Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Enbrel, still waiting to walk on water

Well I'm on the 4th week of enbrel and based on others' success stories here I was fully confident and expecting to rise up and walk on water the 2nd day. Instead, I'm experiencing a major flare and although I dread to even mention it, the MTX I've been taking for 11 years was a party compared to what I'm dealing with now. Granted, I was off MTX for 3 weeks prior to starting enbrel so already on a downslide. Anyways, as I've mentioned have had terrible paw problems for over 20 years now. Well this week I've been limping so bad, I finally broke down and went in today and had a cortisone shot in the ball of paw--ouch . I've never gotten to the point of getting a shot in the foot because both feet hurt everywhere. Now I can barely walk because that foot/toe is really swollen now & locked up.

The limping has put alot of stress on other tendons/legs/SI/back such that basically...I'm a wreck . I'm going nowhere fast. I'm grateful to have the opportunity to try enbrel and still trying to be optimistic that I'll be bounding out of bed tomorrow and dancing till dawn.

So...while I wait...a couple questions. How long has it taken some of you to notice ANY results? Also, how do I give myself a shot without getting a big bruise? I'm at 100% on the bruise thing even though trying to be careful (have only done them in legs)? HELP!?


This bunny Kicks AS !

For me Enbrel started taking a good effect after the very first shot. I am at the point now where I only take one shot a week as this seems to control the AS as well as twice a week.

I cant help you with the bruising. I dont experience any bruising or injection site problems.

Sorry to hear you havent had any beneficial results yet.

Bob



Got an itch? Scratch it!! Scratchboard Art by R. Berendt

Hi Bob,

It's good to see you again & hope that your kidneys aren't causing too many problems. Has been awhile so I figure you've been busy with your artwork.

Miss those chats - I've more good neighbour stories ...
Cat

Sorry to hear no help yet hang in it will come. I noticed after my second shot, getting out of bed was easier. On the bruiseing I also get them in the legs since that is the only place I give myself shots. I put vaseline on my leg and it seems to bruise less. Good luck hope you get relieve soon. Mike....

Hi Cat!! Good to see you too!!

Yeah been busy with the artwork....gallery up north has sold 7 originals in the past 4 weeks which is phenominal. Will be hard to get 7 good sized originals finished by show season next spring but will scratch my butt off trying to get enough done!! hahahaha

Cant wait to hear the lates neighbor story!!! ahahahahaha will catch up with you soon....kidney been about the same....still working. :)

Bob



Got an itch? Scratch it!! Scratchboard Art by R. Berendt

Hey Bob

7 originals in 4 weeks?!?! That is amazing! Good for you.


Keep scratching.....

Hugs
Lori

It took me about a month to start to really feel better. Two months and I didn't feel the As anymore. The doctor told me to give it three months before I gave up on it.

Steve Orchard
Running from Arthritis

Sorry to hear you're feeling so lousy. OUCH! That shot in the foot didn't sound like fun. The things we go through!
When I started my enbrel my doc told me it could be 8-12 weeks before I got the full effects of the drug.
I was like you..waiting and waiting for something to happen, but nothing ever did. I didn't go into a flare like you, but each day I felt like I was getting more and more tired. The only way I could explain it was like I woke up feeling like I weighed 500 pounds and by the end of the day that weight doubled. No walking on water for me or I would have sank.
I took it for over 3 months when the doc finally decided to take me off from it and I still have like $1,600 worth of it in my fridge. I have to throw it away, but having a hard time doing it...it's like throwing money down the toilet.
I was bummed, because I had my hopes up after hearing how well it worked for everyone else.
Remember though that everyone is different andit still could work for you. Just may take you a little longer.
I hope you wake up some morning ready to dance and have all the positive benefits from it that so many others have had.
As far as the bruising...all I can suggest it that you make sure you are using the side of the needle that is angled and pointed. It goes in alot easier. Alot of people have never looked close enough at the needle and don't know this exist. Also, don't go too slow. Don't jam either, but try not to hesitate too much when inserting it. This can aggravate the area for some people.
Just some suggestions for ya...all I can think of right now.

Hugs,
Lisa

Snowshoe,

So sorry to hear you're still doing poorly.

I felt better less than 12 hours after my first shot. I had 95% remission within 24 hours and within one month I was in full remission and there I've stayed. I have the occasional bit of musculoskeletal back pain due to calcified ligaments combined with my rather active lifestyle (competitive swimming, street performing, 4th year medical student, etc.), but that is generally controlled with the occasional Tylenol...and failing that, 440mg of naproxen (NAPROSYN/ALEVE).

To minimize bruising, make sure that all the components of your injection are WARM. After you attach the needle to the syringe and before you uncap it, hold the syringe in your hand and make sure that it feels warm to the touch.

If you are on prednisone, you may bruise regardless of what you do.

You may also be in the unfortunate portion of patients who don't respond to ENBREL. You may want to talk to your rheumatologist about a combination of ENBREL and MTX. Or it may just be that ENBREL isn't going to work for you. But you do have to give it the full two months.

Best of luck!

___________________________________________
-Mike
Certified Mad Doctor (in training)

snowshoe, I don't want to get your hopes up, but it took over 4 months for the enbrel to "kick-In" for me I was desperate in 1999 and paid out of pocket until the funds ran out (about 3 months worth). After petitioning to my HMO to pay for it (5 months later after being off of it) I tried it again. I now call it the miracle drug--even bought stock back in late 2000 hee hee. Soooooo, I've been injecting for close to 4 years with no apparent side effects---except now I can play volleyball :) I say...hang in there. hugs Teresa bka ZZYZX