MY MEDS DON'T SEEM TO BE WORKING!

[Ihurt]

I think Im pushing too hard. I think doing the bus run is killing me everyday. I think having a 15 year old daughter who loves to plan is killing me too.

I just want days when I can sleep. Sleep is the only thing that feels good anymore. I love taking naps....I love that deep REM sleep where nothing is real, only dreaming happens. No pain. Pain meds only work but so much, and now my lower back (spondylitis) is starting up.

I guess I really am tired too. Body is aching so bad you'd think I have the flu. Swelling in at least 10 joints. I've been fighting taking the steroids each time I see the Rheumy. Last year's bout with the steroids ended me up in the hospital with a d&c, round face, 30 extra pounds, and a psycho personality :eek: (Im told all Addison's symptoms).

But boy would I love to have my energy level back. I am moving (slowly and painfully), but today I want to curl up in the hot tub and never come out...just sleep in it.

Weather sucks. Snow showers, gray day, cold always cold!

IS THERE ANYONE ELSE OUT THERE THAT STAYED ON HUMIRA FOR THE SIX MONTHS BEFORE IT STARTED TO REALLY WORK?

Got my last two records from the doc the other day (I keep my own file in case I have to go to another doc). On the bottom read the words:

"PS-wonder about referral to NY Center or Cleveland Clinic for treatment of her arthropathy, etc. She knows about clinical trials in Orencia for both skin and joint disease, which might be appropriate is she does not respond to the 2 TNF drugs"

OK....should I panic now or later????? I have already exhausted Enbrel and Remicade.

If anyone can tell me anythng more about Humira...please do.

[mamaooch]

Elaine,
Sorry that your are hurting. I know how you feel. I went through Enbrel, Humira and now Remicade (every 4 weeks) and MTX. Feeling tired all the time is the pits. With the holidays rapidly approaching I don't have the energy to do all the things I need to get done. I just take it one day at a time and hope tomorrow will be better.

((HUGS)) to you! I hope tomorrow is a better day for you.

Take Care,
Cindy

[deemah]

Elaine,

So sorry to hear that you are down and in so much pain today. Wish I could do something to help. Hang in there. Things just have to get better for you, and they will.

Hugs,
Ruth

[tmartha]

I haven't been on Humira, but I just wanted send a hello and well wishes. Sleep, sit in the hot tub, take it easy as much as you can. It's hard. Wish I could help.

[RichJ]

hi elaine,
im sorry to here that your meds aren't working as good as they did. my pain is getting better. i can move more. i wish you the best my friend

try and have a good day all

richard

[Re]

Sweeti pie I am so sorry that you are in pain. My PCP bumped my lortab 7.5 up from 3 a day to 4 a day. I would just prefer IV morphine LOL Just as you said the meds only work so much I have only had two injection of the Humira and the rheumy said atleast 3 months before I see any change. I will pray for you sweety
We all ove and care for you.
Re

[ouchyk]

Elaine,

I can't for the life of me remember how long you've been on humira now.. :confused: I think re is right 3-6 months to see what your going to get out of it. Patience is not a virtue of mine so I can totally understand not wanting to wait around to see whats going to happen. :o

I wonder if you can push it up to once a week? I've found that somewhat helpful... to be honest I flare a bit no matter what, but can't help but think how much worse I would be if I wasn't on it at this dosage...and I do notice a difference from yesterday till today doing my shot...see me wed when it starts wearing off ugh!

Feel better. Everyone hold hands we'll get thru this ( Tmartha used to say this ).... :)

Karen

[Ihurt]

I just took shot number 5 last week which equals 10 weeks.

Karen you right, and Patience is not my strong suit either, especially when Im in pain. It is only helping MAYBE day or two... and that's usually only after the MXT-this is why he just lifted my MXT dose. I DOUBT very strongly he would put me at a once a week dosage, he's very conservative with the bio's especially with me (i.e. swollen optical nerve)! I did think about that, and I will try to talk to him about it...but I hate this wait.

Im a little better today, NOW that the SNOW is finally on the ground!

We have four inches so far in these mountains. The good part is I PROBABLY won't be doing any driving tomorrow (YEAH!!!!!) I can sleep.

Im up moving around today, albeit with pain. Trying to stretch the S-1 and L5 discs that are flaring. I started dinner (pot roast in my clay pot) and so now I can go into the hot tub. Snow is supposed to continue through till tomorrow at 10 am. I'll be better now that the pressue is not so bad, but i still want to be well enough to go out and run in it!!!!!

I know...patience...patience....I hate it.

Re, Rich, Martha, Rith and Cindy...thanks for the thoughts and prayers. I kinda lose it when Im in pain...especially when it's the kinda pain the pain meds don't touch! UUUUUURRRRGGGGGG

HOLDING HANDS NOW.......

Love Elaine

[mamaooch]

Elaine,
Glad you are a little feeling better. I know how much pain can take you out! I wish we had your snow down here in NC, it is 68 degrees outside and I am fighting a cold. It was in the 50's last week and this coming week it is going to make it back in the 70's. The weather here is crazy. :eek:

My thoughts and prayers continue to be with us ALL.

Take Care,
Cindy

[pgerpup]

Elaine,

I hope you start feeling better soon. I wish I had the answer, but I really don't! I don't even think the docs have the answer. Praying for you to feel better!

Love,
Fay

[Tilldee]

Elaine,
Me too, me too, wishing that if you can't at least feel better, I wish you all good thoughts. Running in the snow, making a snowman with the kids. It's all good. I don't like cold, winter or snow, due to the pain issue, but when I didn't have pain I was right out there in the middle of things.

I like the "Holding Hands" part. We shouldn't forget that.

Prayers,
Tilldee

[tmartha]

Wow, I didn't think anyone remembered me - thanks, Karen. :) There are a lot of people here I don't know and a lot of 'faces' missing. I had no computer for over a year :( so I've missed a lot. Thanks for reminding me about holding hands. It helps me today.

[Ihurt]

Especially with people I love and care about! That's this group.

So...now that my meds are doubled and Im now coming down off the Steroid dose pack...pain is starting to creep back in, ALTHOUGH...not at the rate it had.

The real test of seeing what the doubled Humira is going to do will come later this week when Im not on the steroids any longer. It's two days before the shot, with one dose of medrol left. On a scale of 1-10, the pain is a 4.

Im using that weather charting for Arthrisits from www.AccuWeather.,com as well to compare and see how much of an effect the weather is having at the same time (cold wet and damp here).

But again the real test is going to be from Thursday on. Both MXT and Humira shots on a Wedenesday now and last week I felt wonderful (but then again Medrol was in the mix). I have to measure this without the medrol and see what it comes to. I can't always stay on Medrol (ALTHOUGH I WOULD LOVE TO...right Karen????lol)

Wish me luck.

BTW...ANYONE can go to www.Accuweather.com, type in your zip code and you can find the arthtiris index for that day-it's really neat, and mostly accurate.

Elaine

[Re]

checked accuweather and weather.com and yep that is what I thought. Pain and stiffness well no wonder it is VERY HIGH!
Re

[nyoki]

Where on the accuweather website do you get that info? It's a very busy page.




Blaidd Drwg

[Ihurt]

There a spot up top that you type in your zip code. Then the weather for your area comes up, and in the middle column, three quarters down the page there it is. It's also marked with the "Arthritis Foundation" logo.

[nyoki]

Got it. Excellent...ty.

Blaidd Drwg