Fear of ENBREL....I have drug here but can't make myself use it...why am I so afraid of it?

I am wondering if I’m the only person out here who has an almost unnatural fear of ENBREL.

Let me explain:
I have never really been given a definite diagnosis between three Rheum. and a Dermatologist, it has been almost ten years now…

One tells me it’s " Inflammatory Osteoarthritis " ( Hello…the pain from inflammation is what has been the worst all along), then, once my hands started getting deformed, they began calling it " Pseuronegative RA" and now PsA because I now present with a few minor skin changes and other auto-immune disorders that go along with it…

Anyway…
I’ve been approved and received the starter dose of ENBREL
BUT…

Then I can’t make myself do this drug…

It’s really bordering on PHOBIA. and it’s NOT about shots either…it’s that I fear what could " happen" with this drug ( or drugs like it)…

I think it’s because the disclaimer/ warnings of side effects are so scary…
I live alone with my dogs…and really don’t have anyone to help me with this…

So…

Here I am…after 3 years ( two different tries at this drug,) …not on it…

I HAVE it in my refrigerator now but it’s from last winter…Not going to use that now so I have to ask doctor if it’s still good and maybe some other person can use it ( insurance paid )

WHAT IS WRONG WITH ME?

I will preface this by saying …
Two summers ago, I was hospitalized with a mysterious infection in a saliva gland…it was bad…I was
in for 6 days in IV antibiotics…
And this had nothing to do with me being on ENBREL at the time.

I’m afraid this could happen again…
And with being on any of those biologics…
Isn’t that one of the problems?

Seriously…

I know the doctors have thrown up their hands with me…
They say they can’t help me because I’m " uncooperative"

What has worked to keep my inflammation under control and allow me to function is that I take a tiny dose of PREDNISONE 2 mg per day…
But the Rheum. is fighting this…she wants me on ENBREL

HELP, PLEASE

Hi Liz,
I just took my first dose of MTX last night. I was afraid too but, my Dr. reassured me by telling me that side effects are listed because patients have complained that these symptoms have happened while on the drug but only a minimal percentage has it happened to and not necessarily from the drug but they have to list them anyway. You shouldn’t have more then “common side effects”, which are usually tolerable and minimal.
What everyone posts on here are personal experiences and everyone reacts differently.
It’s your call, good luck and keep us posted!!

Read the side effects from long term use of predi THAT should scare you and those are certainties. Okay I am a statistician at the root of things, We design models for a number of things, in my academic world including drugs etc. do statistical analysis of results of assorted studies including setting up and analyzing the beta testing of most Microsoft business/technical software.

You are getting way too much information from the internet (I suppose including this) of the three classes of drugs used to treat ANY form of arthritis: Corticosteroids,DMRDS, NSAIDS, and Biologicals. The biologicals have by far the fewest long term permanent or serious side effects. The worst are the steroids (what you are taking) followed by NSAIDS.


My guess is much of the misinformation about treatment from these diseases comes from the same groups of people we come in contact with every day, you know the ones who don't seem to think you are sick, or say oh yeah my Grandma had some arthritis.... You know I heard if you quit eating tomatoes and take a spoonful of Cayanne pepper after rubbing the sore spots with Castor Oil, it gets better... But he real misinformation comes from people selling Cayenne pepper pills and castor oil. They go after the NEW drugs because its a little harder to spread fear about something like Plaqunel or sulfazine or even MTX that has been around for 50 year or so.

There are at least 100 BIG companies (and hundreds of smaller ones) out there who's sole job is to plant posts, reviews, opinions etc. around the internet. Then there are companies like one of my old college roomates is find those posts and plant counter posts and "likes" on facebook and build organic search data for U tube. (its no accident when a commercial video goes viral....)

We have had a couple show up here, the founders take care of them really quick.

So talk to your Doc or Pharmacist some one who has had 12 years of education to to do what they do as opposed to an opinion, or self educated researcher, holistic practitioner, ND, etc. Don't trust statistics with out a two tailed regression (and a bunch more) A good example is the "cancer fear" from biologics. Yup a pretty good share of folks taking Enbrel get cancer. Only problem is they actually get it LESS than people who don't take Enbrel. Granted the occurence of a particular type of cancer is higher than rest of the population, but people on Enbrel get cancer the same or less often than everyone else. There is NO evidence that its enbrel and not PsA....


If you want to take your Enbrel but are just a little scared, heres what I would do: Take two field trips.

Trip One: An assisted living facility (a bigger one) Arrive ONE hour before dinner. Watch the residents arrive from their rooms or day room, some pushed in chairs by the aids, some shuffling along, some pushing a walker, etc. Note the hands, humps in the back, the ones bent-over, the ones who can only drag their feet etc, Also note they aren't senile. they will be talking about dinner massing at the door waiting to be seated. They may talk about the 1st graders that came over to sing for them, and Bingo with the Ladies group coming on Thursday, and what happened on days of our Lives today.

Trip Two: go to a higher end Senior Citizens complex. TWO hours before dinner. Watch the residents arrive fro the golf course, shopping, the bridge room, aerobics, Wii Club etc rushing to their apartments to get changed and back down stairs for wine before dinner. Listen to their conversation. Don't miss the innuendo or blue pill jokes, Note the group planning for the symphony or the other planning on seeing the stone 50th anniversary tour of the stones

Realize both groups are the same age, no less mentally able. BUT a huge difference in attitude and physical ability. One group has been overtaken by their arthritis one has not.

Now go home pull out that vial of Enbrel and decide which group you want to be in. If you want to be in group one put it back in the fridge. Group 2: use it.

1 Like

Liz,


1) You're not crazy, those box labels are scary!

2) Those box labels are written by lawyers and NOT by doctors. If you want real information, go to the prescribing guide. Also go to the National Psoriasis Foundation at psoriasis.org and look up their webcasts. For instance, there's a warning about invasive fungal infection. Come to find out, there has not been a single case in any controlled experiment. Conclusion: people on Enbrel and people not on Enbrel can get fungal infections sometimes, but there's not reason to assume they're related.

3) Statistics can be miss-interpreted, but they do not lie. Ebrel is proving to be extremely safe. I'm an actuary, I know how to read statistics. Actually it seems that people with Psoriasis get no sicker on Enbrel than off of Enbrel, and they may get less sick.

4) I've been using Enbrel for almost a year and I LOVE it. I feel great, no PsA whatsoever, and my P is almost gone from it. My health has been excellent. I've had one cold and I sometimes get itchy at the injection site.

5) Do you know what your blood's SED rate is and your cytokene levels? If they're abnormal, be worried. Mine were out of whack, and I didn't like it. On Enbrel, my blood is normal.

Conclusion: I'm much more confident of my health on Enbrel than I would be without the Enbrel.

Liz-

I agree with you. I have been taking Enbrel for about a year. Although I am not thrilled about giving myself shots each week I feel much better than before taking it. The only side effect is slow healing when I get a cut or scrap. Otherwise I have had no problems. Quite honestly I fear insurance companies making us pay out of pocket for this drug and then I am not sure I could afford it. Until that time, I will take it. I am also on Methotrexate once a week. I don't feel fabulous every day but I have more good days than bad. before both drugs every day was a challenge to get out of bed. Now I can go a few weeks and feel 'normal' then I may have a bad streak.

In summary - do not fear this drug. ALL drugs have a plethora of potential side effects. It is good to be smart about what you put in your body but Enbrel does have its good results-at least for me. I really do not want to go back to feeling horrible all the time.

regards..

sonna

I haven't noticed slow healing. I've only noticed getting a bit itchy for a day at the injection site.

Well…my labs are not abnormal,
This is part of the puzzle…
I think if they were really off then I’d feel like I had to take the drug…

It honestly is FEAR of the side effects and potential for infection, I guess…

My joints in my fingers are already badly deformed…
They got like that very quickly before anyone could even decide what was wrong with me…
Back then the doctors kept saying it was Osteoarthritis and nothing could be done…
I went through a lot of anger and depression about the loss of use of function…My hands are really bad…( stiffness is part of it but range of motion is gone now)

My worry and the big reason I’d consider taking the ENBREL is because it might stop the progression…

But without elevated Labs it’s hard to measure anything so I’m kind of a test case…
Hit or miss …

They kind of told me to " try it for 6 months"
Is that long enough?

I forgot to add that I have FIBROMYALGIA …so fatigue and widespread body aches are part of that…

Right now though, i think depression is what I’m having the worst time with…

I can see how common it seems to be.
I live alone so it’s harder, I think.
Thanks

Liz
I want you to know your not alone. My doc wanted me to go on humira. I did try one dosage. I was terrified of the side effects and that fear caused me to have such anxiety I couldn’t tell if I had Side effects or an anxiety attack. Never Did another dose. I could kick myself. I should have had the courage to try. I am now on MTX and am determined to get through 3 months. I want relief. One thing I have learned from the great people here is fear the disease not the meds. I do fear the disease. I hate how painful and swollen my fingers are. I hate how fatigued I feel. I am lucky now I only have joint involvement in my hands. But I pray everyday I don’t get it anywhere else. I read the stories on here and I know I could be so much worse. But if there is any hope out there with these meds to prevent that for me. I am at least going to try. If MTX doesn’t give me relief I will try Enbrel or whatever else my doc recc. I am crazy with fear and anxiety over these meds. But more fearful of the disease. Good luck and remember fear the disease not the meds.

Liz,

I'm glad that your blood is normal. Maybe the blood markers don't correlate so well with severity. My blood was off, but the MTX and Enbrel corrected it. Now I'm just on Enbrel.

Don't worry so much about the risk of infection. Look at the prescribing guide, I think section 6.1 and you'll see charts of the infection rate of people with RA on Enbrel, MTX and placebo, and a chart of people with PsO on Enbrel and placebo.

The RA patients showed a small increase in infection while on Enbrel vs. placebo, and a big increase in infection while on MTX. The PsO patients showed NO increase in their infection rate when they were on Enbrel.


Don't fear the medicine, Enbrel is one of the safest drugs out there, probably as safe as Advil. I would fear the disease though. It sounds like it's already crippling you :(. I think you can have finger joints replaced now though, at least I hope so. :)

Nobody makes it off this earth alive. Something WILL kill you, me and everyone else, but it's very unlikely to be related to Enbrel. Actually if you become crippled your inactivity will be dangerous to your health.

One more thing to consider, each dose of Enbrel is only 50mg. Over the course of a year it would be a total of 2.5 grams. Over the course of 20 years it will be 50 grams. 50 grams is just under 2 ounces.

I'm with you all the way here lamb, this is the most frustrating thing we hear from nearly every new person. Fear of the biologics. They are the most promising drug I have ever taken for anything. I have no ulcer like I did from the Sulfasalazine, no blisters inside and outside my mouth, or the nausea like from the Methotrexate. I just feel 'better', not like I want to run a marathon, but better, and I look forward to Friday at 5:00 because I can feel it wear off by then, and I know that it is going to give me a good Saturday, Sunday, Monday, Tuesday, Wednesday. By Thursday, I am beginning to feel the 'drag' of them wearing off and my body 'thumps' more. By Friday, I am tired and hurting even more.

Regardless of the type of Arthritis you have, these Doctors think it is going to help you, and so do I. I am 13 shots in, I asked if I could double the dose and take it twice a week, but am at maximum dose.

I am taking this to SLOW the progression of the Arthritis, to stay off a walker, out of a wheelchair, away from knee replacements, stay OUT of a nursing home, because I can no longer take care of myself.

These are the medicines of the future, they pinpoint where they need to go in your body right down to the very cell, bypassing most of the systems where we have side effects. How amazing is that???

I am going to take a biologic over a chemical med ANY day, and I hope that I always can!

Good luck to you with your choice, for me the choice is easy, I choose my ENBREL, it has made me better!

SK



tntlamb said:

Read the side effects from long term use of predi THAT should scare you and those are certainties. Okay I am a statistician at the root of things, We design models for a number of things, in my academic world including drugs etc. do statistical analysis of results of assorted studies including setting up and analyzing the beta testing of most Microsoft business/technical software.

You are getting way too much information from the internet (I suppose including this) of the three classes of drugs used to treat ANY form of arthritis: Corticosteroids,DMRDS, NSAIDS, and Biologicals. The biologicals have by far the fewest long term permanent or serious side effects. The worst are the steroids (what you are taking) followed by NSAIDS.


My guess is much of the misinformation about treatment from these diseases comes from the same groups of people we come in contact with every day, you know the ones who don't seem to think you are sick, or say oh yeah my Grandma had some arthritis.... You know I heard if you quit eating tomatoes and take a spoonful of Cayanne pepper after rubbing the sore spots with Castor Oil, it gets better... But he real misinformation comes from people selling Cayenne pepper pills and castor oil. They go after the NEW drugs because its a little harder to spread fear about something like Plaqunel or sulfazine or even MTX that has been around for 50 year or so.

There are at least 100 BIG companies (and hundreds of smaller ones) out there who's sole job is to plant posts, reviews, opinions etc. around the internet. Then there are companies like one of my old college roomates is find those posts and plant counter posts and "likes" on facebook and build organic search data for U tube. (its no accident when a commercial video goes viral....)

We have had a couple show up here, the founders take care of them really quick.

So talk to your Doc or Pharmacist some one who has had 12 years of education to to do what they do as opposed to an opinion, or self educated researcher, holistic practitioner, ND, etc. Don't trust statistics with out a two tailed regression (and a bunch more) A good example is the "cancer fear" from biologics. Yup a pretty good share of folks taking Enbrel get cancer. Only problem is they actually get it LESS than people who don't take Enbrel. Granted the occurence of a particular type of cancer is higher than rest of the population, but people on Enbrel get cancer the same or less often than everyone else. There is NO evidence that its enbrel and not PsA....


If you want to take your Enbrel but are just a little scared, heres what I would do: Take two field trips.

Trip One: An assisted living facility (a bigger one) Arrive ONE hour before dinner. Watch the residents arrive from their rooms or day room, some pushed in chairs by the aids, some shuffling along, some pushing a walker, etc. Note the hands, humps in the back, the ones bent-over, the ones who can only drag their feet etc, Also note they aren't senile. they will be talking about dinner massing at the door waiting to be seated. They may talk about the 1st graders that came over to sing for them, and Bingo with the Ladies group coming on Thursday, and what happened on days of our Lives today.

Trip Two: go to a higher end Senior Citizens complex. TWO hours before dinner. Watch the residents arrive fro the golf course, shopping, the bridge room, aerobics, Wii Club etc rushing to their apartments to get changed and back down stairs for wine before dinner. Listen to their conversation. Don't miss the innuendo or blue pill jokes, Note the group planning for the symphony or the other planning on seeing the stone 50th anniversary tour of the stones

Realize both groups are the same age, no less mentally able. BUT a huge difference in attitude and physical ability. One group has been overtaken by their arthritis one has not.

Now go home pull out that vial of Enbrel and decide which group you want to be in. If you want to be in group one put it back in the fridge. Group 2: use it.

I’m about to go get a months supply, $2,000 worth, fully paid, to see how it works for me. It’s going to be an interesting saving regime if I need to continue it fully paid, but I’ve seen my father slowly crippled by arthritis (probably PsA, from when he was a young man), and there’s almost nothing I wouldn’t do to avoid the same future.

The pred will be helping you feel better, but there’s no good evidence a dose that low will be slowing the damage at all.

I’m scared too, but I’ll be taking the Enbrel.

I sat for 4 hours with my first dose of methotrexate in my hand, with tears streaming down my face thinking "should I really be doing this?" I felt I was basically taking poison. But its all about personal choice...........its your body and you choose if you wish to take the medication thats prescribed for you or not. As long as you are making an informed choice then its your right to take or not to take. We can't predict if our bodies will tolerate the medication or not, but my rheumatology dept have always kept a good eye on me by regular testing and I feel so much better a year on from my first MTX dose even now the dose is more than doubled.................Good luck and have the strength to do what is right for you, whatever that may be x

I know it is scary, but the MTX is actually more toxic then the Enbrel. Remember it only lasts in our system for a week - it isn’t very likely that you are going to get some severe infection out of the blue which takes its toll in just 1 week. The data on Enbrel is outstanding. I take it. I went through the same questions you have - arm yourself with knowledge. The spondilitis.org site in the members area has an outstanding presentation comparing and contrasting all of the available treatments and shows the real no kidding data for each drug. Enbrel comes out on top and is a weekly injection- that is why I picked it. Some of the other drugs stay in your system for 2 weeks (humera) or a month (remicade), so your ability to fight infection is lowered for a longer period of time. Having said that, they are safe too, but if you want to try out a bio with the least risk Enbrel leaves your body the quickest. If you get sick - call the doc and delay your shot a couple days. I have done that myself. I never take any drug without researching it first. So use knowledge to calm your fear!

I just wanted to let you know that your fear is natural. I was shaking for 2 days before my Remicade infusion on Monday and had to get a new prescription of Xanax. I got all the information I could about it and still was scared. I faced my fear though and it was the best thing I ever did. I have had a complete change already in 2 days. It's amazing and if something can change your life for the better please give it a try :) Best of luck

Liz, I know how scary it all seems, but it really is probably safe for you. You're more likely to have a reaction to the latex in the syringe or the autoinjector pen than from the drug itself.

Let me tell you a little of my personal story...

I learned that I have psoriasis approx 20 years ago. Insurance for me was on again/off again because of my changing employers, so I couldn't always get treatments for it. Then I found a clinic where they participate in clinical studies, and I signed up for one that was testing the efficacy of concommittal MTX and Enbrel, placebo-controlled (MTX), double blind. So, I started using Enbrel for the first time before it was even released to the general public for treatment of psoriasis.

Then, about 3 or 4 years ago, I was told by my cardiologist that it looked like the swelling in my knuckles was psoriatic arthritis. I was seeing a dermatologist at that time, and I asked her to put me on Enbrel again, since it had been like a miracle for me in the study. The point is, at least for ME, the benefits FAR outweigh any potential problems I might have from using a biologic treatment.

And, furthermore, here are some specific thoughts I had when reading your post:

  • they began calling it " Pseuronegative RA"

That word is "SEROnegative" and it means that you don't have the rheumatoid factor in your blood. That's what makes it harder to diagnose. With that factor, you probably have rheumatoid arthritis. Or, you might have one or two of the spondyloarthritides. Without it, you could have one of many different things, including spondyloarthritis (spondylitis, including psoriatic arthritis among some other types).

  • It's really bordering on PHOBIA. and it's NOT about shots either..it's that I fear what could " happen" with this drug ( or drugs like it)...

Are you sure about this? Try testing your theory by having someone else give you the shot. Either someone at your doctor's office (trained personnel) or maybe have a friend or family member learn how to do it and give you the injection. Do you always read about every injection you get from a doctor or hospital or other health-care provider? I don't. I get shots from time to time and I usually just let them do it.

  • I HAVE it in my refrigerator now but it's from last winter...Not going to use that now so I have to ask doctor if it's still good and maybe some other person can use it ( insurance paid )

Why not use it if it's still within the expiration date and if it still looks normal (no cloudiness or "floaters.")? Have a doctor or nurse look at it and determine whether or not it's safe. Nobody is going to take it from you and give it to someone else. Also, if it IS bad, let them dispose of it. Please do NOT send it into the sewer system or toss it with your other needles in a "sharps" container.

  • I will preface this by saying ...
    Two summers ago, I was hospitalized with a mysterious infection in a saliva gland...it was bad..I was
    in for 6 days in IV antibiotics..
    And this had nothing to do with me being on ENBREL at the time.

I'm confused. Were you on Enbrel at the time?

  • I take a tiny dose of PREDNISONE 2 mg per day..
    But the Rheum. is fighting this...she wants me on ENBREL

If the rheum doesn't want you on it, who is prescribing it for you? And remember, just as others have mentioned in their replies, Predni is pretty nasty, too.

  • I know the doctors have thrown up their hands with me...
    They say they can't help me because I'm " uncooperative"

If they really, seriously have "given up", then you need to find a new doctor. They're EVERYWHERE!

  • Well...my labs are not abnormal, This is part of the puzzle... I think if they were really off then I'd feel like I had to take the drug...
    It honestly is FEAR of the side effects and potential for infection, I guess...
    My joints in my fingers are already badly deformed.. They got like that very quickly before anyone could even decide what was wrong with me.. Back then the doctors kept saying it was Osteoarthritis and nothing could be done... I went through a lot of anger and depression about the loss of use of function..My hands are really bad..( stiffness is part of it but range of motion is gone now)
    My worry and the big reason I'd consider taking the ENBREL is because it might stop the progression..
    But without elevated Labs it's hard to measure anything so I'm kind of a test case... Hit or miss ..
    They kind of told me to " try it for 6 months" Is that long enough?
    I forgot to add that I have FIBROMYALGIA ...so fatigue and widespread body aches are part of that...
    Right now though, i think depression is what I'm having the worst time with...
    I can see how common it seems to be. I live alone so it's harder, I think. Thanks

Me again. Hi.

"Normal" labs? That's a good thing! If they were ABnormal, you would NOT be allowed to take the biologics like Enbrel.

Your finger joints are already "badly deformed." DO NOT WAIT ANY LONGER TO DO EVERYTHING YOU CAN TO TREAT THIS! I don't mean to overly alarm you, but to alarm you just the right amount. You CAN see what it has done to your fingers. You CAN'T see what it's doing to your spine, sacro-illiac joints, and possibly many other joints throughout your body.

And, most importantly, maybe you "live alone" at your house, but here, you're never alone. I'm here at 4:00 AM central daylight time in Houston, TX. because I can't sleep tonight (cardiologist scheduled tests in the morning. I'm nervous). You're NEVER ALONE! (Kind of scary, huh?) BOO!! :)

Enbel is a targetted drug. It effects precisely what it needs to in order to stop stop the psoriatic arthritis. Since it's effects are so limited, it's side effects (besides injection site reaction) are close to non-existent.

Hi Liz,
I’m the same boat as you. My doctor wants to put on a biologic but I don’t want to because of all the side effects. I see a natural medice doctor and he treats me with teas and a plant based anti inflammatory which has worked wonders for me. He is in Encitas, CA. I strongly recomend it. Good Luck.

Your labs will likely always be normal PSA doesn’t often show up in blood work. Mine are normal too- the proof was the X-rays of my SI joints.

Hi Liz,

Just wondering how you are doing, if you have made a decision? If there is something else that we can tell you? I have the x-rays of SI joints, knee, ankle, ball of foot, and going for wrist x-rays. Oh, and was told that my spinal stenosis was CAUSED by PsA.

The stenosis is in the tail bone area. It is closing up the spinal column and curling up the tail bone! http://www.mayoclinic.com/health/spinal-stenosis/DS00515/

I hope that you are well, and that the info that we have given you has been helpful.

SK