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RCOSSIO
06-11-2008, 12:10 PM
Well I guess just like the rest of you the aftershock of being diagnosed with WG is all too familiar. My story is that I knew about WG since my uncle was diagnosed with the same illness in "91."

April 24th 2008 just finished a 20 mile bike ride alone since my wife came back from a business trip with a nasty...nasty...awful flu. Now I am not blaming her flu to my WG, but exactly one week later I am experiecing mild joint pains (knees, wrist, hips, fingers...you know the symptons)!!!

Realizing the pain I immediately went to see a Rheumy Doc and she prescribed all sorts of test, especially seeing my ankle swollen like a melon. Well the test revealed a lot of inflammtion in the blood system but did not point out WG. After seeing her for 2-1/2 weeks and starting to cough more than usual I woke up one Sunday morning May 20th and start coughing up (aghhh) BLOOD! Now there is nothing more freaky than this and my wife immediately throws me in the car...mind you I am 6'4 282...now I weigh 255..anyway went to the hospital got the chest x-ray, CT lung scan and all sorts of blood work! After six hours in emergency, ER DOC says you have to stay overnight as we see nodules in your lung (the crazy thoughts that run through your mind...like LUNG CANCER!) However, ER doc says the nodules don't look like cancer, but we won't know until further exams are done.

Well finally after 8 hours in ER they transfer me to the oncology ward and it comes a pulmonary specialist..who DROPS THE BOMB! I think you have WG, however without a biopsy we won't know for sure. Tuesday, May 22 lung surgery and walla, confirmed WG on the 23rd.

Keep in mind I am opening my own SF Insurance agency in about a week and the last thing I needed was this dreadful news (especially since I knew my uncle's diagnosis!)

But here I am today, June 10, 2008 3-weeks into the Cytoxan 50mg morning and 50mg evening, 60mg prednisone (which my Rheumy will start reducing) and Lyrica for those knife burning feet of mine. By the way my Rheumy Doc (Dr. Baca) from Boca Raton is awesome! Kudos to him!

June 10, 2008....I don't feel any anger, don't feel why me...I look forward to everyday I am here..my business opened up without a hitch and the one thing I can say is that I live in the NOW! and now is what I do. The only positive I can say about my WG is that I lost 27 pounds and the steroids does not make me hungry, don't feel nausea, feel a lot of energy throughout the day...nights though I get real tired. I drink lots of fluid so I am up all night watering the fish!

The only complaint I have is my feet (Lyrica seems to have help substantially) but I can't stand up for more than 10-20 minutes. The throbbing and burning stabbing sensation is, well, UGGGHHHHHH!

Look forward to writing again and I hope I did not bore you with my story!

Richard (Deefield Beach, FL)

andrew
06-11-2008, 06:28 PM
Hi Richard and welcome!

You're one of the lucky ones not having intollerable hunger with the steroids. I gained about 20 kilos while I was on Prednisolone :-)

I love your positive attitude mate, keep it up. Well done on the business as well and I hope it keeps being a success story like you!

I can't help with the issues with the feet as I have no experience with that. What does the doc say is causing it?

RCOSSIO
06-11-2008, 09:56 PM
He says its part of the vascullitis. Since I just started the treatment 3 weeks ago he now wants to monitor it closely. I will keep you informed since I can't walk as good as before.

By the way my uncle had same issues with his feet initially.

andrew
06-12-2008, 05:08 AM
Sounds like it runs in the family :)

Both my Sister and my Father have autoimmune 'issues'. I got the jackpot though :)

RCOSSIO
06-12-2008, 08:53 PM
Sounds like we need to all meet in Vegas!

andrew
06-12-2008, 09:12 PM
We could use our pills for chips :-)

I'll see your 60mg Prednisolone and Raise you 150mg of Imuran :D

RCOSSIO
06-12-2008, 09:14 PM
i'll take your 60mg of Pred and raise you 150mg of Lyrica!!!

Call

witho
06-15-2008, 03:46 AM
Hi Richard - welcome to Weggie world! Sounds like you've got the right attitude, I hope you continue to improve.

I too lost weight at first, through not being able to eat when my kidney failure was at its height. But it didn't take long for it all (and more) to come back on again. In about 4 months since coming out of hospital, I had gained 14 kilos (30 pounds).

It's coming off again, but very slowly...

RCOSSIO
06-16-2008, 03:59 AM
I heard about the weight gain...that is why I am sticking to a very healthy diet 6 days a week with one day to splurge...like today, Father's Day!

I will enjoy today..tomorrow eat healthy again.

Believe me you will lose it!

sue12
06-18-2008, 10:21 PM
Hi Richard,

My hubby Pete recently diagnosed with WG. And has the same feet problem. Here in the UK you have to ask for everything. But he has never been given treatment for his feet which like yours are ahhhh. Anyway, now tomorrow I can insist on Lyrica.
I call him Ozzie (Osbourne) now - cos the way he walks....(which makes him smile)
Cos you have to laugh.... positive thinking!!! WG people.... and that includes to all the family and friends who read this site and are trying to help their loved ones.

Sue

andrew
06-19-2008, 06:25 AM
Cos you have to laugh.... positive thinking!!! WG people.... and that includes to all the family and friends who read this site and are trying to help their loved ones.

Well said, Sue. It makes a world of difference if we can manage a smile or two and maybe throw in a laugh for good measure :D

RCOSSIO
06-19-2008, 11:57 AM
Sue,

The Lyrica does help, really well. I take 50mg 3 x day, as well as Vitamin B-12 100mg once a day, although my Rheumy just cut me back to 2 a day yesterday. It took about 1-1/2 weeks but it definitely started to work. I hope Mr. AC/DC will get better and he will be able to walk.

I still walk funny, feet hurt...but not as bad. I will keep all informed as to how it goes!

and by the way...stay the course, live for the NOW! and enjoy the new perspective of what life always bring you!

"For Those About To Rock We Salute You!"

Carol
07-17-2008, 10:05 AM
Hi I'm Carol and I also have the burning feet problem and walking funny. I have been doing some research and Benfotiamine - a fat soluble vitamin B1 keeps on coming up (combined with Methyl B1200) as a solution for people with the same kproblem with diabetes. Has anyone tried this - I would have to order it from the US it seems as its not available in Australia. I would love to hear from you before I go ahead and order it.

RCOSSIO
07-19-2008, 01:16 AM
I just stopped with the Lyrica after 8 weeks. I initially started at 50MG 3x daily and Vitamin B-12 100MG 1x daily. After 4 weeks my Lyrica was reduced to 2x daily and then 2 weeks later 1x daily. I just finished my last dose this week but still take the B-12.

I don't have the burning sensation anymore, but still have numbness around the pinky, heel and ankle. My doc thinks it has more to do with the swelling on the veins which compresses the nerves. But it has gotten better.

Lyrica does work and I would recommend it. I am not sure about Methyl. Lyrica is a prescribed medicine, expensive but worth it.

Please let me know if you are successful! and remember to live in the 'NOW!"

Terry
09-21-2008, 03:18 AM
Richard, I have a confirmed case of fibromyalgia and take Lyrica 100 mg. three times a day. For about the past two years, I've had a lot of trouble with my feet that I have attributed to the fibro, but now I'm rethinking it. Most nights I have to sleep with them hanging off the bed because I can't stand the burning pain I feel when I lay them down on the bed. When I was a baker and on my feet all day, I couldn't stand to even have the covers on them. Things are better now, but I still sleep slanted. :D

Interesting that your original blood work did not confirm W.G. Mine didn't either. We are running another battery of tests this week with W.G. in mind. I'm not ready yet to walk away and say "whew! That was a close call!"

ian anderson
05-20-2010, 09:23 AM
hi richard read your story can readily understand when you spoke about burning feet that was my first symptom like walking on broken glass take care we will talk agn