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Bob65
09-14-2009, 10:12 PM
Hi, my name is Bob and this is all new and scary to me.
I was diagnosed on Sept 3rd this year after about 3 months of the worse pain I have ever dealt with. I had severe swelling of the hands and feet and I thought my bones were broken. Once I was put on Prednisone, most of the pain and swelling has gone away. I hope I can get some information from the members because I don't mind saying, after reading about WG I'm scared. Thanks Bob

Sangye
09-14-2009, 11:51 PM
Hi Bob,
Welcome to the group. Many of us know exactly how that pain is. That was my only symptom for about 8 months, until I developed increasingly severe fatigue and difficulty breathing.

What other drug are you on besides pred? And are you seeing a doc who specializes in Wegs (ie not just a regular rheumy).

Jack
09-15-2009, 12:03 AM
Hi Bob,

Let us know all your troubles and we'll do our best to help. :)

Everyone's experience of Wegener's is different so there is bound to be someone who can empathise with your problems and offer advice. At least you have got past the first hurdle - diagnosis! It often takes some time and is sometimes too late. Your next step must be to make sure you have a medic that knows the disease and preferably specialises in vasculitis. He will be able to give you the correct treatment (very often not an easy task!) and should ensure a good outlook for you.

Bob65
09-15-2009, 05:34 AM
I.m only on Prednsone right now, (60mg) and I don't see my doctor again until November so I guess this is it for now. I don't have the swelling and pain anymore so I guess the Prednasone is working. My doctor seems to know what he is doing, he had me diagnosised in just 45 minutes after he saw me. He may be putting me on something else later.

Doug
09-15-2009, 06:12 AM
Bob, you also need to read up on WG. Scary as the initial explanation you get from your doctor is, the prognosis can be very good indeed if treated promptly and by doctors with experience treating WG.

http://vasculitisfoundation.com/

VF's a good starting point for learning more about the disease (their FAQ section for newly-diagnosed WG patients is very helpful) and resources available to you. Among the resources is information on doctors and institutions near you (depending on where you live!) where the best care is available.

Mayo Clinic, Johns Hopkins, Cleveland Clinic, and others post accurate, helpful facts on this disease, too. A caveat here: make sure you stay with well-known institutions' websites for information, and use that information as a basis for forming questions specific to your experience with the disease and your treatment when visiting with your doctors during appointments.

Many of us recommend making notes in a notebook about how we feel each day, any new symptoms, drug reactions, doctor's orders, in short, any and everything related to WG and yourself. Unless you have a better memory than me, the written notes prove to be very helpful during doctor's appointments and after.

As noted above, let us know your questions and concerns. Among us there are many answers to your questions.

Jack
09-15-2009, 06:33 AM
I'm concerned that you are only on steroids, this was one of the earlier forms of treatment and did not have a good success rate.
I know that I should not try to diagnose and prescribe by internet, but I think you will find that most people on this site started out on much more agressive treatment involving chemo drugs.
Do a bit of research. Read some of the diagnosis stories on these pages and prepare a list of questions for your doctor. A Wegener's flare up can occur very quickly and do permanent damage.

Sangye
09-15-2009, 06:36 AM
I agree with Jack. My first doc also dx'ed me right away (ordered an ANCA along with a full rheumy panel), but had no idea how to manage Wegs. There's a big difference.

How was your diagnosis made? What other areas are affected?

Bob65
09-15-2009, 07:26 AM
I had many blood test about 41 vials worth including ANCA which was very hight. Along with the severe joint and muscle pain I have inner ear problems PET, nose bleeds, severe sinus headaches, chest pains, and fatique. It seems it changes everyday. Most of the pain except my nose and sinuses is gone for now. I have pressure behind my eyes also that sometimes makes it diffucult to focus my vision quickly. I,m not complaining just saying what my symtoms are. I'm so thankful that the heavy duty pain is behind me. Bob

ps I had a chest X-ray and the doctor said it looked normal.

Sangye
09-15-2009, 09:34 AM
Hey, a "textbook" case! Still, some docs might have missed it, so yay for your doc for getting the dx right.

And you don't have to worry about complaining--we know you're not, and even if you want to, this is the place!

Unfortunately a chest x-ray alone will not always show Wegs activity in the lungs. When my lungs were fully hemorrhaging in '06, my x-ray looked suspicious for atypical pneumonia, but no one thought my lungs were filled with blood. And in my current flare my chest x-ray looks normal. A chest CT should be done to check for silent damage, lung nodules, etc.... If you had chest pain, you had lung involvement to some degree and this must be assessed.

Pressure behind the eyes can be due to sinus involvement, but it can also be a result of eye involvement. A CT of sinuses should be done along with the chest. A brain MRI with an orbital study is also in order, to rule out involvement with eyes.

Repeat CT of chest and sinuses would usually be done within several months or sooner if symptoms worsen.

Dumpy
09-15-2009, 11:23 AM
Hello Bob,

I to was one of those that had a diagnosis of a auto immune disease called BOOP but it was the wrong diagnosis. I was put on 40 mg pred. and did well for a while and went back to work after being off for 2 months. I felt great but little did I know that a great deal of damage was being done to my lungs and my sinuses from our BFF. After 6 months from the original diag. I went down again for anther 2 months and was finally diag. with WG.
Where I am going with this Bob is Sangye, Doug and all of the rest of us here stongly urge you to be very aggresive with your treatment before damage is done that is not reversible.
Take care of yourself and lets us know how it turns out.

jola57
09-15-2009, 01:34 PM
Hi Bob and welcome to our group. Each has their own story to tell but all share the same pain. While it is great that you were diagnosed so quickly just make sure your doc is at least consulting with a wegs specialist. Reading doesn't realy tell them much. My own physician is still very much in the dark and my rheumy is not a wegs specialist so I at times suffered for lack of attention and quickness of response to my symptoms. Don't make the same mistake as because of this my last remission lasted only 3 weeks.

Bob65
09-15-2009, 11:10 PM
Bob here,
I saw my Dr yesterday, my blood pressure was high, 190/96 pulse of 60 so he put me Diavan for that. He gave me nasal spray for my nose ulcers and put me on Mirapex for my body quaking. He has set me up for a sinuses and chest CT scan. I talked to him about the agressive drugs for my Wg and he said because of my history of going into autoamune shock, he wants to be sure my autoamune system is shut down before he starts the heavy duty drugs. He is going to be doing weekly blood test to be sure I don't get into trouble. I really believe I'm in good hands. he has worked at UC Davis Medical Center in Sacramento, Ca working with Wg. He has been practicing for 39 years and special schooling on WG. Bob

ps Thank you Sangye, Jack, Doug, Jola57 and Andrew. I relly love the input and I'm really going to enjoy this support group!

Sangye
09-15-2009, 11:21 PM
I'm glad you're in the group! I'm relieved to hear your doc has some experience with Wegs. :)

What happened to your immune system before?

Bob65
09-15-2009, 11:43 PM
I had two bouts with autoimmune problems. The first one was in 1988 I got an alergic reaction to the drug Naproxrn, I went into shock on that one and it was ambulance to the hospital, ER crash unit, adrinaline to the heart, and a blood pressure of 18. They almost lost me on that one. The last one was just four years ago. I got poison oak in my blood stream and it took adrinaline again to save me. I don't believe any of this had to do with WG but I have a very hair trigger immune system so the Dr wants to be careful.

Sangye
09-16-2009, 12:09 AM
Wow-- that's pretty scary stuff! Glad your doc is being careful.

Jack
09-16-2009, 01:30 AM
Be careful with nasal sprays Bob. I had some bad experiences with them in the early days and ended up worse than when I started! I found that I had to be very gentle with my nose and could not tolerate anything more than saline. The good news was that this worked very well indeed.

Doug
09-16-2009, 02:59 AM
Glad to hear you have a WG specialist on your case, Bob! Once again, a weggie proves there is no such thing as a "typical" case of WG. :)

Bob65
09-17-2009, 05:38 AM
Bob here,
I hope I'm not over stepping my bounds with all of these post. This is all so new to me and I have so many questions and concerns.
I'm having my CT scan of my sinuses and lungs tomorrow morning. I have been having chest pains so I'm anxious for this test. I will be going on the hard drugs on Sept 24th. The Dr is very sure my immune system is shutting down as it should be. Last night I had my first attack since I went on Prednisone (60mg). The attack hit my upper right arm and shoulder. It my left arm next and then my left hand. I didn't get any swelling to speak of but the pain was intense but not as bad as it was before Pred. I was reading yesterday about the side effects of Pred and noticed weight gain was a big part of it. I gained about 3 pounds after two days of Pred, I had not changed my diet so I knew it could not be fat gain. After 5 days of Pred my blood pressure went off the scale (190/96), I called my Dr and he put me on Diavan 160mg per day. After just 3 days my blood pressure has dropped to about 153/86. I know that is still high but it is a lot better. The big deal is though that I have dummped all of that water I was retaining and I lost the entire 4 pounds. The thing I'm getting at is one of the side effects of Pred is hight blood pressure, maybe ask your Dr if you can tolerate blood pressure meds and it may dump the water. The other half of this story is that Prednisone must mess with the sensors that tell your brain you are hungry. I finish a meal that I use to feel full and I still feel hungry. My cure for this is I look at the portion on my plate and if it is what I have always eaten, I eat it and leave the table. I think in time my brain will start understanding this, maybe not.
I coughed up blood for the first time this morning. It was light red so I'm sure it is coming from my sinuses. I have had some miner nose bleeds also. The good news is, even with all of this going on, I still feel 200% better than I did before Prednisone.
OK, I have rambled enough. Everyone hang in there, I care for all of you!
ps. Should I be moving off of this introduction section now? I don't want to lose your replies.

Luce
09-17-2009, 07:13 AM
Bob, relax! Say what you want, where you want - we're just interested in your story, not where you post it.

High blood pressure is a common side effect of the Pred unfortunately and a lot of us take BP meds. Also we all despise the weight gain associated with Pred, and although I think your will power to not eat any more is amazing and will certainly limit the weight you gain - Pred changes your adrenals and makes your body store more fat, particularly around your middle even if you food intake does not really increase.

You have discovered the love-hate relationship we all have with Pred - it works wonders to reduce inflammation but the side effects are downright mean!

Doug
09-17-2009, 08:30 AM
Yeah, Bob! You'd have to work very hard to screw up on the forum. The more you are on it, the more you'll find it is informal.

The main concern is that you ask the questions you have. If you don't find a link that matches your concerns by hitting the Quick Links icon above, you may have to start your own. The answers will follow your questions, no matter where you post them (I, personally, am a terrible offender when it comes to staying on topic, so, while I don't recommend you follow my lead, know that you won't be the first if you stray!)

The high blood pressure is typical, I'm afraid, when you go on Prednisone. Doctors will prescribe medications to control it, as they see fit. I used to have low normal blood pressure, now it is high normal. The farther I get from the onset of WG, its treatment, then the end of Prednisone, the more my blood pressure has dropped. I don't know that I will ever return to low normal. I hope not, actually because you can run into problems there, too. All I'm on now is Furosimide because I have some residual kidney issues, with fluid retention.

Bob65
09-17-2009, 08:35 AM
Doug,
thanks for the thread on adding a profile picture, I just added so now there is a face with the words Thanks again

Bob65
09-17-2009, 08:38 AM
Doug,
My picture shows up in my profile but it did not get sent with the posting. BOB

Doug
09-17-2009, 08:40 AM
My pleasure! It does help to sort weggies out, not to mention add interest to their stories when they post photos or upload an avatar.

You do know you can create photo albums on the forum, too, if you want to upload photos of family, pets, whatever interests you? It's on the righthand of that same "page" where you upload your avatar. I have a few uploaded. Lisa Coffeelover and Georgia have some. Jack has some of his lovely dogs! I think there may be others. Unless they tell you in a posting, you just have to muck around until you locate them! Enjoy!

Sangye
09-17-2009, 08:45 AM
LOL-- Bob, any time you're worried about over-posting, just look at the number of posts I've made! I'm almost at 1,000!!

And please don't worry about going off-topic. It's good if you can start a new thread if you start a very new conversation topic (makes it easier to find it later), but no one here will throw tomatoes at you if you don't. Surely you must have noticed that we all go on for PAGES about rabbits, deep-fried Mars bars, whatever. And we're not the least bit embarrassed about it! Just join in and enjoy yourself. :)

Pred...that stinkin' drug. It causes you to gain fat and lose muscle, as well as retain water. Especially when you're still on higher doses, it's often necessary to take meds to control bp. It can also make your blood sugar go high (called "steroid-induced hyperglycemia"). Both are usually temporary. Pred definitely sends false info to the brain's satiety centers. So not only does it say "Eat more" but it also says "Eat more fatty foods." :cool:

Doug
09-17-2009, 08:47 AM
Doug,
My picture shows up in my profile but it did not get sent with the posting. BOB
Apparently you did something right!- there it is!

RCOSSIO
09-17-2009, 11:09 AM
Bob..as you will see...we have more pictures of animals as part of the members avatar than you can imagine. Beside the loonies you will meet in this forum, your new BFF (Best Friend Forever) that is Wg for you Bob..you will also notice how sad some of us are because of the weight gain...yes I gained 15lbs (imagine that).

So Bob welcome to our group...lots of information and lots of "locos" as well. Except for me of course..I am the only one sane around here. :eek::eek::eek:

P.S. Remind me to tell you about "Escape the Room and bunny paella stew" it is for the locos man!!!!

Doug
09-17-2009, 11:16 AM
(no, Bob, I'm the only sane one in the asylum- don't believe Richard!):rolleyes: Incidentally, I just remembered to edit my avatar- thanks for mentioning Prednisone, Richard!

RCOSSIO
09-17-2009, 11:21 AM
bob by looking at Doug's new picture...exactly enough said he is loony too..hahahhahaha

badaboom I will be here all week...try the veal!

Doug
09-17-2009, 11:24 AM
Aw! Now my feelings are hurt!:(

RCOSSIO
09-17-2009, 12:48 PM
feelins...
nuthin more than feelins
trying to 4get those ugly shirts of ....

"well I guess I will never be able to sing"

Doug
09-17-2009, 01:26 PM
I'm blessed with something between a frog croak and a donkey hee haw for a singing voice, most distressng for someone who loves opera!:mad:

Sangye
09-17-2009, 11:14 PM
Love the new avatar, Doug. But c'mon you guys, we all know Jack is the only sane one on here. :cool:

jola57
09-18-2009, 01:53 PM
Jack/John sane, which one?

Doug
09-18-2009, 02:40 PM
The Birmingam one. No, no, the guy who lives in Liverpool with Sue. Or was that the one in Birmingham who lives with Sue.... Oh, hell, we'll just give them both credit for being sane, and divide them by two!:rolleyes:

crackers
09-18-2009, 06:59 PM
jack is the sane and sensible one, according to sue anyway.
john

RCOSSIO
09-19-2009, 09:30 AM
As usual....I can see the loonies are in full force. Ok lets see we have an astronaut..not knowing which Jack or Jill to see; we have a man covering his face with an orange :Body By Prednisone" shirt, another one with a German Shepard another one with two dogs looking out in the wilderness and finally a bunny on pred.

As u can see the "Cuban" coming in at 6'4 and weighing "after pred" 250 pounds..the man...the loco of locos....and yes the only sane individual Latino in this Forum!!!!!

nevertheless...even though we should lock them up in Bellevue...I LOVE EVERY SINGLE ONE OF THEM HERE...AND CONSIDER THEM ALL AS GOOD FRIEND'S. :):):):)

Thinking about a new Avatar...time for a change.

crackers
09-19-2009, 10:45 AM
can't wait to see it richard.
ps nothing too sensible i hope.
john.

Sangye
09-19-2009, 10:46 AM
I like your avatar, Richard. It always looks like you're laughing, so it's easy to picture you as "the loco of locos."

Doug
09-19-2009, 12:43 PM
This is your chance to break out of your shell, and join los locos!:D:p

jola57
09-21-2009, 02:20 PM
No need to change the avatar I would miss the handsome mustachioed hombre

Doug
09-21-2009, 04:03 PM
Yes, tall, dark & mustachio'ed! Watch it Richard! I think you have a fan!:)

RCOSSIO
09-22-2009, 11:28 PM
I should have been a rockstar...thanks Jola...u made my day!

jola57
09-30-2009, 01:01 AM
You're Welcome

Doug
09-30-2009, 01:25 AM
Jolanta- your first fan! It's that Latin mystique every time that gets the ladies!:):p

jola57
09-30-2009, 02:55 AM
Sigh!!!!!!