Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Enbrel newbie to be!

Hello everyone! Just wanted to update my flare status, and say that I will be joining the biological family!

I've had some bad symptoms pop up since September... Before that I was pretty pain free for almost half a year (take a month or so,,,). I'm actually typing with one hand! Things have gotten pretty bad. Even my knees which I had just gotten fluid pulled out of and injected with steroids about two weeks ago, flared up again within a week along with my other knee, wrist, hand, back, and ankle. (Which was swollen for a while, but seemed okay. What sucked was that this time I live alone! So no one to really help me do anything. (I'm sure other askickers have experienced this... and i commend you for your strength!!). Its hard to do anything with one hand!! (no leg strength/bendability)... Gosh did i mention, I have no elevator in the building?

Well, I limped my way to the doctor, and we finally came to the definitve decision of using biologics. It was so embarassing because I don't reaaly cry, but I am so emotional when I'm in pain! And i was bawling!! Well, he added some new nsaid naproxin and an antacid, along to my list of sulfa, methotrexate,folic acid cocktail (we now minus'd the celebrex). I also have been taking hydrocodone the last few days, but I forgot to bring it up with my doc, and don't know if it is good on the system-- with all the other meds.

I took some a blood test, some chest xrays, and a tb test... if all goes well I will start on Tuesday! hooray!

Hey Blu-I'm a newbie to this stuff too-you can see my post a few below yours...

I was on Naprosyn, 500 mg BID, Pariet to protect my tummy from this, and Sulfasalazine. Now that I'm on the Enbrel, I can't take the Sulfasalazine-it's contraindicated for Enbrel, but apparently MTX is often done together with Enbrel. I have endocet for pain, and I usually cut these in half, because otherwise I can't function. Anyway, I've been off the Sulfa for nearly 2 weeks now, and I'm feeling it for sure, since the Enbrel has not kicked in for me yet (and I've been in a nonstop flare since I sprained my foot and ankle on Sept. 2-nasty). I keep working out in spite of this.

I am so sorry to hear you're so crippled by your recent flare... Where do you live? I know there are some community programs out there to help those who are shut-ins-perhaps you could speak with your doctor about this.

Anyway, cheers to you, and all the best-hope things work out for you...

I just read your post, Overcomer. Our latest flares have started at the same time!! Naprosyn is like the same thing as Naproxen. (same medication!). I'm actually in South Korea right now, so I'm missing home (US) terribly. This was also a conflicting factor about enbrel to me, because Korea has higher rates of TB than US.

Hhah. I tried to work out on my good days, in vain. I'd go for a few days after i feel better, and then flare horribly! It's kind of funny. When my hand and ankle got hurt, i didn't care (was relieved that it was in those locations) and kept excercising!! It's really important to me as well, because well.. you never do know when you won't be able to work out. At first I was relieved that I didn't have to work out (because I become addicted), but now I want to go back!

To everyone's surprise, I have not missed one day of work! I would, if I were in the US, but I really don't have anyone to cover me, and I really hate covering other people... so I just bear it. I'm a teacher here, and there are no subs... rather, we ARE the substitutes. I think the only day i'd miss work is if i was throwing up... in either the mouthside or the other end.

I stay seated once i am at work. I only work 6 hour days, so it's not too bad. The worst things are my headaches. Also, it used to take me about 7 minutes to get to school, it now takes me about 20. Getting ready takes... forever. My co-workers all know that I am not well (but it is very hard to explain to them).I tell them that I am becoming a grandma (no offense to any grandmoms on board).

On weekends, i pop a tylonal pm or lately hydrocodone and stay in bed. i only get up to use the bathroom!! (lately at least). Bad, but I don't drink much water like I'm supposed to, because it's literally a pain in the @rse to get out of bed! (Especially if i've been laying in one all day!)

I wasn't able to work the first time I flared. That was probably because i was on no medication. Oddly it happened at exactly the same time of year!

anyways, i'm really excited. i kind of hate needles, but I've gotten used to them. I just don't know if i can inject myself! Ouch, i really hope the enbrel kicks in quick...

Let me know when it kicks in for you!!! We can be enbrel buddies!

Ah yes, another one with "suckitup-itis"... You're like a Timex watch-you take a lickin' and keep on tickin'.

Just have to keep on keepin' on. I know what you mean about taking time off. I haven't missed work due to AS, but I have to IBS symptoms-and then only once. However, I was off the whole month of Sept. and on crutches due to the sprained foot/ankle incident. Still limping on that one... Anyway, the therapist told me I needed to drink more water-I merely looked at her and plainly told her that even just going to the bathroom was a major event!!! I was a real mess in Sept.

Have you tried heat on your back? I rest on my heating pad every evening-it really helps. A hot shower really helps a lot of us in the morning-you could try that... However, in bed the whole weekend could be making you feel worse-moving around seems to loosen us up, it's just breaking through the pain to get to that point. I don't know if I'll ever get addicted to working out-I really just do it for the good of my health-I was a mess before I started and it really helped me, especially with the pain that develops in the ribcage during sleep. I have some testimonials in the Sports forum dating back to Spring/Summer of '05 concerning my life with AS.

Enbrel has not kicked in yet... I've only had 2 needles thus far. I guess when you compare the momentary discomfort of the needle to the pain associated with AS, well, it's really insignificant.

So are you getting the Enbrel in Korea, or are you heading back to the US? FYI, headaches are sometimes a side effect with Enbrel.

Let us know when you're going to start...

Lol. Yeah. I've been told I have to drink more water to flush out the system. The bathroom IS a big event. Lol. Only AS-ers can understand that one.

If you drive to work, you can get a handicap permit... If you get a doctors note, and fill out a form. In case you haven't already. It may be worth looking into.

Yes. I have a heating pad I use. If I sleep with it, I always end up waking up because I start sweating. It may be that my heat is on too high or something, but it's been happening lately.

I know it's good to keep moving, but when it affected my knees, it was just really too painful.

Actually working out helped to rehabilitate me as well. I climbed a small mountain (a happy feat), a little before I flared. That was something unimaginable last year. I will check on your testimonials.

I have gotten approved for Enbrel in the US, but I never tried it. I had my first shot this morning. No complaints so far. Nothing noticeably improved. However, it is the PRICE that is killing me. I have insurance here, but I still spent 300 bux (converted) on 2 weeks supply!!! I didn't know until it was time to pay.

I don't feel anything yet either, but I'll let you know!!
blujay

Keep your head up. I have been on Enbrel for about six months now. It started working week 2. I have never been better. I rarely even take tylenol. I dread every Thursday night (time to give myself a shot) but it is totally worth it. I have had the standard side affects but nothing compared to my ulcer from indocin, and being 99% pain free is good.
"All we can do is all that we are willing to do"

I've got the handicap permit-I only use it when I suffer...

My heating pad needs to be held "on" in order to stay on-it's called a Thermophore heating pad-and it's the best. So unless you roll upon the switch to keep it depressed, you can't burn yourself. I've spoken of it in past posts... I don't need it in bed since I have a TempurPedic bed (it's a great bed-the best I've ever had, esp. for the AS, and a heating pad would void the warranty, I think)-I've also discussed this... geez-anybody can find out almost anything about my health on here...!!!

4 shots in Canada costs $1585 CDN... FYI. I have most of this covered through our provincial drug plan, since I do not have any other benefits.

As far as your workouts go, guess you'll have to concentrate on core and upper body til the knees settle down some-but I'm one to talk. I limped into the gym this evening with my cane and did 45 minutes on the Cross Trainer (like an elliptical, but the foot motions are more circular than oval), and hobbled around with the cane for another 45 minutes of strength training. My right SI is so sore, I can barely walk on it-just sucking it up-what else can we do? My left foot is still pretty sore too.

BTW, what's your name? I've figured out you're female, so that makes you tough

BTW, congrats on your first shot... hope you're one of the fast responders...

Thanks Kev-I sure hope it kicks in soon-I'm pretty sore. I'll measure the success of the treatment by it's response on my present flare, which is quite active-the AS is biting my right cheek, among other things.

What changes did you notice that helped you to realize things were improving within 2 weeks?

Your bed sounds heavenly! (You know what I mean)
4 shots here without insurance cost about 600 (US converted) but, that only covers 2 weeks. Is it possible that if I use 50s that it would be the same price per injection? That would seem more economical.

The only thing about upper body, is that I can't lift anything because I have tenosynovitis on one of my palms and the whole hand is swollen. Actually I couldn't lift much to begin with.. I'm familiar with a cross trainer. They don't have any at my gym, but I loved those machines back home. I like to bike, or use the elliptical. In the past, I used light free weights.

I don't know if it's the methotrexate (which I started about 3 weeks ago) or the enbrel, but I actually feel a little better today. I don't yelp in pain when I put on my socks. Stairs seemed much better today, and I don't walk like a toy soldier. I still have swelling everywhere, but my range of motion is a lot better. Could enbrel kick in that quick? Maybe it's the methotrexate?

What is ironic is that I considered myself to be a really strong person. When I first got symptoms and depended on people to help me mentally and physically, it was surreal. Now, I feel like I am getting mentally stronger, but physically, I am dealing with the fact that there are some things I just can't do anymore.
-Blu