New to WG

[Douglas Mayville]

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]

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]

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]

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]

Hi- I'm new here too so I am no sage- but wanted to say hi & welcome anyhow.

[germaine]

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]

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]

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]

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]

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.