Medical Forum / Diseases and Disorders / Arthritis / July 2005
New Enbrel User
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Gord - 27 Jun 2005 20:31 GMT Hi, I'm a long time reader of this board and have a new question if anyone doesn't mind. I've had PA for about 4 years and have been on MTX for 3 years. Sulphasalazine didn't do anything for me. My PA has only shown up in my right foot area. All toes swollen. Pain is very manageable with one 75mg voltaren every 2-3 days. Anyway, my RD says because of the chronic inflammation still going on, Enbrel would be the next line of treatment. I would like to know, how people made out with Enbrel. Did it help ? Hurt ?
Thanks everyone Gord
Sandy Tipper - 28 Jun 2005 00:35 GMT > Hi, > I'm a long time reader of this board and have a new question if anyone [quoted text clipped - 11 lines] > Thanks everyone > Gord I have atypical RA, atypical in that it acts more like PA without the psoriasis. In 20some years I had never had a remission, and had both knees and a hip replaced, both ankles fused, etc. I always had many active joints. Then came Enbrel. Within a week I started to see results. For 3 years I have had no active joints (or nearly so), although much of the damage had been done. Although Enbrel couldn't fix the deformities, I have been relatively fantastic. If it works as well for you, which it should, you'll feel as if you got your life back. I recommended it to a neighbour who could almost not walk any more, and she had almost as dramatic an improvement, but for her it took a month or more to really feel well.
Good luck, Sandy
Alison DeLorme - 28 Jun 2005 01:23 GMT it has helped me tremendously. I have been on it since 2001 (on/off /on due to a pregnancy). I have been very happy with it. I like the single dose option better than twice a week. I find it works better. However, I will say that I'm in the process of deciding whether to switch to humira as my RD feels that the enbrel isn't doing all that it should for me. I still think she is being a bit unrealistic but I've pretty much decided to at least try it. good luck with it!
Di - 28 Jun 2005 02:56 GMT > it has helped me tremendously. I have been on it since 2001 (on/off /on due > to a pregnancy). I have been very happy with it. I like the single dose [quoted text clipped - 3 lines] > she is being a bit unrealistic but I've pretty much decided to at least try > it. good luck with it! I have also been on Enbrel since 2001, and it is a god-send. I do not walk with a cane anymore, though before, my left hip was so bad, I could hardly walk without crying sometimes. It just doesn't seem to be the answer for my heel pain, which has persisted throughout. I've asked my RD when it kicks in for my heels. He just shrugs, so I've left my heel problem up to my podiatrist.
My RD wants to switch me to Humira as soon as it's approved for PA, because I seem to go into break-through flares more frequently now. I'm afraid of the preservative in the pre-filled syringes because I find them to be excrutiating. My RD said if it's a problem, I'll go back to Enbrel. So, I'm in no hurry. I love Enbrel. It's a magic potion.
 Signature Di zinkadoodle at gmail dot com www.pbase.com/di
Alison DeLorme - 29 Jun 2005 01:54 GMT >>>I'm afraid of the preservative in the pre-filled syringes because I find them to be excrutiating. My RD said if it's a problem, I'll go back to Enbrel. So, I'm in no hurry. I love Enbrel. It's a magic potion.<<<<
Are you talking about the Humira preservative? I wonder if that's what is causing the burning in the enbrel signle dose. For me, it's a trade off. The old style enbrel caused itching and welts - but it lasted 2-3 days. The new one causes stinging (pretty intense for me. even after 30 minutes at room temp) but only lasts a minute...
glad the enbrel has helped you. My old RD was the same way, just shrugged the mild inflammation away. But this new RD wants to try to get it all....
Di - 30 Jun 2005 01:17 GMT > >>>I'm afraid of the preservative in the pre-filled syringes because I find > them to be excrutiating. My RD said if it's a problem, I'll go back to [quoted text clipped - 8 lines] > glad the enbrel has helped you. My old RD was the same way, just shrugged > the mild inflammation away. But this new RD wants to try to get it all.... I've been taking Enbrel since 2001, and I got no site reactions till only a few weeks ago. I haven't talked to my RD about it yet. But, all of a sudden, out of the blue, and for no good goddamm reason, I now get a red, itchy welt at the injection site which lasts for at least 3 days. I take it twice a week, so my welts overlap in duration. One subsiding, and a new one forming. Oh joy, isn't life grand. <g> To those of you in the know, is this anything I should be worrying about, other than the discomfort?
 Signature Di zinkadoodle at gmail dot com www.pbase.com/di
Alison DeLorme - 01 Jul 2005 04:54 GMT I would call the RD just to be sure you're not developing some wierd allergy, since you've never had this problem before. It can be very frustrating - the welts. My RD kept saying they'd go away, but they never did. Like you, with the twice a week inj., I'd be just getting over one when the new one would pop up. I often dreaded the inj, knowing what would come. I used to get intense itching and 2.5 in welts... But since switching to the single dose syringe, I've had none. It must be the different preservative.
>>>But, all of a sudden, out of the blue, and for no good goddamm reason, I >>>now get a red, itchy welt at the injection site which lasts for at least 3 days. I take it twice a week, so my welts overlap in duration. One subsiding, and a new one forming. Oh joy, isn't life grand. <g> To those of you in the know, is this anything I should be worrying about, other than the discomfort?<<<
Harvey R. Stone - 28 Jun 2005 01:25 GMT > Enbrel would be the next line of treatment. > I would like to know, how people made out with Enbrel. Did it help ? Hurt > ? > > Thanks everyone > Gord Hi Gord,,, Lots of help for me but I had RA. I wish that Char was here to talk PA with you. IMO it is harder to cotnrol than RA. Harv
Nann Bell - 30 Jun 2005 14:53 GMT HI Gord,
I have PA also. SSZ also did just nothing at all for me. NO, that's wrong. It made my ears ring. MTX helped some. We had me on Arava with it for a while (not a recommended combo due to liver risks, but I had insurance restrictions at the time). Late January we were finally able to start me on Enbrel and drop the Arava. The first improvement I noticed was in a much reduced fatigue level. Still not as good as I'd like - I still need the PM nap as well as 8 hours at night, but when I'm awake I'm able to accomplish more.
Then my inflammed ribs (costochondritis) improved *greatly*! I mean, I can actually make it through an entire church service, singing all the hymns, and still be able to talk afterwards! Hadn't been able to do that in over 3 eyars. I haven't had improvement past that point yet as I had to go off it for a month due to other illnesses. But it has helped enough that I am actually happy to be giving myself a shot once a week. (I should note that my brother is a long standing Type 1 diabetic, so I can hardly complain about one shot a week!)
The shots themselves do sting some going in. I just pause for a few seconds until that improves and then move on with it. The stinging lessens with letting the dose warm up more, but you have to find a happy balance between the stinging and not letting the medicine get too warm to be effective. Also, I've had some mild shot reactions around the 6-8 week mark, as I was warned I might. No big deal, though I do shoot up higher on my thigh with the reactions now that we're in shorts-wearing weather. Overall though, the stinging and reactions are no worse than I've had in the past with allergy injections and I definitely feel enough better to make it worthwhile! AFter waiting 3 years for good prescription insurance so I could go on Enbrel, I am really appreciating it, even though it hasn't been the total miracle for me that I'd hoped for.
 Signature Nann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare
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