Face normal at 6mg's - hurrah

[Sangye]

Holy smokes, Mario. The doctor should know better than to throw the pred dose around like that. It's extremely dangerous to the adrenal glands, which can shut down completely. That's called acute adrenal crisis and is deadly within 24 hours unless something is done.

I'm not sure why her mental abilities suffered with dropping the dose, other than maybe it dropped her blood pressure so much she wasn't getting enough oxygen to her brain. Increasing the pred back up to 60 could easily cause severe weakness, because pred is so damaging to the adrenal glands. Dizziness upon standing means her blood pressure is not adjusting to postural changes. That's a function of the adrenal glands, and the severity of her dizziness indicates a serious problem.

My advice is to get her to a Wegs specialist right away. She also should see an endocrinologist to have her adrenals assessed. While you're waiting for those appointments (tell them that it's urgent for her to be seen), get her to a good PCP to have her blood pressure evaluated.

And BTW, it's usually recommended to take all the pred in the morning, so it doesn't interfere with sleep as much. Check with her doc(s) to make sure that's okay, though.

[Mario]

Yea after this whole senerio I have been working on getting a new rheumatologist that is as close as I can get down here to a weg pro. I have been working on getting a perssonel doctore that is going to catch these things as well Evertime we go to the hospital there are three docs that treat her and they all come up with different solutions no team effort what so all. The dizzyness WOW Sangi I was told to get get some sea sickness pills they did not even consider it being the adrenal glands this really shows me how much effort they put into her the gave me Mezical for the nausia and dizzness I found the same stuff of the shelf incredibale my mother is on Dialleses will this have anything to do with it?

[Sangye]

my mother is on Dialleses will this have anything to do with it?

It sure can. And any blood pressure problems with known kidney problems are extremely serious. She must have a nephrologist if she's on dialysis. What does s/he say about it?

Any chance you can get her to a different hospital? A teaching hospital is best-- the docs know how to work together in large teams and she'll get LOTS of expert advice. Please don't wait another day to get her help.

[Mario]

To be Honest the Nephroligist seems like he does not have a clue I was just told to get a rheumatologist this last week she became a weg back in april. do you recommend any particular school in California?

[Sangye]

I have no idea about which teaching hospital is best. I would contact the VF and ask for their help and guidance. Tell them what's going on and they'll get you hooked up right away.

If they're just getting her to a rheumy, they're totally lost and totally negligent. You can't count on them to help you. Your mom is in serious shape--I can't emphasize that enough. You've got to take the lead and get help today.

[Mario]

I just talked to the VF not to much around here in my neck of the woods but I am pushing on getting everthing started ASAP Thank you so much Sangye

[Cindy M]

Hi Doug, I haven't been on Cytoxan so I am wondering if it is because my sinuses are so bad because of WG. I think this disease might have done some damage to my sense of smell and I don't know if I will get it back. We had a fire pit last weekend and I could not smell the smoke which I was looking forward to. You know just relaxing around the fire and visiting. It does get kind of frustrating. I don't know if the other medication would cause me to lose my sense of smell or not.

[Cindy M]

Mario, I wish you and your mom well, thank god you have Sangye and the rest of the crew to help you out with this. They have more information and understanding than any medical teams out there.

[Mario]

that is the truth if it was not for Sangye and this sight who knows what I would Have done. Much Much apreciated

[Doug]

Hi Doug, I haven't been on Cytoxan so I am wondering if it is because my sinuses are so bad because of WG. I think this disease might have done some damage to my sense of smell and I don't know if I will get it back. We had a fire pit last weekend and I could not smell the smoke which I was looking forward to. You know just relaxing around the fire and visiting. It does get kind of frustrating. I don't know if the other medication would cause me to lose my sense of smell or not.

Go to the internet and look up each drug you are taking or have taken in the course of treatment. The immunosuppressant drugs are my first guess as to ones that affect smelling and taste, but others may, too. The not being able to smell smoke is amazing, isn't it? I have something like hearing loss, only with smelling, where I difficulty sometimes identifying a smell right away. Weird but true!