I have been in the midst of a horrible flare this past month. My whole face appears to be sunburned (I even had a woman stop me in the grocery store to ask me if I was just on a vacation) how humiliating. I have also developed a huge bump on the side of my foot by my pinky toe making it impossible to put on shoes. So here I am walking around in freezing cold NY weather in flip flops. Can we say crazy lady syndrome ?!
So I gave in to my Rheumatologists requests, and agreed to start Enbrel. I go tomorrow for my "training" and first dose. I AM SO NERVOUS !!!!!!!!! So many mixed opinions on the drug…. I am really just hoping for the best.
Although I am not having as much luck with it this run around, the first time I was on Enbrel, my psoriasis cleared up by about 50% and the inflammation by about 40%. Never went into complete remission, but after years of misery, 50% and 40% was looking pretty good! Eventually, though, the Enbrel stopped being effective for me, so I switched to something else. Now I'm on it again, but getting ready to switch again.
Many people are freaked out by the idea of giving themselves a shot. It isn't that bad. Eventually you will find places to inject that are less sensitive than others, and it is all good. My advice, though, is to take a deep breath before starting to actually get the meds in because they burn a bit. Breath out (forcefully if necessary) and it will help.
Thanks for your reply :) What other medication do you think you are going to try after the Enbrel ? I spoke with a woman that told me Enbrel actually seemed to make her psoriasis worse, so she tried Humira and really likes the results.
tmbrwolf329 said:
Although I am not having as much luck with it this run around, the first time I was on Enbrel, my psoriasis cleared up by about 50% and the inflammation by about 40%. Never went into complete remission, but after years of misery, 50% and 40% was looking pretty good! Eventually, though, the Enbrel stopped being effective for me, so I switched to something else. Now I'm on it again, but getting ready to switch again.
Many people are freaked out by the idea of giving themselves a shot. It isn't that bad. Eventually you will find places to inject that are less sensitive than others, and it is all good. My advice, though, is to take a deep breath before starting to actually get the meds in because they burn a bit. Breath out (forcefully if necessary) and it will help.
I found Enbrel to be immediately helpful. You’ll do just fine with the training–it is easy as heck to use the auto injector. I hope you respond well to the medication. I did for the first several months. It was life changing. Good luck–and keep us updated!
I'm on my second time with Enbrel with a co-dose of another medication. This dual approach has been working well for me for 12 months. Make sure you let the Enbrel come to body temp before injecting.
I did not like using the autoinjector, so I switched to the prefilled syringes. I'm a control freak, what can I say. I like to be able to control the speed of the injection :)
I have been on Humira, but it never worked for me which is when I switched to Enbrel (both with MTX ). After the Enbrel stopped working I switched for several months to Remicaide which worked much better for me, but has to be infused by a doctor and I couldn't afford the infusion anymore so I switched back to Enbrel. Now I've found a place that I can afford the infusion, so I'm switching back. Getting dizzy yet? lol Bottom line is, it takes time to know whether or not a medicine regime is going to be successful. Hang in and follow the doctor's instructions.
Allan: wait.....body temp? My doc never told me to let it come to body temp before injection. Even during my "training" they took it immediately from the fridge and told me to inject. Does that affect the medication's efficacy? If so, that would explain a LOT! :)
Also...the med instructions say that you can inject in the stomach, front of the thighs, or arms. I only inject in my thighs because they are less sensitive than the other approved injection sites (probably because I have some neuropathy). Its all a matter of trying it out and seeing what works best for you. Once you've started, talk to your doctor and ask any questions you might have. My doctor said only injecting in my thighs was fine, but your doctor may have a different opinion.
I was told to hold against my skin until I couldn't feel a temp difference. No burning! Doesn't change its efficacy as its going to be body temp once injected!
I also use pre-filled syringes as the auto's often did not work for me.
tmbrwolf329 said:
I did not like using the autoinjector, so I switched to the prefilled syringes. I'm a control freak, what can I say. I like to be able to control the speed of the injection :)
I have been on Humira, but it never worked for me which is when I switched to Enbrel (both with MTX ). After the Enbrel stopped working I switched for several months to Remicaide which worked much better for me, but has to be infused by a doctor and I couldn't afford the infusion anymore so I switched back to Enbrel. Now I've found a place that I can afford the infusion, so I'm switching back. Getting dizzy yet? lol Bottom line is, it takes time to know whether or not a medicine regime is going to be successful. Hang in and follow the doctor's instructions.
Allan: wait.....body temp? My doc never told me to let it come to body temp before injection. Even during my "training" they took it immediately from the fridge and told me to inject. Does that affect the medication's efficacy? If so, that would explain a LOT! :)
I didn't like the autoinjector because they have that built-in safety feature where you have to press it really tightly against the skin in order to get the thing to inject. Often ended up with nasty bruises (I bruise easily anyway - its the Irish in me!). Anyway, I just read an article where you can actually STORE Enbrel at room temp for up to 14 days before use, but that you cannot re-refrigerate after it has gotten to room temp. That would have been really handy to know back when I traveled a lot for work!
Allan said:
I was told to hold against my skin until I couldn't feel a temp difference. No burning! Doesn't change its efficacy as its going to be body temp once injected!
I also use pre-filled syringes as the auto's often did not work for me.
tmbrwolf329 said:
I did not like using the autoinjector, so I switched to the prefilled syringes. I'm a control freak, what can I say. I like to be able to control the speed of the injection :)
I have been on Humira, but it never worked for me which is when I switched to Enbrel (both with MTX ). After the Enbrel stopped working I switched for several months to Remicaide which worked much better for me, but has to be infused by a doctor and I couldn't afford the infusion anymore so I switched back to Enbrel. Now I've found a place that I can afford the infusion, so I'm switching back. Getting dizzy yet? lol Bottom line is, it takes time to know whether or not a medicine regime is going to be successful. Hang in and follow the doctor's instructions.
Allan: wait.....body temp? My doc never told me to let it come to body temp before injection. Even during my "training" they took it immediately from the fridge and told me to inject. Does that affect the medication's efficacy? If so, that would explain a LOT! :)
The first time I was on Enbrel, when it first came out over a decade ago, I went into complete remission for 2.5 years (skin and joints). As long as I stayed on it, it was like I didn't have PsA at all. This on the heels of a post-partum flare where I couldn't get out of bed or hold my new baby. No side effects either.
Enbrel has been amazing for me. It doesn’t work fast, so don’t expect a quick fix. It took months to get full effect, but I did feel changes that made me very optimistic within the first week. I’m one of the lucky ones. Now six months in (but with a couple of pauses for a recurring infection) I’m feeling better than I have in at least ten years. I keep thinking the improvements have peaked, but then I notice another improvement. People are commenting on how well I look and seem.
All of that said, I was frightened to start, and I still have my fears about long term effects. But I want and need quality of life, and, for now, anyway, Enbrel is doing that for me.
But one step at a time. Tomorrow, the only effect you’re likely to get is a site reaction. In my case, it was a big hot itchy red spot. That diminished with each injection, and now it’s like a large bug bite and lasts only a day.
If you’ve read the Gladman book (in the Book Reviews section) you’ll know that they are emphatic that early and aggressive treatment gives patients the best chance at a good outcome. And they are very positive about the role of biologic agents in PsA treatment.
You’re giving yourself the best chance at taming this monster. Good luck tomorrow!
Yay! I get that this was a decision that you struggled with, but I'm glad you are finally there. You will be great, I'm sure.
I have taken Humira and now Remicade, but I have heard so many good things about Enbrel too. Everyone responds a little differently and what works for one, might not work for another. There is definitely some trial and error in figuring out just the right med. Remember to give it time to work.
There are some EXCELLENT threads on self-injecting. Do some searching. There are all sorts of pro-tips that make it easier. And once you start feeling results, you will find yourself looking forward to your injections.
Hi Jen. I was diagnosed about 7 months ago. Started out on methotrexate with horrible side effects. Was having HORRIBLE foot pain and felt like I was walking on a rock. Was started on Enbrel about six months ago and after two shots was able to take my dog for a three mile walk every day. I LOVE Enbrel. It has been a real game changer for me. I also take an anti-inflammatory (Relafen) as needed which helps with any little aches. I hope you do as well. I feel so lucky to have access to the biologic drugs for a small copay. Good luck. Let us know how you do. Message me for any questions you might have.