posted
Have you been in treatment for Lyme for a long time? Enbrel is a pretty serious step. It causes immune suppression, which can make the Lyme disease go rampant. I pray you won't have trouble with this.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
I have an RA friend who's been on it for about 6 years. Be prepared for your WBC to steadily drop over time (and the neutrophil class is the ones most affected).
If you're seeing an RA Dr. - WHy don't you try the Minocycline/Hydroxychloroquine first? That is approved for RA- and it 's much safer if you you have is really Lyme.
Just stay away from methotrexate.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I would get an opinion from a LLMD ASAP. This is a gray area that can be dicey.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Barb, isn't that dangerous for the WBC to drop? I spoke with a woman recently who had lyme 9 years ago, bad, and was treated with abx for 2 years when finally properly diagnosed. Then she "developed" ra and is on two drugs one is bad for her liver and one lowers her wbc and they have to monitor it and when it gets below 3, lighten the dose of the drug.
3! that already sounds dangerous.
I tried to tell her--I think I posted this over on I&I--that she still has lyme, and if she's functioning on these drugs okay but longterm this is courting disaster. Don't you think?
Posts: 2276 | From united states | Registered: Jun 2004
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posted
The dr. who put me on this is a past president of ILADS.
I was on the mino/plaquenil treatment for about a year and it wasn't strong enough.
My RA sx are bad.
I have been in treatment for 4 years. I just switched to this dr. My old LLMD said that we kinda hit a wall with treatment and I was refered elsewhere.
So I'm pretty sure they know what they are talking about.
Still worried though. I read all the side effects and its pretty scary.
Im now on Ketek and Enbrel. Also an array of other things such as difulcan (which id like to stop taking), Nystatin, zantac, depakote, metadate, and lunesta.
-------------------- "Walk by Faith, Not by Sight" Posts: 149 | From New City, NY USA | Registered: Mar 2004
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
There was a recent eureka alert study that cannabis (yeah marijuana) ameliorated r.a. and it clearly isn't immune suppressive.
I worry about folks on enbrel longterm
Posts: 2276 | From united states | Registered: Jun 2004
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quote:Originally posted by bpeck: I have an RA friend who's been on it for about 6 years. Be prepared for your WBC to steadily drop over time (and the neutrophil class is the ones most affected).
If you're seeing an RA Dr. - WHy don't you try the Minocycline/Hydroxychloroquine first? That is approved for RA- and it 's much safer if you you have is really Lyme.
Just stay away from methotrexate.
Barb
I know a lyme patient who took Enbrel and almost died from an ordinary infection. She is no longer taking it. Scared her to death!
posted
I took Enbel for 8 months. I was bitten by a tick during that time. It was my downfall. Very many neuro symptoms. Still haven't recovered.
Posts: 146 | From New Jersey | Registered: Jun 2005
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posted
Enbrel was also my downfall - took my whole immune system down and I can not recover.
But every body is different so its so hard to say.
Personally, a chronic lyme sufferer for many years, went on enbrel by a llmd who wanted to get the arthritis under control before IV abx, and i've never recuperated (2 1/2 years ago).
I wish you luck - I know it isn't easy.
Posts: 799 | From home | Registered: Sep 2004
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