Hello Fellow WGrs

[Jack]

I take Lansoprazole to protect my gut from the nasties. I can not manage without it because my whole digestive system is in such a bad way due to 25 years of toxic drugs.

[elephant]

Welcome Mark, and I agree with the above statements. I am from SC and drive to Ohio ( cleveland clinic ) to see my Weg specialist. Virginia is a beautiful state, we drove thru it last week. I am a RN and had no clue that I needed a Wegeners specialist.....glad I saw one. It makes a world of difference! take care

[Aunnie]

Hi Mark,
Welcome....please listen to Sangye nd the others they re very well versed in WG,and mostly all of us have had bad luck with some Dr's.

Keep us poste d on your progress and just ask your Dr for a referral to JHU,they don't get offended,its your health,body and your life.

Aunnie

OOPS, I spilled Chocolate milk( for calcium) on my keyboard,so some of the keys stick,and I don't always proofread!!!!

[eileenv]

Hello Mark, Welcome to the site, i'm a newcomer like but i am waiting for a conformation of wgs.

[jola57]

It is good that you have been diagnosed with this early on. But this is a progressive disease and so careful monitoring is necessary. You are taking some heavy duty drugs that need to be monitored and I can't see you being weaned off of them quickly. So come to this site even if it just to see what symptoms you can get, so that when (and hopefuly never) you get them you will know right away what to expect.

[Kimbangu]

(After reading other posts, I dont think I should be posting here. Alot of yall have it alot worse than I do.)


I wouldn't worry about that. Welcome to the club. I felt the same way when I found this forum last year. Stick around and you'll learn more here, than anywhere else.

[brocky99]

Jack just picked up on "are you taking anything to protect your stomach" havent heard about that. What sort of med do you take to protect the stomach. As you know Im on Meth and Pred and have been since Xmas 2009.

I also take omprazanole for my stomach and have done from day 1 of being diagnosed, they even upped the doseto twice a day when i complained of feeling sick all the time. I take 31 tablets a day.

Calcium tabs 3 - 3 times a day
calci chew - 1 - 3 times a day
Iron tabs - 1 -3 times a day
Omprazanole 1 - 2 times a day
Septrin - 1 tab a day
Alpha calci chew - 1 tab a day
Simvastatin - 1 tab a day
Antenelol - 1 tab a day
Pred - 4 x 5mg tabs aday
Aza - 3 x tabs a day
Asparin - 1 tab a day
Folic Acid - 1 tab a day
Fluconazole - 1 tab a day

Plus Aledronic Acid 1 tab once a week and epo injections once a week.

I will be glad when they take some off me.

[Jack]

Omeprazole is the same as the Lansoprazole that I take so you should be OK with that.

From the list above, it sounds like you are taking a huge amount of Calcium. I have severe osteoporosis, but only take a couple of calcichews each day together with Actonel once a week.
What is your clorestorol level like? Do you still need to take the Statin? I would also question the Fluconazole unless you have a current infection and you should not be taking Aspirin on a regular basis either.

I think you should go through the whole lot with your doc and question each one! You are overmedicated by the standards I am used to.

[JanW]

Agree with Jack. I only take one calcium supplement tablet a day and fosamax once a week, and have osteoperosis as well.

[jola57]

I agree, you seem to be taking too much calcium. Please check with your doc as to how much you should take.