Medical Forum / Diseases and Disorders / Arthritis / July 2005
NEW ENBREL USER TOO!
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Becky - 28 Jun 2005 07:00 GMT Hi I had my doc's appointment today and he have me my Enbrel kit, and is going to contact my insurance for me tomorrow and said I should be able to start my first shot next week. I am excited but also scared to death. It took me a long time to start the mtx, I am now up to 17.5, it has helped my wrists but my hips seem to be bothering me along with my neck and ankles, so he figured we should add something else. I was a little worried after reading all the side effects, had an mri to rule out ms, and I am now into my 8th month of the tb meds so he said it was safe to take now, I just wonder if my hip pain isn't more muscle than joint, but don't know. Said to try it for 2 months and we would go from there. I am worried about sinus infections, I get them ALL the time, do most of you taking this drug battle with that? The ladies do you battle yeast infections with the drug? I know that Kelly has the same bladder problem I have and has said it doesn't bother hers, I am hoping for that. I have read alot about the 50 unit one stings so much that the 2 shots a week was better, what is your opinions? I have a friend who said she hear you should ice the area before you give yourself a shot, sure hope I can do that, it took me 5 hours to take the MTX pill the first time, now it is nothing, hope that happens with enbrel. thanks for letting me release. Becky
Marshall Arbitman - 28 Jun 2005 09:09 GMT Becky:
I was scared stiff the first time around. Now I just find a convenient spot, usually on the flabbiest part of my belly and just jam the sucker in. It helps to let the solution warm up a few minutes and yes, it sometimes stings. But honestly, where you're shooting has very few nerves, except on the surface of the skin. So if you simply give a nice smooth jab through, it barely hurts at all. In fact, once it's in, you could probably walk around for an hour with it sticking out of you and hardly notice--not that you'd want to.
As for ice, don't bother. As for the burning, it's minor. As for the odd time (rare) that you bruise or draw blood, don't freak out; you've only nicked a capillary. There's nothing vital anywhere within range of the needle, unless you have a knack for injecting yourself in the neck, groin or armpit.
I've done thighs, buttocks and belly with no problems. I've had friends do my shoulder. Once I knocked the syringe off the table and it landed, needle-first, into the top of my foot. In excruciating pain, but not wanting to waste a dose, I left it there and gingerly pressed the plunger. Success!
It quickly becomes boring, even comical. Don't worry. Regarding side eefects: Study the circular or look it up on RxList.com. You'll find many terrible symptoms in tiny percentages--no more than a placebo--and a few, such as respiratory infections to look out for. As for bladder and other exotic happenings, they are both rare and idiosyncratic--in other words, the correlation with the drug has not been shown in wider tests. Which doesn't mean they're imaginary, just that people like us with RA often have a constellation of pains and maladies, of which some, all or none may be related to any one drug.
Also remember, though MTX, Enbrel, even Advil are serious drugs, this is a serious disease and even the worst drugs--and Enbrel is not even close--have far fewer side effects than medicines for cancer, lupus and other biggies.
So keep asking questions, maintaian a close relationship with your doctors, but hit the disease hard and take the appropriate medicine, dammit! Hope this helps.
Sandy Tipper - 28 Jun 2005 16:51 GMT > Becky: > [quoted text clipped - 6 lines] > walk around for an hour with it sticking out of you and hardly notice--not > that you'd want to. What if you have no flab on your belly? (I wish!) Seriously, I inject in my belly, and there's a big benefit to self-injection: Although there are few nerves, there are some. So I test the injection site with the tip of the needle... if I get a distinct prick without going in, I move just a fraction of an inch, and voila! No problem. You see, the nerves are not evenly distributed, and you can easily find a spot with no pain (or virtually none). Big advantage over someone else who must just do their best and jab randomly. All the best! Sandy P.S: Look at the needle tip... it is slanted. Put the point down, so the needle tip is its tiniest, rather than kinda flat going in.
Joan Carter - 28 Jun 2005 17:39 GMT >I've done thighs, buttocks and belly with no problems. I've had friends >do my shoulder. Once I knocked the syringe off the table and it landed, >needle-first, into the top of my foot. In excruciating pain, but not >wanting to waste a dose, I left it there and gingerly pressed the >plunger. Success! Oh, my, that gave me a smile. Not exactly the preferred spot for a sub-cutaneous injection. Maybe you have come up with a new site. :-)
--- Joan
Becky - 29 Jun 2005 03:02 GMT Marshall, You are so SWEET, I can't tell you how much I appreciate your message, I was just about ready today to call the doc and say I am not going to take it, I am having a good day and wondered if I really need it, and maybe give the mtx more of a try but upping it to 20mg, Most of my pain is in my hips and ankles and with getting new orthodics wonder if it is from that, but then I don't think it would cause fatigue and other issues. Anyway don't mean to ramble, thank you again for all the support and information, it helped a lot Becky
> Becky: > [quoted text clipped - 37 lines] > doctors, but hit the disease hard and take the appropriate medicine, > dammit! Hope this helps. Melvin - 28 Jun 2005 16:24 GMT Hi Becky,
I was scared when I started Enbrel too. I have to say, I was more frieghtened of MTX the whole time I was on it.
Enbrel has been great for me. A little burn going in with the 50 mg injection, but other than that, easy as pie. And the little burn is well worth the benefits.
As far as side effects, what are the alternatives? We either take these drugs and have a small risk of a side effect, or we don't treat our disease and we will have a 100% of getting worse. I'd take the slight risk every time. Drug companies have to list all those things to cover their butts.
Peace... Melvin
Becky - 29 Jun 2005 03:05 GMT Thanks Melvin for the advice, I am glad it is working for you, I am still taking the mtx, but the doc said maybe I could go off it if this kicks in,. Becky
> Hi Becky, > [quoted text clipped - 13 lines] > Peace... > Melvin Sunny52 - 28 Jun 2005 20:19 GMT Hi Becky
I have been on Enbrel for more than 3 months and I continue to sing it's praises. I had a sinus infection (didn't know it was brewing before my first injection), but I skipped one week and my RD told me to continue with Enbrel. The infection did not come back, and have not had one since.
The needle stick is easier than the Mtx. injection, for me anyway. The needle doesn't go into the muscle, so it doesn't hurrt at all. There is some burning while the Enbrel is being injected into the tissue. I have found the burning to be more intense if I do not allow the Enbrel to come to room temperature for 30 minutes.
My doctor did not give me injection instructions because I had used Mtx. injections for many years. Also, he did not give me the start up Enbrel kit with the Enliven information. Someone here suggested that I call the manufacturer of Enbrel before my first injection. It was good advice as I was able to speak with an RN who assured me and went over the injection technique.
I would suggest that if you do not have the start up kit, or any information about Enbrel, you should call your doctor.
I wish you well.
Bonnie
Alison DeLorme - 29 Jun 2005 01:49 GMT I just posted about the burning under another enbrel post. But in regards to the infections, I've never had a problem with it. I don't know if I'm odd in this regard, but I seem to be much more "bug" resstant than a typical non RA person. I work around young children (ped. speech therapist) and very rarely pick up viruses. I did have to go on antibiotics recently for a skin abscess (not related to the RA) and ended up with a yeast infection. First one since the last time I had antibiotics about 6 years ago....
I can't answer much about the pain of the needle. I get very little pain because I've had two c-sections. Most of my lower belly is numb on the outermost skin layers. Everyonce in a while I get a prick but it's well worth it for what the enbrel does for me.
Nann Bell - 30 Jun 2005 14:53 GMT > I am worried about sinus infections, I get them ALL the time, do most of you > taking this drug battle with that? The ladies do you battle yeast infections > with the drug? I know that Kelly has the same bladder problem I have and > has said it doesn't bother hers, I am hoping for that. Hey Becky,
I've commented on some of the other stuff in other Enbrel threads so I won't repeat my coments about the stinging and all of that. I've had times when I had sinus infections almost constantly but we'd managed to improve that greatly before the days I went on Enbrel. But I can tell you that they haven't come back since I've been on Enbrel. The only way the Enbrel has affected my sinuses was by giving me enough energy to do more gardening, so I got stuffed up from the molds and pollens in the soil! Oh well.
I haven't been prone to yeast infections and have had none on Enbrel. Enbrel really shouldn't cause any problems of that sort as it does not kill off beneficial bacteria the way antibiotics do. So you still have your body's natural defenses against yeast overgrowth.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
nikki - 01 Jul 2005 14:51 GMT > I am worried about sinus infections, I get them ALL the time, do most of you > taking this drug battle with that? The ladies do you battle yeast infections > with the drug? I know that Kelly has the same bladder problem I have and > has said it doesn't bother hers, I am hoping for that. > > Becky Becky, I have chronic sinus infections, turned out it had nothing to do with medication but with the nosebone or septum I believe it's called. Not everything is due to reumatic causes or meds so you may look into that as well. I had x-ray's taken of my nose so that's how I know.
About the bladderproblem and yeastinfections;
I suffered bladderproblems and urinary duct problems (yes, you are allowed to LOL as I am dutch so my native language is netherlands, but still count on you to figure out what I am talking about), and always used to have antiobiotics around. I have found enough rest and sleep somehow makes it better and using special soap and only wearing cotton undies do help. When we were in Australia a couple of months ago (surprise for my aussie cousin who was getting married) trouble started again and as it was in a weekend I would have to go through a lot of trouble to find a dr to write a receipt, so I thougth it would be best to go to one of the chinese drugstores (24/7) in the redlight district, as I thought they would probably know what would be next best thing to antiobiotics. Figured they hear about that problem all the time from their customers... They gave me a bottle with tablets, made of extracts from plants, I told them it better be good, because my body cannot be fooled.
It's called, or so I believe, I'm not even sure if that's a brandname:
Urinary Tract Support.
And I must say: it did help! Even better and faster than antibiotics ever have! I can only speak for myself ofcourse. I like the idea of not having to use chemical antibiotics. Amongst other things they claim the stuff has antibiotical activities.
While travelling we did go into many other stores but there were only two other ones that sold the stuff. Before leaving, we went to the same drugstore again and purchased all of the bottles left! Left a very happy shopowner I can tell you ;-)
haven't had to use them many times since, the tablets seem to keep away the bladder and yeast problems for an acceptable while.
I don't know if they can be bought in the US, haven't seen them over here, but there's the site-address that's on the bottle:
www.ethicalnutrients.com.au
Maybe they can tell you where to buy them in the US so you could try a bottle. I used 5 tablets 4 times daily for the first two days. Also, what I really like; there's no added artificial flavouring, couloring or preservatives.
Sorry to sound so promotional, but I was so happy I found this and it was only by accident.
I am experiencing less trouble with enbrel than I did the first time (been off it for a while last year). It's just some sort of sun-allergy/eczema on my tummy and back now, big time, I have a feeling it could be the Enbrel, but I'm not sure.
Very weird it's not my arms, legs or face
Nikki
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