Hi Mary Ann,
I'm good. How are you?

I've been on the PM/DM board more because we've been in the throes of diagnosis/treatment for my daughter's DM lately, but I'm still kicking! Going for my plaquenil eye screen on Monday and I see my rheum on Friday. Hope everyone is well. 3 more weeks before I return to the classroom for pre-planning. :(

Hello, Ladies (and everyone!)
I hope everyone is having a good weekend. I have been thinking of everyone here, although haven't posted in awhile. I got back last weekend from spending almost a month on the east coast visiting family. It was a fun trip - spent some of it on the beach (although it was cloudy & rainy most days, but that's better for me!):) and then spent some of it close to NYC. Took the kids on a boatride around NY harbor to see the Statue of Liberty, Brooklyn Bridge, etc. It's a good way to see some sights without walking too much. Got to do alot of visiting with friends and family. Now we are back in CA. It is hot here, although not as bad as it could be....but we hit 97 today. Summer is always a little bit of a challenge for me here -- always trying to stay out of the sun as much as possible, which isn't always easy. I think the heat is affecting me more these days, too -- anyone else feel that way? Otherwise I am grateful to say that I am feeling good. Went to the Rheum. this week and it was all pretty uneventful (which is a really good thing)! Still have this hairloss issue, but seems there is not much he can say about it.... ugh....gets me down sometimes, but I keep trying to focus on the good.... My son had an appt. with the orthopedist (sp?) this week as well -- he has a degenerative hip condition -- but so far, so good - no progression in 6 mo. just what we hoped. So far no treatment necessary. We'll go back again in 4 month.

MT & Twac - hope you are both ok. Twac, how is your daughter handling her recent diagnosis? Is she getting treatment that is helping her to feel better? I hope so. btw, sounds like you are a teacher? Can I ask what subject/grade?
MT -- I hope you are feeling good and doing well. I missed reading your updates :) -- anything going on there? I know you had been very busy with wedding, etc... have things settled down? Are you still working as much as you were? How is your daughter feeling? Hope things are ok all around.

And hello to everyone out there.... as I said, I think of you all often and keep you in my prayers.
Take good care.
Marianne

Hi everyone, i havn't been around much recently. My mum fell and broke her wrist, so i have been looking after her alot and getting her to appointments etc. It has been really stressful and tiring. She has gone into respite for 10 days so we both can get some rest.
I have been on a lower dose of steroids than usual, and although it was a bumpy ride to start with, things have evened out, and i'm not feeling too bad. A few more aches and pains, but my energy hasn't got noticeably worse. I am grateful for that.
is it definately dm your daughter has twac? The last time i came on here you were still waiting to hear. If so its the same illness as my mother. She was diagnosed last year and has been doing quite well. I hope your daughter starts to feel better soon.
I hope everything else is doing well. Sending love and hugs to all of you x

Marianne, it sounds like you had a really nice extended visit!! I'm so glad. I know what you mean about the heat although we've had a little break from the intense humidity the last few days here in Georgia. My daughter is always talking about how Georgia weather is no good for her. Not so great for me, either.

I really hate going back to school in 3 weeks with it so hot. I've been told that I'll be in a portable classroom this year (trailer) because of our overcrowded school, but there is an upside to that----I can control my own thermostat!!! I teach high school---mostly seniors this year---Collaborative Senior English and small group study skills classes for students who receive special education services for a variety of disabilites.

Marianne and Jacqueline, my daughter has been on prednisone for about a week now and it has helped her skin and itching tremendously. Not sure about the muscles yet or the energy level so much, but she had a rheum appt last week with a blood draw to check her levels and her rheum increased the pred as a result, so she has only been on the higher dose a couple of days. Still, she's keeping her on just 15 mg until after the muscle biopsy results are in.

As far as diagnosis goes, she has some kind of "working" diagnosis, I guess?? The rheum says that regardless of the biopsy results, she will treat her the same......add methotrexate and try to taper her off pred. Apparently there is enough diagnostic evidence to warrant that. I'm really still a little confused about all that anyway.

According to the diagnostic criteria listed on the Myositis Association website, she already meets criteria for DM. The way her rheum explained it is that the reason they insist on a muscle biopsy is mainly to rule out OTHER causes for the inflammatory blood markers. She could have something else in addition to DM as well...but I surely hope not!

Also, her rheum has told us matter-of-factly that what we're looking at is DM, but she is very cautious about what she writes down for diagnosis codes which go to the insurance. Right now, she writes just plain "Myositis". I think she's trying to prevent future problems with insurance companies refusing to insure her. I'm not really sure it that's the best thing to do or not, but it seems reasonable anyway.

You asked how she's handling the diagnosis....pretty well, I think. She hates being sick, but she has been sick and on a journey to figure out what she is going on for many years now, so even though this disease can be downright nasty, she is somewhat relieved to have some answers and effective treatment. She is still soooooooooo tired and her hands are still pretty swollen and hurt a lot. The other pains are more manageable right now, I think. She hates the weight gain, so that's a battle, too.

Jacqueline, I'm glad your prednisone taper is evening out. I do hope you and your mom both get the rest you need and that she heals quickly. A broken wrist would have to be pretty rough. I'm so glad that she has done well with her DM. Can I ask what her treatment plan is? Always curious to compare and get new ideas to talk to the doc about.

Take care everyone, and have a wonderful day!

Hugs!
Teresa

Glad to see so many of you checking in!
Marianne- So nice to hear from you! Wondered where you were.
TWAC- I am glad your daughter is getting a little relief. I also hate the weight gain but feel so much better on the steriods. Her response to the diagnosis is so typical. I knew I had "something" for so long that the diagnosis was a relief. No longer was I some hypochondriac but a person with a disease. Not everyone understand what I go through, but I have been certified that it is not all in my head! May your girl get better every day.
I am so tired from all the traveling and go back to work tomorrow. Sigh. But the trip was nice but short. Just one day on the beach, all I could take, but we went into Savannah for a day and visited Savannah College of Art and Design. My artsy daughter is interested in this school. Very expensive, but I told her to apply and see if the scholarships come in. All their scholarships are talent based which is good for us. Her grades are OK but not scholarship worthy. She showed her portfolio and they were impressed. So we will see. It will be a longshot. I cannot afford a school that costs more than I make in a year!
She gets her wisdom teeth out on Wednesday. Had to take another day off work. Might be a mistake. I hope I have a job when I go back to work tomorrow. We are going to have a lay off in my dept at the end of the month. We are incorporating with another program and cuts need to be made.
My girl that had the heart proceedure is doing well. My newly married daughter is getting ready to move. Came to my house to go through her things that are left here. So much stuff! It will take many more visits.
I want to get my attic cleaned out as I cannot climb up there anymore. So, her stuff has to go! As does a lot of other peoples stuff.
Still having the hip pain and foot pain. Someday I will get to the DR. Too busy taking care of the kids. School will start soon and I will have more time. Have to get their stuff taken care of while they are off. Actually Band Camp starts in a week. Senior pics are Tuesday.
Well, have to bring the laundry in. Looks like rain. The dryer is still broken.
Take care.
Mary Ann

Have been prepping my body over the last week in preparation to start Methotrexate for the first time tomorrow! It could just be me reacting to everything, but I am nauseous just from all the supplements I had to start! Hopefully tomorrow will be a good day.

Hi Prince,
I'm interested in your "prepping" regimine for mtx since my daughter is about to start it as well. What do you mean?

Just trying to get my body in as best shape as possible to start (maybe it is the medical provider in me from seeing so many side effects in my own patients...), but started on new nutritional supplements in addition to the folic acid my Rheum gave me for a few days to get ramped up...also good to rid your body of alcohol to decrease the risk of liver toxicity as well as increase your hydration to protect your kidneys. Sleep, rest, exercise as much as possible, etc

Hi everyone. Still having fevers pain and fatique. On a emotional roller coaster as wel as my sister is dying. Hugs to all

Dallas, I am so very sorry to hear that your sister is dying. How heartbreaking that must be. I'm praying for strength, courage, healing, and peace for your family. Please don't hesitate to share your burdens with us.I hope your symptoms ease up as well. Stay in touch as you can.

Take care,
Teresa

Hello Everyone,
Hope everyone is doing good. Ive been hanging in there....I had a pretty bad flare after the 4th of July--should of taken it easier. =0 So ladies my Rheumy says I have a mild case of Lupus....so what happend to UCTD? He says it sounds like a mild form of Lupus....Oh well got to hang in there, and hope it doesnt get worse.
Dallas, Im sorry to hear about your sister...Stay hopeful....
Twac-Im glad your daughter is getting better- hope she sees good results on her medications...=)
Best wishes to all, and hope ladies are feeling good. =)

(((dallas))) so sorry to hear about your sister. I can't imagine how hard that must be. ...just wanted to send yu my love and let you know that i am thinking of you both. Hugs x

twac....my mu is taking azathioprine, plaquinel and prednislone for her dm. About 3 weeks ago she had a steroid injection because her skin on her face and chest started to get quite red again. She seems to be doing quite well again. One of her biggest problems at the moment is the itching. She is in respite for 10 days at the moment, due to her having a broken wrist after a fall. She and i needed the rest. I have 3 sisters and a brother and only one other daughter helps her now and again, but she has gone on holiday and i was so tired with having to drive to her house most days and make sure she has dinner etc.....i was also scared she would have another fall with only being able to use one arm.
i hope everyone is doing alright....love and hugs to all.

Dallas -- you will be in my thoughts and prayers. YOu have been handling so much lately. I will pray for your sister, as well. Please try to take care of yourself and know that we are all here whenever you need to "talk".
Marianne

Hi MT!
Thanks for the update :). Gosh, sounds like you have alot going on! Exciting that your daughter applied for that art school...fingers crossed for the scholarships! Hope things go ok at work at the end of the month. And hope you get some relief from the hip & foot pain. Just got my dryer fixed recently -- took about 3 weeks -- definitely a challenge keeping up with the laundry without it. (Although it's a challenge for me to keep up with the laundry WITH the dryer!) :)
Just wanted to say hi....
Hope Cat is ok?
Take care!
Marianne