Hi all...this site has really changed! I recently switched from Remicade to Enbrel. After 3 yrs, the Remicade just wasn't getting the job done. I've taken 3 Enbrel shots, I am on the pre-filled 50mg. dose. Is anyone else new to Enbrel? I am pretty sure it is helping my fatigue even tho the nurse told me I couldn't be feeling it yet! I would love to compare notes with someone...hope you are all having a good day!
I hope this is the drug that helps.They all seem to help some but I just get so tired of pain and fatuge.I feel guilty for not working when I see my wife go to work every day.We have both worked for ever and dont mind having to do that but just up and stoping after 30 years of working is like runing into a brick wall.I thank God I have my art work to keep myself busy,but that only works for so long and also gets old after awhile.well enough boo hooing.
You all have a good day.
look foward to talking with you all now and then it helps to know there are people out there that can relate to our illness.
How does the wet weather mess with you guys.As for me,liveing in AZ
its not when wet weather IS here but 2-3 days before.pretty reliable to.When the dampness shows up I actuely feel pretty good! I dont think I have ran in ???? years.I use to be very active in my younger years with sports, camping and just being outdoors and in the past few years I found rockhounding to be way cool! I just cant go climimg around like I use to But still find lots of cool stuff.
Well on to other mail. C U next time
Catmom
Today was my first injection. The 50mg strength was horrible...it was VERY painful. Has anyone taken both the 50mg and the 25mg injections? Does the 25mg dosage hurt less than the 50mg dosage? Think that I'd rather have two injections/week than one mega dosage weekly that hurts so badly. (Injection site: outer quadrant, right thigh).
MIKE
Hi Cheryl....yes the 50 mg. does sting going in! My RD warned me that it would and told me to ice the injection site first. I've never taken the 25 mg. but everyone says it doesn't sting at all. I am guessing that the premixed 50 mg. has preservative in it and that causes the sting. I would rather "suffer" through the sting and just have one shot a week, but that is a purely personal decision. Good luck to you whatever you decide!Thanks so much for your support. Thought about the preservative before deciding on the 50mg dosage, but had not dreamed it would hurt so bad. Next time, I'll grab somebody at work to give me the injection (and make sure it's been out of the frig for 30 minutes). I have 3 more injections in the 50mg. pack. Makes since that the 25mg dosage would also be fresher and absent of any preservative (just checked to read the insert about preservatives, and my dear husband left the enbrel on the kitchen table...I thought he knew to put it in the frig. This is such a life changing event for us). Next month, I'll try the 25mg dosage. Suppose I'm just a big babylynndee
The nurse who taught me how to "shoot up" Enbrel said it's the Ph factor of the preservative that causes the sting. I never had the 25 mg, so I have no point of comparison, but the 50 mg definitely has a bite. My flesh sort of bubbles up around the needle as I'm injecting, but the nurse said that's normal too. What does a real injection site reaction look like?
HI ALL...
WELL, JUST LEARNED A FEW THINGS!I started Enbrel in Sept., and I really thought I could tell some improvement right away. I use the 25 mg, 2 shots a week because insurance won't allow the other, but they don't sting or hurt. Compared to last year at this time, I am worlds better!Just did my first shot at the 50mg today. I was a little worried after I had read about everyone's problems with it. It did sting but not that bad. I kept it out of the refrigerator for 20 minutes first. Also looked at the needle to make sure the point was down (it's kind of spoon shaped). I have previously used the 25 mg twice a week and no those did not sting at all. I think the 50 are worth the bit of sting though as it is so much easier.Yes, the 50 MG definitely hurts more than the 25. I'm sure it is the preservatives, because it was the same with MTX. It stings quite a bit, doesn't it. I don't look forward to that 5 minutes each week, but if it works... I have been injecting 25 mg 2xweek since June and sometimes have a lump at the injection site. I found that if I inject in my abdomen I am less likely to bruise and it seems to go in easier. I haven't had experience with the larger dose yet.Hi all, I saw my RD monday for the first time since starting the Enbrel. She was very impressed with my improvement after just 5 shots. I guess I was a bit excited because she asked me if I wanted to make an Enbrel commercial!
Hopefully, I will get up the nerve to inject myself, but I can't see that happening real soon.
Thanks so much for your support on this matter. It really means so much.
I warm the syringe by resting it on top of a mug of coffee. I thoroughly ice my tummy, and just slip the needle in. I don't even feel it. I use the tummy because the skin is much looser there. I HATE needles and this whole thing is just nothing for me, now that I figured out how to eliminate the sting.
I've been on Enbrel for over two years. Monday will be my first time to inject with 50mg. Reading about the experiences with 50mg, I think its similar to using Humira, which is twice a month. People complained of the stinging when it first hit the market.
I hate injecting/the welts and brusing. Onece aweek/ even twice amonth sounds good to me.
Kieye
Kathy, that makes sense! You are talking about the 50 mg., right? I think I will try it with my next dose. I am injecting in my thighs because I just cannot bear the thought of something stinging that bad in my tummy. If warming it to body temp eliminates the sting, that sure does give more injection site options! Thanks for the tip!I have night sweats (started about two nights ago), can't sleep, and had cold sweats at work for the last two days (prior to last injection) and feeling tired (knees and ankles swollen with swelling subsiding after bedrest). Had the lab do some work today (three weeks since last labs and first labs since starting Enbrel). Neutrophils % is low but Neutrophil # is high, with elevated lymphocytes, monocytes and eosinophils #'s. Faxed results to Rheumy this evening.
I feel really dumb. Has anyone had their labs go weird after starting Enbrel? It could be just another cycle of the disease with me feeling worse...just not sure. I'm so MAD at having RA...I could scream
Thanks-
cheryl
Hi - i have been on the arthritis foundation site. MANY MANY of us have experienced the pain and great disappointment of the weekly dose of Enbrel. the needles are DULL!!! Most of us on the other site have gone back to the twice weekly rather than experience the pain. (It's NOT the temperature thing - it's the needles!).
I write to encourage anyone who has experienced this to report it to Enbrel.
1-888-4ENBREL
(1-888-436-2735)
Monday through Friday,
8 a.m. to 8 p.m., eastern time
Unless enough of us let them know - they won't know to improve and there is NO REASON why this problem cannot be solved - in fact i feel strongly that it was put on the markeket prematurely without enough testing on humans. i have also reported the matter to the FDA.
the new doseages are pre-filled with non-removeable needles - so buying another neddles is not an option.
even if your insurance is paying, AMGEN is getting 0 a POP for this med! they have a responsibility to their clients - US - to make it better, but they won't unless they get LOTS and LOTS of complaints!
and even though i know of others who have complained when you call their nurses will act like you are the first - they will tell you they cannot reveal any information about other complaints - and they will act like you are just dumb and don't know how to give yourself an injection. they'll tell you to ICE! that is NOT the issue! it is Not our fault - the needles are D-U-L-L!!!! how cheap can they be at 0 a dose!
It's such an easy thing for them to fix...
Hi,
I did my first shot of 50mg, was on Kinerit but wasn't doing the job anymore... i have had a headache eversince Tuesday when i did the shot is this related? also have been getting night sweats? is this related has anyone else have this problem or is it the dreaded M word i'm 41!. i do get migraines but this is different not so bad just enough to annoy me.
thanks for listening.
Skyla
Yes, I had the night sweats with 50mg Enbrel. My body became drenched in sweat..not like the old hot flashes that had disappeared some time ago. I had a few day sweats of feeling cold and clammy and a blinding headache (no migrane, but just a sick headache). (This was with three weeks of 50mg injections). I finally broke down and called the company 'hot-line' in tears. They lady was sweet and listened, but of course couldn't give me any advice. But reading between the lines, she was hinting at trying the 25 mg dose.
I changed to the 25mg Enbrel.....hallelujah! Absolutely NO stinging. Gave my own first shot. Had another RN give the 2nd weekly shot, and the site turned blue, but still....it did not hurt. Think that I will give all my injections myself from now own. I can honestly say that the injections DO NOT HURT.
No night sweats since being on the 25mg Enbrel. Also, has anyone noticed tangerines forming on the lower inter-aspects of their knees? No joke now, (this was with the 50mg dose). They looked like lyphomas (no pitting edema) with broken blood vessels on the service. The orthopod said they were nodules associated with RA...I thought that I might get knots, but not assorted fruit on my legs (small hen eggs on inner aspects of any ankles). These do not hurt, but my entire knee and ankle are sore. Of course putting in an 18 hour day did not help, but I think if I don't work now, I may not be able to work in the future (and it looks like the future is closer than I think). Since being off my legs and taking the 25mg Enbrel (combined with deep-heat, knees and ankles elevated while in bed and a wonderful Standback/sleep aide powder that I found OTC) the fruit and eggs appear smaller, but I think I might drive the 2 hours to see the Rhuemy this week for a look & see.
If your night sweats persist and if you have a headache next time, call your Rhuemy and the company. The company took down word for word what I told them...but kinda questioned me on the difference between hot-flashesand these night sweats. (I never took a bath after a hotflash, but the night sweats soaked my entire body).
Good luck and let us know who you are doing.
Thanks for confirming my experience. I had posted before the old
board went down that I thought the med. in the 50mg hurt more, but also
I had a lot more trouble "poking" the needle in. I couldn't
decide if the problem was that the needle was bigger, or less sharp,
but it certainly does not glide in like the 25mg needle. I'll
write the company as well. Hopefully they will get on this soon!
I have taken Embrel since the drug came out in the late 90's. I can't wait to finish the box of the 50mg syringes and go back to the mix your own 25mg 2x a week dosage. The needles are incredibly dull. I called the company and was told that the needles are duller, the ph of the liquid is different from the 25mg dose, and there is much more preservative in the 50mg dose. I kept thinking I was doing something wrong when I injected the 50mg. I wanted the 50mg dose so I could inject and go. I am probably going back to the 25mg dose until they can sharpen the needles.
Hello my name is Jen and I am 31, today was my very first injection of enbrel (50mg) it went really well the nurse at my Rheumy showed me how to do it myself it stung for just a few seconds when the medicine went in, it was a lot less stressful than I thougt it would be I made my husband go with me he said he was impressed I did it myself.
I had my first injection of Enbrel yesterday (50 mg). I did what the nurse
I still don't see the problem with 50mg Enbrel. It stings for afew seconds. then is't over. I've compared the 25mg and 50 mg needle. I did not see a difference. I asked my husband to look. He took a magifying glass to both of them and did not see a difference.
Kieye
Hi all...I've had 11 injections so far. The first 8 were amazing! I really thought I had found my miracle. Now this whole month I have been flaring terribly After two weeks of Enbrel, I finally have a clear head. I know it'sI have been on Enbrel for at least 2 months now. Does Enbrel cause weight gain?
Also, I have been experiencing a sore throat. It's not from a cold or being sick...it's just there. It's been like that for at maybe 3 weeks or more so it's not that i'm getting sick either. Can Enbrel affect my throat?
Thanks.
I just had my second 25mg injection tonight. It didnt hurt at all. But of course ive yet to do it myself. Ive tried and tried and wasted 5 hrs. trying to get the courage to do it myself to no avail. I hope i can eventually get past this and do it myself. After each injection, i experienced dizziness and nausea.Hi Karla,
I'll bet the dizziness and nausea was caused by a bad case of nerves.
BarbThanks Barb. I can send you a rx for chocolate too if u like.
Yea-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a-a- a-a
Karla, first time is always the worst. I'm proud of you and you should be proud of yourself.
Next time lie down on your bed and give yourself the shot.
Did you ever see my post about my first time? I wanted to be sure I got it in and I pushed so hard that the needle bounced right back out.
Barb
Hey Karla! Great job! I do hope that it will get easier for you. I was on the 25mg Enbrel up until a couple of years ago, along with MTX. I wasn't sure I would be able to do it myself, but it was pretty easy. I'm now going to be starting the Enbrel again as soon as I can get the rx filled, only this time it's the 50mg injection. I've been reading all of the posts about the stinging, but I'm hoping it won't be too bad. Like Barb said, I think it will get easier for you. Good luck, and know we're rooting for you. Cris Karla don't feel bad....I'm the same way. (Except I use Humira) Two weeks ago I did it by myself. It was alot like what you described; but I did it and I was so proud. This week I decided I'd try it in the stomach like everyone recommends and I barely get the needle in and paniced and pulled it out!! I mean I had a serious panic attack. My husband ended up giving it to me in my butt. I was so disappointed in myself you can't imagine. Like he said though...I have him and he's more than willing to do it for me. I don't have to stress out about that. If and when the time comes and I have to do it myself I know I can...but I'll do it in the thigh like before. The stomach thing freaked me out!! That's GREAT news Karla! I'm so happy to hear that it's getting easier for you. I just picked up my Enbrel this evening. Even though I took it before, (25mg 2Xwk), for some reason I can't quite bring myself to take this one (50mg). Don't know why. I need to get started on it though, so I can start feeling better... hopefully.
Keep up the good work! You're doing great! Cris Cris, If Karla could do, so can you!
Barb
Cris You are not a whimp, Karla. You just wait, one day I will probably be put on something similar and you will see a post from me going something like this: "Well, I got hubby to give me my first shot today. Went just as planned... I sat in the chair and tried to talk him out of giving me the shot. I asked him my patent "Can't I pee in a cup for this?" and well, it did not work!! He just told me no
Yep, that is what you will see from me...lol. Or something similar...lol. So, just think "I am NOT a whimp, Jooniper is the WHIMP! She is the one who will wake up her neighbors."
But glad you got past your fear and gave it to yourself. Knew you could do it, just took sometime. And well, I do not think time will be on my side if and when I have to do injections!! I have heard the word "injections" a many of times while going to doctors and I keep thinking "Oh no I won't!! You Lucky you get blood, you damn vampires!!" So I know they are in my future.
I finally took my first shot this morning. I took the syringe out of the fridge and placed it on the bathroom counter while I showered. After letting it set for a good 30 minutes, I picked it up, looked at it, turned it over in my hand, all the while saying to myself that I didn't want to do this again.
Cris GREAT GOING CRIS!!! Hey I think we should rename this forum from Just starting Enbrel? to Conquering Injection Fears!! What do you guys say? There are many great posts of inspiration. I want to be able to post here one day with my overcoming of fear for injections/needles!!! Hi all, I am new to this forum.. just found it online... I have had RA since 2000 and just started 50mg Enbrel in February. Put it off for a year due to my PARANOIA of needles. The nurse came to my house the first day and she talked to me and put the syringe inmy hand to make me just try to hold it... Then she said "Now just push it in!" I did it myself the first time despite my terror. My hands were so swollen and stiff that we weren't even sure i could physically get it all in. It didn't sting and i have rarely had stinging since. Within 24 hours my swelling was cut almost to nothing, tho i still had pain elsewhere. Since then i've only once got a drop of blood and bruised. Not bad.. Always inject into my belly, alternate sides each week. I take it out of the fridge for about 15 minutes and then rub it between my finger to get the chill off, push meds in slowly, very little sting. Sting could also come from hitting those tiny nerve endings in your skin (so my diabetic friend said). Just thought I would drop in and give my testimony.. no side effects, still on MTX but stopped arava and cut pred in half so far.Hope things still go well... On another note.. has anyone gotten the pneumonia vaccine and had a reaction? I got it about 2 weeks ago and been stiff since and as of Wed night officially have a nice cold
labrat60 You're doing wonderful Karla! I gave myself the second shot today. I can get the needle in, but boy am I slow at injecting it!
I'm thrilled to see you've gotten to be a "pro" at giving yourself the shot! That's fabulous! Cris KarlaOhio, My nurse never told me to pull back on the syringe, tho it does say that in the info packet. I think thats more for if you are injecting deeped into the body. This is going into the sub Q layer of skin, not into a vein or muscle. I have not tried to pull back on it since my fingers are stiff already and i have one hand holding my belly and one hand on the syringe, would need 3rd hand!
See ^^^^^^^ "Conquering Injection Fears!!" that is what it should be called....lol. Hi Cheryl, I've been on both 25mgs and 50mgs. The 50mgs is a little more painful than the 25 because it being a double dose. What helped me is after I get the syringe out of the frig I would let it get room temp or set it on top of my dryer as my clothes were drying and steam would warm it and the injection was much much easier. I find that if im injecting at exactly a 90% angle it is so much easier that way too. Hope that helps! Tara Lynn, i have only used the belly, and most say its the best spot. but its a sub q shot, so anywhere its only sub q should work. Hgreen, There are other posts about gaining weight either in the enbrel forum or the Rheumatoid Arthritis forum.l the RA forum seems to be the most busy and we are covering the enbrel thing there. I havent notice weight gain, tho i am way over weight already, and on Pred. but i did lose 70 pounds while on pred, so there is hope (i hope) Hope this helps! Unicorn, You actually LOST WEIGHT ON PREDNISONE!!!!!!!!!!!!!!! I can't believe it. Just saying the word prednisone adds a pound or more on me. I bow before you. I am in awe. Barb
i was on weight watchers for about a year and if i watch what i eat and EXERCISE i lose weight. THe problem was i stopped the program and there was no competition any more ( we were doing it at work and we all monitored each other constantly). Unfortunately i have gained most if not all of itback.. i refuse to weigh myself anymore..
(*edited to add: I am not butterfly kisses anymore, just Butterfly. I just changed my sign in name since I didn't want to use Butterflykisses. I like plain butterfly better. ) Hi there. I just joined this forum tonite! I was injecting and when I pulled the needle out, a lot of blood came out. Now I have a dark purple bruise, the oblong shape that the raised little bump usually us after I inject. I am not too worried about it, but is it bad if it gets in your bloodstream? I am just wondering what I did... because I have bruised before, but never this bad! Thanks! Whoa, am I a post killer or what??????? For every post in this section- I am the last poster. Sigh. Am I really that boring???? Ok, after I injected my Enbrel today, my entire stomach went from a pale peachy color, to a deep magenta with lime green polka dots and hot pink swirls!!! What should I do!?? (Did that get your attention?LOL) I find that if im injecting at exactly a 90% angle it is so much easier that way too. [/quoTE] 90???????? Are you sure you didn't mean 45 degrees like the instructions say? 90 would be straight up and down. 45 would be half of that! I'm confused and it doesn't take much. Butterfly and butterfly kisses are two different people? They both have the kitty avatar and I told you I'm easily confused. HELP. Barb
Barb I'm confused and it doesn't take much. Butterfly and butterfly kisses are two different people? They both have the kitty avatar and I told you I'm easily confused. HELP. Barb
[/QUOTE] Yeah, Butterflykisses was my old name. I am just Butterfly! I just went and put a note in my old post, so it is less confusing. I am glad that my purple bruise is FINALLY starting to turn yellow and go away. It has been a week and a half! (I think?) Hi I have severe RA, I am on plaquenil, and sometimes when the pain is too strong I have to take prednisone, My dr. wants me to switch to either methotrexate or Enbrel, however, I am really scare that these medicines will mess my body up more than It already is. I do not even know if I am able to afford this treatment and all the medical exams that they require. Can somebody tell me what is the estimate cost of it, if you have not insurance. Thanks!I to am new to Embrel 50mg 1 per week. I have done 2 shots with no problem. I am using the prefilled, not the sure click system. The Nurse told me not to go with the Sure Click as you do not have control over the rate at which the meds are injected. I felt improvement a few days after the first shot. I am back to rock climbing and feeling far less tired.
Can I just say - rock climbing!?! Woo. I want what your having.Hi there. Yes I'm on the 50mg shot and it does hurt and sting like a bee . The Dr told me to set it out for 15 min to warm a liitle, I do ice which helps, and push in meds slowly. Hope that helps you out. Take care.I have been on Enbrel for 6 months now. It does work. I have AS and still suffer a bit in the mornings but with excercise, it has helped me want to move around more. I started with the needles and hated them. But then, my insurance sent me the sure click and at this point, I would do anything for the needles. The sure click is cleaner and better arranged but it pushes everything in at one shot and is very painful. At this point, I want to wait for my 3 weeks to end so that I can demand the needles back.Ronnie-
I'm not exactly new to Enbrel, and have been injecting twice a week for quite some time. I am, however, new to the sureclick! Help! The practice shot under the instruction of my rheumatologist was easy, no problem, piece of cake. But, when it came to the real deal, quietly at home, I flinched as I pushed down on the purple top. So, the needle popped out and the drug squirted all over me. Any advice? dordale! Thanks for the advice. I am certainly going to try it. I know I pscyhed myself into a nervous panic. I think the ease of a once a week thing, and no mixing will be worth a few seconds of stinging. katie Hi to all! My first package of Enbrel sure-click injectors will arrive on Wednesday. I am SO nervous....especially after reading comments about the sure-click. I think I'm most nervous about it not taking effect right away. I'm wondering how long it was once you started the injections until your symptoms cleared up? Thanks for any info you might have! I have switched from Enbrel to Humira and have 3 injections of Enbrel in my fridge (50 mg). If anyone knows some one in Atlanta that could use these 3, I'd love to offer them. I'm sure somebody that has to pay full price for this stuff wouldn't turn it down. My Dr.'s office says it's a difficult situation because these are the needles with the rubber stopper and not something that is tamper proof. Anyone have any suggestions? I really can't bring myself to toss them. Thanks- Hi folks! I started my Enbrel yesterday after a little hesitation about side effects, long term effects, etc....but my first injection was not even close to how bad I thought it might be. I was expecting it to burn or hurt really badly after some of the stuff I have read. I'm using the SureClick auto-injector because I couldn't handle a regular needle. I took it out of the refrigerator about an hour before I went to the doctor so it would not be cold, as I had heard the temperature difference usually burned. Also, my doctor recommended that I inject into my stomach because there are not many nerves and it would not hurt as bad as the leg or arm. He was right! It di d not hurt at all! I'm waiting now to see what happens in terms of side effects.... Hi Dordale, I didn't have much trouble getting it to activate. I'll admit, I thought my stomach was flatter than it is! I had to push it in kind of hard so that the little purple ring around the bottom was depressed like it says, but to be honest, the pressure of that pushing into my skin was the only part I could really feel and that pressure didn't really hurt, it was just pressure. I could barely tell the needle even went in. (I'm like you, I thought it would be hard to push it into my stomach, but after the doc's recommendation and reasoning, I went for it and it really didn't hurt at all - the click scared me more than the needle hurt - maybe because it was the first injection). I don't know that I'll even try it in my leg just because the stomach was so much easier than I anticipated. I would definitely recommend leaving the medicine out for at least 45 mins or more so that it's not cold. I didn't feel the medicine at all. I was concerned since it is supposed to be refrigerated that it couldn't be out for a significant amount of time, but my dr said that it was fine to leave it out as long as it took to get to room temp....and that an hour (or even several) wouldn't hurt it. Hope that helps! Happy 'clicking'! Sarie I am a 35 y/o with psoriatic arthritis. I have had psoriasis for 16 years and the arthritis for 3 or 4. I finally went to see a Rheumatologist when the thumb on my right hand (I'm right handed) swelled up so large I couldn't bend it. Well, here we are 3 months later, it's still swollen and Methotrexate didn't touch it. I did my first 50mg Embrel injection on Thursday night. I was terrified because I had read how much it would burn and I dont like needles. It was no problem. My cousin, who is diabetic, said I should pinch the area enough to feel the pinch and press the plunger slow and steady. That and room temp meds....I never felt the needle and only a slight sting as the meds went in. I may be completely crazy....or maybe was due for a down cycle anyhow...but I already feel a bit better. If this is for real, WOW. Glad to hear you liked it better! I'm on my 4th week and have already noticed my skin improving. Yay!! Of course it's summertime too and that always helps...but time will tell. Hope y'all have a great week!! -sarie I think that some of my improvement may be mind over matter...but, hey....I thought the methotrexate would work and it didn't....so maybe it's also the drug. I have my fingers crossed. Hi Allycat, I don't know if I can be of much help to you regarding being put on to Enbrel. My rheumy tried to put me into a clinical trial for golimubab. However, I was excluded because of a low platelet count in my blood. When this happened he said he would try to get Enbrel for me. I have had RA for over 15 years & have kept working all the time. I think his main idea by putting me on Enbrel was to get me off prednisone completely. Apparently the kit for Enbrel has to come from Canberra. I will have a look to see if I can find a doc who can access this for you in South Aussie. The kit comes complete with all instructions in Booklet & DVD form in a cooler carry bag (so you can keep it refrigerated )when you pick up from the chemist. You have to order it in advance as they have to get it in. If I can find out anymore I'll let you know. Hope you can get access to it. It worked wonders for me . I think my diarrhea problem was related to something else entirely.
Today makes 8 weeks on Enbrel. So far, everything is GREAT. I was really worried after reading some folks' side effects, etc. but so far I have no complaints. I had psoriasis on approx 80% of my body. Now, I'd guess maybe 10%. I can't even express what a God-send this medication has been. Good luck to you guys too! I hope it works out Hi all. I am new to this site and new to arthritis. My 13 yr old daughter has recently been diagnosed with polyarticular JIA and though i realise there is a seperate site for juvenile IA, she is starting on enbrel next week and I'm wondering if there is anyone out there with experience of young people on enbrel? Methotrexate x 10 weeks had just started to work really well but side effects means she has to stop it. Hi and good morning to everyone! I am new to this message board, found it while looking up my miracle treatment for OA. I started taking Limbrel three weeks ago. It is a natural food supplemnt and approved by the FDA. I am 64 and when I turned 30 I was diagnosed with OA. My Orthepedic surgeon was a good friend of the family and all he said was I am so sorry, it is only going to get worse, then put me on drugs. My OA problems were a direct result of being a stewardess/flight attendant for a long time and serving the passengers in high heels. For years I have tried everything, with zero luck. My new doctor has OA also and suggested I try Limbrel. I am almost pain free now, no stiffness in the morning. I still have discs problems, but will try this as I refuse to even think about surgery. If anyone would like to tell your doctor about it, or have more questions, feel free to email me. The web site for this is www.limbrel.com I hope I can help someone else as I know how dangerous the other drugs are. Have a wonderful Sunday.
Sam Hi Folks I have had RA now for nearly 4 years and have been on differing combinations of different medication including all the NSAIDS and Methotrexate plus Plaquenil (Hydroxychloroquine sulphate). I had a right knee replacement for severe osteo arthritis last november and I am currently awaiting an appointment with an ankle specialist as i have sever osteo athritis in my right ankle. My rheumatologist tld me 13 weeks ago that I would have to cease taking the methotrexate as it was casing me to have liver/blood problems and informed me that I could have the expensive anti TNF drugs. In the 13 weeks since I stopped taking the methotrexate i have gradually got so bad that most days it was a terrible struggle just to get out of bed never mind do anything esle in life. Finally yesterday I gave myself in the company of the rheumatology nurse the first embrel(etanercept) injection (50mg). I was so gobsmacked that I was able to do it as i am such a baby when it comes to needles. That was just 25 hours ago. This morning I had less stiffness in my joints than I have had for months aybe even a coule of years. That may be down to the drug or just the euphoria at getting the drug which I am informed costs £10,000 per year. However which ever it is I only hope that it continutes to be the case. People knock the NHS in the UK but I can't fault it or the medical team that are looking after me they are brilliant. I also have less pain today but that also maybe due to the euphoria effect. One slight little niggle though I have done nothing but cough this morning though it now has stopped. Has anybody experienced this. It has completely gone now not even a tickle but this morning it was an eyewatering cough. I was told that this medication is life changing and I dont want to have any reason to stop it if that is going to be the case but i can't find anything in the list of side effects on the literature that came with it about coughs. Thanks in anticipation for your help Hi Marcia V You will find a significant improvement after about a month. I did. Most of the swelling I had disappeared. My rheumatologist said that the combination of 50 mg Enbrel with 10 mgs Methotrexate is the ideal treatment for my RA. This drug is ver expensive au49.00 per four weeks. Here it is available on the PBS service for .90. Who could complain about that. Hope to hear from you after a month or so. Cheers i have been on enbrel for 4 weeks, not much changes yet. every week that goes by i am hopeful! i have seemed to feel somewhat better tha last few days. could it be enbrel? i sure hope so! kel Dear Kel, I hope so! I just administered my second 50 mg shot and I am waiting for the day that I can actually walk better. I am also trying this natural acai berry "juice". I'll try anything at this point. Had a scary MRI the other day. Preliminary results are a stress fracture, but I have to go tomorrow to see if it could be a lesion - bone cancer......at that point I won't know what to do. Good luck to you. Michellle Hi Kel Next tuesday will be my fourth injection of enbrel. I am not taking so long to get going each day and my ankles don't feel as tight as they used to do but the swelling in my wrists and hands has not gone down yet. I do feel that I have a little more energy too. My nurse said three to six weeks would be the feasible time to notice a change and i do think that I am on track. Hope that willl be the same for you too. Regards
Marcia Dear Marcia, I have just given myself my third shot of Enbrel and don't seem to notice much difference. I want to, but I don't. Am wondering now if I'
Michelle I have had computer troubles lately so couldn't get to the site to post. Took my 8th injection this week. Three weeks ago I decorated a bedroom and have so much more energy its unreal. I also dont feel so depressed anymore. The week before I started these injections I spent three days in bed. I still get pain if I do too much. I spent three days solid on the computer when I got it up and running as I edit a parish magazine and my hands were awful but that was my fault. I now pace myself and life is so much better. A whole lot better since this wednesday as I went to see orthopeadic ankle specialist and I am having two ops on my badly osteo arthritic ankle in about three months time. One to fuse the lower joint and the other six weeks later to give me a new upper ankle joint. Having had a complete new knee last November I shall soon be worth as much as the six millian dollar man!!! One thing that I have found with doing the injection is that you must make sure that the needle is not oozing the liquid out when you stab yourself with it. Just clear the air and then I shake it so the drop falls off the end before I stab it in to the pinched flesh. AS I am taking it out I press on the spot with a cotton wool ball and leave it pressed on the spot for a good minute. That stops any bruising. I rotate between left tummy and right tummy and top of left thigh. Cant use top of right thigh as I have bad scarring from car accident. I take it out of fridge at least an hour before I use it too. I really am astonished at the difference that it has made to my life. I can actually do things again, albeit not as well and as efficiently as I could before RA but better than I have been able to do for at least two years. I know that I am lucky to have the access to this drug because of its cost but here in the uk as I am over 60, I don't have to pay a thing for it. &nb sp; &nb sp; &nb sp; Take care all Best Regards Marcia HI Alleycat Good Luck with the injections it really does work well for me so Hope that it works the same for you too.
I never thought that I would be able to get myself to do the injections but I have now got used to it and its not a problem at all. Best Regards Marcia
When I first started on Enbrel I injected into my thighs and it was
painful. I switched to injecting into my tummy and it is
painfree. I feel the initial prick but after that, nothing.
OK, still havent given my own shot!!! Maybe tomorrow. I HAVE to
do it tomorrow. Im so disappointed in myself and mad at myself that im
not strong enough to give my own shot. My self-esteem has been low most
of my life and this isnt helping.
Guess I will see what happens tomorrow.
UPDATE: I just got done giving myself my own shot. I still think im
going to have problems doing that. First I numbed the tummy, then I put
the shot in slowly, I couldnt believe how easy and fast it slid in, but
as i was pushing the plunger and putting the med. in myself, I just
about fainted. I had to do it quickly because I knew if i didnt then i
would pass out and not get all the med in me. Well i was standing at
the time and i got all the med in me and sat down and then layed down
on the bed and was outcold for I dont know how long. I was soooo
sweaty. Im feeling better now but i still think im gonna be afraid to
do this. I dont know why i passed out. I usually only pass out when someone
is taking blood on me. Well, got through one hurdle (giving myself the
shot) now i have to get over the hurdle of passing out. Man, im
such a wimp.
THANK YOU EVERYONE FOR YOUR ADVICE AND MOTIVATION.
Labrat60: ive never used ambesol, by the time i got my nerve up to give
it to myself i use the icepack that came with my meds (mail order is
how i get my embrel) place it on the tummy, it gets really numb, apply
the alcohol swab, wipe off any excess gently with a cotton ball
and put the needle down to touch my skin and push it in. I dont
feel a thing. Its great. Now, I havent gotten up the nerve to do
it without numbing, but i guess as long as i can numb it, I will be
doing that.
HEY Everyone, remember when i was so scared to give my own shots
and finally did it. You all said that I would be giving advice to
ppl eventually. You are RIGHT!!! I just didnt think it would be
this soon, in fact I never thought I would reach the point that I would
inject myself. Strange how things happen. :)
The thing i have a problem with after the needle is in and your
supposed pull back on the plunger a lil bit to make sure no blood comes
into the syringe before you inject the meds in. I dont think I
pull back on it enuff, Im afraid im gonna pull the whole needle out if
i do that.
This might seem strange, but I even look forward to the days that I
have to give myself the shot. I feel like i conquered that fear
everytime i do it by myself. Im sure the thrill of being able to do it
will not be around for too long and im sure i will start cursing the
days i have to do it.
is the stomach and thigh the best site.?
I wanted to tell everyone my story, but i am sure that everyone's is
going to be the same.. I am 27 now and I have been living with
psoriasis since i was eleven.. Finally i heard about this shot.. It has
changed my life.. I absolutely love it. i too was on the 25mg but i was
getting sick of doing it 2 times a week. The Derm switched me to the
50mg shot, however; it burns but i deal with it. All i have to do is
look at my results and i dont care.. For the first time in my life I am
clear of psoriasis.. But i what I want to know if anyone has noticed a
little weight gain/maintaining weight. I was in the army for 8 years
and now I have never been in better shape.. But the weight does not
come off. I have never had a problem loosing it. I am now starting to
go to the gym 2 times a day, because I am a little confused...Dont get
me wrong, I am not saying that i am heavy, but its like i really bulked
up.. I hope to hear form someone soon.
I completely agree with you! I tried the Sureclick too and found it quite painful. I ended up digging my nails into my thigh as it was injecting. Also. I am thin and I ended up injecting into my muscle and had trouble walking for about a day or two. I actually still have two left, which I will have to you at some time.
I recommend switching back to the syringes. That's what I did.Just another point of view. I like the SureClicks. I'd much
rather use them than the syringes. I do agree however, that the
solution does sting going in, but since it only lasts for 10 seconds or
so, I can deal with it.
Luckily I haven't had the problem that KatieMuse or hessalina have had with the solution not getting injected.
Katie, not sure if this will help, but one thing I do is make sure that
the TV is on and I'm sitting in front of it when I give myself the
injection. I want some kind of distraction while I'm
injecting! I line everything up, click the SureClick and then try
to take my mind off of the injection until I hear the final click.
dordale
~hessalinaThe SureClick is the way to go. The only drawbacks I see is that it does hurt a little when the injection first starts and I've noticed I bleed more from the injection site. Otherwise, I would HIGHLY recommend it over the standard needle.
I'm glad that your first injection went well!
I use the SureClick as well, but have always injected in my thighs. Not sure if I could do my tummy!! Next time I inject, I might try it...as I do always have quite a bit of stinging when I do it in my thighs.
Just curious--did you have any problems getting the SureClick to activate when injecting in your stomach? I find that I have to push down quite hard on my thighs to get the purple shield to retract.
dordale
I think I'll try my stomach next time...if I can get the nerve up. I'm used to doing injecting in my legs, and for some reason it seems weird to me to do it in my stomach. But, I have a feeling it would be a lot easier, and a lot less stinging if I injected in my tummy.
dordale
Glad that the Enbrel seems to be working for you so well! I certainly hope it keeps up!
I did take Sarie's advice and have injected in my stomach instead of my thighs the last two times. I do have to say that it's been much better!! I have only had minimal stinging. Thanks Sarie!!
dordale :)
There's a lady that posts over at www.4ratalk.com that has young son that is doing well on a combo of MTX and Enbrel.
dordale
I hope it helps OA....i still needed another knee revision, and other RA meds...still have that bottle, may take it to use it up, and see if it helps my RA
dordale
Noticed some of you mentioned the stinging...just wondering, do you
leave it out for 15-30 minutes before you give yourself the shot? Also
if you do it at more of an angle, you will be less likely to get a
bruise.
But yeah, if it reaches room temperature before you give the injection, it barely stings at all.
Hey Cheryl, personally I dislike needles... But have you tried a smaller needle or do you pinch your skin first like the doctors do? If not split the dosage like you said ---
Wow! I've been on Enbrel since right after 911. It has saved my life!! I had to go off of it for 2 weeks back in early June (I cried, when my Doc. told me to stop!) Besides having a killer flare, I had the worst fatigue! I found that the worst side effect in taking the injection in my upper thigh were these huge welt/ bruises. And I'm too chicken to take the shots in my stomach. EEEEUUUUU!!!!! So my husband gives them to me in the flabby (well small flabby parts - very small!) of my behind. He switches the sites around. I take (2) 25 mg a week. My Doc. says that when most of his patients switch to the "50's", the have problems & want to switch back. Anyone have problems switching doses?
Thanks! AnneHi everybody, just had my tb test today. starting on embrel within the next few weeks. I am so hoping it works as well as it has on many of you. I will be taking the 25mg but not sure yet if it will be the prefilled or not. Reading all these posts has been so helpful and promissing(sp) . I am still nervous about injecting myself but I am sure I will get used to it.
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