Medical Forum / Diseases and Disorders / Arthritis / March 2005
Embrel
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Crosley53@webtv.net - 23 Feb 2005 02:53 GMT Has anyone that is on Embrel that has injected the new prefilled syringe noticed anything different ? I have a real burning sensation when I inject the medicine. I never had this with the previous way I injected the Embrel.
Thank you. Betty from Pa
Sunny52 - 23 Feb 2005 13:58 GMT Hi Betty I just started using Enbrel, so I have no real experience with the older version.
Yes, there is a mild burning when I begin injecting, but it goes away after 30 seconds. My first injection was quite uncomfortable, so I came here for help. Now I let the syringe warm up for 20 minutes and I inject over a longer period.
I hope this helps.
Good luck. Bonnie
Harvey R. Stone - 23 Feb 2005 18:52 GMT > Has anyone that is on Embrel that has injected the new prefilled > syringe noticed anything different ? I have a real burning sensation > when I inject the medicine. I never had this with the previous way I > injected the Embrel. > > Thank you. Betty from Pa Yes, I found that I need to slow down my injecting. It is a larger shot than the two/week. I just love the fact that it is once a week rather than twice a week. Harv
Ted - 27 Feb 2005 03:21 GMT > Yes, I found that I need to slow down my injecting. It is a > larger shot than the two/week. I just love the fact that it is > once a week rather than twice a week. Harv It's actually not a larger shot. Both versions inject 1 milliliter of solution. But the formulation is quite different, which probably accounts for the stinging. I'll try injecting it more slowly and see if that makes a difference.
By the way, injecting the old version always gave me large bruises that could last up to a week. I haven't experienced any bruising with the new version. Maybe that's appropriate compensation for the stinging?
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Harvey R. Stone - 27 Feb 2005 04:55 GMT Hi Ted, You are correct and I used the wrong word. I should of used the word,,, thicker or more dense instead of the word larger. My first DMARD was gold shots. You want to talk about sting,,,, thicker fluid,,,, now that hurt but the nurse was pretty and did her best for a person with every shot. So it goes. Harv
It's actually not a larger shot. Both versions inject 1 milliliter of solution. But the formulation is quite different, which probably accounts for the stinging. I'll try injecting it more slowly and see if that makes a difference.
By the way, injecting the old version always gave me large bruises that could last up to a week. I haven't experienced any bruising with the new version. Maybe that's appropriate compensation for the stinging?
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Nann Bell - 27 Feb 2005 11:59 GMT > Hi Ted, You are correct and I used the wrong word. I should of used the > word,,, thicker or more dense instead of the word larger. > My first DMARD was gold shots. You want to talk about sting,,,, > thicker fluid,,,, now that hurt but the nurse was pretty and did her best > for a person with every shot. So it goes. ROFL! well, at least you had some comforts for putting up with the pain of the injections. heehee
so, does anyone know how they came up with using gold for RA? I may have heard, but can't recall right now. Mike just asked when I told him why I was laughing :)
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Harvey R. Stone - 27 Feb 2005 13:15 GMT > so, does anyone know how they came up with using gold for RA? I may have > heard, but can't recall right now. Mike just asked when I told him why I > was > laughing :) > Nann Hmmm, I would like to know that also. I would think that it was like all the rest of the medicines for that period of time. They noticed improvement in RA while taking a medicine for something else. Harv
johnie - 27 Feb 2005 14:12 GMT i do know that gold salts were used in the treatment of Tuberculosis in the early 1900's. Most likely someone with RA was being treated for Tuberculosis and realized the gold helped with the RA.
i also found this floating around out there.
Despite increasing sales of gold supplements, and claims of benefits for neurological and glandular conditions, gold has received little attention in modern medical literature except as a drug for rheumatoid arthritis. Historically, however, gold had a reputation as a "nervine," a therapy for nervous disorders. A review of the historical literature shows gold in use during the 19th century for conditions including depression, epilepsy, migraine, and glandular problems including amenorrhea and impotence. The most notable use of gold was in a treatment for alcoholism developed by Leslie E. Keeley, M.D.
johnie
>>so, does anyone know how they came up with using gold for RA? I may have >>heard, but can't recall right now. Mike just asked when I told him why I [quoted text clipped - 6 lines] > in RA while taking a medicine for something else. > Harv firechief - 28 Feb 2005 02:48 GMT Harv wrote;
>,,,, now that hurt but the nurse was pretty And that took your mind off the shot. <g>
... Don't buy furs. It takes trees to make protest signs.
Ted - 27 Feb 2005 03:17 GMT > Has anyone that is on Embrel that has injected the new prefilled > syringe noticed anything different ? I have a real burning > sensation when I inject the medicine. I never had this with the > previous way I injected the Embrel. Yes, I noticed significant stinging the first time I injected the new pre-filled syringes. Since the old mix-and-swirl version never caused me any pain, I was rather shocked when it hurt so much.
So I called the Enbrel help line to talk to a nurse. Her response to my question seemed like well-scripted stonewalling, along with the implication that it was somehow my fault for injecting it incorrectly. When I pointed out that I had been injecting the old version for over six months using the same technique without any stinging, she volunteered that the needle on the pre-filled syringe wasn't the same "Precision Glide" type and that it might not be as comfortable.
When I asked whether she had heard of anyone else calling in to report stinging, she replied that it would be illegal to answer that question because of "the new HIPAA law." That didn't sound right to me, so I later did some research and found that HIPAA protects the privacy of individual patient records but has nothing to do with the sort of general question I asked. She took an "adverse effect" report (with lots of private questions, presumably protected by HIPAA) and told me to call my physician if I have any adverse reactions. I came away with the distinct impression that Amgen is aware that the new formula causes stinging for some people, but their customer support staff are under orders to keep quiet about it.
Since then I've used three different lots of the new Enbrel. They all sting quite a bit during the injection and for a few minutes afterwards, even though I'm meticulously careful to let the syringe warm up for half an hour and to make sure the alcohol prep has completely evaporated before I inject.
It doesn't bother me much because I'm now accustomed to the stinging and expect it. What does bother me is the way Amgen seems to be treating this problem by hushing it up and possibly using HIPAA as shield. It would surely be better for patients if they could have simply reassured me with "Yes, some patients do experience stinging; it's normal and don't worry about it." But protecting the stock price from any adverse publicity always takes precedence over customer relations. Since I was on Vioxx for two and a half years while Merck apparently withheld data about it to avoid harming their stock price, I'm cynical and distrustful about anything having to do with the pharmaceutical industry.
Amgen are aggressively pushing the new formula, presumably to overcome a marketing disadvantage they've had with Enbrel since Humira (with its twice-a-month dosing) was introduced. The weekly pre-filled syringes are certainly more convenient than mixing, swirling, and loading the old syringes twice a week. I think the convenience outweighs the stinging, but I really would have liked to a warning about it (or at least some reassurance) instead of being surprised when it happened.
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Nann Bell - 27 Feb 2005 04:50 GMT > So I called the Enbrel help line to talk to a nurse. Her response to my > question seemed like well-scripted stonewalling, along with the > implication that it was somehow my fault for injecting it incorrectly. rather an interesting response..... My Rd's nurse told me lots of folks have some stinging with the injection and I definitely do. I thought nothing of it as she'd given me the heads-up and I used to get allergy injections that sometimes stung a lot too.
Now I wonder if Amgen had told them about the stinging or if they'd just learned it from their patients.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
DD Woodford - 01 Mar 2005 02:14 GMT Hi Guys,
I've just finished my first box of the new Enbrel and wondered if others were experiencing the same bad experiencing I was. I do plan to call and give Amgen my opinion of the 50mg. dose. I do like the convenience, but I hate everything else about it. In my opinion, Amgen has taken two steps backwards. Not only is the new formula one that stings but we're back to having the problem of using dull needles. At least the old enbrel was somewhat of a pleasant experience compared to my weekly allergy shot which hurt to inject and stings for a full 30 seconds after injection. I had given kudos to Amgen over the last couple of years for improving the experience by giving us and extra needle to make it more comfortable.
I know, I know, it's still more convenient but at this point I think I'd rather have two shots without the discomfort and the ease of injection. Before I didn't mind the shot, now I dread it. I plan to finish my next month supply but will get a new prescription for old 25mg dose pak. I'm sure though once that supply is used up, I'll be forced back... Maybe by then Amgen will have listened to patients feedback and once again improve things as they have in the past
Phyllis
Harvey R. Stone - 01 Mar 2005 04:28 GMT > Hi Guys, > [quoted text clipped - 18 lines] > > Phyllis Hi Phyllis, You make a good case about your experience with the weekly shot. Please keep everyone informed with what takes place and their response to what you have to say. Harv
DD Woodford - 02 Mar 2005 01:34 GMT Well I'm happy to report that I had a very nice conversation with Alene (my new best friend) the RN who took my call. I told her how I have been taking Enbrel for many years and I am very discouraged by my experience with the new dose... I explained to her that I had completed a months worth of the new 50 mg. and experienced stinging and thought perhaps it was an off batch. However, after starting my second batch I had the same experience and wanted to question as to whether the solution was changed and if others were reporting the same thing. Not only does the needle bounced off my toughened sking but the solution burns like mad for up to 20 or 30 seconds afterwards.
She said some peopel are experiencing the stinging. She got technical in saying something like the ph balance is higher in the new soln. in order to preserve it as long as the old. Also, there is NO benzole(?) alcohol in the new 50mg. but there is some in the 25 mg., which has an anesthetic effect.
The needle is dull because the rubber stopper, which is for sterility purposes is dulling the needles.
I asked if the 25mg. was going to continue to be manufactured because I was thinking of switching back after I complete this batch. She said they will always have the 25mg. because younger children can not take the 50mg. She that would not be a problem. Next, she gave me some tips to try before my next shot. They are as follows:
1. Let the injection set out for at least 30 minutes before injection (I've always done this); 2. Minutes before taking my shot, get some ice and ice the injection site for a few minutes (minutes -- not seconds); 3. Do not let any liquid escape to the tip of the needle. (I must admit, I was squirting the first drop out as to avoid injecting the air pocket between the solution and needle and of course liquid is still on the needle. She explained that would definitely make it burn. She advised me to push the liquid to the the front of the needle but do not let any liquid escape and remain on the tip; 4. After icing and right before injecting, thump the area to bring the capillaries to the top; and 5. She did not tell me this, but actually this was posted here years ago, make sure the needle is bevil site up when injecting. Trust me, this does make a big difference.
This nurse was so friendly and so helpful and very much eager to help my next experience be a better one. I will certainly practice all of the above next Monday when I'm due for my next shot.
I asked if she had a comment question she could send to Amgen and she said yes! I said please come up with a better needle protector. That they had improved the 25mg by giving us the extra needle and they have taken a step backwards with the packaging of this one.
Our entire conversation lasted at least15 or 20 minutes. After she answered my questions, she asked if I would mind answering questions for her. She said the information would be passed along to the FDA and Amgen. She not only noted my call and my concerns but asked me 8 - 10 other questions. She said Amgen is tracking the information and feedback given by those using Enbrel and that they do make efforts to improve. It was nice to know that Amgen is interested in what I and others have to say.
Phyllis
> Hi Phyllis, You make a good case about your experience with the weekly > shot. Please keep everyone informed with what takes place and their > response to what you have to say. > Harv DD Woodford - 02 Mar 2005 01:41 GMT Please excuse the typos all over this email... I wrote it in haste as to not to forget what I was told and I did a very poor job proof reading. English really is my first language. :)
> Well I'm happy to report that I had a very nice conversation with Alene > (my new best friend) the RN who took my call. I told her how I have been [quoted text clipped - 61 lines] >> response to what you have to say. >> Harv Joan Carter - 02 Mar 2005 04:05 GMT } Also, there is NO benzole(?) alcohol in the
>new 50mg. but there is some in the 25 mg., which has an anesthetic effect. I would think the alcohol would cause stinging. When I inject my Betaseron I make sure the alcohol from the swab has dried completely before I inject. It is also safe to use soap and water for cleansing the area as a fast swipe with an alcohol swab just sort of moves things around. When we were injecting solutions into central lines at work we did a one minute scrub at the injection site on the IV with Betadine first.
>The needle is dull because the rubber stopper, which is for sterility >purposes is dulling the needles. So true. :-)
>3. Do not let any liquid escape to the tip of the needle. (I must admit, I >was squirting the first drop out as to avoid injecting the air pocket >between the solution and needle and of course liquid is still on the needle. >She explained that would definitely make it burn. She advised me to push >the liquid to the the front of the needle but do not let any liquid escape >and remain on the tip; Another good tip. People don't realize it takes a lot of air to cause problems and even in an IV a few small bubbles are not dangerous.
>5. She did not tell me this, but actually this was posted here years ago, >make sure the needle is bevil site up when injecting. Trust me, this does >make a big difference. This must be sub-cutaneous is it? What size needle? They are now saying to give sc shots at a 90 degree angle as the new needles are shorter. However I still like the 45 degree, bevel up way and sometimes use it.
>Our entire conversation lasted at least15 or 20 minutes. After she answered >my questions, she asked if I would mind answering questions for her. Sounds like a positive call, Phyllis. Good for you and good luck.
--- Joan
DD Woodford - 02 Mar 2005 13:36 GMT Oh yes, she also said to make sure the alcohol from the swab is totally evaporated before injecting. I always did that before but it bares to mention for those new to Enbrel.
\
> On Wed, 02 Mar 2005 01:34:51 GMT, "DD Woodford" <woodford@swbell.net> > wrote in [quoted text clipped - 51 lines] > --- > Joan Sunny52 - 02 Mar 2005 21:14 GMT Hi Phyllis,
I am new Enbrel and really appreciate all of this helpful information. I also notice some stinging while injecting, but it does not last long. I have not come across a dull needle, but I have only done a total of three injections.
I still hate needles, so I will opt to keep the once weekly 50mg dosage.
Take care. Bonnie
DD Woodford - 03 Mar 2005 00:31 GMT Part of the problem is that the new packaged syringe (50mg) is not a precision glide needle as what we had before and I'm sure the combination of my toughened skin factors in too. I'm glad to hear that you are not having any problems. :)
> Hi Phyllis, > [quoted text clipped - 8 lines] > Take care. > Bonnie Ted - 02 Mar 2005 04:24 GMT > She said some peopel are experiencing the stinging. She got > technical in saying something like the ph balance is higher in the > new soln. in order to preserve it as long as the old. Also, there > is NO benzole(?) alcohol in the new 50mg. but there is some in the > 25 mg., which has an anesthetic effect. It's good to know that they're now admitting the problem. Perhaps I just got a nurse who was tired, suffering from PMS, or just not as nice a person as the one you talked to.
> The needle is dull because the rubber stopper, which is for > sterility purposes is dulling the needles. Maybe they'll switch back to a hard plastic sheath. I always worry about bending the needle when removing the rubber cover.
> 3. Do not let any liquid escape to the tip of the needle. (I must > admit, I was squirting the first drop out as to avoid injecting the > air pocket between the solution and needle and of course liquid is > still on the needle. She explained that would definitely make it > burn. She advised me to push the liquid to the the front of the > needle but do not let any liquid escape and remain on the tip; How do you manage to avoid the escape of liquid? I find that there's always a little drop at the end of the needle when I remove the rubber cover. That happens even when I hold the syringe vertically with the needle pointing up.
> 4. After icing and right before injecting, thump the area to bring > the capillaries to the top; and I've never heard that one, but I'll try it Thursday and see if it makes a difference. I suppose it's a good idea to wipe the thumping fingers with alcohol first to avoid contaminating the injection site.
> 5. She did not tell me this, but actually this was posted here > years ago, make sure the needle is bevil site up when injecting. > Trust me, this does make a big difference. My RD's nurse told me that when she originally trained me. She also said it makes a difference.
> This nurse was so friendly and so helpful and very much eager to > help my next experience be a better one. I will certainly practice > all of the above next Monday when I'm due for my next shot. And thanks for sharing it with us.
> to the FDA and Amgen. She not only noted my call and my concerns > but asked me 8 - 10 other questions. She said Amgen is tracking > the information and feedback given by those using Enbrel and that > they do make efforts to improve. It was nice to know that Amgen is > interested in what I and others have to say. As they say, the proof of the pudding is in the tasting.
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Joan Carter - 02 Mar 2005 16:02 GMT >How do you manage to avoid the escape of liquid? I find that there's >always a little drop at the end of the needle when I remove the rubber >cover. That happens even when I hold the syringe vertically with the >needle pointing up. If you have any sterile dry swabs, just wipe the end of the needle with one of those. --- Joan
Harvey R. Stone - 02 Mar 2005 13:48 GMT Thank you very much for your detailed reply. I think we can get good service from these people. Harv
> Well I'm happy to report that I had a very nice conversation with Alene > (my new best friend) the RN who took my call. I told her how I have been [quoted text clipped - 61 lines] >> response to what you have to say. >> Harv Ted - 01 Mar 2005 06:15 GMT > I've just finished my first box of the new Enbrel and wondered if > others were experiencing the same bad experiencing I was. I do > plan to call and give Amgen my opinion of the 50mg. dose. I do Let us know how they respond to your complaint. Maybe I just got a "bad apple" when I called. But somehow I doubt that. I think if everyone who experiences stinging calls them, they may be forced to take the complaints seriously instead of ignoring them.
> like the convenience, but I hate everything else about it. In my > opinion, Amgen has taken two steps backwards. Not only is the new > formula one that stings but we're back to having the problem of > using dull needles. At least the old enbrel was somewhat of a One thing the stonewalling nurse did admit was that the new needles aren't as comfortable as the old ones. She suggested that I "jab" the needle into my skin as quickly as possible. That made a big difference. The needle goes in easily and painlessly. I don't feel anything.... until the caustic fluid starts flowing from the needle.
One other thing that surprised me was the flimsy and cheap way the new version is packaged. The needle cover is rubber instead of hard plastic, which makes me afraid I'll bend or damage the needle when I pull off the cover. I was also surprised to find that there were no alcohol pads in the new package. When it was time for the first injection, I had to make a run to the drugstore to hunt some down.
I'll bet they're saving quite a bit with the new cardboard package instead of those individual dose trays. But they certainly aren't passing the savings to the user. According to the insurance statement, the price is very slightly more than the old version cost.
> I know, I know, it's still more convenient but at this point I > think I'd rather have two shots without the discomfort and the ease > of injection. Before I didn't mind the shot, now I dread it. I I don't think it's *that* bad. I was shocked and surprised the first time because I never felt anything with the old version. But now that I know what to expect, it's just something I deal with for a minute or so. Sixty seconds of stinging once a week is certainly better than the constant pain of arthritis. I think that's a fair trade. I just wish that nurse had given me reassurance instead of apparently trying to protect Amgen's stock price by ignoring or covering up the problem.
> plan to finish my next month supply but will get a new prescription > for old 25mg dose pak. I'm sure though once that supply is used > up, I'll be forced back... Maybe by then Amgen will have listened > to patients feedback and once again improve things as they have in > the past If they have a history of responding to complaints, then we have reason to hope. Perhaps we might do better by complaining to some Wall Street analysts. Even if Amgen's executives have decided it's in their best financial interest to ignore complaints from people who buy their costly product, they certainly can't ignore the concerns of their "real" customers who buy their stock.
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Charlie - 01 Mar 2005 12:00 GMT It is okay to complain to Amgen nurses about your concern, but it isn't too likely that Amgen will change course; after all, Amgen made a conscious decision to provide larger needles and to alter the new formulation to produce the stinging effect. One probably cannot do much about the stinging effect other than to go back to the twice-weekly formula -- which is still available. The larger needle situation, however, can certainly be dealt with by figuring out how to get the 'new' solution into a syringe with a smaller needle; it isn't rocket science!
> Hi Guys, > [quoted text clipped - 18 lines] > > Phyllis Harvey R. Stone - 01 Mar 2005 13:50 GMT The larger needle situation, however, can certainly be dealt
> with by figuring out how to get the 'new' solution into a syringe with a > smaller needle; it isn't rocket science! But the problem is doing it safely and in a sterile way. Harv
Charlie - 01 Mar 2005 17:43 GMT As I said, Harv, it isn't rocket science.
> The larger needle situation, however, can certainly be dealt >> with by figuring out how to get the 'new' solution into a syringe with a >> smaller needle; it isn't rocket science! >> > But the problem is doing it safely and in a sterile way. > Harv Harvey R. Stone - 01 Mar 2005 18:32 GMT > As I said, Harv, it isn't rocket science. No it will not get you to the moon or anywhere else. Doing a sterile transfer from one needle set up to anther is not as easy as you seem to think. Harv
Charlie - 01 Mar 2005 18:56 GMT Harv, you are perhaps the most negative person I know. Loosen up a little, life would be so much better if you got rid of your negativity and hostility, and began thinking positively. I've never seen an original post or thought from you on this newsgroup; just responses to other people's thoughts -- and many of them have been confrontational. Get a life!
>> As I said, Harv, it isn't rocket science. > > No it will not get you to the moon or anywhere else. Doing a sterile > transfer from one needle set up to anther is not as easy as you seem to > think. > Harv Harvey R. Stone - 02 Mar 2005 00:38 GMT > Harv, you are perhaps the most negative person I know. Loosen up a > little, life would be so much better if you got rid of your negativity and > hostility, and began thinking positively. I've never seen an original > post or thought from you on this newsgroup; just responses to other > people's thoughts -- and many of them have been confrontational. Get a > life! Thank you for your thoughts and honesty. I have a life and a good one and you must be new to this newsgroup which is alright too. Everyone is new at one time or another. What we deal with here is serious and can mean peoples quality of life can be changed . False hopes and dreams are what they are and must be faced. If anyone in this newsgroup gets,,,,,, I forget the word,,,,, full body infection from your thoughts about changing needles,,,,, you can live with that. Harv
Charlie - 02 Mar 2005 00:54 GMT > full body infection from your thoughts about changing needles,,,,, you can live with that.
There you go again!
>> Harv, you are perhaps the most negative person I know. Loosen up a >> little, life would be so much better if you got rid of your negativity [quoted text clipped - 11 lines] > changing needles,,,,, you can live with that. > Harv Thumper - 02 Mar 2005 12:08 GMT >Harv, you are perhaps the most negative person I know. Loosen up a little, >life would be so much better if you got rid of your negativity and >hostility, and began thinking positively. I've never seen an original post >or thought from you on this newsgroup; just responses to other people's >thoughts -- and many of them have been confrontational. Get a life! It may not be rocket science but it's a lot more difficult than you think and is foolish for someone with a compromised immune system to attempt. Half of us can't even get into child proof bottles. Thumper
>>> As I said, Harv, it isn't rocket science. >> >> No it will not get you to the moon or anywhere else. Doing a sterile >> transfer from one needle set up to anther is not as easy as you seem to >> think. >> Harv To reply drop XYZ in address
Charlie - 02 Mar 2005 12:47 GMT > It may not be rocket science but it's a lot more difficult than you think and is foolish for someone with a compromised immune system to attempt. Half of us can't even get into child proof bottles.
You are entitled to your opinion even though it may be incorrect, but foolish, I'm not. How did you come up with that opinion of me?
I'll show you an easy way to get into those child proof bottles if you're really stuck.
firechief - 03 Mar 2005 03:53 GMT > Harv, you are perhaps the most negative person I know. You must know many people. What monastery do they keep you in?
> Loosen up a little, You need to take a clue from your own writings.
> life would be so much better if you got rid of your negativity and > hostility, and began thinking positively. Ditto for you. Mucho, mucho ditto.
Harv is one of the oldtimers around ASA and respected.
... Charlie isn't the brightest candle in the chandelier.
Charlie - 03 Mar 2005 04:42 GMT I don't take advice from idiots like you. Climb back onto your fire truck and take a long, deep sleep ala Rip Van Winkle.
>> Harv, you are perhaps the most negative person I know. > [quoted text clipped - 12 lines] > > ... Charlie isn't the brightest candle in the chandelier. Joan Carter - 01 Mar 2005 20:01 GMT >No it will not get you to the moon or anywhere else. Doing a sterile >transfer from one needle set up to anther is not as easy as you seem to >think. Sorry, Harv, I'm with Charlie on this one. --- Joan
Harvey R. Stone - 02 Mar 2005 00:39 GMT > On Tue, 01 Mar 2005 18:32:27 GMT, "Harvey R. Stone" <none@nobody.net> > wrote in [quoted text clipped - 7 lines] > --- > Joan Fine, fine,,, where are the nurses in this newsgroup when you need them. Harv
Joan Carter - 02 Mar 2005 03:56 GMT >Fine, fine,,, where are the nurses in this newsgroup when you need them. >Harv Right here, Harv, and it can be done safely. I have done it with Betaseron. You have to use caution but it can be done. Bit of a pain in the a.s, but...... --- Joan
Thumper - 02 Mar 2005 12:11 GMT >>Fine, fine,,, where are the nurses in this newsgroup when you need them. >>Harv [quoted text clipped - 3 lines] >--- >Joan And you're a nurse. Many things can be done but that doesn't mean they should be. Thumper To reply drop XYZ in address
Joan Carter - 02 Mar 2005 16:06 GMT >And you're a nurse. Many things can be done but that doesn't mean >they should be. Well, since I wanted my Betaseron and couldn't manage the new 'improved' method they introduced I didn't have much choice. Now they provide the old type for me. --- Joan
Joan Carter - 02 Mar 2005 16:10 GMT >And you're a nurse. Many things can be done but that doesn't mean >they should be. Yup, a good one, too. :-) --- Joan
Lee Thompson-Herbert - 02 Mar 2005 22:22 GMT >>>Fine, fine,,, where are the nurses in this newsgroup when you need them. >>>Harv [quoted text clipped - 5 lines] >And you're a nurse. Many things can be done but that doesn't mean >they should be. Strange, it was the injection nurse who showed me how to do the transfer. Everyone who uses one of the monoclonal antibodies should at least _learn_ the technique, because they're packaged in glass syringes which can break. I had the needle port on an Enbrel syringe break off while I was trying to get the needle cap off one time. That would have been a wasted dose if I didn't already know how to transfer from one syringe to another and already had spare syringes at hand.
To wit:
Uncap your empty sterile syringe. Remove the needle and set it down on a piece of clean (sterile) gauze). Draw the plunger back further than the mark for the amount you need to fill the syringe. Pick up your filled syringe, remove the cap. Insert the needle for the filled syringe into the hole of the empty syringe. Push the plunger down to transfer the medication from one syringe to the other. Discard the now-empty syringe. Put the needle back on your luer-lok syringe. Do your injection.
Not That Hard, folks. If you can do the whole process of mixing the Enbrel, you can do this. In fact, it's easier than the Enbrel mixing process and considerably harder to screw up.
 Signature Lee M.Thompson-Herbert lee@retro.com KoX 1995, SP4 Head Muso, White Rats Morris, Faultline Morris See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html "A head-on collision between Morticia Adams and Martha Stewart"
firechief - 03 Mar 2005 03:58 GMT > >Joan > And you're a nurse. Many things can be done but that > doesn't mean they should be. Must explain why you never learned to smile or enjoy sex.
... I've still got "it." It's just that no one wants to see it!
johnie - 03 Mar 2005 05:34 GMT Thumper <jaylsmith@comcast.net> wrote:
>>Joan >> >>And you're a nurse. Many things can be done but that >>doesn't mean they should be.
> Must explain why you never learned to smile or enjoy sex. firechief, whats up. are you trying to set some kind of record of how many people you can run off this week. I count 4 nasty attacks today.
You must have a quota or a bet cause now your going after regulars, some of them previous conspirators.
Since your marriage you had been doing really well on this front. Not once had the regulars had to gang together to shut you down for awhile but the last coupla weeks you appear to have fallen off the wagon. I know that for a variety of reasons usenet can get frustrating. Do what i did recently, what harv just did, what you have done in the past, what many of us do on a semi-regular basis. Take a few weeks away from reading and posting. recharge your battery. Get caught up on some chores, reading, dancing, whatever floats your boat. There is no shame in needing an attitude adjustment. It happens to everyone. Its just my opinion but i think you need one right now.
johnie
Nann Bell - 03 Mar 2005 16:17 GMT >>> Joan >> And you're a nurse. Many things can be done but that >> doesn't mean they should be. > > Must explain why you never learned to smile or enjoy sex. That really is out of line, chief.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Ted - 02 Mar 2005 04:13 GMT > It is okay to complain to Amgen nurses about your concern, but it > isn't too likely that Amgen will change course; after all, Amgen > made a conscious decision to provide larger needles and to alter The new needle is actually the very same size (27 gauge, 1/2 inch) as the old one. The difference is that it's a different design made by a different manufacturer, since B-D apparently doesn't make a "Precision Glide" needle in a form that can be embedded in the glass tip of a syringe. And, as I said, if you're careful to "jab" the needle quickly into the skin, it goes in easily and painlessly.
> the new formulation to produce the stinging effect. One probably > cannot do much about the stinging effect other than to go back to > the twice-weekly formula -- which is still available. The larger I'm willing to accept that stinging is a necessary tradeoff to produce a stable pre-mixed solution. That isn't what upsets me. If the Amgen nurse had merely admitted that the new formula can sting during injection for some people and it's nothing to worry about, I would not be complaining about it. Her insistence that there's nothing wrong with the formula and the stinging has to be due to my incompetence bothers me more than the stinging itself. It's inexcusable customer relations.
> needle situation, however, can certainly be dealt with by figuring > out how to get the 'new' solution into a syringe with a smaller > needle; it isn't rocket science! The needle situation can be dealt with by inserting it quickly into the skin. But I don't think there's much to be done about the stinging.
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Thumper - 02 Mar 2005 12:13 GMT >> It is okay to complain to Amgen nurses about your concern, but it >> isn't too likely that Amgen will change course; after all, Amgen [quoted text clipped - 25 lines] >The needle situation can be dealt with by inserting it quickly into the >skin. But I don't think there's much to be done about the stinging. Just a note. The same problem exists with Humira except it's once every two weeks. Thumper
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DD Woodford - 02 Mar 2005 23:57 GMT >"The needle situation can be dealt with by inserting it quickly into the >skin. But I don't think there's much to be done about the stinging. I've increased my jab but have had it bounce off a few times... This is just as aggrivating to me as the stinging because they both hurt! After 4 1/2 years my skin has really toughened up. I'm hoping things will go better with the icing of the site...
Phyllis
Di - 01 Mar 2005 11:42 GMT > > So I called the Enbrel help line to talk to a nurse. Her response to my > > question seemed like well-scripted stonewalling, along with the [quoted text clipped - 7 lines] > Now I wonder if Amgen had told them about the stinging or if they'd just > learned it from their patients. That's it. I'm not switching. I was thinking about it, and I have to refill my prescription, so I was going to ask my RD about switching. But, I had so much misery from the stinging with Kineret, I just couldn't take the drug. Stinging was an understatement. It was excrutiating.
I don't care about the convenience. Besides, if the drug hurts so much that I don't want to take it, then that qualifies as pretty damned inconvenient in my book.
Thanks all for the heads up.
 Signature Di zinkadoodle at gmail dot com www.pbase.com/di
Kelly Cobb - 01 Mar 2005 15:11 GMT > That's it. I'm not switching. I was thinking about it, and I have to > refill my prescription, so I was going to ask my RD about switching. [quoted text clipped - 7 lines] > > Thanks all for the heads up. Di, I made the same decision last month when I got my new scrip for this year. The problem is that Amgen will likely change the formulation for the 25 mg dose or drop it altogether in favor of the 50 mg.
I had a chat with the ANP yesterday. She had promised to check out my concerns about the larger needles, stinging and production of the 25 mg dose. She thought maybe the needle on the prefilled syring could be removed, but it's not sounding like it from what I read here. The stinging we already know is a result of the preservative they have to put in it now, but should be better if it's allowed to warm up a bit before injection. She says it is not as bad as the Kineret, according to her patients.
As for continuued production of the 25 mg. dose, studies are showing that the blood level of the drug is the same at a 'trough' level whether the 50 or 25 mg dosage is used, so there may be no reason to continue making the 25 mg. dose. Time will tell, I guess.
Kelly C.
Ted - 02 Mar 2005 04:27 GMT > That's it. I'm not switching. I was thinking about it, and I have > to refill my prescription, so I was going to ask my RD about [quoted text clipped - 5 lines] > much that I don't want to take it, then that qualifies as pretty > damned inconvenient in my book. I suggest trying it. It really is much more convenient. The stinging really isn't that bad, especially if you know about it and are prepared for it. I only had a problem because I didn't expect it, and because the "bad apple" nurse at Amgen insisted that it had to be my fault. If it's too painful, you can always go back to the old formula the next time.
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DD Woodford - 03 Mar 2005 00:05 GMT Same here. The stinging really isn't excruciating. It's just not something I was not use to with Enbrel. As I mentioned before, I do have the same stinging experience with my weekly allergy shots, but because of the stinging, I sometimes go 2 or 3 week just so I don't have to deal with it... I know tho that I cannot do that with Enbrel. Really, the benefits of Enbrel are well worth the discomforts that come along with it. Plus the 25mg dose will always be available and for me was pretty pain free.
Di - 04 Mar 2005 14:01 GMT > Same here. The stinging really isn't excruciating. It's just not something > I was not use to with Enbrel. As I mentioned before, I do have the same [quoted text clipped - 3 lines] > Enbrel are well worth the discomforts that come along with it. Plus the > 25mg dose will always be available and for me was pretty pain free. Thanks guys, but I'm gonna stay with the old 2X25mg until they make me switch. Some people said the stinging wasn't that bad with Kineret either. But, for me it was excrutiating, as I said. I'm a pain wimp. Pretty unfortunate for someone who has arthritis, huh? <sigh>
 Signature Di (the wimpy gimp) zinkadoodle at gmail dot com www.pbase.com/di
wireless155 - 02 Mar 2005 20:03 GMT > > Has anyone that is on Embrel that has injected the new prefilled > > syringe noticed anything different ? I have a real burning > > sensation when I inject the medicine. I never had this with the > > previous way I injected the Embrel. > > Yes, I noticed significant stinging the first time I injected the new
> pre-filled syringes. Since the old mix-and-swirl version never caused me > any pain, I was rather shocked when it hurt so much. [quoted text clipped - 3 lines] > implication that it was somehow my fault for injecting it incorrectly. > When I pointed out that I had been injecting the old version for over
> six months using the same technique without any stinging, she > volunteered that the needle on the pre-filled syringe wasn't the same
> "Precision Glide" type and that it might not be as comfortable. > [quoted text clipped - 11 lines] > > Since then I've used three different lots of the new Enbrel. They all
> sting quite a bit during the injection and for a few minutes afterwards, > even though I'm meticulously careful to let the syringe warm up for half [quoted text clipped - 14 lines] > Amgen are aggressively pushing the new formula, presumably to overcome a > marketing disadvantage they've had with Enbrel since Humira (with its
> twice-a-month dosing) was introduced. The weekly pre-filled syringes are > certainly more convenient than mixing, swirling, and loading the old > syringes twice a week. I think the convenience outweighs the stinging, > but I really would have liked to a warning about it (or at least some
> reassurance) instead of being surprised when it happened. > > --- > Non-spam e-mail: usenet{AT}tedsimages{dot}com > Visit my Virtual Light Table: http://www.tedsimages.com > Travel, scenic, and fine art photography That is such NONSENSE about HIPA precluding the Enbrel people from answering your candid, just question about whether or not anyone else had complained about stinging. It would be illegal for her to have divulged names of people who might have done so, but of course you were not ASKING FOR THAT, and besides, she wouldn;t have had to give you that to have candidly answered your question.
J
Ted - 03 Mar 2005 03:47 GMT > That is such NONSENSE about HIPA precluding the Enbrel people from > answering your candid, just question about whether or not anyone > else had complained about stinging. It would be illegal for her to > have divulged names of people who might have done so, but of course > you were not ASKING FOR THAT, and besides, she wouldn;t have had to > give you that to have candidly answered your question. That's exactly the point. Stating that HIPAA prevented her from telling me whether anyone else had complained was pure.... well, you can fertilize your lawn with it. Between that and her insistence that I was doing something wrong with the injection to cause the stinging, I came away rather upset, and with the distinct impression that they were trying to hide something.
I'm glad someone else got a straight answer. I suspect there have been a lot of complaints, enough so that they couldn't stonewall any more.
> J --- Non-spam e-mail: usenet{AT}tedsimages{dot}com Visit my Virtual Light Table: http://www.tedsimages.com Travel, scenic, and fine art photography
Lee Thompson-Herbert - 02 Mar 2005 22:09 GMT >Amgen are aggressively pushing the new formula, presumably to overcome a >marketing disadvantage they've had with Enbrel since Humira (with its [quoted text clipped - 3 lines] >but I really would have liked to a warning about it (or at least some >reassurance) instead of being surprised when it happened. If competition with Humira is the reason they're hushing it up, that's stupid. Humira doesn't just sting, it *burns* like fire when you inject it. As in, "Holy $#@! that hurts!" Plus, they've got the crappy fixed-needle syringes. Since I've tried transferring the Humira to a luer-lok syringe with a real BD needle on it, it's not the needle that's causing me all the pain. It's the medication. The dull needle was just causing the bruising. I have a high pain tolerance and I still end up chanting out, "This sucks sucks sucks sucks" while I'm injecting the Humira. I'd be happy if it just stung a little.
 Signature Lee M.Thompson-Herbert lee@retro.com KoX 1995, SP4 Head Muso, White Rats Morris, Faultline Morris See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html "A head-on collision between Morticia Adams and Martha Stewart"
Ted - 03 Mar 2005 03:44 GMT On Wed, 2 Mar 2005 14:09:13 -0800, lee@retro.com wrote:
> If competition with Humira is the reason they're hushing it up, > that's stupid. Humira doesn't just sting, it *burns* like fire [quoted text clipped - 6 lines] > sucks sucks sucks sucks" while I'm injecting the Humira. I'd be > happy if it just stung a little. Interesting. One thing I've noticed about the new Enbrel (which is a fixed-needle syringe) is that it doesn't cause bruising. Although the old formula didn't sting or hurt, it always left me with large bruises that could last a week or longer. Despite the stinging, I haven't noticed any bruising with the new formula (and its "dull" needle).
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Nann Bell - 03 Mar 2005 16:17 GMT > Interesting. One thing I've noticed about the new Enbrel (which is a > fixed-needle syringe) is that it doesn't cause bruising. Although the > old formula didn't sting or hurt, it always left me with large bruises > that could last a week or longer. Despite the stinging, I haven't > noticed any bruising with the new formula (and its "dull" needle). I didn't use the old formula, just started with the 50 mg about 6 weeks ago. I have to say I am really curious about the 25 mg needles after all this talk. I have not found the "dull" needles to be at all dull. In afct, on my first injection I expected a bit of dullness so used a bit too much vigor inserting the needle and immediately went in to the hub. Since then I've been gentler, but barely notice the needle going in.
The solution does sting during injection, but I just slow done on the plunger to keep it at a tolerable level. And it's gone in a few minutes so what the heck. Last week my husband told me the sparkle was back in my eyes, replacing the constantly tired look that's been there for some time. A bit of stinging is worth it to have some get up and go again.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
DD Woodford - 04 Mar 2005 03:24 GMT Hi Nann,
Boy those were the days, lol! I've been on Enbrel since it was approved by the FDA. Factor in all those years of weekly shots and most of that time at twice a week, every spot that can possibly be used has been used over and over again. My skin is especially hard and tough in those particular areas. I can remember when I first started the 25mg. the needles were just as dull as the 50mg. and it did go in like butter. Amgen only started to give the extra needle about 2 years ago for the 25mg. and even with tough skin it was a great improvement, for me anyways. Still, I wouldn't trade my Enbrel for all the gold in the world. :) I hope you are having wonderful results with it. :)
Phyllis
>> Interesting. One thing I've noticed about the new Enbrel (which is a >> fixed-needle syringe) is that it doesn't cause bruising. Although the [quoted text clipped - 19 lines] > bit > of stinging is worth it to have some get up and go again. Nann Bell - 04 Mar 2005 14:36 GMT > Hi Nann, > [quoted text clipped - 10 lines] > > Phyllis you know, my brother has been an insulin dependent diabetic for 35 years. We're talking mutiple insulin injections per day for 2/3 of his life - so far. He has no difficulty with hard, tough skin in his injection areas - almost exclusively in his tummy (he doesn't have these large upper body growths to work around, as I do! LOL). I wonder if some skin is just more prone to hardening with repeated injections and some just isn't.
hmmmm, he doesn't actually have hypermobility per the standards, but he does ahve some joint laxity... maybe he also has some of the skin stuff and we jsut don't get hardened skin from the injections. I mean, I went through many years of allergy injections, twice weekly for about 2 years. no skin hardening on my upper arms. maybe it's our "soft" hypermobile skin.....
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
Joan Carter - 04 Mar 2005 17:51 GMT >you know, my brother has been an insulin dependent diabetic for 35 years. >We're talking mutiple insulin injections per day for 2/3 of his life - so >far. He has no difficulty with hard, tough skin in his injection areas - >almost exclusively in his tummy (he doesn't have these large upper body >growths to work around, as I do! LOL). I wonder if some skin is just more >prone to hardening with repeated injections and some just isn't. Good question, I have no answers, but my dad was on insulin for years, again more than once a day. He only used his arms, abdomens were not used then, and I gave him his injection once after I was in training for nursing and it was like giving a shot to an armadillo. Mind you, there were no disposable needles then and he used the same ones over and over, never sharpened, just cleaned.
I have been injecting Betaseron every other day for 6-7 years and now take MTX s/c once a week and I think my skin is not as easy to inject. --- Joan
DD Woodford - 04 Mar 2005 22:53 GMT I dunno why it is. My allergy shots never caused problems and I've been on those more than 40 years. The needles are smaller maybe and is not administered at an angle? My skin is not hard to the touch only when a needle hits it. Some spots are harder to puncture than others. No longer virgin skin I guess.... You know the mound that you get after injecting under the skin, I wonder if perhaps the liquid is not totally absorbed... Just a thought, I bet a nurse here would know better.
>> Hi Nann, >> [quoted text clipped - 33 lines] > many years of allergy injections, twice weekly for about 2 years. no skin > hardening on my upper arms. maybe it's our "soft" hypermobile skin..... Thumper - 03 Mar 2005 05:40 GMT >>Amgen are aggressively pushing the new formula, presumably to overcome a >>marketing disadvantage they've had with Enbrel since Humira (with its [quoted text clipped - 13 lines] >chanting out, "This sucks sucks sucks sucks" while I'm injecting the >Humira. I'd be happy if it just stung a little. Humira has only stung once for me and it really stung that time. The rest of the time it is uncomfortable because of the volume you are injecting. I have to go slow so that it doesn't produce a lump under the skin. Thumper To reply drop XYZ in address
Di - 04 Mar 2005 14:13 GMT > If competition with Humira is the reason they're hushing it up, that's > stupid. Humira doesn't just sting, it *burns* like fire when you [quoted text clipped - 5 lines] > chanting out, "This sucks sucks sucks sucks" while I'm injecting the > Humira. I'd be happy if it just stung a little. This was exactly my experience with Kineret. Pure misery making. If the new Enbrel is using the same preservative, that really sucks. It sucks because they seem to not care that patients will experience varying degrees of misery over it. That appears to be so typical of the pharmaceutical industry these days.
I'm sticking (no pun intended) with the hassle of the old style, as I just cannot endure that preservative. If they do keep the old version around for the kids, that's great. Halleluya!
Thank you all for enabling me to make up my mind. Damn, it's good to be back. :-)
 Signature Di zinkadoodle at gmail dot com www.pbase.com/di
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