo now and see if he ordered the contrast dye.

[jola57]

Phil my business partner is alergic to the dye and has her CT without. It can be done and is very safe and is just as informative for the doc.

[pberggren1]

Thanks Jolanta. I called my Pulmo and they will call me back by next week to let me know.

[eileenv]

Hi, I live in the uk, essex, don't know if you have heard of it?. Are you going to have a CT scan of your lungs?.

[moyan]

Hi all, I was diagnosed with WG after labwork showed kidneys down to 50% in 3 months. Thought I was perfectly healthy when I found myself in hospital for 2½ weeks. That's why I have been wondering if I was/am having a flare up, nothing to compare with, but wheezing, swollen feet, ear "on and off", joint pain and extreme tiredness. Nothing really alarming. Lungdoc told me at my app that inflammatory was up, so I immidiatly arranged to see the internist who has been my WG doc from start and he upped pred 20<50, imuran 100<150.
What scares me stiff is that he obviously hadn't looked at the 1 month old lab report!! Any comments?

[Sangye]

Moyan, what I've learned from my own experience and watching other Weggies is that if you suspect you're having a flare you probably are. I think it takes a lot to get us past our denial, so once we've moved into "suspicion" I think it's a red flag that we're sensing something.

Every one of your current symptoms is a sign of a Wegs flare for me. I'm especially concerned about extreme tiredness. Please don't take these symptoms lightly just because they might be less severe than your initial presentation. I did that last year, and the Wegs really got ahead of me.

Why do you say your doc obviously hasn't seen the lab report? I don't understand that part.

[moyan]

Hi Sangye, I hope you are well enuff to enjoy your days.
I don\t think he reads those reports until I get there. Shouldn't it cause some concern when infl. is up? And a phonecall or app? If I have an infection somewhere I ask the lab to write that down on report

[Sangye]

I can't tell. Some docs only call when there's something abnormal on the lab work that isn't being dealt with. It's possible that because he increased your pred and imuran, he feels it isn't necessary to have a conversation about your lab work. Maybe he already looked at it and made the dosage changes?

Did you make any progress emailing the VF to ask for help finding a Wegs doc?

[moyan]

Sorry Sangye, I must have expressed myself poorly. Once the lungdoc told me the one month old lab report said infl. up, I knew it was a flair and made at once an app with the internist and told him I want meds adjusted. Is < pred and imuran enuff?

[Sangye]

I don't know if your new meds dosages are okay, Moyan. You need a qualified doctor to decide that. To be honest, it scares the daylights out of me that you're guiding your care-- telling your docs to raise dosages, wondering if you're having a flare, etc....

[pberggren1]

Yes Eileen, I am going to have a CT of my lungs and nasopharynx.

[moyan]

Sangye, Maybe it sounds worse than it is, between the docs and here, you get a pretty good picture. Now I know how a flare approaches me, very softly, I thought it was a cat :) Only thing is, no doc here has a clou to what WG is but the ENT whom I had to cancel yesterday due to handidart and internist collision. We'll see how this works, but my intuition tells me that since I have at least 1½ months of flare, something stronger should be added. Well, I'll get a new app with ENT and hear what he has to say.
Thank you for all your time and advice, Sangye. You give me more comfort than the docs :)

[elephant]

Glad to hear that Phil that your having the CT scan of both. I wish you were having it sooner. But I know how that goes.

[elephant]

Hey Moyan, I agree with Sangye. I have been quiet about it, cause I didn't want to nag you, but Sangye is doing her job nicely.
Can the ENT call the Vasculits Foundation, since you trust him. My thoughts are on you getting better and getting excellent care for this thing called WG. :)