Starting Enbrel monday

[easydoesit]

Finally!

Now, of course, I am nervous, lol. Nervous about a systemic medication, and nervous about the idea of sticking a needle in myself. For whatever reason the needle makes it seem that much more real, and serious.

But, I am also feeling so awfully stiff lately that I am eager to give it a try. It's become hard to do the things I want and need to day to day and I've had enough. Hopefully it works for me with no side effects.

*fingers crossed*

[Bob12]

Good Luck taking Enbrel
I will take my 4th shot tomorrow

[NL]

I hope it works for you. You should search the message boards for tips. I know they helped me at first. Icing the area before the shot helps too.

[LoriASoCal]

Good luck with enbrel it worked great for me for a while and remember there is new stuff coming along that will be even better. This is a work in progress. Definitely the stomach is a much easier place than the thigh, it just seems like it would be worse but trust me on this.

[ouchyk]

* fingers crossed * for you.

There are thousands of folks on enbrel for inflammatory arthritis as well as psoriasis and it works wonders for them!

Karen

[alison149]

hi i am about to start embrel also. Are there any of you in australia that do your own shots as for some reason my pharmacy thinks the doctor is supposed to do it. when i asked for a sharps container they thought i was stupid. i am sure my rheumy said to do them myself once i learn how to by the nurse.i cant contact my rheumy as she is on three months leave having a baby.

[easydoesit]

hi i am about to start embrel also. Are there any of you in australia that do your own shots as for some reason my pharmacy thinks the doctor is supposed to do it. when i asked for a sharps container they thought i was stupid. i am sure my rheumy said to do them myself once i learn how to by the nurse.i cant contact my rheumy as she is on three months leave having a baby.

Not sure about Australia but I will be doing my own in the US. I had to go to the rheumatologist to have a "lesson" for the first one today, but from now on I'll be poking myself :)

So far so good after my first injection today. I used the Sureclick and it wasn't anywhere near as painful as I was expecting after reading some posts here about it. Some sting, but it wasn't too bad and it was over quickly. It actually seems to be working on my joints already as well, which is a nice surprise.

[theskinyouarein]

Finally!

Now, of course, I am nervous, lol. Nervous about a systemic medication, and nervous about the idea of sticking a needle in myself. For whatever reason the needle makes it seem that much more real, and serious.

But, I am also feeling so awfully stiff lately that I am eager to give it a try. It's become hard to do the things I want and need to day to day and I've had enough. Hopefully it works for me with no side effects.

*fingers crossed*

First, good luck! The bark is much worst than the bite so to speak. We were very nervous about giving our son the injection and it has gone very smoothly. We did, as others have suggested to you, searched the posts and got some great advice, not to mention lots of support.

I was touched by your comment about the needle making it much more real & serious...it took us nearly a year to make the decision to use enbrel. We, too, got to a point where the P & PA was getting in the way of daily life and we didn't have another reasonable choice. So, here we are 2.5 months later and happy for it. No more joint pain and significantly less P.

We'll look for word on your progress!

[alison149]

hi easydoesit, i didnt mean to change your thread. but it is such a scary thing having to give ourselves needles. i had psyched myself up to do them myself only to be told i might have to have it done at the doctors each week. when you get to the stage that doing just the basic everyday things is difficult, anything is worth the try.I hope all goes well for you. Ally

[kestrel2008]

alison... I have to say I got the same reaction from the pharamacy about a sharps container here in the states. Just contact Enliven, they will give you one. Luckily, they last forever basically, (if you are just disposing of the needle) because I never did figure out what to do with it when it is full. It does sound like your phamacy needs a little bit of an education... you might have to remind them it is more like insulin. Hope you can work it out and trust that it is much easier than it sounds sometimes.

[AnnieB]

Abbott Labs just started a program where they send you a SHARPS container with a box to return it to them when it is full (pre-paid). That's just for Humira, though. Before that, I had to do a web search on SHARPS disposal for my state. There was a list of places you could bring your container--mostly hospitals and senior centers. I found one a few blocks from my home (Brooklyn) and took it there. Try googling the name of your state and "sharps disposal" if you don't know what to do with it. Or your doctor's office may be able to help if you do not want to throw it in the trash (legal in some state, some not.)

[LoriASoCal]

It used to be that if you wrote to enbrel that would send you all of that stuff free. Is it not that way now? I was always getting free sharps containers shipped to me as other goodies like insulated travel bags. Perhaps you could call them?

[ouchyk]

So far so good after my first injection today. I used the Sureclick and it wasn't anywhere near as painful as I was expecting after reading some posts here about it. Some sting, but it wasn't too bad and it was over quickly. It actually seems to be working on my joints already as well, which is a nice surprise.

Good luck with it. When I was on Enbrel, we had mix it yourself, no sting at all...never did the sureclick or any other form, it's been a while.

humira on the other hand...ohh owie..sting-a-ling lol but it is over with quickly

and

a lil sting

is better

than having

possible joint damage.

Wishing you wellness!!

Karen :)

[easydoesit]

I was touched by your comment about the needle making it much more real & serious...it took us nearly a year to make the decision to use enbrel. We, too, got to a point where the P & PA was getting in the way of daily life and we didn't have another reasonable choice. So, here we are 2.5 months later and happy for it. No more joint pain and significantly less P.


Yes it's a big decision and I've been on the fence for quite a while about doing any treatment for my PA because medication scares me, but I feel like I've exhausted every "natural" alternative out there and it's only gotten worse. I can only imagine how difficult it would be deciding for your son, it was hard enough for me to decide for myself. I'm glad to hear it seems to working well for him.

[easydoesit]

It used to be that if you wrote to enbrel that would send you all of that stuff free. Is it not that way now? I was always getting free sharps containers shipped to me as other goodies like insulated travel bags. Perhaps you could call them?

My doctor gave me a "kit" which included the travel kit, a sharps container, alcohol pad/swabs, and a lot of various booklets about the medication and how to inject. Enliven services also mailed me a free sharps container when I signed up with them ... it says on their site that you get a free one when you sign up.

[easydoesit]

hi easydoesit, i didnt mean to change your thread. but it is such a scary thing having to give ourselves needles. i had psyched myself up to do them myself only to be told i might have to have it done at the doctors each week. when you get to the stage that doing just the basic everyday things is difficult, anything is worth the try.I hope all goes well for you. Ally

Hi Ally.

Even if you have to have it done at your doctors it would probably be worth a try. After only one day I already feel significantly better, I'm shocked. For the first time in over a year I did not feel like an 85 year old man after getting out of bed this morning. In fact, I probably could have gone for jog, which is quite frankly ridiculous considering how I was just two days ago, but that's how it is.

In addition to that I feel like I have tons of energy, whereas I'm normally exhausted all day. I would almost say I feel like I have too much energy now. It's quite a change. Hopefully this continues to work for me without problems.

[cat79]

Better late than never! Duno if this is even still relevant. I found with the 50mg syringe injecting it slowly in the abdomen didn't sting/burn at all. But when I say slow I mean slooowww. Using the pre-filled syringe in the thigh seemed to be uncomfortable to me regardless of any other factors. I got to try the auto newer auto injector a few months ago and wow while it stings its over so quick its quiet nice and well worth it lol.


alison149. I know how you feel. Honestly I wish I could pop into the doctors office and have them do it for me. Even with the newer auto injector I still find that before I do the injection I go through several minutes of anxiety before I can do it. Very annoying to me.

I still remember when my Derm prescribed it. Gave me my little travel kit and sent me off to do my first injection with a nurse teaching me. I was so nervous I actually cried. Embarrassing to say the least. The lady who was walking me through it got more than she asked for lol. When I finally stuck the needle in I couldn't bring myself to push in the plunger. It seemed like I needed the force of the world to move it. Man I hated those syringes.

[alison149]

i tried to sign up for the enliven site. but i live in australia and its only for the US. I found out today that I could get a sharps container from the next biggest town near me. about 30kms away and they also have a sharps bin at the hospital there. the chemist is also trying to get hold of an embrel cold pack as i will be travelling overseas sometime soon.

[dlfd911]

I just ordered a sharps container from the Enliven site. Thanks for the suggestion. I have been recapping (I know, not supposed to) and putting them in a plastic bag, taking them with me to my doctor appointments and putting them in their sharps container.

I found that if I warm the syringe in my hand first and inject slowly it is less painful. The pharmacy gave me the autoinjectors by mistake once, and I used them, but I hated them. Always painful.

My dermatologist just upped my dose to 50 mg twice a week. She said she has had good results at this dose for people that don't respond to the once a week. Especially larger patients (I'm a little over 200 lbs). My rheumatologist says it's keeping the inflammation down somewhat (I still have swollen joints in my hands), but doing nothing for the P. Let's see if the higher dose helps.
Dave

[pgerpup]

Hi Dave!

I take one shot of Enbrel (50 ml) a week. I still have swollen joints, but I had to take a little time off during an abscessed tooth during the summer. Before I took the break I could have and did swear the Enbrel wasn't helping. During the break I realized how much it was helping. Don't give up hope. I'm beginning to believe the swelling will always be in my hands and my hips will always hurt, but thanks to Enbrel not as much as they would without it.

Hang in there!

Fay

[dlfd911]

Does anyone have side effects after the Enbrel injections? Aside from the injection site ones, that is. I find that I end up with a sore throat the day after my injection. it goes away by the second day, but I wonder if this is something I should be concerned about. I presume it has to do with the Enbrel working on my immune system, perhaps causing swollen glands in my neck. Now that I'm taking it twice a week, I'll be enduring this discomfort more often. But still, if it ends up working, I'll be willing to tolerate it.

[PsoriasisGirl]

Check with your doctor to see if the side effects is something you should be worried about...might be a sign of strep?

Glad Enbrel is working for so many people! You can check out my blog to see how I've progressed since I started Enbrel in July (second time on Enbrel). Am also in UVB treatments every other day.

GOod luck, keep us posted and let me know if you have any questions.

(formerly srpoteat)

[ouchyk]

Psoriasisgirl...I just looked at your pictures, looking GOOD! :D Pretty soon you can change your name to ex-psoriasisgirl!

Dave, my motto is " when in doubt check it out "...might be a good question to ask the doc or his/her nurse. ...

Karen

[pgerpup]

I agree with Karen Dave! I called my derm's office if I hiccuped the first couple of weeks! :D


Fay

[PsoriasisGirl]

Psoriasisgirl...I just looked at your pictures, looking GOOD! :D Pretty soon you can change your name to ex-psoriasisgirl!

Dave, my motto is " when in doubt check it out "...might be a good question to ask the doc or his/her nurse. ...

Karen

Thanks Karen,

You can now play connect the dots with my hyper pigmentation :)

[easydoesit]

Does anyone have side effects after the Enbrel injections? Aside from the injection site ones, that is. I find that I end up with a sore throat the day after my injection. it goes away by the second day, but I wonder if this is something I should be concerned about. I presume it has to do with the Enbrel working on my immune system, perhaps causing swollen glands in my neck. Now that I'm taking it twice a week, I'll be enduring this discomfort more often. But still, if it ends up working, I'll be willing to tolerate it.

I had a slight sensation of heartburn the second night after my first injection, but not what I would call a sore throat per se. I don't know if it was related to the Enbrel though. I am also currently using some prescription mouth rinse from my dentist (for gingivitis) and I know I swallowed some by mistake that night, so that may have been the cause.

I did mention it to the nurse at Enliven when I called for info on travelling with Enbrel and she said there have been reports of dyspepsia which can include heartburn, but it's not common. She asked if she could file a report as part of their reporting policy with the FDA which I thought was interestingly proactive considering it was so minor and I really didn't have a strong feeling if it was the Enbrel or causing it or not.

Anyway I'll let you (and my doctor) know if it happens after the next one.

[easydoesit]

As a follow up to the question about a sore throat after an injection I did my second injection thursday night, and last night (friday) I started to feel a slight sore throat. Today when I woke up I definitely had a mild sore throat, and my nose was a bit runny.

I called the on-call rheum and he said it was ok as long as I didn't have a fever, which I didn't. He said if I do get a fever I need to get to an ER so they can assess the situation to determine if I have strep or something like that that requires antibiotics.

I ended up going back to sleep and after a long nap I now don't feel as though I have the sore throat anymore, so that's a relief. It's a little disconcerting to have this happen though. I'm going to be calling my doctor on monday and discussing whether or not the 50mg twice a week is perhaps too much for my system.

[dlfd911]

Well, I called my dermatologist and left a message first thing in the morning on Friday (she has office hours on Wed, Thurs and Fri), and waited all day, but no return call. So, I skipped my shot on Friday, and will have to wait and see if she calls this week. I still have a sore throat, so I'm thinking that the shot last Monday lowered my immune system enough so something took hold. No fever, but I do feel lousy. I'm hoping it's not directly related to the Enbrel, as I don't want to give up on it.

[easydoesit]

Well, I called my dermatologist and left a message first thing in the morning on Friday (she has office hours on Wed, Thurs and Fri), and waited all day, but no return call. So, I skipped my shot on Friday, and will have to wait and see if she calls this week. I still have a sore throat, so I'm thinking that the shot last Monday lowered my immune system enough so something took hold. No fever, but I do feel lousy. I'm hoping it's not directly related to the Enbrel, as I don't want to give up on it.

I would have made the same decision. You mentioned switching to twice weekly injections ... had you already started doing twice weekly when these sore throats started happening, or was this to be your first week with two injections?

[dlfd911]

Well, my dermatologist called me back. I'm to go off the Enbrel until I'm over this cold or whatever. She said I probably had it for a while, and when I took the shots it allowed the cold to get a foothold. I feel better today, and I usually do the shots on Friday morning and Monday night, so I'll wait until Monday to start up again if I still feel ok.

[dlfd911]

had you already started doing twice weekly when these sore throats started happening, or was this to be your first week with two injections?

When I was still on once weekly injections I was waking up with the sore throat on Saturday mornings (24 hours after the shot), probably 3 times before I went to twice a week. I took one injection last Monday night, and by Tuesday night I felt achy like I was coming down with something, in addition to the sore throat. Yesterday I felt like it was in my head, like a sinus thing.

[alison149]

Hi everybody, I contacted the wyeth site ( makers of enbrel) and they sent me a big travel/cooler bag with all the goodies inside. I had my first shot friday and the nurse at my local hospital was with me incase I had problems. All went well it was painless in the stomach and now I dont know why I was worrying so much. I too had a sore throat last night but thats gone now. Today I have heaps more energy.not sure if its my imagination but even the pain level is down today.

[caleb]

Is it something that you take only periodically, or is it something you are on for the rest of your life?

[RichJ]

Is it something that you take only periodically, or is it something you are on for the rest of your life?
hi caleb,
sorry but i can't help much but i can bump you to the top. maybe some will come through and help with your ?

have a good day all

richard

[alison149]

Hi caleb, i was told to keep taking the enbrel for as long as it works. most people have it work for about 2 years but i have heard others are up to their 5th year.

[alison149]

Hi caleb, i was told to keep taking enbrel for as long as it works. two years is the usual but i have heard of others reaching 5 years

[alison149]

sorry dont know why but it didnt post first message so i did it again. and them it put up both!!!

[easydoesit]

Alison I'm glad it went well for you, I'm not sure how I missed your posts in this thread.

Tonight I decided to try injecting in my abdomen instead of my thighs where I had been doing it and it was SO MUCH better. The thighs were not terrible but they did hurt a lot. I will definitely be sticking with the abdomen from now on, wow what a difference and a relief! It was getting to the point where I was sitting there with it over my thigh for a good five minutes before I could press the button because I knew what I was about to inflict on myself.

I'm also happy to report that I have not had a recurrance of the sore throat/cold issue, so I'm hoping that it was just something that was lingering that the Enbrel brought out and that I am now over it.

[easydoesit]

Well, my dermatologist called me back. I'm to go off the Enbrel until I'm over this cold or whatever. She said I probably had it for a while, and when I took the shots it allowed the cold to get a foothold. I feel better today, and I usually do the shots on Friday morning and Monday night, so I'll wait until Monday to start up again if I still feel ok.

That's what I did, I just skipped the dose and did the next one on my usual day (so 7 days later instead of the usual 3/4).

[alison149]

I have been getting a sore throat the next day after the enbrel but then the next day after that its gone. Another thing I have noticed is the balls of my feet are burning. I am not sure if its a side effect or its because I have had so much energy and no fatigue that I have been on my feet too much. I have so much to catch up on since everything but the basics hasnt been done in nearly 5 years. I know I should take it easy but I am so enjoying house work. yeah crazy arent I. I just dont know how long the enbrel will work so I am making the most of it.

[easydoesit]

Is it the skin on the balls of your feet or the joints?

The skin on my feet had become somewhat thick from psoriasis but it seems that the enbrel is starting to work on clearing them and currently the skin is getting softer and feels more sensitive than I am used to, so I get a sort of strange feeling when I'm walking and not wearing shoes.

[alison149]

Its the skin, but its not psoriasis its just the skin itself burning . I do have the PA with sacroiliitis like the fusing you get with AS. Burning feet is one of the symptoms of AS so it could be that. I will speek to my rheumy about it at my next visit.

[easydoesit]

That's interesting I had never heard of that symptom for AS before.

One thing that I have been noticing is that the leg where I did my first injection hurts off and on in the area of the injection still. Like just a vague soreness in the muscle. I wonder if my first injection hit a nerve or something in that area. I haven't had any soreness associated with any of the other areas that I've injected (including a few inches higher up on the same leg).

[alison149]

It sounds like you might have gone into the muscle or a nerve. I havent been game enough to inject in the leg as I have vivid memories of the antiblood clotting injections given daily in the hospital for 3 months. they were really painful. So I think I will stick with the stomach , it doesnt hurt at all there.