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Below are the 20 most recent journal entries recorded in Rheumatoid Arthritis' LiveJournal:

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Friday, April 20th, 2012
5:55 pm
Help fight lupus!
I started a petition on Care2 urging President Obama to devote more funding and attention to lupus research and awareness -- please sign it and help forward it in whatever way you can! I know that just about everyone's on Facebook, Twitter, all kinds of sites, so if you can promote the cause to your friends in even one other venue, that's a huge help.

I have no idea if these kinds of things really help, but hey, it's worth a try, right?
Sunday, January 8th, 2012
4:56 am
Total knee replacement: Yay or Nay?
Hello, my fine co-sufferers!

Having had RA since '97 and replaced both my hips in April '10 with quite satisfactory results, I am now in the market, so to say, for a knee replacement or (hopefully?) two.
However, it's been my understanding that knee replacements are fussy and difficult things that require considerably more recovery time and strengthening exercise, and also are less stable compared to hip prostheses. That said, it'd be mighty nice to have somewhat more functional knees, and hence, my questions are:

- Those of you who have had total knee replacements of one or more knees, how did you prepare for surgery and how did you exercise throughout the recovery period?
- If you had a job that required you to stand/walk a lot, how long did it take until you were able to go back to work?
- What range of movement can I likely expect? Can I ever sit on my knees again? (I haven't been able to do that for ... 13 years?)
- Do any of you have rheumatoid varus or valgus deformity of the knee that was corrected through so-called constrained condylar knee replacement, and how is your range of movement with this type of prosthesis?
- Any complications during surgery or recovery?

Now for a question that has little to no relation to all of the above: do any of you have experience with leg ulcers of any kind? I developed a chronic venous leg ulcer sometime in September; I've been through two courses of antibiotics for recurring infection and have been wearing compression stockings for the past 6-7 weeks without any visible result. I even dropped both Enbrel and MTX shortly after the ulcer appeared in the hope that my immune system would get going and fix stuff on its own, but sadly this has not happened.
Suggestions towards my further course of action are most welcome.

Thanks in advance! :)
Wednesday, July 20th, 2011
8:10 am
 Hey, how's everyone doing? Hope you're flare-free with the hot weather!

As always I come bearing...questions. For RA, I am currently on Enbrel, methotrexate, plaquenil (hydroxychloroquine), folic acid, and Relafen as needed. I've been doing pretty well for the past 6 months to a year, and I've been on plaquenil for a few years now. 

At my last appointment (about 2 months ago) the doctor said she wanted me to start going off the plaquenil...I guess if I'm doing well, might as well start taking away meds, right? Hopefully get down to the "core" ones. I take Plaquenil twice a day; she originally said I could just stop if cold turkey or just go from one a day to a month to none. 

I've been doing the one a day and I feel like CRAP. Especially this past week. I went grocery shopping and for two days I had to walk pigeon-toed to get around, my fingers feel sluggish, I feel tired...just CRAPPY.

For those of you who have gone off of Plaquenil before...is it something that you're just not supposed to notice a difference with if you stop cold turkey and your RA is doing well? Or is it something like when I had went off prednisone, and your body has to get used to not having it again and may throw a hissy fit?

I know that these are questions for the doctor, but for right now I want to hear other people's stories. I went through a similar feeling when I went off prednisone a year ago and just...ugh. If it's something to EXPECT that's one thing, but if it's something that's telling me to go back ON the plaquenil, I'd rather not be hanging around off-medication when I need it.
Sunday, July 10th, 2011
4:25 pm
Remicade um...wearing off?
Brief history: I'm 33 with endo, RA and likely Lupus (my Rheumy is still figuring that one out but the RA is certain). I was diagnosed in October of 2010 after many many years and BS. I started on 20 of prednisone and 500 of sulfasalazine twice a day. I worked up to 1500 of sulfasalazine a day plus Humira twice a month, then Humira once a week. That wasn't working well enough so I was taken off sulfasalazine and put on Imuran + Humira, which brings us to a few weeks ago.

So Imuran + Humira wasn't doing it so she took me off Humira and started me on Remicade. My first infusion was on July first and it was like magic. I haven't felt that good in YEARS and now it's started...wearing off. My next infusion is on the 15th and I assume it will provide the same results. For those of you on Remicade: is this normal? (at least in the beginning) That you start to feel all hurty before the next infusion? On Humira I felt like butt for 3 days after the shot, then a couple days of pretty good then two days of going downhill until the next shot. I didn't get the "feeling like butt" part after the Remicade (YAY!) but I'm starting to go back downhill. So yeah, do others feel this way? Kindly tell me this is normal :)

x-posted to autoimmune.
Wednesday, June 15th, 2011
9:55 pm
Last Wednesday, I had an upsetting experience at my chiropractor's. My rheumatologist wanted me to try physical therapy for my left hip and knee and last week was Day 1 of PT with my chiropractor. The PT was going to have 2 parts: work with a balance board and stretches with this chair:

He prefaced the instruction of the chair by saying that "Everyone can use this chair."

Long story short: I couldn't. The reasons aren't important. I woke up the next morning unusually upset and realized that it was because not being able to use the chair that "everyone can use" had made me feel like a failure. Further, I realized that this was at the root of why I always hated PT growing up: that it wasn't the obscene amount of pain, but the sense of failure--that not only could I not do what "normal" others could do effortlessly, but that I couldn't do it even with practice and an obscene amount of pain.

So, I lay in bed ruminating over this sense of failure, and eventually something clicked. There certainly was a failure involved in that PT session and in all my past PT sessions, but that the failure wasn't mine or my body's; instead, that the failure was the expectations of others. My body, when you think about it, is incredible. That it's gone through so much and can still do so much is worthy of praise. My body has an extreme ability to adapt. I find myself doing things in a new way without even thinking about it.

My body is not a failure.

But if you're comparing my body to "normal" bodies without taking into account what my body has had to go through, the failure is not mine. It's yours.

(x-posted like whoa)

Current Mood: good
Tuesday, June 7th, 2011
7:57 pm
Bowling for Myositis - a fun fundraiser in CT!
Hello all! I am trying to hold a fundraiser for myositis, a rare autoimmune disease that severely impacts a person's muscle function. We need more participants to help make this a success! So, if you live in the state or know someone who does, please help spread the word...

What: Bowling for Myositis
When: Sunday, June 12, 1:00 - 3:00 p.m.
Where: Laurel Lanes, Plainville, CT
Why: To raise money and awareness for a serious disease that many have never even heard of

The cost is $20 per person, which includes 2 hours' bowling and shoe rental.

There will also be raffles, including a 50/50 and various prizes, including a "Night at the Movies" package with free movie passes, popcorn and drinks for two, tickets to Connecticut Cabaret Theatre and the New Britain Rock Cats, a huge basket full of assorted Penny Press puzzle books, a hand-crafted necklace from Designs by Karen, and a handmade floral arrangement. All profits will go directly to the national Myositis Association.

For more information, please email castlesburning@gmail.com

To learn more about myositis, go to www.myositis.org

Current Mood: hopeful
Tuesday, May 3rd, 2011
10:44 am
When it rains it pours?
 Hi all,

Hope you're feeling well.  New blog post up, finally.

Monday, March 28th, 2011
5:27 pm
new blog post - JAM!

Hope everyone's feeling well.  Finally posted a few pics from the Juvenile Arthritis March if anybody's interested: http://inflamed.wordpress.com

Thursday, March 10th, 2011
9:58 pm
Injection Question
Ok question time...does anyone who injects (Humira in my case) notice a different reaction depending on which side you inject?

I've noticed that last 4 times (so twice in each leg) that when I inject on my right side, within a few hours you can't even tell unless you look for the small puncture very very closely - but when I do it on my left, I get a large red raised area (kinda looks like a big welt) that last for up to 3 days and is warm and tender to the touch.

I'm injecting on the same spot on each side, making sure it's into muscle etc, I always leave it out before injected for the same time. I only noticed this after my last appointment and I don't think it's worth making a special appointment and the Humira people are about due for their nurse person to call for a follow up I'll mention it then - more just curious for myself if anyone else has this?
7:32 pm
Humira and methotrexate injections
Hi, I was just wondering for those of you who do combo meds, do you do them on the same day or a few days apart? I havent done this combo before and I havent taken humira yet, but I've taken enbrel and it made me tired and so does methotrexate. Is it best to just get it out of the way over the weekend, or would it be better to split it up? Thanks for the feedback :)
Monday, February 28th, 2011
2:49 pm
blog time
Heh, I accidentally wrote "blob time" first.  I do feel like a giant blob.

Anyway, new post...blob blob

Thursday, February 24th, 2011
4:10 pm
Imminent Flare?
I've been noticing a dramatic increase in joint pain and stiffness since Monday this week. Granted, Monday I know I over-did—though I was acting under the assumption that I wasn't (which was a valid assumption at that time)—by spending an hour cleaning (litter boxes, vacuuming with the Swiffer, toilets) and then 25 minutes belly dancing. The pain began Monday night and got worse on Tuesday. It started with my left hip and left shoulder and then spread to my right knee, ankles, hand knuckles... I'm grateful that my jaw and neck are doing okay, but man, my legs are in bad shape right now. I just attempted to belly dance—I'd been doing 25 minutes 4 times a week and had only done one session so far this week—and had to stop a few minutes early because my right knee was hurting. This doesn't bode well.

I'm seeing my rheumatologist on March 8th and am expecting a medicine change. The question is: to what? Orencia was what she mentioned at my last appointment, when some of my blood work indicated active inflammation; but Orencia is an IV. Now, I don't have a problem getting the IV: the problem is getting TO the office (half an hour away and I'd need a ride, since Benadryl is always given with Orencia) and paying for it. Orencia, as an IV, would be covered under Medicare Part B, which means we'd likely be responsible for 20% of the total cost. I wasn't able to get a solid assessment of cost by Google searching, but the numbers I was able to get indicate that 20% could be $5000. For a treatment I'd need twice in the first month and then once every other month after that. Now, unless I'd qualify for some sort of financial assistance from the company that makes Orencia or the number is a LOT lower than that, that's just not a number we can work with. Period.

So, I'm hoping she has some other ideas for me. I was on Arava back in high school: it made my stomach hurt all the time, but I'd be willing to try that combined with Enbrel. Perhaps the combination of the two would work. I'm also going to ask about Simponi, Cimzia, and Kineret (daily injection, ugh) which are subcutaneous injections like Enbrel and would thus fall under Medicare Part D coverage.

I'm trying to remind myself that I'm well past due for a flare. I've been on Enbrel now for 10 years; it's wonderful that it's worked so well for this long. Still, I can't help but feel disappointed.

Current Mood: sore
Wednesday, February 23rd, 2011
9:49 pm
 hi all!

New blog posts up - http://inflamed.wordpress.com
Thursday, February 17th, 2011
1:37 pm
rejections, injections..same stabbing pain!
hi all

New blog post up if anybody's interested - http://inflamed.wordpress.com

Hope you're all feeling happy and well and pain-free!

Friday, January 14th, 2011
11:01 am
Hi all--I'm in the midst of battling my insurance company to stop denying my dr's scripts for Celebrex ( have RA/inflammatory arthritis--the rheumatologist vacillates between the two). I've done all the steps, but BC/BS keeps putting me through hoops and adding more obstacles. So, now they tell me I have to try mobic (meloxicam). Are any of you taking this? I'm also taking methotrexate (5-2.5 mg./week) and have read there is possible interaction between the two. I'd welcome any of your experiences. Thanks!

Current Mood: aggravated
Monday, January 10th, 2011
2:54 pm
New RA blog post! Exciting, eh.

Tuesday, January 4th, 2011
5:54 pm
hi there all.

i have RA/PA for 30 years. i'm 35.

i was in emergency last night for ridiculous pain. they did xrays and found fractures in my vertabrae (thoracic region) as well as severe degeneration in my spine (again thoracic through to the sacrum this time). they told me i have osteoporosis, the fractures and degeneration and that it will continue to worsen.

they said "it's a mess in there". i like young doctors.

anyway, so. what's it like to be like this for a while? who here lives with this situation? what am i looking at for the next year? 5 years? 10 years? right now i am having problems walking and standing. it's happened quite suddenly. it's freaking me out.

THE PAINKILLER THING: also, to complicate things, i am allergic to opiods and opiates. HELP ME PEEPS! what on earth are the alternatives? i am on epilim, zoloft, topamax, nexium, celebrex, methotrexate, megafol, panadeine forte but i need something more srs for the pain.

anything would be good.

- oco

Current Mood: sore
Thursday, December 30th, 2010
2:01 pm
hey all -

Blog update! Whoohoo.

Thursday, December 9th, 2010
3:08 pm
new post
Hi all -

New RA blog post! Whoohoo.


Tuesday, November 9th, 2010
5:04 pm
Any of you on Rituxan? What have been your experiences with it? I've been on Enbrel for 10 years and my JRA isn't being as well-controlled as it used to be. Also, are any of you on Medicare? Have you had any problems getting Medicare Part B to cover Rituxan?


Current Mood: curious
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