Enbrel Sucks!

** Originally posted by julius **

No, Enbrel does not "suck", and nor do any of the other biologics. But now that I have your attention, imo members do a diservice to fellow P sufferers when they make these broad judgments about these medications for others, esp when broadcasted in the title and then followed by their personal horror story. Pigfan and Gailandray's husband have had terrible experiences on Raptiva but so have people on Remicade (I'll take a P outbreak over lymphoma any day) and as MySon (included at end here) recently posted here on Enbrel. The point is that these biologics are a godsend even though they come with risks, and everyone reacts differently but in a broader sense has demonstrated by rigorous long term studies with thousands of patients, all the biologics work for roughly 30%-60% of people who try them. Everyone reacts differently just as we do to other medical treatments, but if you discourage P sufferers to try viable treatment options, then ultimately they lose. Just because my father died after heart surgery, I'm not going to go screaming how lousy bypass procedures are for others. Its the same thing. Talk about your experiences, catharse, whatever but don't put blanket judgments that something is a bad treatment option just because it didn't work for you (see Copernicus' findings for more about this).

Here's MySon's post, he relates is horrible experience without a judgment of the medication's potential for others:

"I have tried all psoriasis medication out there, and then to Enbrel...that was a woooz...I was hospitalize for three weeks after the third injection...my P hit me so bad that I had no use of my hands and leg with THICK RED scales on 100% of my body to a point that if I breath, it cracks and bleed that my mother says taking off the thick scales was like peeling off a tile...yeah that think... During hospitalization, I was put back on cyclos and finally saw some skin...then started on remicade regiment...and try to wean me off cyclos. I have been on remicade since Feb 04, after three weeks of hospitalization from Enbrel..."

Last edited by myson : 08-29-2004 at 08:17 AM.

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** Originally posted by SoCal77 **

You know I kind of agree. When people tell other people don't go on Enbrel, MTX, Humira etc because I had a bad reaction, hospitalized, etc.. then that person, of course, will be freaked out and probably not try the drug.

When I was researching Enbrel, there were a few horror stories and I made the choice to go ahead with it. Now after 2 months my results are AMAZING and I am glad that I tried it.

Don't get me wrong, I think its also really important for people to post both their successes AND failures. I guess everyones body is different, and that is a choice that you the person must make, not listen to someone say "Don't take this drug" implying that everyone will end up with the same outcome they did.

Does that make sense? It does in my brain anyway :confused:

:D

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** Originally posted by nla **

I agree with you both. It is a very personal decision that each person has to make. You need to weigh the good against the bad. That said, just because someone wants to title his/her post with "_____ sucks" does not necessarily frighten other folks away from taking that particular drug or tying that particular treatment. It's merely another way for each of us to read all the personal experiences of other folks, both good and bad. Folks just write things in the heat of the moment and at that moment, yes that is how they are feeling about the particular drug and the results it gave. We also have many posts that state "Enbrel (or whatever) is a miracle". Surely, we don't ALL expect to experience the same miracle :) I notice even Julius stated that he/she would take an outbreak of P any day over Remicade. Others with different types and severity of P and PA might disagree. Julius' son's post was well put and informative. It actually scared the hell out of me without even having a subject line about Enbrel! Yet, I am thankful he posted his horrible experience for us all to read. Not everybody has the same writing style so I think we should all cut some slack in that department.

We all come together here to inform and support one another, good and bad and vent. Let's keep our anger and frustration directed at the true enemy: P and PA! It's the one thing upon which we can ALL agree. P and PA both suck!

Nancy

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** Originally posted by chaimFL **

I'm not in agreement here. Let's first start with the statistics of success. Going with an even higher figure of let's say 75% success, you have to first understand how clinical results measure success.

The overall number is related to the total number of people who say any positive results even if as little as 1%. A very small percent of people see 75% improvement or better. Now don't get me wrong, I would be happy to see 75% improvement myself, but being 30% covered or more minus 75% of that is still no walk in the park (in my eyes, but I am a self conscious individual).

Regarding the "negative" posts, as bad as it is that people have to see negative results the open report is neccessary to have a balanced opion. If we paint glorious pictures all aroud, then the one person who bases a decision to use a biologic medication on the opinion of the members here that sees a serious infection or worse is going to have a lot of questions.

One last thing, whether a drug "sucks" or is wonderful is totally subjective. If enbrel works for you then it's great, but if you have a negative reaction then it "sucks". The same right that one has to praise a drug another has to bash it. This all creates the balanced equation that makes these boards a wonderful place to find information....the good, bad, and ugly of everything P related.

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** Originally posted by infinity **

Im actually in agreement with you ChaimFL Its best to hear both sides and in their own words, we are intelligent enough to then make a decision based on what we think about each........

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** Originally posted by vhammer **

My appraoch towards medications is tinted by my Mothers experience. Or to be precise the experience of the many RA patients she's known. Because of her severe rheumatoid arthritis she's been in a wheelchair for 51 years, she's still active and about and fiercly independent at 81. Every few years some new medication or surgery comes down the pike. Same praises same "success stories" same "good science". For purely superstitious reasons she always refused. Her friends however, usually younger, all with less severe rheumatoid arthritis often accepted. My mother has been very socialy active, literally running rheumatic social clubs in our town. She has know many dozens of people with serious to severe ra and indirectly so have I. These people came to our house regularly. These people (the ones who embraced the mircale cure of the time) are now all dead. Nothing the rheums say is ever any different. Don't use the old medicines they don't work too well and are dangerous. Use this new stuff it's much better and safer too. My mother has heard this for 50 years. She's seen dozens of her healthier friends develop serious illnesses after many years on these meds and die. No exceptions.

Now I personally am highly science oriented. I have 3 masters degrees. I have one simple request: Show me the science. No, I don't mean these little trials funded by the pharmaceutical industry that show amazing results and say 'side-effects unknown'. I also have no use for specialists who simply repeat the pharma marketing and can't quote or refer me to *any* medical publication to back up their claims. I mean show me the science that this stuff isn't going to be more trouble than it's worth. Isn't going to make me dangerously ill to cure a discomfort I could live with. I spent weeks searching for any *relevant* science like this for Embrel at the time (3 years ago just as it was becoming available for p). There were none. I begged derms and rheums if they knew of any. They were not helpfull. Now if *you* know of any please tell me because I wouldn't mind taking Embrel if there was some science behind my potential survival and otherwise good health.

And here's the other odd thing. I've searched for comprehensive studies on the effects of MTX and some of the other old meds perscribed to RA patients over the last 50 years. It strikes me as bizarre that no-one I can find has studied why it is that severe RA patients who have taken these RA Meds are all dead after a certain amount time. Is no-one bothering to connect the dots?

Combine with this the rather disturbing behavior of specialists. I can turn my p and off like a blow-torch with diet (actually I can only turn it on quickly, turning it off takes a more prolonged effort). But they don't think it's relevant. They don't care why. How can this be science?

So my hypothesis formed on all this information is this. There is probably some good science and scientists out there. But every specialist I've met is more in tune with corporate marketing then with the science. They appear to be running a business selling their most expensive product. And they don't appear to care one iota about my health or even my survival. I am still searching for the specialist I'm not ashamed of. No luck.

I am even more withering and scathing of the alternative network. Removing science from the equation is not the answer. Science isn't the problem. It's science employed to serve corperate profits rather than science that's used to help us live healthier and help our medical problems.

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** Originally posted by chaimFL **

Show me the science. No, I don't mean these little trials funded by the pharmaceutical industry that show amazing results and say 'side-effects unknown'.

I have to disagree with you on this comment. Clinical studies are not opinion surveys and I've never seen one that says "side effects unknown". Now, I could care less if you take a medication or not. It's simply your perogative, and I have no reason to push someone one way or another in their own decision making process.

Generally, the side effects listed during clinical trials are far beyond the actual side effects because they list each and every incident that occurs while on the medication...even if the medication was unrelated. If I am in a humira study and develop a headache ,that is for hypothetical reasons, 100% unrelated to humira (in other words I would have gotten it whether or not I was in the study) it will still be listed as a side effect.

We know why enbrel is good and we know why it is bad, and yes there are still uncertains, but most of the science is there and readily available if you are sincere in your quest to know it. Heck, read the package insert!

Pharmaceuticals are highly regulated by the FDA and there is no funny business when it comes to the package insert or the list of potential side effects. The funny business comes from the drug company reps, but let's face it, that's the nature of any sales driven industry.

It strikes me as bizarre that no-one I can find has studied why it is that severe RA patients who have taken these RA Meds are all dead after a certain amount time. Is no-one bothering to connect the dots?

I'm not sure what this means either, I assume I am just misreading it, but doesn't everyone die after a certain amount of time?

Most of us know the down sides to these medications, but believe it or not there are people who are willing to take the risk for an immediate improvment in their daily activities.

It boils down to a risk vs. benefit analysis. For some the risk is not worth it and for others it is, but that is a person choice.

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** Originally posted by Kiesner **

As a person that has also suffered with P for many years, i am 20 years old. I feel that reguardless of which medication i try next since most of them haven't worked, i would like to hear both sides of the drug. The doctors generally tell you all of the wonderful things about it, what about the horror stories? Im a full time student and have a job and am extremely involved at my university. I dont have time to have the possiblity of hospitalization so maybe thats a treatment i would try when my life is less hectic. This message board was created so people could post their opinions as well as look for support. Please dont discourage people from expressing themselves. Its hard enough to find support when you have P. undefined

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** Originally posted by mdgirl **

Hi everyone,

I think it is good to know both sides. Good or bad results. We should be able to decide if we choose to take that treatment or not. I have had bad side effects from treatments, but would never tell someone else not to use it. That drug just wasn't for me, but it might be great for the next person.

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** Originally posted by RichJ **

hello all
i pretty much agree with what was said. the only thing i think is that we don't want to use words that will make some not to try a med that there derm has given them to try. or scrae them for trying some thing that will help them. i hope you can under stand me. lol all

have a good day all

richard

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** Originally posted by vhammer **

I have to disagree with you on this comment. Clinical studies are not opinion surveys and I've never seen one that says "side effects unknown". .

Death is not an opinion. But I did make a mistake and you are correct: they do list anything that happened to the people during the trial. What I meant was '*long term* side effects unknown'. For me this is far more relevant than its effectiveness. I'd try a 5% effective treatment if it had no risk whatsoever.

Generally, the side effects listed during clinical trials are far beyond the actual side effects because they list each and every incident that occurs while on the medication...even if the medication was unrelated. If I am in a humira study and develop a headache ,that is for hypothetical reasons, 100% unrelated to humira (in other words I would have gotten it whether or not I was in the study) it will still be listed as a side effect.

Sure. But it works the other way as well. If you develop liver cancer a year later and drop dead it won't make into the study either. And what I'm telling you is that in the past if you stayed on the 'miracle Meds' you would die within the decade.

We know why enbrel is good and we know why it is bad,
but most of the science is there and readily available if you are sincere in your quest to know it. Heck, read the package insert!
.

The package insert may have changed. When I read the disclaimer 3 years ago it mentioned something along the lines of: 'Embrel is a good idea if MTX doesn't work'. I took this to mean: If you were crazy or desperate enough to take MTX then Embrel is OK for you too. What I clearly needed to hear was something more like: 'Embrel is much safer than MTX' with some proof that this is really the case.

Pharmaceuticals are highly regulated by the FDA and there is no funny business when it comes to the package insert or the list of potential side effects.
.

Correct me if I'm wrong: isn't one of the side effects 'sudden death' or something like that? And is there a requirement to see what these drugs do after being taken for 5 years?

doesn't everyone die after a certain amount of time?.

My conjecture is: regardless of your age, take the (strong) meds and you'll be dead in 10 years. Now hopefully things are not so bad now as then....but I see no reason why this would be the case seeing the lack of studies I found on this (let me know if you know of any)

Most of us know the down sides to these medications, It boils down to a risk vs. benefit analysis. For some the risk is not worth it and for others it is, but that is a person choice.

This is where we *really* disagree. Granted I may be a fanatical stubborn cynic.... But I will change if I see *science* that proves to me what the long term side effects are. You're making major changes in your body with these meds and all the previous meds that did this were deadly. Now like all my mothers deceased young friends you can decide to believe the marketing and believe the doctor think that this drug really lives up to the promises they've always made and take your chances. But it's an act of trust on your part. Not an informed scientifically based decision. If it is I then *please* show me the study that makes you think this is nowhere near as dangerous as all the other p&ra systemic meds produced over the last 50 years.

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** Originally posted by chaimFL **

It's not a matter of showing you, but a matter of me feeling comfortable with the drugs safety and you not feeling comfortable. Obviously that's the way the world turns, some like and some dislike. I can read the technical data that tells me what the drug is doing, not knowing what that will mean for me 50 years down the road, and feel 100% comfortable.

Long term side effects are a mild concern, but I always look at it as the reason to opt out, not that one is really needed. Enbrel has been in use for at least 10 years and nothing to report of yet, so when does the watchful eye stop? 15 years, 25 years, 50 years, 100 years?

This may sound surprising, but death is the least of the side effects that I am concerned with. After all, if you have children is there not a potential sided effect of sudden death from peanuts the very first time you give it to them? How do we know a child has a deadly anaphylactic reaction to peanuts (or other things) other than to give it to them? Obviously that death can be prevented with proper care, but it's not always prevented.

Reactions and allergies happen with everything that is on the earth, so cetain things need to be taken out of the equation.

Here is a hypothetical for everyone:
Let's say you are confined to a wheel chair from PA and have at least 40% body coverage from P. A medication comes on the market that gaurentees you to be pain and lesion free for as long as you are on the medication, but it also gaurentees that it will take 8 years away from your life after the very first shot. The 8 years will never grow, but it's 8 years gone whether you take 1 shot of 100 shots. What would you choose?

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** Originally posted by npf_import-82999 **

Well Chaim, one very important question to consider is the age of the person meeting that quandary. If you are below the age of say, 55, perhaps the quality of life is worth the sacrifice of 8 years. Having been in a wheelchair for a short time, having chronic pain and having been once covered at least about 40%, I know what my choice would be.

It's not going to happen, but I do think that we need to be responsible in how we explain our experiences with different treatments. Some people are very easily influenced by what others relate. I think that what is said should be descriptive, can be emotional if need be, but not put in such a way that is sounds as if anyone is giving medical advice to another.

Many posts have helped me to make decisions with regards to my treatment choices offered to me by my physician. But my decisions were made through a combination of physician info, self education & research and word of mouth personal experiences; not merely one of the resources.

I think it's a good idea for the readers to be occasionally reminded of the drawbacks of the way some posts are written and to keep an open mind when absorbing the information we gather here.

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** Originally posted by misales **

Well first of all, you need to be at a certain level to be considered for Enbrel, and for that matter, a number of the psoriasis meds. Severe psoriasis is a bugger and in my experience a lot of the meds suck. Ask your derm if they're surprised if you failed one or more. I bet they wouldn't be surprised.

So here's my suck list...cyclosporin, topical steroids (most), tazorac, uvbnb (non-agressive), herbal remedie of some form or another, atkins (diet worked, p didn't), enbrel, soriatane (hi trig's).

here's my worked list...(uvbnb-agressive), npf message board, heavy otc mositurization and baths, university derms (twice), my derm (with a good working relationship), second opinions (3X), anti depressant Lexapro, phsychiatrist, our local support group/network, elidel, and a lot of dedication, posts, email, chatting, and a trip to san diego.

I think a lot of us with severe P understand this and if we don't we will at some point. Now I do not have a diagnosis of PA and Sue Lowe in our support group does. I don't think that my worked list would help her arthritis much so my therapy would probably be on her suck list. Sue just had an infection while on enbrel, but she came out of it great and I am 100% behind her efforts to follow up with an ER visit and staying on top of her docs. She's back on and as far as I know doing well. So, she knows best with the professional treatment that she receives and the drugs she has access to.

I think that part of this program is to understand that some treatments will suck and hopefully one or more will work.

Those of us with P do need to understand that and if you don't you most likely will learn it eventually first hand on your own.

It's like learning to ride a bike again, we're all going to have our falls. Just gotta get back on and try again.

I think an honest opinion is the best policy. Just a note, I have a lightbox treatment this afternoon and it will cost me an hour out of my day. This sucks! but I'm going to go there. gotta go....time for a bath.

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** Originally posted by SumScalyGuy **

I would do that 8-year thing with no hesitation. At least the years I have left, I could be free from this awful disease. It affects my quality of life so much that it is seriously worth that to me. If this were an actual option, I wouldn't be posting telling people to do it or run from it. Every treatment we do is our own personal choice. No one is standing over us injecting us or dumping pills down our throats against our will. I would trade that 8 years knowing that the time I did have left could be enjoyed and not be constantly worried about my skin, depressed, embarassed, and avoiding activities that interest me. Why would I care about the last 8 years if the entire rest of my life is going to be torture?

I know this is getting away from the whole "scientific" aspect, but if that 8-year drug comes out tomorrow, I will be first in line.

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** Originally posted by sparklingfire **

Chaim - I'd take the shot...

As you know, I take Raptiva. If I remember correctly this is a medication that you choose to stay away from. And that's fine, because it's your choice.

I agree that the medicines are here for us to make a choice. Nobody is forcing us to take the meds. It's a matter of how severly your life is being affected and at what risk you are willing to take for relief. Personally, NO, I don't want to die. But I can't LIVE my life worrying about it and I certainly have no QAULITY of life for me or my family without some relief from my P. Raptiva has been the only med that has worked for me and so I will continue to take it.

People create threads in this and other forums to express their opinion. They are available for everyone to read and consider. However, each person must also remember that they will not necessarily have the same experience that someone else has with a particular med. That's what's so confusing about this disease.

Thanks for listening!!!

Jen :)

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** Originally posted by vhammer **

But really all you are all saying is that past experience (of others) doesn't matter... and neither does science. (The science behind what the longer term risk is you're taking). So really you're not offering me anything more than the pharma marketing. This is fine... I guess I was just hoping that someone had found some information I wasn't able to.

I'm sorry if I sound alarmist but it sucks to have seen so many people die for false hopes... espescially if they were really just fabrications to boost profits from the medical industry. Of course I can't speak to your personal experience. Maybe you are right to be that desperate. But I would ask you to consider the health and abilities you *do* have. And resist being tempted to think that things can't be any worse for you. Dying from cancer or failing internal organs is a totally different ball game.

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** Originally posted by Ironchef **

Julius,
I would only ask this question. Is it not ok for the masses to protest or dissuade board members here from using Soriatane? It is a fact that Soriatane has some very, very bad side effects. If I was a woman of child bearing aptitude reading a post about someone saying how bad Soriatane is, I wouldn't want that poster to be told to refrain from his criticisms.

Pros and cons are valuble here. I've benefited nicely from both and I encourage both. I even give both though I'm careful about my criticisms because some on these boards are very, very sensitive.

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** Originally posted by mehere **

Remicade has some nasty side affects also as seen in the recent warning released last week. Your doc may not have the time to sit down and explain the ramifications of a new medicine to you - We patients have to take more responsibility for our healthcare. You have the right to demand that your doctor tell you the side affects and the reason he is prescribing something - is it because the LOCAL drug rep gave him/her a nice dinner and sporting tickets or is it because he feels you need it. Wake up - doctor's sometimes have a financial incentive from drug companies to prescribe drugs.

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** Originally posted by Allie **

My Grandfather had heart failure several years ago, and ended up being the 19th person Globally to receive a certain treatment. This treatment caused him to take an experiemental drug.... Guess what, because of this treatment he lived another 6 years. It has now become a more regular course of treatment for people with as much heart damage as my Grandfather had from his two previous heart attacks. (Both occurring by age 46, but he lived until he was 80) Did all go smoothly in this treatment? Heck NO!!! They had to play around and eventually go back in and remove the first device for a more improved device.... Oh well, it allowed him to survive longer than with out it.

For a lot of the new P/PA drug options, we are the ones taking this chance at the unknown. I am sorry for those you have watched pass on because of their experimenting with new drugs, but I thank them for risking it. That is why this is such a personal decision. I am willing to take that risk for 2 reasons..... 1) A chance at a better life today..... 2) A chance at a better life for my family & friends tomorrow.

I feel horribly for those who have had bad reactions to the new treatment, and I don't believe there was enough information out there to make the fully educated decision. I also feel, (for the most part) this lack of information has nothing to do with the drug companies pocket books, but more to do with time.... I know it takes a long time to get a drug thru the FDA, but in reality we don't know the full impact of the drug for YEARS!!! Without people willing to forge ahead, we may never fully reach our potential for treatments. Heck, if those people did not exsist year ago, we may never have discovered America....

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** Originally posted by chaimFL **

Vhammer,

No one is going to try and convince you to take anything as that is your job to persuade or dissuade yourself based on how you percieve the facts.

The thing is that you are clearly overstating the death rate in relation to these medications. People aren't just dropping dead left and right from these drugs. I could be wrong, but it seems that you attribute anyone's death that has tried, let's say, methotrexate to the drug itself and that it's impossible in your eyes that they may have died of other causes.

I would not take methotrexate myself unless things got REAL bad (and my P is no walk in the park), but I do recognize that the drug has been around a long long time and considered safe with proper precautions. To be on this type of drug it is necessary to have weekly blood work and the occational liver biopsy. If those things are not being done then the drug has a higher chance of doing real damage. That damage can be stopped if due care is taken.

The same goes for cyclosporine and soriatane. It's all about how cautious you are.

So, biologics are new to treat psoriasis, but don't fool yourself into thinking that biologics as a whole are new because that is not the case. We use biologics to treat an aray of autoimmune diseases and psoriasis was not the first.

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