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

squeeze your skin together on your leg, insert the needle, and as you are injecting the fluid gently loosen the squeeze on your leg. p.s.s. Tried the "stomach" injection one time---all I can say is "gross", stick with the leg... teresa

Snow,

It took about 2 months for me to see results. I was in a horrible flair when I began Enbrel. I was a little disheartened when I first began. Take a look at some of my posts around July of last year. Soon after, though, I was "walking on water" wrestling with my son, doing home improvements, able to wake without pain. Give Enbrel a little longer.

I, personally, feel that Enbrel's results are directly correllated to the stage of AS that one has. Mine was pretty advanced when I was DXed. The cocktail of drugs that I have been on..Enbrel, Celebrex and Elavil has given me my life back. I hope you find the right combo for you.

Just a note. I started Enbrel in July (summer). I noticed that my ears were itchy. When I was not getting the astonishing 2 week results from Enbrel, I asked my GP if the itchy ears might be a factor. It turned out that I had SWIMMERS EAR. It is an infection, (although not one high on the stay off Enbrel list), and when it was cured (about 2 weeks), I started the Enbrel again and "walked on water". Just be conscious of what is going on with your body. ANY infection affects your body while taking Enbrel because it suppresses your body's ability to fight infection.

As far as your bruises...three things....check the angle of the needle when you inject yourself. It should be at 45 degrees. Also, look for blood vessels at the point that you wish to inject. Avoid shots near vessels...you could puncture small ones that cause bruising. Lastly, never put the alcohol swab over the injection site. Not so much for bruising, but it can cause site irritation.

There is help, also. Local health departments (if you are in the states) will sometimes help you with supervised injections. They will watch you and help you with the injections. Your rheumatologist should be able to arrange another session with a nurse to help you with the injections. I personally do not think that one visit is enough to train someone to inject themselves. Contact a local nursing college. Ask the head of nursing if they have advanced students that could administer the shot under supervision or provide further instruction. Most importantly, the people at Enliven Services are GREAT!! They have a nurse on duty 24/7 to help you. I have called many times and found them to be extremely kind, knowledgeable and helpful.

Keep your chin up, Snow. It will get better!!

Take care,
Holly

Teresa....good to see you again.

I have been on Enbrel for 3 years. It is great stuff!

I noticed results within a few day. However, full results did not occur for about 3 months.



Betty

Hi Snowshoe,

So sorry to hear you're having such a rotten time. I do hope the Enbrel works for you, but I've heard it's not for everyone, sadly.......:(
(I doubt I'll ever get the chance to try it, or any of the other new meds coming out now anyway, so I can't speak from personal experience, I'm afraid.)

I have the greatest sympathy for you - having also had to reduce my mtx recently, (if you remember?), and going into meltdown on just HALF the dose........:(
It took a couple of months to get back to "normal" after increasing the dose again.

I went through a similar experience as you're now doing when my rheumy took me off mtx and put me onto Arava a few years ago. It was AWFUL!! The Arava made me feel dreadful, and did nothing for the AS at all!! I had to come off it after a few weeks and go back onto the mtx again, but it still took several weeks to recover. (I know Arava works brilliantly for some ppl, i.e. Cheryl - who had no joy at all with mtx.......:(

I guess it just goes to show how different we all are, and especially with regard to meds. Would it be possible for you to take mtx as well as Enbrel?

The shots into your paws sound horrible - you poor thing. I've never had them in my feet (just about everywhere else though, and they HURT!!!)

Hope you feel better soon, and can get some answers to your questions.

Hugs,
Sue

Hi Teresa!

So glad you made it. It's great to hear Enbrel is working so well for you, and for Betty.
I still live in hope that, one day, even we B27-'ers in Oz might be lucky enough to give it a try......:)
(Shan't hold my breath though!)

Take care.
Hugs,
Sue

Thanks everyone for your replies and suggestions. I've not been back here because things did get worse. Silly me, thinking a shot in the metatarsal was to decrease inflammation and I'd be waltzing right out of there...did not realize it and my toe would swell up like a bratwurst. This is not a good place to get a shot! I was barely walking and feeling nauseous too because everything else has been hurting as well. I do need paw surgery this fall and was hoping the shot will help me walk for a couple months. You've given me hope that the enbrel might still work and I'm committed to sticking with it for 3 months.

Not sure taking MTX in addition is an option as I've had this love/hate relationship w/MTX all these years. It helps a lot but has caused relentless infections and that's the reason I was approved to try enbrel.

Thanks for the great tips on giving shots--I was giving them cold (straight out of fridge), never noticed how needle tip is cut, and holding alcohol swab over it to stop bleeding. Forgot to ask...how do you uncap the needle without stabbing yourself in the finger??? I feel like a total klutz but it does not come off "gently" and I get stabbed. It's like some self-fulfilling prophecy now .

This was the week of going nowhere fast as I was all packed up and ready to head to the airport for a vacation but hurricane Frances cancelled that. Then I couldn't walk for the rest of the week. Thanks again everyone.


This bunny Kicks AS !

Re: Enbrel needle caps

I generally grab the cap and pull outward, without rotating.

Another thing that I find helps is to take some Tylenol about half an hour beforehand. It seems to really improve my hand dexterity.

-p

nother hint....

the needle that is use to draw up the med can get dull after pushing it throught the rubber fitting in the top of the med bottle. Change out needles before injecting it. It makes it much less painfull and easier to use.

Betty

Hi Betty,

I take it you dont get the kits for injecting? You mentioned changing out the needle before injecting. For me there is no extra needle to do this, but the device used to puncture the vial takes care of this and you do not have to use the needle for this purpose.

Bob



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

HI Bob,

Kits? guess not.

The study gives me 3 months of vials (24), 3 bottles of water, a handful of syringes, and another handfull of needles.

I put one needle on the syringe, than insert that in the bottle of water, draw up 2 CC of water, inject 1 CC of water in one vial and the other 1 CC in another vial.
I than draw up the 1 CC of mixed solution from one vial, insert the needle in the other 1 CC of mixed solution, draw that up.......I now have 2 CC of mixed solution in the syringe. I change needles because by this point the needle is dull. Than I inject the solution into my body.

Betty