Just Diagnosed

[Shannon T]

I was just diagnosed 4/2/09. Hearing impaired, balance horrible, chem starts Monday. Just want to know if full hearing and balance are ever restored? Hearing ability changes daily to some extent. Both inner ears do not function apparently.

I want balance enough to work, walk my dog, travel, maybe a little golf and skiing. Is that possible for many?

[pberggren1]

Hi Shannon,

Good to see you found us. The hearing issue is different for everyone. As for myself my left ear is now totally useless and my right ear has about 75% loss. Loss in both ears is due to nerve damage. Your loss right now sounds like fluid in the middle ears. Have you seen an ENT yet? What about a Rhuematologist?

My hearing loss early on was mostly conductive, but when I had my first flare up my left ear went totally dead. It was a wierd experience. I felt all sick and dizzy and wanted to lay down in a warm bed. I layed down for a while and when I got up my left ear was dead. From May 2003 to July 2004 my hearing would change in each ear. Sometimes my right ear would be the good ear and then the left one would be. In the very begining my right ear was the bad one. I blew my nose and it felt like something was puncturing my ear drum. Very painful. I still get the odd dizzy spell.

I suggest you read my post in the New Member Introduction area. This will give you a better idea.

I hope you have good doctors.

Over and Out,
Phil of the north

[andrew]

Can't comment on hearing loss. Are you affected anywhere else? I would hope that the treatment affords you some reliefe from the symptoms but it depends on whether any damage is permanent or not. 'fraid only time will tell. Usually treatment will kick in within a short time (days) but can take longer epending on how deeply the patient is affected.

I've been able to live a pretty much normal life except for the fact that the brick wall is closer now and I hit it much more frequently! :D:D

Welcome to the site!

[Shannon T]

Symptoms - main concern is hearing and balance but also experience blood red eyes, sinus disease, misc. pain in joints, fatique, weakness, shortness of breath, growths on hands that swell and are very painful, one episode severed a tendon to a finger.

Pleased to have found this forum. Thank you for the welcome.

[RCOSSIO]

Welcome to the world of WG...as you read each members profile you will notice different degrees of symptoms...mild to severe!

Although I did not have any hearing loss I do hear on occassion feel like Kate Beckinsale is whistling in my ear...WISHFUL THINKING!

Anyway...as you will see I now start calling "WG" my new "BFF" (best friend forever lingo in text world).

As Andrew mentioned the meds do work..it will take time...but with WG "patience is a virtue"

[coffeelover]

I've been able to live a pretty much normal life except for the fact that the brick wall is closer now and I hit it much more frequently! :D:D

As I am a fairly new diagnosis, I am wondering how long some of you have been working with your new "BFF"? I know there is not a cure and I have this for life, but I really want to NOT be hitting a brick wall constantly. Is there hope for some "normalcy" to last a while?
Lisa

[Sangye]

I'm a long way from not hitting a brick wall, but lately the wall is a wee bit further out than it has been for awhile. I've been on treatment for nearly 3 years (*gasp* has it really been that long?).

[andrew]

Been working with my BFF for 6 years. In fact, I think it was some time around today 6 years ago that I was moved from critical care (step after ICU) to the renal ward. Ahhh...memories....hospital food (actually quite nice except for the powdered eggs on weekends)....puking in the dialisis room...practicing breathing without oxygen tubes....being woken every 2 hours for obs....makes me all misty-eyed for days gone by...NOT!! :D

Oh...where was I? Oh yes, that brick wall...ouch! Just stubbed my toe on it :) Sorry...too much caffeine...

The brick wall got ever so slowly further away. For instance, I started practicing walking around my bed when I was in hospital. Then it was walkking to the loo, then to the dialysis lab...then down the hall...then down 5 floors (in the lift) and out the door. Now I'm bolting up the stairs at work and yelling at people when I get to the top :D It just takes time. You'll find your brick wall and then learn to recognise when you're about to hit it face first. The trick is to see it coming and slow down before you hit it face first.

[Sangye]

The trick is to see it coming and slow down before you hit it face first.

Yeah, I've gotten better at picking up on the more subtle clues that the wall approacheth. I'll start to get a little grumpy and I'll feel chilled regardless of the temp. If I ignore those signs, then my legs get a little trembly, I'll feel like someone siphoned out my blood and I get tearful. If I ignore all that and don't sit down right then, the whole house of cards comes down.

[jola57]

For me it being breathless, like someone sitting on my chest, then my legs get wobbly. The most ambarrasing is when I need to go for #1 or 2, I need to go now, so my first priority is to scope out where I am for bathrooms. I guess we all learn how to adjust to that wall and we can scale it once in a while but most of the time we just try to stay clear of it. Personally for me I think tha twhen I loose some of this extra 50lb I seem to have packed on a lot of this ill feeling would go away. Honestly the will is there but with all these holidays and hving a wonderful cook for a mother who just wants to braise the illness away (and boy oh boy is her food delicious)I don't stand a chance. There is just no way that I can not sample the duck with apples, or the cranberry turkey or the cheese blintzes, or pierogi, or, cabbage rolls, or beef rolls..... Now you see my dilema.

[Luce]

Hi Lisa

I'm now six months down the line from diagnosis where I'd lost 40% of kidney function and had 4 or 5 large granulomas on my lungs.
I'm working a full 37 hour week and going to the gym 3 times a week as I too am struggling with my pred weight. I thought I'd have to pull back on work as I've recently gone back on the cyclo pills but I seem to be coping ok.
As long as I get 6-7 hours sleep a night then I don't seem to be hitting the brick wall very often, but occasionally I get in from work and spend the evening dosing in front of the telly as I'm shattered. That usually sorts me out for another couple of weeks :)
I understand that I'm quite lucky to be back at work so quickly, but at 25 I guess I have youth on my side and have perhaps bounced back quicker than some.
I really don't want to give up work again as I became a bit of recluse when recovering at home over Christmas - work to me means being normal and getting on as I was before WG struck.

[Sangye]

Wow, Luce-- that's so good to hear! I hope you continue getting better and stronger, and leave the whole Wegs nightmare behind you.

That goes for everyone on here! Wouldn't it be nice if someday all we had to talk about was bunnies and cows? And we'd say, "I don't even remember how we all met!" :)

[coffeelover]

Luce,

I am so sorry you had been stricken with this disease at such a young age. I should consider myself lucky in that at least I aquired this new BFF at double your age.
I also feel as Doug does in that I have what is called limited WG (so far) and it has only affected my airway (still have the trach) and my lungs and kidneys are fine.
I too am working full time, plus and walking and have been very active, but did notice today that I am dragging due to my last two weeks and positioning myself into such a busy schedule. I know better. I will have to doze in front of the tellie tonight and take it much easier this week. I think that dreaded pred gives me a false sense of empowerment and I know better than to fall for that!
I know stress makes me feel "not as good" and I had to fire someone today. That is not something I enjoy doing and it creates a bit of stress, even if it has to be done.
I agree with Sangye "Wouldn't it be nice if someday all we had to talk about was bunnies and cows? And we'd say, "I don't even remember how we all met!" I can say that I consider you all friends and am glad, even under these circumstances, I am getting to know such great people.
Lisa

[Shannon T]

This was my first day with chemo. I arrived at the hospital at 8:25 a.m. Five minuites early. They did not put the needle in until 11:00 a.m. and then only nausea medicine. Did not start chemo until 12:15 p.m. because my doctor had failed to forward my blood tests.

I was there 5 hours. So now I know what to expect. I will expect 5 hours and if I get out sooner I will be pleasantly surprised. But my nerves were totally shot and could not work in the afternoon.

So this is the world of Wegener's. I will be more well prepared emotionally next time. The physical part was not so bad but the stress!!!!! Live and learn.

[andrew]

well that's the first one out of the way now and you'll feel less wound up when you go next time. hopefully you'll get started earlier too! i seem to remember mine taking about four hours or so. i'd take fridays off work for the chemo and have the weekend to get over it. never really made me feel nauseous but i was completely drained and couldn't do much more than sit around watching tv.

[Shannon T]

Had my second chemo this week. This time it took 4 hours rather than the previous 5. But I was more prepared and handled it better.

I have gone from 60 mg pred to 40 mg as of today. But the doctor wants to increase the cytoxan from 750 to 950 (mg I think is the measurement). he said he wanted the t cell count down from 9 to 5, whatever that means. Seems like some good and some not as good news to me.

I started on the tread mill because of the weight concerns. I only do 25 minutes but I am really wiped out when I finish.

It feels lonely having this disease. No one has heard of it and it takes so long to explain and I am embarrassed by my lack of balance. Can't seem to get past that one.

Oh well. Thanks for listening.

[Sangye]

Hi Shannon,
Glad your 2nd chemo session went better. I was on oral cytoxan, so I don't know what it's like for you folks who get the infusions.

As far as the combo of good and bad news, here's what that means: If he's willing to decrease the pred, it means the Wegs is improving. Labwork markers of inflammation are the indicators. (Sometimes the ANCA if it's reliable for you) So lowering the pred is good news.

The purpose of the cytoxan is to suppress the immune system. T cells are a type of white blood cell that correspond to immunity. So if they're too high, it means your immune system is still too strong. He's increasing the cytoxan because it's not suppressing your immune system enough. So that's not bad news (other than no one wants higher doses of drugs--ick). It's just the trial/error aspect of jiggling the immunosuppressant dosage. Today you may need one dose to get T cells to 5, but in a few months it may be a higher or lower dose to do the same.

Take it easy on the treadmill. Don't wipe yourself out. The high dose pred gives a false sense of strength, but meanwhile it's draining your much-needed adrenals. Go for time, not intensity. Finish with a lot of energy left. Don't hit "the wall." You'll also notice your emotions will ride the same rollercoaster as your body. Wipe out physically and you'll wind up more depressed, too. It's the same chemicals.

I totally understand how lonely Wegs is. I didn't have this group (or anyone with a chronic illness) for 2.5 yrs. That isolation is a big deal. It's part of the grieving we go through with Wegs. I started seeing a therapist when I was first diagnosed, and it's helped more than I can say. If that's something that appeals to you, it helps to find someone with experience in chronic illnesses.

Keep checking in here. We can help you communicate Wegs to others. And you'll definitely feel less lonely, since we all understand.

[Rodger]

Hi all bacf to the forum after a long hiatus. My first flare up after diagnosis involved my ears. Get thee to an ENT! I got tubes which alleviated the fluid and pressure, but the meds were required to alleviate the symptoms. Slowly the muffled feeling and ringing was reduced but will occasionally come back. For example, the tube in my left ear has been working its way out and the ringing has returned.

Be prepared for the ear drainage once the tubes are in place. For me pretty heavy (and gross).

[jola57]

After consulting with my hubby, I decided not to get tubes, I'd rather live with my hearing loss than having to deal with the tubes. I can take the ringing, and not understanding somewhat when in resaturant more that cleaning the tubes or having to watch them while showering.

[pberggren1]

Jolanta,

I've had 3 sets of tubes in my ear drums. Unfortuantely they didn't do me any good. I would definitely consult with at least 3 different ENT's to get their opinions. I didn't find it at all difficult to deal with the tubes even when showering.

[Sangye]

Jolanta, you're right to think hard about getting tubes. What they don't tell you (only in a quick murmur or in the tiny print) is that every time they cut the eardrum to put tubes in, it leaves a scar. Scar tissue on the eardrum creates more hearing loss. It's a toss-up and must be decided individually-- is the hearing loss from the ear congestion much greater than the scar tissue damage?

Also, the tubes don't stay in forever, and often fall out quite quickly.

[Doug]

There is just no way that I can not sample the duck with apples, or the cranberry turkey or the cheese blintzes, or pierogi, or, cabbage rolls, or beef rolls..... Now you see my dilema.

Mmmmm! I knew there was a reason I loved the Polish! Pierogis in particular bring back fond memories of New York City and the East Village!

I had the ringing in the ears and some momentary balance issues, but that went away until I was assassinated by shingles in October-November 2007. Oh, yeah. I was smug about achieving remission, and I let my guard down to overwork and stress, a great way to invite weakening of your immune system. BFF works that way sometimes: even when you start to feeling better, don't forget that you are not Super Guy, that infections you catch tend to take on bigger than life proportions. "This is the worst case of herpes zoster I've seen in my career," said my doctor, who's been in practice at least 30 years. Shingles left me scarred and completely deaf in the right ear. I lucked out, barely, that it struck up to within a quarter inch of my right eye, not a place you want shingles to go. :)

[pberggren1]

I thought pierogies were Ukranian?

[Jenny]

I was just diagnosed 4/2/09. Hearing impaired, balance horrible, chem starts Monday. Just want to know if full hearing and balance are ever restored? Hearing ability changes daily to some extent. Both inner ears do not function apparently.

I want balance enough to work, walk my dog, travel, maybe a little golf and skiing. Is that possible for many?
Hi Shannon. So sorry to hear about your balance and hearing impairment from the WG. You said that your hearing ability changes daily to some extent that sounds hopeful that you don't have permanent hearing loss. With my experience I had a fullness feeling in my right ear and muffled hearing (granuloma was growing in there) and then two weeks later total hearing loss in that ear. Then all hell broke loose (ottitis media) it lasted for about eight months (I still have ear and mastoid bone pain) my eardrum was getting pulled towards the eustacian tube and I had all this fluid, and white jelly stuff and blood etc coming out of my ear for a long time (the ENT I was seeing at the time was a jerk he just kept giving me antibiotics and prednisone here and there for like a couple of weeks at a time and saying it was an ear infection for four months). Have you seen an ENT specialist ( I went to a new one in July)? I had two ear surgeries to clean it out (it was called a mastoidectomy it relieved a lot of the pressure and horrible pain) and a tube put in.

With me it destroyed the auditory nerve and affected the labrinyth (balance) I got really dizzy there for a while but my balance isn't too bad. If I look up or from side to side with my head I get off balance or if I'm really tired. I can exercise (go on a treadmill etc) and it isn't too bad so don't give up on that. Anyone that has had facial palsy or constant ringing in the ears don't give up. Doctors didn't know how to help me with that and I heard about an Osteopath and went to him and the first treatment I could move my cheek on the right side and now I can smile (not exactly like I used to but it is better than nothing) and close my eye again. Still can't raise my eyebrow but it is better than being paralyzed on the right side of my face like before (I was so self concious about it, you try to smile and people look at you like you are weird). I see him every three weeks. I first saw him at the end of October' 08.

Best of luck to you.

Jenny

[Doug]

I thought pierogies were Ukranian?

The restaurant where I ate them was run by Russians. Of course, in 1970, Ukraine was The Ukraine and a part of the USSR. Given the tragic history of Poland and the constant changing of its borders and those in charge, pierogis could be Polish/Unkrainian/Russian. I think they are delicious no matter what! :)

[germaine]

Hi Shannon, I had three rounds of IV Chemo and after a flare (during treatment) I was started on oral chemo (procytox). It has been much more successful I think, plus no nausea or discomfort for me. I took Sange's advice about being sure to rest and not overdo things. I have been feeling good and right now don't have much for symptoms. I am being withdrawn from the pred. Down to 20mg now and the doctor will follow that with a reduction in dose of chemo, or change to maybe cellcept? Hope this plan works. I think the pills work best as they are constant and the IV seemed to work in cycles and gave the WG a chance to get out of the box during the low periods. I wonder what other people have experienced?

[Jack]

Soon after I was diagnosed and had settled down a bit with medication levels I was switched to "pulse" treatment. The idea I believe was that it would give less side effects. However, I suffered repeat flare ups of Wegener's until I returned to daily medication.

[Doug]

My doctor's orders after they stabilized my condition and sent me home from University Hospital-Denver in January 2004 turned up. They put me on one each daily, or as noted, of the following: Prevacid (30mg); Toprol XL (50mg); Levofloxacin (250mg); Procrit (10,000 units, weekly, subcutaneous injection); Bactrim DS (one tablet Mon., Wed., Fri.); Cytoxan (250mg daily, which came in 5 50mg tablets). Prednisone, leaving the hospital (where they had me on 80mg a day for the month of January 2004): 70mg from 2-1 to 2-14; 60mg from 2-15 to 2-29; 50mg from 3-1 to 3-14;40mg from 3-15 to 3-29; 35mg from 3-30 to 4-13; 30mg from 4-14 to 4-28; 25mg from 4-29 to 5-13; 20mg from 5-14 to 5-28; 17.5mg from m5-29 to 6-11; 15mg from 6-12 to 6-26; 12.5mg from 6-27 to 7-10; 10mg from 7-11 to 7-25; 9mg from 7-26 to 8-31; from 9-1-04 through 4-30-05, my Prednisone dosage dropped 1mg per month until 5-1-05 I was celebrating my first day without it! My doctor dropped me to 200mg/day of Cytoxan at one point in March 2004 because my red blood cell count was very low. Another time (April 2004), he had me stop Cytoxan for Friday through the next Monday for the same reason. There were, of course, follow-up appointments to verify I was headed in the right direction. I note these things so you can check your treatment against mine and to correct anything I may have posted incorrectly in past when I was working from memory.

[Jack]

Since we are talking about the effects of treatment -

I woke up today feeling bad as usual, but that is OK because I know I will improve after an hour or two. However, I just got worse instead. :(
Then, when I went to take my evening medication a while ago I realised the reason why. I'd forgotten to take my morning pills! Damn!
That is about the third time I've done it with the same result.
Does anyone else have this immediate reaction to missed medication?

[Luce]

I too have twice now forgotten to take my morning pills. Both times I have managed to get to work and sitting at my desk I have started to wonder why I felt so good and what was missing - the usual sicky indigestion feeling I get for an hour or so after taking my meds.
I am lucky that I only live a 5 min drive or 15 min walk from work and an understanding boss, so both times I've popped home and had my missed pills by 10.30am.
I don't think that 3 hours late counts as missed pills and it's not really long enough to notice any ill effects from not taking them at the normal time.

Trouble I have now is everyday I get to my desk and have a debate with myself as I try to remember taking my pills that morning. When it becomes routine I guess one day rolls into the next and you become complacent. I have just ordered myself a 7 day, twice daily pill organiser to try and stop myself from debating all morning. The last thing I'd want to do is convince myself I didn't take them and take a double dose, the pill box should stop that.

Jack I find it funny that I was alerted to not having taken my pills by feeling well, rather than feeling the ill effects like yourself.

[Shannon T]

Jenny,

Your

[Doug]

I'm sitting here is pretty good pain having forgotten my bedtime Cymbalta and Gabapentin dosage last night. While the pill boxes are a pretty good way to remember taking your pills on time, I am living testimony this morning that they don't solve the problem 100% of the time. What happened to me last night: I tried my new video camera out (nice HD picture, easy operation- I'm happy with it!) and I had a printer issue that I couldn't resolve after considerable effort (I've had this issue with HP printers before and swore, at one time, I'd never have another HP printer again...!). I just got caught up in other things. Computers and their peripherals in particular can do that, distract you from the rest of your life with their sometimes pissy, little quirks! Now, take my morning pills and hope I can manage the pain until whenever. :)

[Sangye]

If I miss one dose of Cellcept, I start to get a little pain back. If I miss two doses, I'm in terrible pain and get rashes everywhere. Lets me know the Cellcept is working, and that I still do need it.

[JohnL]

Do any of you take Bi-carb ??? I take every day to negate the fatigue acids

[coffeelover]

You know Doug, I am constantly amazed when I forget to take some of my pills. You'd think after so long it would just come naturally....but it seems to be so easy to forget. Maybe we are rebelling a bit and hoping our symptoms are gone??? So sorry you have the pain. Hope it goes away quickly.

PS Think about meeting up sith some friend in Colorado in July. Maybe coming through Nebraska. Maybe we can work it out to actually meet?

coffeelover

[Doug]

You know Doug, I am constantly amazed when I forget to take some of my pills. You'd think after so long it would just come naturally....but it seems to be so easy to forget. Maybe we are rebelling a bit and hoping our symptoms are gone??? So sorry you have the pain. Hope it goes away quickly.

PS Think about meeting up sith some friend in Colorado in July. Maybe coming through Nebraska. Maybe we can work it out to actually meet?

coffeelover

I'd be delighted! I'll send you specific information by e-mail so 487 weggies don't show up with you! Ha!


p.s. John L.- I never took bicarbonate of soda. Is that your own "prescription" or something a doctor suggested. My doctor had me on some drug (forget the name) that didn't come in a generic version and cost like heck because then I didn't have coverage for medicines through my company until a year or so latyer.

[Doug]

Jolanta- Is that Faustus in your new avatar?

[pberggren1]

Lisa,

Wait six years and then you wont forget the meds.