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View Full Version : Face normal at 6mg's - hurrah



Carol
08-28-2009, 11:57 AM
I walked past the mirror a few days ago and guess what I saw? The old me. A normal face. Hurrah. Other people have noticed it too. It happened at 6mgs of Prednisilone. Now I have no excuse for the extra weight I have on in other areas. Summer is on it's way here in Australia so what an incentive. I have been dropping Pred 1mg every 2 weeks so am very excited. Everything is feeling OK although it's interesting that despite my strange gait and spending so much time lying down etc over the past 15months I have not felt any stiffness, rheumaticcy pains or sore back etc. But now I am. I am guessing that the Pred supressed all that. I've also had a tooth flare up at 6mgs so I suspect it was also suppressing a nerve problem in my tooth. I write it up on the medications stream so read about it there.

Doug
08-28-2009, 04:15 PM
I walked past the mirror a few days ago and guess what I saw? The old me. A normal face. Hurrah. Other people have noticed it too. It happened at 6mgs of Prednisilone. Now I have no excuse for the extra weight I have on in other areas. Summer is on it's way here in Australia so what an incentive. I have been dropping Pred 1mg every 2 weeks so am very excited. Everything is feeling OK although it's interesting that despite my strange gait and spending so much time lying down etc over the past 15months I have not felt any stiffness, rheumaticcy pains or sore back etc. But now I am. I am guessing that the Pred supressed all that. I've also had a tooth flare up at 6mgs so I suspect it was also suppressing a nerve problem in my tooth. I write it up on the medications stream so read about it there.

"Gad!" Carol thought. "This buzzard's stalking me!"

Not really! Congratulations on losing your moonface!:)

Cindy M
08-28-2009, 04:50 PM
Oh Carol, your moon face is gone! I know you really don't miss it, Congratulations, it must feel wonderful.

andrew
08-28-2009, 07:44 PM
Congrats! Well done! No way will you miss it :)

Sangye
08-29-2009, 01:50 AM
Yeah, you won't miss it. I mean, you can once again go through doors without turning sideways!! Maybe you can have a "Bye-bye Moon" party. The earth only needs one, you know....

And definitely even very low doses of pred mask a lot of aches and pains and even infections. I've been taking a mere 5 mg for the past 2 days. And I can't believe how much pain it takes away!

RCOSSIO
08-29-2009, 11:27 AM
Does this mean you will now start having "moon pie" for dessert?

jola57
09-01-2009, 02:53 AM
Bye bye moon face here comes Carol, I noticed that even at 15 pred, but getting rid of that extra poundage is proving to be soooo hard. Good luck, let us know how you are doing with the battle of the bulge.

Cindy M
09-02-2009, 04:49 PM
Speaking of preds, I went to my Rhuemy on Monday and my blood work came back better then ever so she wants to lower my preds from 80 to 70 mg for 1 week and then down to 60 for 2 weeks, 50 for two weeks and then I will have another appointment with her. I am a little nervous because I started at 60 preds when first diagnosed and every time I lower the preds WG seems to come back even stronger. I have an appointment on Thursday with my Opthomolgist and my rhuemy wants me to go over the pred plan with him to see if he agrees with it. She is working closely with him because my eyesight is being greatly affected by WG. She has also told me to up the preds on my own if I get down to low and just call and let her know, not to wait til she gets back to me. I would like to say wish me luck cause right now I feel the best I have in a while. Just need to follow that low fat, junk free diet.

Sangye
09-02-2009, 11:27 PM
I hope everything keeps going well for you, Cindy. Very glad your docs are working together as a team.

You can't stay at such high doses of pred for very long, so if the Wegs comes back with lowering it again, you may need to switch the immunosuppressant you're on.

Cindy M
09-03-2009, 06:51 AM
Thats what my Rhuemy said about the high dose of preds. I did start out on methatrexate and that didn't work so now I am on cyclo and the retuxan. Do you or anyone else knows or experienced the loss of smell with this. I have not had the enjoyment of smelling anything for the last 10 months and was wondering what the chances it would come back.

Sangye
09-03-2009, 07:35 AM
I don't have personal experience with that but have heard others talk about it. I'm sure they'll offer help. Are you losing weight as a result?

Cindy M
09-03-2009, 12:27 PM
Unfortunately no, I still have quite the appetite and as strange as this sounds I can still taste, but it has to be stronger tasting like salty, sweet, etc. I have tried eating more fruit but things like watermelon, or any type of melon is very bland, just like water. Vegetables aren't bad, but then I tend to get into chips, salty nuts. I have always been someone who likes the crunch of food, I find it comforting if I am stressed out so evenings when I can't sleep is pretty much danger zone time for me.

Sangye
09-03-2009, 12:40 PM
Boy, that's gotta be hard. Maybe carrots or celery dipped in homemade dressing? Cucumbers in yogurt/dill sauce? Too much salt is not good when you're on pred. I bet others here will brainstorm much more creative things. :)

jola57
09-03-2009, 02:37 PM
That must drive you bananas. I didn't lose my taste but develop cravings like you for salty and spicy food, except my tummy couldn't take it.

Sangye
09-03-2009, 11:53 PM
The salt cravings are due to adrenal insufficiency caused by pred. Sea salt is a healthy way to feed those adrenals. Just don't overdo it!

jola57
09-04-2009, 12:41 AM
I use sea salt for my soups too :)

Sangye
09-04-2009, 12:51 AM
What time are you serving lunch today? :D

Doug
09-04-2009, 05:07 AM
Thats what my Rhuemy said about the high dose of preds. I did start out on methatrexate and that didn't work so now I am on cyclo and the retuxan. Do you or anyone else knows or experienced the loss of smell with this. I have not had the enjoyment of smelling anything for the last 10 months and was wondering what the chances it would come back.

I experienced it with Cytoxan. I do have more of it back (took Cytoxan last in April 2005, I think it was), but the condition persists. I smell and taste things, just not as fully as before. Anyone who has coffee at my house will understand that's why I make it black-hole-in-space black, and why my use of spices in sweet goodies tends to go off the chart. Some tastes are more detectable than others.:(

Doug
09-04-2009, 05:08 AM
Unfortunately no, I still have quite the appetite and as strange as this sounds I can still taste, but it has to be stronger tasting like salty, sweet, etc. I have tried eating more fruit but things like watermelon, or any type of melon is very bland, just like water. Vegetables aren't bad, but then I tend to get into chips, salty nuts. I have always been someone who likes the crunch of food, I find it comforting if I am stressed out so evenings when I can't sleep is pretty much danger zone time for me.

My experience exactly! Some foods, initially, tasted horrid. Mostly my favorites! I used to use lots of catsup, but foods with vinegar or tomato (Everything I like best! Tomato sauce is in all the good foods, for example.) gagged me. I was like that until I got off Cytoxan, then, graduallhy, I was able to handle them again. I didn't liike them as much, though, because of the memory of vomiting....!

Mario
09-04-2009, 09:45 AM
Hey Guys long time no see I hope all i well. I Have a quick question my mom is on the roller coaster of her Life cause of the pred. It started at 50 mg and dropped 10 each month when I got to 30 for a week or she got wacky on me she was not abel to speak or make sense. So they upped the dose to 60 mgs this made her very very week to the point where she could not get out of bed. So I talked to the Doc and he dropped it to 20 so we where good for about three days and then the cookooo lady would make an apperance for about 30 min or so then she was back to normal any ways after that episode she has been very disy she can not stand up because she feels she is going to fall is there a med I can give her or any advice? also how should the pred be taken all at once or split night and day? Thanks guys

Sangye
09-04-2009, 10:14 AM
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
09-04-2009, 12:13 PM
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
09-04-2009, 12:22 PM
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
09-04-2009, 01:24 PM
To be Honest the Nephroligist seems like he does not have a clue I was just told to get a rheumatologist (http://www.wegeners-granulomatosis.com/forum/medication/#) this last week she became a weg back in april. do you recommend any particular school in California?

Sangye
09-04-2009, 11:22 PM
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
09-05-2009, 02:22 AM
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
09-05-2009, 02:56 AM
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
09-05-2009, 02:59 AM
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
09-05-2009, 04:12 AM
that is the truth if it was not for Sangye and this sight who knows what I would Have done. Much Much apreciated

Doug
09-05-2009, 04:57 AM
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!:eek::eek:

Sangye
09-05-2009, 07:39 AM
I don't have a problem with smelling (stop laughing, you know what I mean), but I often can't figure out a familiar smell. I have it with voice recognition, too. Close friends can call and it takes me a minute or two to figure out who it is. Caller ID has helped. Before that, my friends had to say "Hi, it's me, Jane," or risk me asking "Who's this??" over and over. I think I'm missing a little connector chip in my brain. :rolleyes:

Mario-- you're welcome. Good to know you're taking action. I was merely the group member who happened to be online when you posted. Anyone on here would have pointed you in the right direction post-haste! :)

Carol
09-06-2009, 05:46 PM
I'm sure my tastebuds weren't as sensitive in early days because I kept on wanting to eat spicy and very tasty foods to try to excite my taste buds. It seems to have settled down now but my desire for food has also normalised. Carol