New old guy on the block

Hello Everyone,

My name is Pete Schaeffer. I live in suburban Columbus, Ohio. I'm 65 years old and was diagnosed with WG in January 2011. The disease presented with a persistent ear infection (and has pretty well clobbered the hearing in my right ear), night sweats, a dry cough, and loss of energy/appetite/weight (lost 25 lbs at onset). Fortunately, my docs said I had "mild WG" as there was no kidney involvement and the lungs and sinuses have pretty well cleared up since treatment began.

Prior to diagnosis, I was leading an active life. I swam and walked for fitness daily - swimming 1,500 meters in 40 minutes twice a week and walking 3 - 4 miles in 45 - 60 minutes the other days plus lawn work and helping my wife with housecleaning.

I got into remission last summer (and regained all of the lost weight - unfortunately as belly fat!). At that time, my WG meds were 100 mg cytoxan/day, 40 mg prednisone/day, and 1/2 bactrim tab/day.

In January, I had a flare that I think resulted from too quick a decrease in prednisone coupled with a change from cytoxan to immuran. I was sick for another six weeks. Being retired has made this a little easier to deal with as I have no pressure to get back to work. My wife is content for me to recover at my own pace and not overdo things.

I'm on the mend now. Back to 100 mg cytoxan/day, 20 mg prednisone/day, and 1/2 bactrim/day. My last CT scan of my chest was pretty much normal. Blood work showed blood in the urine. Doc is now worried that cytoxan is causing some side effects in my bladder, so I'll see a urologist next week. Hope it's just a UTI that failed to respond completely to treatment, but we'll see. It's just annoying to have to pee every 30 - 45 minutes.

I am resuming my fitness activities, but will have some work to do to get back to where I was before WG onset. I'm optimistic that I'll get there. I've learned that this disease is very subtle in presenting flare ups. I let the one a couple of months ago go for a few days before I realized what it was. By then, I was getting pretty sick, and it took awhile to get straightened out.

I am being treated by Dr. Matthew Exline of the Lung Institute at the Wexner Medical Center at The Ohio State University. I spent a week in University Hospital in January 2011 while being diagnosed. Was also seen by infectious disease specialists (who thought I might have TB) and a nephrologist (who ruled out kidney involvement).

In summary, I'm grateful for the shape I'm in. I've read many other posts from people who are a lot sicker than I, and my heart goes out to them. I hope that more can be learned about effective diagnostics and treatments to minimize the suffering of those afflicted with this strange disease.

Best of luck to all.

Hi Pete.

Welcome to this forum though I'm sorry you have a need for it. I have no information to offer. We are brand new to WG. We have 5 children (15 yog, 13 yob, 12 yog, 8 yob and 5 week old girl) Our 12 yo daughter was diagnosed in early Feb. so we are still learning all about WG.

Like you, my daughter was very active prior to WG. She plays soccer and in Jan just finished the course (and passed) to be a certified soccer ref. She's hopeful she'll feel up to working a few games before the end of spring soccer.

It's wonderful to read that you have a loving and supportive spouse. I'm sure that is a huge blessing as you recover.

Thanks Pete for your Story....
I haven't been dx with WG yet, but i do have all of the tell tale signs, such as joint pain...eyes and ear problems, ....Going to see my rhumatogist on Tues...and hopefully someone will listen... Went to the Emergency ward on Friday, asking them to check my kidneys, and they did find traces of blood in my urine, and told me that i didn't have WG, and guess after me telling them to check for WG, they said i didn't have it.... I asked how they could be sure, when it seems to me based on all of these stories, that most dx are done by biopsy, and the other tests that i am sure that they haven't done... They did say my lungs were clear and blood was fine... besides the blood in the urine.... I thank God this group for if i hadn't found this group, i am sure i would have gone insane, meaning there is hope,....... Thanks Pete for your story, i do appreciate them .... will follow up with everyone , once i see the specialist ,, Any advice that you can give me to ask my Dr... i will tell my story, on how i believe that i have this,,, but i have written it 3 times already, but this darn computer, if i hit the Cap key, it deletes it all...and frankly, who has that much time.. Have a wonderful day.... thanks again

Hi Isabella,

The test you didn't mention is the one that led to my diagnosis: the ANCA blood test. I had both a bronchoscope and a nasal biopsy that showed evidence of granulomatosis, but the ANCA test took away other possible diagnoses.

Good luck!

Hi Pete. Good to hear that you do doing so well. Major organ involvement is boring--or, I should say, over-exciting. Keeping in shape does help one's overall heath, even when there are these, er, "anomalies". I hate to tell you, though: It is hard to regain the muscle mass while on prednisone--especially at our age (I'm a couple of years younger, but sor of in the geezer class). Bladder problems with CYX are common, and potentially serious. Please do check into this and get all the details.

I'm not sure about your Cap Key issue, Isabella, though there is some unknown key that I have hit accidentally once in a while that makes everything go away. Sometimes, a simple "UNDO" gets it back. In any case, I have taken to, periodically doing a COPY ALL, especially with longer posts. We'd love to hear your story, in any case. I'm thinking the same thing as Pete: How, in fact, did they rule out WG? Many Weggies do not have lung involvement, and any blood in the urine is not "fine". It can be UT related, or kidney related, and it is important to know which.

Al

Welcome, Pete. I'll be 60 this year so am knocking on the door to "geezerhood". (I'm not sure a woman can be a geezer, so maybe I'll be an "old bat" instead.) I was dx'd in April 2011, and my case sounds similar to yours, starting with a persistent double ear infection in Oct. 2008. I was not as physically active as you, but that doesn't seem to make a difference; Wegs can strike anyone. I haven't been declared in remission but feel I'm close. I'm still on CTX but it's being tapered instead of moving me to a milder drug, and that seems to be working OK at this point. I'm on 10mg. prednisone and Bactrim DS 3x/wk. My original ANCA reading was very low. My dx was by nasal biopsy. No kidney involvement or bladder problems so far. Everyone's case is a little different. If you have to have Wegs, I'm glad you found us, and hope you continue to post on a regular basis. This forum became a big part of my daily life even a month or two before I started posting. I hope your latest flare up continues to be quelled, and that the blood in urine and any bladder problems or possible kidney involvement are dealt with before they become very serious.

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Originally Posted by annekat

(I'm not sure a woman can be a geezer, so maybe I'll be an "old bat" instead.)

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Old geezers & bats...OMG! Anne, don't make me laugh...I start coughing!! LOL!

And welcome Pete...I am in pretty much the same boat as you, even the supportive spouse! I just was declared in remission this last week...yea! But I know the journey has just begun, and like you, I hanker to get back into good shape (am a golfer in the desert), so now moving to next step to decrease pred to non-existence! It will always be something, but, as we all are, am determined to keep the boat afloat! Best of luck!

Geezers and bats? ("Geezettes"?) You see, Pete, we Weggies have a sense of humor that is startling, convoluted, and even out of control. We will giggle, titter, chortle, and wheeze at the darndest things. They sy that laughter is the best medicine, but I think it is more complicated that that. I think the therapeutic part comes in the execution: Sort of like, if we can elicit a "spit take", as they call it in Hollywood, we win. Congratulations, Anne! I would love to have seen Don lose his soup!

Al

Al, I like "geezettes"! It sounds graceful and glamorous, sort of like "gazelles". Yes, we weggies do grasp at straws for entertainment and humor!

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Originally Posted by annekat

Al, I like "geezettes"! It sounds graceful and glamorous, sort of like "gazelles". Yes, we weggies do grasp at straws for entertainment and humor!

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I'm only 56, do I have to wait four years to be a geezette? Can't you make an exception? Maybe I can be a geezette in training? (LOL)

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Originally Posted by Lightwarrior

I'm only 56, do I have to wait four years to be a geezette? Can't you make an exception? Maybe I can be a geezette in training? (LOL)

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We can make an exception for you, Lightwarrior! You are an honorary geezette.

I wonder if Pete thinks the humor on here is one of the symptoms of WG!!! LOL

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Originally Posted by Dirty Don

I wonder if Pete thinks the humor on here is one of the symptoms of WG!!! LOL

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Maybe it is!

Pete, welcome to one of the worlds most exclusive of clubs, you are now officially a weggie! I will apologise for the level of humour on this site, it is either a result of our wonderfully exciting disease or it is a side effect of the many facinating drugs we take.

Jim

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Originally Posted by blessed2bamommy

We have 5 children (15 yog, 13 yob, 12 yog, 8 yob and 5 week old girl)

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blessed2bamommy, I am disgusted to see you have raised two yobs! I hope this is a linguistic error on your part, as in Britain a yob is defined as:-

"a teenage hooligan, vandal or loafer"

But then again you know your children and you might occassionally think that is true. :smile1:

Jim

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Originally Posted by Isabella1759

.... I haven't been dx with WG yet, but i do have all of the tell tale signs .....

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I am sure Isabella you know the old saying "if it looks like a duck, waddles like a duck, swims like a duck and quacks like a duck then it is probably a duck". Having said that I, and I am sure the rest of us, will be interested to see what your rheummy says next week, do please keep us updated on your condition.

Jim

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Originally Posted by Al

Geezers and bats? ("Geezettes"?)

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I love your new word Al. It is right in keeping with the word "ladette" coined a few years back to describe young females who imitate their male counterparts. The Concise Oxford Dictionary describes it thus:-

"Young women who behave in a boisterously assertive or crude manner and engage in heavy drinking sessions."

So if young females can be ladettes why should their more mature sisters not be geezettes? Perhaps yoiu should write to the Oxford Dictionary and make that suggestion?

Jim

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Originally Posted by Dryhill

blessed2bamommy, I am disgusted to see you have raised two yobs! I hope this is a linguistic error on your part, as in Britain a yob is defined as:-

"a teenage hooligan, vandal or loafer"

But then again you know your children and you might occassionally think that is true. :smile1:

Jim

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Oh that is funny. Sorry yob stands for "year old boy" and yog stands for "year old girl" So I have a 15 year old girl, 13 year old boy, 12 year old gir, 8 year old boy and 5 week old girl.

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Originally Posted by blessed2bamommy

Oh that is funny. Sorry yob stands for "year old boy" and yog stands for "year old girl" So I have a 15 year old girl, 13 year old boy, 12 year old gir, 8 year old boy and 5 week old girl.

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What did I say about Weggie humor? And all this from Pete's thread. title. Blame Pete--yeah, that's the ticket.

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Originally Posted by annekat

Al, I like "geezettes"! It sounds graceful and glamorous, sort of like "gazelles". Yes, we weggies do grasp at straws for entertainment and humor!

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Gazelles and Geezettes? Sounds like a Pillows song--Geezette/Gazelle City:

Come on, sunshine
Let’s be off
Come on, sunshine
I’ll walk your home
Come on sunshine
Let’s be off
(But Maybe I’m sleeping yet)

Actually, maybe this makes sense on other levels as well...

Al

Yes, Jim. Given the right encouragement, women can be as despicably obnoxious as the guys, though one gets the sense that they have to work at it more (for us, it just seems to flow more naturally. For the gazelle, it doesn't really matter whether the lion is a male or a female, except to note that the female is invariably the better hunter. I think, though, that Geezettes do not have to engage in heavy drinking sessions. Geezerhood, whether male or female, is a state of mind--a kind of spry curmudgeonry.

Al

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Originally Posted by Al

Geezerhood, whether male or female, is a state of mind--a kind of spry curmudgeonry.

Al

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The Rolling Stones are often called geezers, which they are. That puts us in pretty good company. And yes, "spry" is a fitting adjective.

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Originally Posted by Al

What did I say about Weggie humor? And all this from Pete's thread. title. Blame Pete--yeah, that's the ticket.

Gazelles and Geezettes? Sounds like a Pillows song--Geezette/Gazelle City:


Al

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Who are The Pillows, Al? Not familiar with them.

I hope we haven't scared Pete off....

The humor is great - if slightly odd. I love it. Blame me for it. I have broad shoulders. Didn't someone once say that laughter is the best medicine???

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Originally Posted by Pete

The humor is great - if slightly odd. I love it. Blame me for it. I have broad shoulders. Didn't someone once say that laughter is the best medicine???

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Glad you are back, Pete! I know that Reader's Digest had a "Laughter, the Best Medicine" feature, and it sort of sounds like something Art Linkletter would say, too. Yes, we Weggies are odd, and the humor reflects that.

Hi Pete, glad you found our group. It's good to hear that you're on the mend and making steady progress. I'm gonna be a wet blanket and interrupt all the jokes to say that since you're in Ohio, I recommend you go to Cleveland Clinic's Wegs specialists. Many people don't think it's important to get a Wegs doc involved, especially if they're doing okay so far with local doctors. But I can tell you from personal experience that just one complication can turn any case into a nightmare scenario and that won't be the time to go doctor shopping.

Alright then, my work here is done. As you were. :flapper:

Oh, we've probably had enough jokes for now. Pete, you are lucky you are located near Wegs specialists. Many of us aren't so lucky.

Hi Pete Glad wgs hasn't effected you to badly still it has effected you in some degree , All the best xx

Tomorrow is the day, (seeing specialist) I know being positive is one of those things that will make my journey easier... But i am feeling sorry for myself, can't stop thinking how, or why, or what i did or should have done... having a hard time at work, where every one is grumbling about their work day, and they have no idea, what is going on in my life... I want to scream, and say, I wish i had ur ^&*&^ problems.. but no , instead i bit my lip from starting to cry, and i take my next call.... i am scared, and to deny that , It would be a lie///Sorry, i felt in any one has every been in my shoes, I am sure you've all tried them on once or twice... thanks for listening... isabella

Welcome Pete. Sorry you had the need to find this forum but so glad you did.
I agree that laughter is the best medicine ........ or if it's not really, the taste is way better

Isabella, I hope you find the answers tomorrow at your rheumy appointment.
I pray that you do not have WG but it would be good to actually have an answer.
I used to bite my tongue around my co-workers, you know those ones .....the ones that can't come in to work because they stubbed their little toe and it hurts to walk, or the ones that have a blocked nose ......... no worse, the ones that have a nose that wont stop running and they need to keep blowing and complaining at the same time.
These days I just say "I'll swap with you" or "welcome to our world".......they soon understood what I mean.

Take care both of you and remember to .........

Hey Pete. I'm just North of you in Delaware, well depending what suburb you live in. I'm going to second the suggestion of the Cleveland Clinic. That said OSU is a great hospital as well.

One question...is that 100 mg of CTX a day? That seems high to me.

100mg of ctx is not high. I was on 150 when I was first dx.

Hi Bob,

I've been at 100 mg of Cytoxan for over a year except for about a week when I was on immuran. I had a flare while on immuran which may have been aggravated by a simultaneous reduction in prednisone dosage. Went back to square one with meds and am now gradually tapering off pred - down to 20 mg/day with no adverse effects so far. Will go to 10 mg in two weeks and stay there until mid-May. If that continues to go well, we may explore reducing cytoxan to 50 mg/ day.

Seeing a urologist next week to see if cytoxan is messing up my bladder. May require another med change unless the issue is a UTI that wasn't completely killed with the first round of antibiotics.

I agree with the praise given to Cleveland Clinic. I probably would have ended up there had we not moved away from Massillon a month before I got sick. I'm happy with the care I've gotten at OSU though.

Ah, ok you know I think I got my MTX and CTX dosages crossed in my head :) MTX was the once a week one I think.

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Originally Posted by mishb

....I used to bite my tongue around my co-workers, you know those ones .....the ones that can't come in to work because they stubbed their little toe and it hurts to walk, or the ones that have a blocked nose ......... no worse, the ones that have a nose that wont stop running and they need to keep blowing and complaining at the same time.
These days I just say "I'll swap with you" or "welcome to our world".......they soon understood what I mean.....

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Ah, Michelle. These days, I find it easiest just to say, "Well, we continue to live and breathe." I sometimes add, "...which is a great start." This seems to be enough.

Al

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Originally Posted by Al

Ah, Michelle. These days, I find it easiest just to say, "Well, we continue to live and breathe." I sometimes add, "...which is a great start." This seems to be enough.

Al

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Great line Al. especially the second bit. I must try it out sometime, or have you put a copywrite on it?

Jim

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Originally Posted by Dryhill

Great line Al. especially the second bit. I must try it out sometime, or have you put a copywrite on it?

Jim

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I wish I had a dollar for every "bright idea" I've ever had, Jim. I might be able to buy a cup of coffee--hardly enough to involve a patent lawyer....

Al

Hi ..Went to my rhemy on Tues, did a bunch of test, and was told to come back in a mth, she also started me on 50 000 units of vitamin D, Went to work yesterday, and had a small lunch and started to feel pain in my stomach, which as time went by , really hurt..So i check it out at the hospital and was dx with after blood test and urine and CT, Diverticulosis and urine infection, probaly cause by the Diverticulosis, also they gave me a note to give my GP that my Aorta demonstrates dense atheromatous calcification... they have me on antibiotics, and i feel like ****( no pun intended).. and this my be just the start... Has anyone had any of these problems before or after being dx with WG? Thanks for listening... Have a good day, and blessing to you all!

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Originally Posted by Isabella1759

Hi ..Went to my rhemy on Tues, did a bunch of test, and was told to come back in a mth, she also started me on 50 000 units of vitamin D, Went to work yesterday, and had a small lunch and started to feel pain in my stomach, which as time went by , really hurt..So i check it out at the hospital and was dx with after blood test and urine and CT, Diverticulosis and urine infection, probaly cause by the Diverticulosis, also they gave me a note to give my GP that my Aorta demonstrates dense atheromatous calcification... they have me on antibiotics, and i feel like ****( no pun intended).. and this my be just the start... Has anyone had any of these problems before or after being dx with WG? Thanks for listening... Have a good day, and blessing to you all!

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A couple of questions, Isabella. How did they determine diverticulitis? Did they already know--say from a previous colonoscopy? or are they just guessing? Also, how did they know about the plaques? Ultrasound, maybe, or a CT scan? atheromas are sort of like granulomas, in that they can include immune complexes (with moribund macrophages and such), but are not generally associated with WG. Urine infections should not normally cause urinary tract infection, though if a diverticulum ruptures, that is indeed serious and likely associated with abdominal infection, but almost surely a separate issue for vasculitis. (There are, however, some kinds of gut vasculitis, which are as serious as WG.)

Please let us know how these matters get resolved.

Al

Thanks Al
No never had a colonoscopy yet, did one of those scratch test things that the Canadian Colon Association sends you when you turn 50, ( 2 years ago)and it came back neg. They did did a CT , urine and blood work last night, and send me home w prescription in hand, after dx Diverticulitis, and the other things I mentioned ... Al, Not sure what you mean by guessing.. The CT showed the rupture, among other things... I did read up about Diveticulitis, and they way the Dr. made it sound, it's pretty common.... Not sure what he meant by that, What I read that it happens to ppl with poor diets and older Adults... I haven't ate meat in over 1 year, except the odd fish/chicken, eat loads of veggies, and fruit, quit smoking, 6 mths ago... and exercise. And you know what, I've never felt this terrible in my life, .. Maybe my earlier life style is catching up.... hmmmm? thanks Al...

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Originally Posted by Isabella1759

Thanks Al
No never had a colonoscopy yet, did one of those scratch test things that the Canadian Colon Association sends you when you turn 50, ( 2 years ago)and it came back neg. They did did a CT , urine and blood work last night, and send me home w prescription in hand, after dx Diverticulitis, and the other things I mentioned ... Al, Not sure what you mean by guessing.. The CT showed the rupture, among other things... I did read up about Diveticulitis, and they way the Dr. made it sound, it's pretty common.... Not sure what he meant by that, What I read that it happens to ppl with poor diets and older Adults... I haven't ate meat in over 1 year, except the odd fish/chicken, eat loads of veggies, and fruit, quit smoking, 6 mths ago... and exercise. And you know what, I've never felt this terrible in my life, .. Maybe my earlier life style is catching up.... hmmmm? thanks Al...

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Good that you/ve cleaned up your act, Isabella. Sorry that the earlier problems have come back to haunt you. Ruptures do happen though most of the time diverticulosis is asymptomatic. Usually, gastro docs recommend high fiber diets for diverticulosis. The fruits and veggies are a good start....

Al

My gosh Al ,you are so knowledgeable..I should just come see you instead all my docs , you seem to know alot more than they do !!!

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Originally Posted by Debra C

My gosh Al ,you are so knowledgeable..I should just come see you instead all my docs , you seem to know alot more than they do !!!

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Actually, Debra, no.

Doctors, for the most part, are quite knowledgeable. My beef with the medical pros has nothing to do with their intelligence or experience--which is far greater than mine, but that the intelligence gap is 1) perpetrated, taken for granted, and, often, even celebrated; and 2) it encourages and perhaps requires a specialist system that gives short shrift to a full and detailed understanding of a real patient's situation. In other words, the dynamics of being a doctor these days make it hard to spend a lot of time thinking about individual patients. They simply cannot take the time for detailed work, or to bring the patients fully up to speed concerning their ailment. So they fall into saying the easy and platitudinous things.

Al

I've just noticed something. I tapered down to 6 mg/day of pred this past Saturday. Finally, my appetite has returned to something more like it was before dx. I haven't had an evening snack since Monday. Hope this along with continued exercise will finally help me lose some of the "pred pounds".

Methinks I spoke too soon. This morning I feel achy, having some light chills, and general fatigue. Waiting for Dr. Villa Forte to return my call.

This may be a stupid question but how does one know when they are generally having a flare or just being "plain" ill ?

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Originally Posted by Debra C

This may be a stupid question but how does one know when they are generally having a flare or just being "plain" ill ?

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Some times you don't. Lab work helps as does hind sight as you build your history of managing your treatment. Flares could get worse unless treated and other illness tends to get better or go away without any extra treatment for GPA. Sometimes your residual symptoms ebb and flow especially when tapering meds and you can just wait them out. Flares and infections often go together for me but doctors don't know if the flares cause the infections or the infections cause the flares or if they just happen to occur together.

Paying attention to your individual history helps you learn how your body reacts to things. But don't assume it will always follow the same patterns as before. That is how some people end up dead because things can change quickly into something new and something serious. It is always best to review any changes and especially new symptoms with your trusted doctors that seem invested in your good health. I don't think you can always tell the difference between a flare and being sick or having symptoms for other reasons and I have pondered over this issue twice this month and so far it looks like my symptoms are not Wegs yet. Last month the flu shot gave me symptoms that made me ponder this question.

Stay tuned in to your body and heed your gut instincts.

Got to feeling better as the day progressed. Spoke with the doc, and she thinks I have a virus. Feeling close to normal now, so will gently ease into the planned festivities of my day.

Dr. Villa Forte was glad I called. I'm supposed to call her back on Monday to let her know how I'm feeling. I think she subscribes to the better safe than sorry school of thinking about when to call about possible flares.

Thanks to all for the encouraging words.

I caught bronchitis in Feb. Was scared to death it was a flare with all the WG coughing and stuff I do anyway. Rheumy was very controlled and calm, sent me to my internist...it WAS bronchitis, cleared up in 7 days with meds...sheesh. But, one can, nor will I ever, not ignore anything that comes our way...as your doc says, better safe than sorry. Best of luck!

I had a moderate cold recently, my first "bug" since WG dx in April 2011. I could tell the difference. 3 days of mild but persistent sore throat followed by heavy coughing and extra nose blowing. I know others who had it around the same time. It went away before long but I think it stirred things up a bit, as I'm still coughing and feeling out of sorts, but it gets better every day and now just feels like WG. There is more blood in my nose than before, which concerns me. I will be getting blood tests and a chest xray in a couple weeks and will talk to the doc about it then.

Hi Anne,

Glad to hear you're feeling a bit better, but worried about the continuing wegs symptoms. Any chance you could get labs and the chest x-ray sooner before the symptoms get worse?

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Originally Posted by Debra C

This may be a stupid question but how does one know when they are generally having a flare or just being "plain" ill ?

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I don't think this question is stupid at all. I'd like to know the answer(s), but if they're not forthcoming, I guess I'll call my wegs doc for guidance.

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Originally Posted by Pete

I don't think this question is stupid at all. I'd like to know the answer(s), but if they're not forthcoming, I guess I'll call my wegs doc for guidance.

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I don't think it's stupid either! I just don't think there's a definitive answer to it, except getting tested to see if your inflammation markers have risen, etc. Otherwise, it's just intuitive... you are familiar enough with your Wegs symptoms that you get a sense of whether what you might be flaring or just have a bug, or both.... the worse you feel, and the longer you feel that way, the more chance you are flaring, I guess.... and a bug can trigger a flare.

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Originally Posted by Pete

Hi Anne,

Glad to hear you're feeling a bit better, but worried about the continuing wegs symptoms. Any chance you could get labs and the chest x-ray sooner before the symptoms get worse?

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Thanks, Pete! I'm actually feeling better, though I'm still coughing, but I was before the bug anyway. The blood in nose could be partly from the onset of winter and dry, cold weather or use of wood heat. I'm not in remission so still expect to have symptoms. Since I feel better, I think I'll wait until my scheduled appointment.

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Originally Posted by annekat

Thanks, Pete! I'm actually feeling better, though I'm still coughing, but I was before the bug anyway. The blood in nose could be partly from the onset of winter and dry, cold weather or use of wood heat. I'm not in remission so still expect to have symptoms. Since I feel better, I think I'll wait until my scheduled appointment.

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Residual symptoms like some coughing, mucous running down the throat, bleeding in nasal passages can all happen at times even when you are considered in a drug induced remission according to my doctors. Being in a drug induced remission means I am considered stable enough so no additional treatment is needed beyond my regular maintenance meds and treatment regime. Damage to sinuses and resultant excess mucous down the throat is considered a very common sign of Wegs damage to sinuses just like many of us having hearing or vision loss, kidney or lung damage etc. For me the excess mucous leads to some coughing at times and can also affect my voice but I don't usually need any extra treatment unless i get a cold and it turns into sinus infection or bronchitis or both. Changes in humidity seem a big factor for me and when the furnace or heating systems start up in Fall and when the air gets drier these symptoms greatly increase. Using an humidifier and more nasal rinses helps me. Allergies to dust or other things also increase these symptoms for me.

I came down with my first cold in months and needed to also add some generic Muccinex to thin the mucous and help me cough it up. So far I think I will be able to beat the usual bronchitis this time. The soreness and hoarseness has disappeared and my coughs are more productive.

drz, that all sounds like the stuff I'm going through, and though no one has said I'm in any kind of remission including drug induced, I think I may be close to that. I know I have significant sinus damage and expect to be dealing with its repercussions from now on. I also had that cold recently and have also started the generic Mucinex again, which I previously took daily for a couple of years and only stopped a couple months ago to see if I could do without it. I think it is good stuff and haven't heard of any side effects or dangers. I do know it works better if one drinks plenty of water while taking it. I think there is less to cough up than there was, but I still have a sort of raw irritated feeling in my throat and windpipe which can lead to some dry coughing. Sounds like the same old Wegs, just maybe stirred up a bit by the cold I had. I am just a bit worried about tracheal stenosis since I've read about it on here and think I'm a possible candidate for it.... I plan to bring that up with my doctor on the 29th.

hi my name is crissie. Im the supportive wife of dennis wegs patient.. We are pretty excited today, yest told by hes specialist rhemu that hes finally in remission after 15 months of treatment.4 infusions of rtx has worked and 1 infusion of cortisone. unfortunately ctx made dennis develop lymphopenia in august 2012, it took 2 months of negioting with specialists and govt for the rtx treatment. he is in consolidation period now 100mg of immuran 10mg of cortisone bactrim fosamax vit d and caltrate. he had major sinus issues with granulomatsis of the lungs aug 2011.I just want to thank everyone on this site without your support and knowledge we were completely alone here in australia No support networks at all.
:hug3:

Nice to meet you, Chrissie, and glad to hear that Dennis is in remission! I will have to look up lymphopenia.... doesn't sound too great. But you sound upbeat, which is good!:thumbup:

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Originally Posted by dennis2512

hi my name is crissie. Im the supportive wife of dennis wegs patient.. We are pretty excited today, yest told by hes specialist rhemu that hes finally in remission after 15 months of treatment.4 infusions of rtx has worked and 1 infusion of cortisone. unfortunately ctx made dennis develop lymphopenia in august 2012, it took 2 months of negioting with specialists and govt for the rtx treatment. he is in consolidation period now 100mg of immuran 10mg of cortisone bactrim fosamax vit d and caltrate. he had major sinus issues with granulomatsis of the lungs aug 2011.I just want to thank everyone on this site without your support and knowledge we were completely alone here in australia No support networks at all.
:hug3:

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I'm glad he is finally over the worst hurdle Crissie......it certainly has taken a while.

Hopefully now Dennis can start feeling a little bit normal again and you can start to get your old life back.
.......no looking backwards now. Fingers crossed for complete med free remission in the future.

Had my checkup with Dr. Villa Forte today. All is well. I'll resume the pred taper this weekend (now at 5 mg/day). If all goes well, I could be off the stuff in a couple of months. Keeping my fingers crossed that the remaining taper will go well.

Nice, but just take it slow don't rush, many did and had to go back up.

Congrats Pete :) I'm struggling to get below 5mg right now. Fatigue is a real issue right now for me.

Thanks, Bob. I've been holding at 5 mg since Thanksgiving as I didn't want to have a flare over the holidays. I'll go to 4 mg on Saturday (when I fill my pill dispensers) and see how that goes for 2 - 3 weeks. If no problems, I'll go to 3, etc. Dr. VF said that I would notice that all was not well about 2 - 3 days after reducing dosage and should immediately go back to the pred dosage I was on before the problem. Interesting tidbit from her - the body (without GPA or other AI disease present) normally makes 5 - 10 mg/day of "prednisone". She is sure that my body is making some now (probably 2 - 5 mg/day) which helps explain why my taper has gone OK so far.

Don't know what to say about fatigue. I don't have the strength or stamina that I used to pre-GPA. When I flare, one of the indicators is crushing fatigue - hard to do anything beyond go from bed to recliner to potty. Late in the day, I'm tired, especially if I pushed it on my walk. That goes away with a good night's sleep.

Are you doing anything to try to rebuild your strength - even a little bit? I started very slowly - like just walking for maybe 100 yards or so and gradually increased over several months to the point where I could do a couple miles comfortably. I have a pedometer app on my iPhone, and I walk at a pace of about 100 steps per minute (a bit slower than the 180 that TBDBITL uses :smile1:).

I'm pretty lucky as I seem to have ok stamina. The strength is slowly returning. The weird weather changes here aren't making it any easier to taper as I get weather related pain and stiffness now, makes it hard to determine what's what :)

I am going to try for 4mg when I restart my pills for next week too. :)

Congratulations Chrissie and way to go Pete. Hope the taper goes well. Fatigue is what I live with every day and I am not on any WG meds any more. In remission since June 2010.
Dale

How is your 12 year old girl getting on? So sad when I hear of young children being diagnosed with this illness. Although I think youth is on
their side and a good chance to knock it into remission for a long period. Col 23

Six years ago today, I was admitted to the OSU Wexner Medical Center. Nobody seemed to know what I had, but I was very sick. It's been quite a ride, fortunately with many more ups than downs. Life is close to the old normal, albeit with minor concessions to being 70.

Thank you to to all of you for your support, advice, and friendship! Here's hoping the researchers discover either the cause or a cure for our disease.

Cheers to you Pete.

Thanks, Dale!! Back at ya!!

Sounds familiar Pete, keep on keepin on! It's what we do!

Thanks, Don!! How's the golf game? Playing winter rules?? (-;

Time flys when you are having fun !!

Ain't it the truth!!!

Well, here I am; diagnosis day plus six years. It's been quite the journey. Fortunately, it's been a blessed journey, even when I had a major flare five years ago. I've made friends on this forum who I treasure and would like to meet someday. I've gotten advice and support from people who are on the same journey. To all of you, I wish good health and the blessings of effective treatments, wise counsel, and peace of mind.

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Originally Posted by Pete

Well, here I am; diagnosis day plus six years. It's been quite the journey. Fortunately, it's been a blessed journey, even when I had a major flare five years ago. I've made friends on this forum who I treasure and would like to meet someday. I've gotten advice and support from people who are on the same journey. To all of you, I wish good health and the blessings of effective treatments, wise counsel, and peace of mind.

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Thanks for sharing your journey with us. And thank you, Pete, for being here, allways with kind words of wisdom and support. God bless you.

Pete,
Congratulations on your six year Dx Birthday! It is so good to see how well you are doing. Thanks for sharing your journey with us. Keep up the good health!

Nine years in now. I was released from OSU Medical Center nine years ago today. The past year saw my second minor (and third overall) flare. The disease remains well-controlled with an annual dose of rtx. Other than a four-week pred blast to treat last summer’s flare, I’ve been pred free since June 2018.

Here’s to significant advances in treatment of the disease in the coming year.

Thanks for the annual update, Pete. You were dx'd and began treatment a couple of months before I was in 2011. I looked back over the thread from the beginning, and found good posts from people who have either passed away or haven't posted much in years. Some humorous ones, too. Might be a good way for new members to get some background and get acquainted with some of those old members. Sorry for last summer's flare, but glad you are pred free and generally keeping things under control. Amen to new advances in treatment! Next year will be our 10 year anniversary! Cheers!


Sent from my MotoE2(4G-LTE) using Tapatalk

Happy survivor'versary Pete.

Such a lot of time has passed, and you have and your medical team, have done well :thumbup:
Who would have thought it, when we all read those google reports, way back then

Well, here I am at 10 years post dx. Thankfully, there’s very little to report on the GPA front. Still off pred. Taking bactrim 3x weekly. Getting ready for either a 500 mg rtx in March or my COVID shots within a few weeks (B-cell level permitting).

For those who are newer to the forum, this thread provides most of my early case history. From there, I’ve recovered to lead the normal life of a 74 year-old.

Good to hear all is well, Pete! We are coming up on my 10 year anniversary in a couple of months!

Scheduled to get 1000 Rituxin feb 1. I need it, so I will wait another 3 months for vaccine. If I wanted vaccine now, couldn’t get appointment until Feb, then another 19 days for 2 nd one. Then wait 2 to 3 weeks after for vaccine. So I think Rituxin, wait 3 mo. get vaccine is my best option.
I got to 7.5 prednisone and could feel my throat and chest problems, went back to 8, took daily Bactrim, then it turned into head cold. Will stay at 8 for a few weeks, then try slow decrease again. For people who have been at 60 or 40 this sounds crazy, but getting down from 10 after 3 years is a challenge.

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Originally Posted by Masha

Scheduled to get 1000 Rituxin feb 1. I need it, so I will wait another 3 months for vaccine. If I wanted vaccine now, couldn’t get appointment until Feb, then another 19 days for 2 nd one. Then wait 2 to 3 weeks after for vaccine. So I think Rituxin, wait 3 mo. get vaccine is my best option.
I got to 7.5 prednisone and could feel my throat and chest problems, went back to 8, took daily Bactrim, then it turned into head cold. Will stay at 8 for a few weeks, then try slow decrease again. For people who have been at 60 or 40 this sounds crazy, but getting down from 10 after 3 years is a challenge.

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My experience is that tapering the pred meds when you get under 10 mg is a real challenge. It does not seem like a 1/2 mg or 1 should be that big of a change after I dropped by 5 or 10 when I went from 50 to 40 or 40 to 30 but my body often seems to say whoa and complain many times and says slow down or go back up. I am currently at 6 1/3 and hoping to get back to 5 or 6 again some time this year.

Thank you for your story. I’m coming close to one year with GPA. It gives me strength to keep going on. Getting over my first flare-up. Got my first coronavirus shot last week. Glad it’s turning spring in the Lake Tahoe area. Start of yard work. Lots of things to do. Need something to do doing this coronavirus stuff. Be safe all.

I was diagnosed 11 years ago today. I still feel pretty good. Dealing with Covid has been interesting. I got two doses of Pfizer last February followed a month later with a semiannual dose of 500 mg of rituximab. I got the second rituximab in September. I had a Covid antibody test in early December that detected no antibodies. So, I got the booster shortly thereafter. It looks like the trick is going to be striking a balance between maintaining my GPA remission and also having Covid immunity. I’ll be discussing my options when I see Dr VillaForte in March.

The disease itself continues to degrade my kidneys. Creatinine is edging up. GFR is going down. Nephrology isn’t overly concerned except that I have excessive post-void urine retention (about 500 ml). The worry is that I’ll become more susceptible to UTIs and further degrade my kidneys. I see urology next week and will more thoroughly discuss how to fix this. I also have BPH and am treating that with tamsulosin and finasteride (with slight success).

Have you considered getting a Uro-lift to help with retention?