Re: Biologics...Weighing the Risks

[Guest guest]

I think each RA medication is different and I don’t think

having a reaction to one means that others will cause the same problems.

I recognize your concern but I also don’t like the prospects of permanent

joint damage and a wheelchair. Humira targets the TNF part of the immune

system and so do Enbrel and Remicade. However, each of these works in a

different way so each has its unique way of functioning. I think with the

experience you had I can understand avoiding Humira but I don’t think you

need to avoid other RA medications, even the others that also target the TNF.

Another thing to consider is a completely different way of

addressing your RA. One treatment method that is not popular with

most rheumatologists is antibiotic therapy. This uses generic medications

that are widely used for acne and other ailments so much is known about side

effects. There have been a few small-scale clinical trials that show these

antibiotics to be about as effective as other RA medications but there have not

been the large, long clinical trials that are used for testing new

medications. The clinical trials are very expensive and the drug

companies only do them when they expect a monopoly position on the new drug for

long enough to pay for the trials. With antibiotics for RA there will

never be a monopoly position because they are already generic. Also there

is much misinformation about their applicability to established RA because the

first two clinical trials only evaluated mild, early-onset RA as a selection

criterion for participating in the trials. The trials properly concluded

that antibiotics were effective for mild, early-onset RA but this is often

reported as they are effective ONLY for mild, early-onset RA. Later

trials did not use this selection criterion, and some have been limited to

patients for whom other RA treatments had failed. I’m not on

antibiotic therapy because I’m well controlled with Methotrexate and

Remicade but if these fail me I plan to go to antibiotics next. The link

below is to an advocacy site for antibiotics so it might be biased but I do

think that most of the information is quite good. I have additional

information about it if you are interested. God bless.

Antibiotic Therapy - Road Back Foundation

http://www.roadback.org

From: Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of i_live_in_slippers

Sent: Thursday, June 25, 2009 1:09 PM

Rheumatoid Arthritis

Subject: Biologics...Weighing the Risks

I would like as many opinions as I can get on

this, Im sorry it's a bit long.

I was on Humira for almost 2yrs. Lived pain free, in a remission type state for

most of the time. It was wonderful.

Last year I took a job at an elementary school. I was sick non stop the entire

fall/winter. REALLY sick. Every little cold turned into a major illness. My

blood counts became so bad that I was sent to a blood specialist/oncologist.

They thought I might have had a leukemia or felty syndrome. Was terrifying. My

family dr. blamed the Humira for wiping my system out too much and warned me to

never take it again. That I was that 1% they warn about on the commercials.

After stopping the Humira and doing long coarse of meds I recovered to normal

and havnen't been sick since. Did have to quit the job though.

My reumatologist however disagrees slightly. She thinks it'd be fine to take

it, or another bilogic again. That it was probably a combo of the jobs enviornment

and the Humira, and coincidence. Maybe to just take it at a lower / less

frequent rate. She'd like me to go back on one soon because my disease has been

out of control since last year...and I'm showing new erosion on my xrays. She

mentioned taking HUmira once monthy instead of twice, or using a monthly iv

drug, or something that is done by iv once every 7mo or so. The thig is, Im

scared to death of these meds now. I haven't been sick one single time since

stopping the Humira and letting my body recover. I'm afraid it will happen

again but my disease is really driving me nuts.

What do I do? Take the drugs and risk terrible side effects that can kill me.

Or just let myself suffer and cripple?

Thanks

[Guest guest]

While researching findings about LDN I found an interesting article that mentioned the theory that proposes our immune systems might not be in reverse or hyperactive but literally spent.  Basically our immune systems are wiped out to begin with. I am sure adding MTX doesnt help.  I am right now battling a severe chest congestion that also after a few days became nasal.  Usually onset of a cold for me is sore throat, sneezing, then nasal congestion that travels down to the chest but its like a cold in reverse.  I think the biologic may be to blame here.  Regardless, if our immune systems are wiped out anyway, I wonder why a biologic halts progression of the disease when nothing else will.  What I have read about LDN suggests it promotes killer cells which intefere with joint damage.  I have more reading to do about this but it looks promising.  I just wish there were trials in the US for it.  I think if you havent tried remicade yet, you might consider it.  I stay away from people as much as possible.  I got RA symptoms after being a nanny full time when the kids were constantly sick, and I was always sick with them.  My immune system couldnt cope or recover.  I think that is got wiped out or overwhelmed as your emailed suggested and put you into a severe tailspin.  They say you cant live in a bubble but I am close to doing that.  This is the first bad congestion infection I have had in a year so I dont know whether I contracted it or its just the TNF binding agent causing my lungs to fill up.  The same thing happened with the Avian Flu.  Good Luck.  Deborah

On Thu, Jun 25, 2009 at 4:08 PM, i_live_in_slippers <bart.tracy@...> wrote:

I would like as many opinions as I can get on this, Im sorry it's a bit long.I was on Humira for almost 2yrs. Lived pain free, in a remission type state for most of the time. It was wonderful. Last year I took a job at an elementary school. I was sick non stop the entire fall/winter. REALLY sick. Every little cold turned into a major illness. My blood counts became so bad that I was sent to a blood specialist/oncologist. They thought I might have had a leukemia or felty syndrome. Was terrifying. My family dr. blamed the Humira for wiping my system out too much and warned me to never take it again. That I was that 1% they warn about on the commercials. After stopping the Humira and doing long coarse of meds I recovered to normal and havnen't been sick since. Did have to quit the job though.

My reumatologist however disagrees slightly. She thinks it'd be fine to take it, or another bilogic again. That it was probably a combo of the jobs enviornment and the Humira, and coincidence. Maybe to just take it at a lower / less frequent rate. She'd like me to go back on one soon because my disease has been out of control since last year...and I'm showing new erosion on my xrays. She mentioned taking HUmira once monthy instead of twice, or using a monthly iv drug, or something that is done by iv once every 7mo or so. The thig is, Im scared to death of these meds now. I haven't been sick one single time since stopping the Humira and letting my body recover. I'm afraid it will happen again but my disease is really driving me nuts.

What do I do? Take the drugs and risk terrible side effects that can kill me. Or just let myself suffer and cripple?Thanks

[Guest guest]

Your question is a crucial one that every person with RA needs to make -- weighing the risks vs. benefits of all of our drugs, not just the biologics. I was dx'd with RA almost 10 years ago when I was 22. Remicade & Enbrel were barely approved for a year so the long term risks vs. benefits were really unknown. I was on Enbrel for a month and switched to Remicade in early 2000. It has been my miracle drug. I would not alive today without it. When I started it, my pain was so bad I was willing to risk the side effects and I still am. The biologics do lower your immunity (especially when taken with MTX) so your infections are not a surprise. My healthy friends that teach are sick all year round. I can only imagine what my body would do! When I was diagnosed, I was about to embark on my dream of becoming

a high school English teacher. When I was put on MTX, I was told to choose -- my health or my dream. I chose my health. I gave up my dream in order to be as healthy as I can be. I don't regret my choice. I miss teaching. I think I would have made a good teacher. I'll never know now. I may get my Master's and teach college someday. I'm only 31 so I have plenty of time. I crux of the situation is this: it sucks that you have RA. You need to make the choice YOU can live with. That may be suffering with the effects of your RA or it may be taking the risk and accepting it. The major risks (TB, lymphoma, etc.) are extremely rare. Take care,Steph in VA~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I would like as many opinions as I can get on this, Im sorry it's a bit long.

I was on Humira for almost 2yrs. Lived pain free, in a remission type state for most of the time. It was wonderful. Last year I took a job at an elementary school. I was sick non stop the entire fall/winter. REALLY sick. Every little cold turned into a major illness. My blood counts became so bad that I was sent to a blood specialist/oncologist. They thought I might have had a leukemia or felty syndrome. Was terrifying. My family dr. blamed the Humira for wiping my system out too much and warned me to never take it again. That I was that 1% they warn about on the commercials. After stopping the Humira and doing long coarse of meds I recovered to normal and havnen't been sick since. Did have to quit the job though.

My reumatologist however disagrees slightly. She thinks it'd be fine to take it, or another bilogic again. That it was probably a combo of the jobs enviornment and the Humira, and coincidence. Maybe to just take it at a lower / less frequent rate. She'd like me to go back on one soon because my disease has been out of control since last year...and I'm showing new erosion on my xrays. She mentioned taking HUmira once monthy instead of twice, or using a monthly iv drug, or something that is done by iv once every 7mo or so. The thig is, Im scared to death of these meds now. I haven't been sick one single time since stopping the Humira and letting my body recover. I'm afraid it will happen again but my disease is really driving me nuts.

What do I do? Take the drugs and risk terrible side effects that can kill me. Or just let myself suffer and cripple?

Thanks