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Douglas Mayville
06-20-2009, 12:44 AM
Hi:
Doug M from Albany, NY. 58 yrs of age. Diagnosed 11/08 was being treated for Lyme Ticks disease in hospital. They got it wrong. Never sick in my life. Spent 102 days in coma. Glad to be back. WG hit me every place.
Skin eruptions and rash, kidneys, lungs and paralysis in limbs. Other things I have are neuropathy in hands, runny nose, bad eyesight and hearing loss.
Could this get any better.
Treatment Cytoxan, Prednisone, Bactrim and vitamins seems to be working.
Will be changing chemo to another type in late july or august. Hope to be around or get a little better down the line.
Any Thoughts or opinions I need encouragement.

Jack
06-20-2009, 01:20 AM
Hi Doug,
Welcome to the group. Sounds like you've been having a rough time of it!
Now that they have got a diagnosis, you should start getting a bit better, but it takes a long time and you will probably never be the same as you once were. It has come to be known as your new "normal" on this forum and half the battle is in coming to terms with it.
I'm sure others will be along with more recent experiece of being diagnosed. In the mean time, feel free to ask any questions or just have a good rant or moan! ;)

Doug
06-20-2009, 10:03 AM
Hello Doug M.!

Though you had an awful start to remission or a "new normal", it does sound like you have been put on the right track- finally.

You may realize by now that one or another of us will be pestering you to find out if you have approached a specialist (rheumatologist, pulmonologist, nephrologist, ophthamologist, ENT doctor, etc.) about managing your case, and if that doctor or doctors knows or know about managing Wegner's granulomatosis patients. It seems particularly important to me, giving the course of the disease up to this point that you do so if you haven't.

I haven't checked to see if you note where you are located, which can be critical, of course, for access to doctors who've actually seen a WG patient, let alone sufficient numbers of them to trust your health and life to them.

We bring a variety of experiences to this forum, but I think you are the first to have experienced a coma. I hope you can share something about that, though I recognize it necessarily has to be second hand!

Enough for now. I don't want to overload you with things before we all have a chance to "shake" your figurative hand and welcome you aboard our forum. :)

jola57
06-20-2009, 01:56 PM
Hi Doug M. and welcome. Funny, just the other day a friend who is an internist asked me if I am sure that my rheumy checked me for Lyme's. Well, I have had 2 biopsies that confirmed Weg's so no such luck.

shegothipslikecinderella
06-21-2009, 01:07 AM
Hi- I'm new here too so I am no sage- but wanted to say hi & welcome anyhow.

germaine
06-22-2009, 02:37 PM
Welcome to the group. I hope you are feeling much better. The medicines sure can do wonders, despite their downsides. I am really struggling with ideas about how to get the general word out to the community so that people don't have to go down the road so far before they are diagnosed. Earlier and correct diagnosis would save a lot of suffering. Germaine

Terri
06-23-2009, 02:02 PM
You've come to the right place for info and support.
These people are wonderful with advice and you'll find on your "down" days, they will help to lift your spirits.
I've started at this site many times with tears of sadness or depression and by the time I leave, it will be tears of laughter.
You didn't say how much Prednisone you are on.
I've been having a time with that. I went from 5mg to 60 and am now down to 30mg but it sure has been a struggle. Today was a bad day for me. I feel like my legs and back want to give out on me. No energy.

So Jack, you think dropping 10 mg at one time is too much? Maybe that is what is bothering me so much. Every two weeks I am dropping down by 10 but it is all at once. Not 5 one week and then another 5. (or even 1's)
You think that could be it?

Jack
06-23-2009, 03:45 PM
I expect everyone is different as usual, but I know that I always have trouble changing my dose. I am currently dropping from 10mg to 7 at a rate of 1 mg / month in the hope that my body won't notice.

Douglas Mayville
06-24-2009, 12:14 AM
I am new to computer usage. Especially this type of forum. Do I respond by e-mail, send an open message or just post everything on the open forum. Just advise. I have a lot of questions about care and meds.

Jack
06-24-2009, 01:14 AM
The normal method of reply is to post on the open Forum using the "Post Reply" button. Or you can start a new thread of your own using the "New Thread" button and you can then have a thread with your own title.

If you have comments that you only wish to share with one person, you can click on their name and send them a Private Message.

Douglas Mayville
06-24-2009, 01:50 AM
Thanks to Jack,Doug,Jola57,Germaine, Terri and shegothipslikecinderella I welcome the thoughts and support. Hello to all.

What is normal for me today. Trach tube in throat, leg braces and cane.
Skin rashes still lot of Eucerine lotion. Meds are Prednisone 20mg daily have been at 120mg and slowly being taken down. Cytoxan 175 mg daily and Bactrim 3 times a week. This in conjunction with a host of supplements and other meds for blood pressure and related afflictions.

My medical care is and has been the best I could hope for. The medical staff has experience in WG and tell me that life should go on in my new normal for a few more years. It's really something to look forward to. I told them I just wanted to collect one Social Security check before i kick the bucket. I paid it all these years I want some of it back.

Early diagnosis would have helped but the first hospital missed it. The next one identified it on the first day. Spent 2 weeks being treated at first one for Lymes disease. When transferred all organs and systems were affected by WG. Went comatose for a long time which may have been good because I don't know all the crazy things they did to me. My wife did a daily log.

I am a 21 year old male in a 58 year old body or as my friends say a 150 yr old body. My mind is good and I am very sarcastic in my humor. Asked myself WHY ME when I got ill. God or whoever decided I could handle it.
Would like to be pre WG but that aint going to happen

Jack
06-24-2009, 07:30 AM
Not sure how long you have been diagnosed, but in my own case, I improved over the first few years baring flare ups. I was 30 when first affected. I'm now 54 in the body of an 80 year old, but it has mainly been the last 5 years that have affected me most.

As mentioned, much of the battle is in coming to terms with your condition and the things you are still able to do and enjoy. Don't dwell on the late diagnosis and what might have been. If you read some of the posts on this forum, you will soon learn that late and mis diagnosis is pretty much normal for Wegener's. It's a rare disease and most doctors only excel at common conditions.

jola57
06-24-2009, 09:11 AM
Well put Jack, gosh I too feel only 30 and i am 52 in 80 yr body

Terri
06-24-2009, 01:38 PM
I know what you mean. Feeling old.
The first time around for me was 8 months before I was able to go back to work and I did really well for over a year and am now suffering from a flare-up.
I've had more trouble with the meds this time . I still think it is from tapering too fast. I have appt. next week and that is going to be my first question.
Yesterday was a bad day. I felt like my legs and back wanted to give out on me. Yuk, Yuk, couldn't function at all! Today was a little better.

I always keep these words with me and it helps.

Do not look forward to the changes and chances of this life in fear.
Rather look to them with full hope that as they arise, God , will deliver me out of them. He is my keeper. He has kept me. Hold fast to His dear hand and He will lead me safely through all things.
When I cannot stand, He will bear me in His arms.
Do not look forward to what may happen tomorrow.
God will either shield me from the suffering or He will give me the strength to bear it.
I still cry some days or I guess I should say most days, but I know there is always someone worse off than me.
Today I thank God for other weggies and for a support group like the one we have here. I don't think I would have made it this far. Even my family doesn''t understand. That's the saddest part for me.

Douglas Mayville
06-24-2009, 11:48 PM
I am 58yrs old. You might have thought I was 21 yrs. old from my last post. My friends keep telling me that I am 21 in a 58 year old body. Thats because I am full of something and vinegar. I was diagnosed in November 2008. My relapse was February 2009.

Dispite my disabilities I have done well. Back to work at my post retirement job (3) hours a day. I enjoy boating and photography. Its a little tough but I do get by. Gaining strength ever day.

The thoughts I carry with my self everyday are very simple. With prayer, hope and a lots of will power my strength and attitude will get me through anything.

shazny
06-26-2009, 08:57 PM
Hi Doug and welcome to the site. I don't go on here very often due to being at work and my pc at home packing up but I just wanted you to know that there are many wise people on here and lots of good advice is given too so feel free to ask anything and if somebody can help rest assured they will.

Doug
06-27-2009, 01:27 AM
(What Shazny doesn't reveal, however, there are a couple wiseguys, too. Ha! A few laughs help make it through the day. May you maintain a positive attitude, find what you need in support and information on this site. One of the other Dougs):)

coffeelover
07-04-2009, 05:28 AM
What is normal for me today. Trach tube in throat, ......

Douglas,

I too had to wear a trach....for 7 1/2 months, but just to let you know there could be life at the end of the tunnel. I recently got mine out and am doing quite well.
I too, and maybe the trach does this to you, was quite a smart a____ and did not always act my age, but I really didn't care. Who else had to wear a trach and how would they act????
I wish you the best recovery and just know that with the drugs and time and of course a positive (all be it smart a__) attitude you too will start to feel better, eventually.
In the mean time we are here for you
Lisa Coffeelover

Douglas Mayville
07-09-2009, 12:58 AM
Thanks coffeelover for info on trach. I'm into my 8th month and hoping that it will be out soon. Doc says as soon as I'm off prednisone it will come out. Slowly being weened from it.

I have a few questions of you seasoned sufferers.
Does the fat deposits from prednisone go away?
Did your hands and feet swell up ?
Water retention /never had it before?
Did breathing get better or worse after trach removal?

Doug
07-09-2009, 01:29 AM
Thanks coffeelover for info on trach. I'm into my 8th month and hoping that it will be out soon. Doc says as soon as I'm off prednisone it will come out. Slowly being weened from it.

I have a few questions of you seasoned sufferers.
Does the fat deposits from prednisone go away?
Did your hands and feet swell up ?
Water retention /never had it before?
Did breathing get better or worse after trach removal?

Yes, but slowly. Of course, you probably will pick up weight that you'll have to deal with through exercise and will power. It's a bit of a hopeless cause until you get off Prednisone, though, in my experience.

Yes, my feet (but not hands) swelled up. It took a good three months before I could lace up my shoes higher than the first hole. I was put on Furosimide to control the swelling.

I didn't have water retention until WG did it's dirty deed on my kidneys. The swelling was more because of that than anything else. Prednisone wiped me out on the blood pressure and beat regularity. I was on something for heart, but don't recall what at this point.

I lucked out and didn't require installation of a trach. I do notice, even in remission, that my breathing is affected a bit. Perhaps with more cardiovascular exercise in my week, I'd improve: I am have that on line and begin shortly. I guess I'll find out. I know there are times when I feel a little shortness of breath. When I've been checked by my pulmonologist, the oximeter readings before and after exercise indicate I'm getting enough oxygen into my blood, so I may be suffering a little hypochondria! Ha! :)

crackers
07-09-2009, 01:36 AM
hi douglas.i can only comment on a couple of your questions,the ones relating to water retention and swelling.the feet swelling is actually retained fluid which travels south due to gravity(accordind to my gp).you should be on water tablets and try to keep your feet elevated when sitting.
john.

Doug
07-09-2009, 09:15 AM
Which I am and which I do! Your GP is exactly right, John. I have a small sofa with high arms that allows me to rest, even sleep (as I often have) with my feet not only above my heart but above my head. It sounds a torture, but actually is comfortable (surprisingly!). For shorter term swelling, a comfy leather recliner works but doesn't get my feet up sufficiently high to exceed the elevation of my head.

I'm on Furosimide, the generic version of Lasik (spelling?). I take one 40mg tablet a day of that.

If I am on my feet for a long time, they do swell, no matter what I'm on, but the swelling hasn't been anything one day's pampering wouldn't take care of. At one time, I took only 20mg of Furosimide a day, but the amount of damage done to my kidneys in the initial assualt by WG was sufficient to warrant returning to the higher dose: I had fairly frequent swelling in the time I was on 20mg, but virtually none, except under the circumstamnces noted above, while I stay on the 40mg!

Elevating my feet feels great anyway, so that's a happy way to take care of a persistent problem. Now that I'm retired, it's easier to make the time to get my feet up, too.

Sangye
07-14-2009, 12:50 AM
Hi Doug M,
Welcome to the group! You've had a difficult time, that's for sure. I wonder how being in a coma affects how quickly you accommodate to the reality of having Wegs. I can't imagine.

I have ongoing problems with swollen calves/ankles/feet. It can be two different causes for me. It's always been a sign that my Wegs is active. I don't know why that is, but I've heard it from other Weggies as well. In fact, they started to swell a lot more in Feb/Mar and I believed my Wegs was stirring up. My Wegs doc felt it was due to drug side-effects and the need for PT. But it's only gotten worse, and now we know for sure the Wegs is active. Not his fault--there were no other signs of active Wegs-- but now we know it's a reliable indicator for me, and precedes blood work changes by months. The clue is that no matter how much I put them up all day, they still swell.

Even when my Wegs was better controlled, swelling was an ongoing issue for me because I had a ton of leg and lung blood clots. That messes up your circulation. Putting them up during the day helps with this cause of swelling, as long as the Wegs is behaving itself.

I'm hopeful that getting the Wegs more under control right now will drain these soggy feet. Diuretics don't do it at all. It keeps me from standing or walking more than 5 min. at a time.

Douglas Mayville
07-15-2009, 01:40 AM
Hello Sangye:
If your wondering how to cope with the reality of Wegs after being in a coma. When in it you just don't know. When you come out you wonder why I am a third of the person I used to be. Physical disabilities take a toll.

My indicator for active Wegs is a rash accompanied with small blood blisters. I knowd it and so do the docs. ANCA keeps coming back negative as far as active disease.

Swelling of hands and feet are a side effect of lyrica that I am taking for neuropathy in feet and hands. Also wearing AFO's for drop foot. People wonder how I complain of pain when I have paralysis in the area that I'm complaining about. I just do. I do have some clots in the legs and use coumadin to keep INR in range. Lasik works as well as putting feet up for the evening. I have a long way to go and I will get there.

crackers
07-15-2009, 02:35 AM
douglas you're not alone.everyone on here is right behind you.
john

Jack
07-15-2009, 04:07 AM
I'm sure you'll come through this OK Douglas. It is one of the joys of Wegener's that it keeps throwing new stuff at you, but it usually has to get rid of some of the old stuff first. ;)

Although I must say, I'm getting quite a collection at the moment. :(

Sangye
07-15-2009, 05:58 AM
Hi Douglas, I hope no neurologists are puzzled at how you can have paralysis and pain in the same area--sensation and pain are carried by different types of nerve endings.

Like John said, everyone is right behind you. Knowing the characters in this group, that thought might be enough to keep one up at night, though. :D

Lady March
08-10-2009, 03:28 AM
Douglas,

My best wishes, thoughts and prayers are with you as they are with every weggie here.

Welcome.

Gary
08-15-2009, 02:30 AM
Hello one and all, I am new here as well:) Was diagnosed 3 years ago by having an MI. ooops! got to go.

Jack
08-15-2009, 02:34 AM
Hello one and all, I am new here as well:) Was diagnosed 3 years ago by having an MI. ooops! got to go.
That was a quick hello!
Post again when you have more time.
Welcome. :)

jola57
08-16-2009, 01:41 AM
Gary, welcome even at this fast pace. Were you at work???

Doug
08-16-2009, 06:20 AM
Gary- Welcome to the forum! Living by a stream in New Hampshire sounds idyllic to me. The only thing I can imagine causing you to rush off would be a brown bear invading your larder! :eek:

Rainell & Dakota
08-17-2009, 12:18 AM
Hi to all: My 17 yr old daughter, Dakota, was diagnosed just before she turned 15. Started getting sick 3 years ago in the 9th grade. Spent the summer bouncing around Doctor's offices, having numerous ear tubes, Seeing specialists, chest X-Rays, MRI's, Biopsies, Ultrasounds, Nerve testing (ouch-on the face), going to E.R.'s, riding in ambulances, having emergency surgery for a mastoidectomy, had left facial palsy due to the nerve damage in her ear, bone density scans, etc, etc, etc.
Finally getting diagnosed, she spent the 10th grade, bed ridden, home schooled, on I.V's and various meds. The 11th grade, saw her going to school Part Time using a wheel chair and her facial pasy recovered to about 98%. And during the 12th grade, she attempted to go back to school full time, walking. But that only lasted for a few months due to a flare up, she ended up going to school part time again, although keeping up with studies. With the great help of her Doctors, school counselor, principal, and our local state representative, she managed to graduate with her class this past June.
Still have not seen a remission, but she was just weaned from her infusions of solumedrol. :D Still on Cytoxin. :( She has some bone loss from the prednisone, osteoperosis in her spine, but she has gained back alot of strength in her muscles. Goes to Physical Therapy 2x a week. Still has problems breathing, and walking longer distances. But she has touched base with some younger WGers on her FaceBook. There is even an older gentleman, she met in her Physical Therapy sessions that is also has WG. It helps to talk to a support group. Our Social Worker at the University of Michigan tried to get her to reach out when we were first diagnosed, but she grew very depressed, and basically became very withdrawn. Being homebound, until we could get a wheelchair.
She is feeling pretty good now, but we are still playing with her Meds. Has her ups and downs. But since graduation, her spirits are so high, which helps.

Luce
08-17-2009, 05:46 AM
Wow, I am so sorry to hear about your daughter's experiences but I love her determination to carry on her studies throughout. She has been hit very hard by this awful disease but seems to have taken it all in her stride which is excellent.
I was diagnosed 10 months ago at the age of 25 which felt a little unfair to be burdened with WG so young, but to be a teenager and go through all that she has must have been devastating for Dakota and also for you as her mum.

If she'd like someone else to talk to on Facebook please feel free to pass my profile details on to her Login | Facebook (http://www.facebook.com/home.php?#/profile.php?id=695056806&ref=profile)

May you both remain positive throughout her care and I hope her spirits remain high!

Sangye
08-17-2009, 06:26 AM
Hi Rainell,
What a difficult story. Dakota has really been through the mill. Congratulations to her for graduating with her class. What a huge accomplishment!

How long was she on IV solumedrol?

I ask this next question of every new member, because it's the #1 most important factor to getting the best care : Does she see a Wegener's specialist?

Doug
08-17-2009, 07:18 AM
Rainell & Dakota- Whew! We often note how different each of us has been affected by this disease, and in the differences in treatment. Curiously, your daughter comes onto the forum having met an actual weggie! Most of us have never met another weggie. I met Lisa Coffeelover July 14, 2009, 6-1/2 years after I came down with WG, and she was the first person with WG I ever met. Sometimes knowing other weggies is the best medicine for dealing with the miseries of the disease because, frankly, if you don't have it, you can't truly appreciate how you can have a potentially fatal disease for life and still, some times, appear "normal". Dakota is fortunate to know another weggie personally, but this forum is an excellent alternative because of the variety of experiences we all have had with the disease.Secondly, it's great to have you, a family member involved because it is good to have your perspective as well.

Gary
08-17-2009, 07:18 PM
Sorry for running off, yep, was at work during lunch. Don't have access at home so I'm using the comp. at work. Don't get much time to post. Been on the meds for 3 years. Looking for and doing research for using natural foods and such instead of meds. If anyone has ideas let me know. funny thing is I don't feel sick, just tired.

Jack
08-17-2009, 08:38 PM
Hi Gary,
Glad you were able to get back to us.
Having Wegener's and feeling well means that you are currently in remission as I'm sure you know. This can last for a very long time, maybe over 20 years, but you must keep a close eye out for symptoms indicating its return. Some people are able to maintain this condition with the aid of very few drugs or even none at all. Others still need high doses to prevent its return. It is a bit of a guessing game and the consequences of getting it wrong can be very serious or even fatal. For this reason, I would urge you to be very cautious about the use of alternative medication. See this thread - http://www.wegeners-granulomatosis.com/forum/general-wg-chat/353-natural-homeopathic-remedies.html

Martin Thomas
08-17-2009, 09:01 PM
Hi everyone (some familiar names and faces from other groups here I see!).

Aged 52 (tomorrow!) living in the beautiful Lake District in the UK with my partner and Newfoundland dog. I'm currently suspended from studying for my PhD due to this damned disease but hoping to pick up the pieces one of these days soon.

Dx'd in June 06 after 6 months of classic apparent ear infection / rhinitus etc. Standard chemo treatment for a further 6 months but simply got worse and disease spread to my right lung. Bronchus intermedius down to a pin hole in diameter. Started on Rituximab and after 18 months on would appear to have no active disease.

I now have permanent eye damage (steroid induced most likely), nerve pain behind both eyes and am almost deaf in one ear (opposite one to where this all started). Currently treated under the infamous Dr David Jayne at Addenbrooke's, Cambridge, UK and having surgery every 4 months to repair lung damage. Ear and eye sadly appear beyond mending but time will tell. Also having accupuncture in an attempt to alieviate headaches / tinitus. Early days but something's stirring!

Sangye
08-17-2009, 11:49 PM
Hi Martin,
Welcome to the group! You and I were dx'ed the same month, and as is typical for Wegs, we've had completely different experiences! I'm so glad you have a Wegs specialist. That will save you a lot of nagging from me. :D

Maybe you already know this, but others might not : Acupuncture is great-- just make sure to tell your acupuncturist not to deliberately stimulate the immune system. You've got to go very slowly with it, don't do much at each session, or the Wegs will flare. Several months ago I saw a new acupuncturist (I moved from Arizona last fall). She's excellent, highly trained. But she didn't understand and/or respect the above limits. It wasn't until it was over that I learned she had done a full-blown immune-stimulating treatment. (I don't know which needles do what) The very next day I wound up in the hospital for a week with what we thought was pneumonia, but was really the beginning of a Wegener's flare. Great proof of the power of acupuncture to boost the immune system, though, huh? :rolleyes:

Martin Thomas
08-18-2009, 01:51 AM
Thanks Sangye

I've 'met' you on one of the Yahoo groups but didn't realised we shared a Dx day!

Thanks for the advice re the acupuncture. Mine is actually a hospital consultant who specialises in pain control for the terminally ill and has educated himself specifically on WG (although I probably still know more than he does ;-)). He's certainly taking things slowly and is making no attempt to stimulate the immune system. The meridians he's using so far are specific to the sinuses (starts in the large intestine apparantly), one to help with my hadaches and one with the lung repair. I'm only having 3 needles per side each week and only having 6 sessions as he feels it will (a) have worked by then and will only need a booster later or (b) failed and therefore there's no point in going on. I guess I'm fortunate that it's free and that he has no motive to profit from doing more than necessary.

Sangye
08-18-2009, 03:14 AM
Sounds like the perfect guy! I hope it works well.

Acupuncture has helped me tremendously. I wouldn't be alive without it. When I got out of the hospital after beginning Wegs treatment, I was nearly dead. I had a strange sensation, that I can only describe as like sand leaking out of an hourglass. My acupuncture doctor said I had no foundational chi left. He couldn't believe I could even talk. The needles he did that first day stopped the chi leak, though I was seriously weak for a long time (and still am in pretty awful shape!).

I believe I was in such bad shape because for many months before the Wegs got dx'ed, I was using increasingly powerful holistic treatments, thinking I had Lyme's disease. Of course that fanned the Wegs fire tremendously, and the end result was a complete loss of chi. It's why I'm so adamant about Weggies using caution with holistic treatment and never trying to substitute it for the drugs.

Rainell & Dakota
08-24-2009, 12:08 AM
Hi Rainell,
What a difficult story. Dakota has really been through the mill. Congratulations to her for graduating with her class. What a huge accomplishment!

How long was she on IV solumedrol?

I ask this next question of every new member, because it's the #1 most important factor to getting the best care : Does she see a Wegener's specialist?
Hi - We noticed after what we thought was a cold, or sinus infection Dakota's recent flare up came last Oct (08). After our November visit with her Wegener's Specialist at the University of Michigan/Pediatric Rheumatology-they started her on her solumedrol infusions the First of December. First 3 days straight, then spacing it out, weekly, then every 2 weeks, then every 3 weeks, finally every 4 weeks. 4 Weeks ago (July 09) was her last infusion(the Dr is monitoring her to see if she will be o.k. without it) Then if all goes o.k. they may wean her off her Cytoxin next. Crossing our fingers. Thanks for asking.

jola57
08-24-2009, 03:17 PM
I do hope the weaning works. Congratulations to Dakota on graduation.

Sangye
09-07-2009, 09:42 AM
Hey Rainell, how's Dakota doing? Is she off pred? Cytoxan too? Keeping my fingers crossed for our new graduate! :)