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Joined: Sep 2001
Posts: 2,920
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Sep 2001
Posts: 2,920 |
Hi everyone! Haven't been around for a long time - many reasons...... Started Enbrel about a year ago and, although it's definitely helping, I'm still having very bad probs with my feet. My rheumy has given me Humira to try instead, but the (possible) side effects sound truly scary!  I just wondered if anyone else is/has been on it, as it doesn't seem to get much of a mention? Thanks. Hugs, Sue
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Joined: Mar 2007
Posts: 386
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Mar 2007
Posts: 386 |
Hi Sue,
I was on Enbrel for almost 1-1/2 years. It did wonders for my spinal issues, but little for my hands, feet & psoriatic nails.
My rheumatologist wanted me to switch for Humira for that very fact. I've been on it just under 4 months.
All the TNFs have similar risks/side effects.
The only difference in side effects I notice between the 2 is the Humira doesn't cause me to have the dull headache for a day or two after my injection like Enbrel did. But I also have a worse insomnia problem with Humira than I did with Enbrel, which I'm hoping will burn out soon.
I do have less pain in my feet on it - hands & nails are still a pretty big issue though. But I'm still holding out with a little more time it might work for my hands & nails too.
Good luck - hope it works well for you.
Janet
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Joined: Jan 2006
Posts: 327
Fourth_Degree_AS_Kicker
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Fourth_Degree_AS_Kicker
Joined: Jan 2006
Posts: 327 |
Hi Sue,
I have been on Humira for nearly 2 years. It took 4 full months for me to feel the benefits, but then it began working pretty well. I still take Voltaren twice a day (tried to stop and found I need it) and a pain med here and there.
Good luck, Jessie
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Joined: Dec 2007
Posts: 109
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Dec 2007
Posts: 109 |
I freaked out when I read side effects. But, I'd rather be able to move... so here I am and rarely log on to this site because I'm doing so well! It has been an answer to prayer. Trace
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Joined: Sep 2001
Posts: 2,920
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Sep 2001
Posts: 2,920 |
Hi Jessie,
Thanks for your reply. So pleased to hear how well Humira is working for you. Long may it last. Unfortunately I haven't been able to cut out any of the other meds I'm on since starting Enbrel, including Indocin, Naprosyn, Oxycontin and Xanax, tho it does seem to have stopped things getting any worse (?). It would be great to have better pain relief and be able to get rid of, of at least cut down, some of the other things.
Good luck and take care.
Hugs, Sue
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Joined: Sep 2001
Posts: 2,920
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Sep 2001
Posts: 2,920 |
Hi Trace, Yes - I know it was probably a dumb thing to do, reading that long list of "Possible" side effects, especially as they're so rare, but my rheum told me to read up on it......  Just wish I could be sure it wasn't going to start my jaw necrosis up again, but I guess there's no way to be completely sure of anything. Very pleased to hear how well it's working for you anyway. I would love to feel that good!  Good luck and take care. Hugs, Sue
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Joined: Sep 2001
Posts: 2,920
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Sep 2001
Posts: 2,920 |
Hi Janet, Thanks for your reply. Hope the Humira continues to help your feet, and starts working on your hands soon too. (Are you on MTX as well?) Hopefully the insomnia thing will stop eventually - that's what Enbrel did with me, so I used to take a slightly higher dose of Xanax the night of the injection and that seemed to help. From memory, I think it used to make me very tired the next day too, but it only lasted for the 1st few weeks. It's always scary whenever we have to start on a new med, I know, but I'm just extra freaked b/c of the necrotic bone thing. (It's horrendous!)I've been told by my GP that I must avoid any meds with phosphorus (?) in them, such as some of the ones used against osteoporosis, and that makes me feel even more freaked! Talk about being caught "between a rock and a hard place". My rheumy has put me on it for my psoriatic probs with my hands and feet too, so it would be really great if it helps, but at what cost in other areas???? Good luck to you too  Hugs, Sue
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Joined: Sep 2005
Posts: 128
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Sep 2005
Posts: 128 |
I just started Humira 7 injections ago. I tave it once a week. They took me off Remicade after 3 years since it became less effective. So far I am not sure how this one will work yet. I am still hopeful that it will work.
Yes, they all have some nasty side effects but the odds are still worth the help if they do what they do. The alternative doesn't seem pleasant.
I have a question to all Embrel and Humira people. I use the injector pen and twice it caused a fairly painful release and ripped the surface of my skin. Have you or has anyone had that problem?
I wish you well with the Humira and sure hope that it helps you.
Bill
If your time ain't come, not even A doctor can kill you.
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Joined: Mar 2007
Posts: 386
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Mar 2007
Posts: 386 |
No MTX for me. The first time I was on it, I don't remember having any serious side effects from it, but then it starting affecting my liver. I went off it, then my rheumy had me restart it. Not only did my liver still not like, I didn't like it either - I starting having more side effects with it. So stopped it again because of the liver. When I changed rheumies, she had me try it one more time. This time it made me deathly sick every week when I took, plus my liver enzymes shot up immediately. Just not a good drug for me. I take Plaquenil, Sulfasalazine & recently (reluctantly) went back on NSAIDs (Relafen). Is the bone necrosis more of a side effect with Humira rather than Enbrel? I really need to read through the side effects list a little better for these drugs. Sometimes I think I'm better off not looking at it too close though!  You're so right though about being between a rock & a hard place - I often say I take these drugs to fix one problem, only to have 2 more take its place it seems. Do you take MTX or any other DMARDs? Maybe your doc could try adding/increasing one of them with your Enbrel to see if that will boost the effectiveness of it for you if you haven't tried that already without the added worry of Humira side effects. Keep us posted how it goes.
Janet
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Joined: Sep 2001
Posts: 2,920
Presidential_AS_Kicker
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OP
Presidential_AS_Kicker
Joined: Sep 2001
Posts: 2,920 |
Hi Bill, Thanks for your reply and good wishes. Sorry about the trouble you've had with the Humira pen. I can't help I'm afraid, as I haven't actually started using it, but will be careful to try and avoid it! Hope you can get some help. What a pity Remicade stopped working for you. That seems to be a fairly common complaint with a lot of meds, unfortunately. I hope the Humira does the job, and that it doesn't take too long to kick in. (I've been told anything up to 12 weeks?) I've just been back to my rheumy to talk about the problems with jaw necrosis, and he thinks I should still give Humira a try, but with caution (as always). If my jaw starts acting up again I'll be stopping it!! So.....1st injection on Friday - fingers crossed! Hope it's "Good luck" to both of us!  Take care, Sue
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