View Full Version : update

01-04-2010, 03:35 PM
Well I was doing a little better! My primary put me on a blood pressure med to combat and prevent the migraines. He said it might take a few days to a few weeks to kick in. I have mad 4 ER trips for horrid migraines. Man that really sucked. I started my prednison taper down from 20 mg as my joints were feeling better and thought maybe the plaquenil had kicked in. Well no such luck I got down to 12 mg yesterday and this morning was utter hell. I woke up and could not open my hands at all. My hubby rubbed lotion on them and massaged them open for me. How sweet is that? God I love that man!! :) My hips, knees, shoulders, elbows, hands, feet, ankles, and ribs are absolutely killing me today. So I raised my pred. back to 15mg and will reamin there for a while if it helps the pain that is. Otherwise back to 20mg. I am also losing a whole lot of hair. it is very noticeable to. Clumps of hair fall out in the shower and theare is so much hair on my pillows and anywhere I sit. I think I'm going to go bald again. I had a flare in 2000 that made me lose all but a little of my hair. I was basically bald. not looking forward to that happening again. Might have to get the wig back from my aunt.

We did have an ok Christmas I suppose. We sprung for a new microwave. That was our present to eah other. My hubby did get me a sweatshirt and a long sleeve T shirt of the WSU Cougars. Yeah GO COUGS! we had his mother over for Chrstmas she is 84 and has really bad dimensia. It is really hard to talk to her as she can not say what she means to say. She changes the subject and doesn't comprehend hardly anything we say. It's really hard to see her like that. I made a Ham wth a cranberry glaze which turned out absolutly yummy! We did finally get a tree. We went up to the mountains just a few miles out of town and cut down a little 4 ft fir tree. Its cute! We put it up on Christmas day put some lights on it and thats as far as I got. No decorations as I was just to pooped to do anything. The migraines just wipe me out so much not to mention my vitamin d levels are in the tank.

Here is hoping that 2010 will be a much better and healthier year!
Much love to everybody on WHL!

01-04-2010, 08:54 PM
Hey Smokerscat,
It's good to see you back again. We had a quiet little Christmas, too - just Jeff, me and the cats.
I hope that you can get the right mix of meds soon, so that you feel better. Has your rheumy put you on mega-doses of vitamin D? Mine has, and it helps with the fatigue.

01-05-2010, 10:18 AM
I'm sorry to hear that you are in pain and losing hair. I hope that increasing your Prednisone will help to ease some of the pain. I'm not sure if it helps the hair loss or not, may have to just wait until your symptoms subside before you see re-growth again.
I am glad that your Christmas was nice and it was so sweet of you to have your husband's mother. I imagine that time with her, now, is very precious to both of you.
Please continue to take care of yourself and I do hope that you start to feel better very soon.

Peace and Blessings

01-05-2010, 01:28 PM
Hi SC...glad you had a sweet Christmas and you've got such a sweet husband! Aw...that man is awesome! Sorry to hear you're dealing with so much pain and losing your hair. ((((Hugs))))

01-05-2010, 05:15 PM
Glad to hear you are feeling better smokerscat. I know for Karen(my Fiance) had problems with my migranes and Karen uses Darvocet and Motrin which is perscribed by her doctor and it seems to really help with the headaches. Karen has SLE. Had this for 27 years. But Karen only takes these when she really needs them. And this way your system doesn't build up the tolerance. Karen also is having Vitaman D issues as well. She is just taking a supplement.
Glad to hear you also had a good holiday and glad you have such a great family. And I feel for your hubbys Mom. It is hard watching this when you care so much. Hopefully thing's will get better with understanding and support. Looking forward to hearing more about better days like this.

01-05-2010, 07:33 PM
hey there smokerscat.

so glad to hear from you, but so sorry to hear about this horrible flare. You know your body and you know what it needs, please be kind to yourself.

hey, i have a business idea for you.....you could make a fortune if you hired out your husband for "lupus massages".....oh, that sounded so delightful. Thank goodness for the little things in life, and a hand massage is at the top of the list.

Ham with cranberry glaze - ooooooh, made my mouth water.

Oh, yuk on the migraines....mine have gotten much worse in the past few months. My dr. prescribed a generic for Imitrex, and it seems to be working pretty well. I hope your dr. can find something that will help you.

stay in touch lady....you know we care.

01-05-2010, 08:24 PM
Wow, smokerscat, sounds like you've been through the mill with all of those migraines and the Prednisone tapers. I sure hope you don't lose your hair-again. I have been shedding horribly, but I have very thick hair so it's not too noticeable, unless you're looking at my clothes, the seats in the car or the shower drain, then there's hair everywhere.

I'm glad that your husband is willing to give you massages to help reduce your discomfort. Support like that is invaluable and you're lucky to have it..

So sorry that your MIL can't follow conversations and such. It's very draining for you, I'm sure, but she probably loves your company and appreciative of the invite.

Hang in there!

01-06-2010, 07:56 PM
Hi marla,
I am taking 50,000 units of vitamin D and 1500 mg of calcium! I think it;s starting to help my fatigue a little. Glad you had a good Christmas!

01-06-2010, 08:00 PM
Thanks to everyone who answered! I have been through a rough go of it these last several months. I keep hoping that the plaquenil will kick in at some point, but as of now I know for sure it hasn't. :( The prednisone works well if I can find the right levels. I don't really want to take 20mg of it for that long. I am at 15 mg hoping it will make enough difference that it will calm things down again. I just want to NOT HURT ANYMORE!!! Is that too much to ask? I know I am sure we all feel that way! Take care all and thank you again!

01-07-2010, 09:38 AM
So sorry to here about the pain you were in and hope things are brighter now. When i was put on methotrexate i was worried about losing my hair and he told me to take 1200 mg of folic acid every day except the day i take the metho. I have not lost muck so i do not know if this will help you or not. Bonita