RE: Flare-ups

[Guest guest]

My flares are frequently related to environmental changes, weather, etc.

I've been on Enbrel along time to the point that I have gradually reduced

the frequency of my injections over the years. When I have a flare I

usually increase the frequency of the injections until the flare subsides.

This means I may go from one injection every 2 weeks to 1 a week or from 1 a

week to twice a week depending on the severity of the flare. For me a flare

usually does not last over a month. However, it was a severe flare that got

me on Enbrel in the first place.

" Ron " <ronevans@...>

[Guest guest]

Ron:  I'm really curious about your comments on the frequency of your Enbrel

injections.  I've gone for nearly two weeks between injections by accident (kept

forgetting to do it) but my rheumy has encouraged me to go no longer than about

8 days until the mfg completes testing on this very issue.  In particular,

though, if you're doing the standard injection of 50 rather than 25 of whatever

the measure is, that's double the normal dosage.  Is this OK with your doc?  I

know all rheumys likely approach this issue differently (and mine is fairly

conservative) so I'm really seeking info on how people handle it, given my own

desire to cut back because I've been asymptomatic for months. 

 Joanna Hoelscher

[Guest guest]

Joanna: Like I said, I have been on Enbrel a long time. I went on it even

before it was approved for PA. When the demand for Enbrel went up and they

were building new factories those of us on it had to make do with what we

had. I spaced my injections out form twice a week to once a week and

eventually once every two weeks. This was years ago. I am now on a

maintenance regimen of one injection every two weeks. If I go longer than

that my finger nails start receding and such so I can't go completely off of

it and I am not in complete remission. (although I did manage 1.5 years out

of the past 7or 8 years on no meds at all, a short term remission) Every

once in a while I get stressed out, or the weather changes, or whatever

causes a flare happens and I have to increase the frequency of my

injections. I also take .5 to.25 of Klonopin daily to take the edge off

Enbrel side effects (It amps me out like drinking too much coffee). I was

what you they call a high responder to Enbrel. I got immediate relief from

a severe condition after everything else failing. My RD takes a less is

more approach. (We both worry that long term use may cause unintended

consequences like cancer or whatever.) At one time I had 9 joints disabled

in my hands. Now I only have 2 frozen joints. I have actually had frozen

joints break loose (adhesion) an heal over time so I do not think that the

infrequent use of Enbrel has hurt me or caused progression of the disease.

But as you well know, with this damn disease everyone responds differently.

I hope this helps. BTW, the only frozen joints I have now are a legacy from

cortisone injections and wasting my time and health on antibiotic therapy.

I believe that Enbrel should be the first line treatment of PA with the

onset of the first symptoms. It can cause remissions and you can reduce the

dose eventually or even go off it completely.

Ronnie E.