WARNING - Enbrel caused me cancer

** Originally posted by Kiki223 **

I want to share my story with everyone to increase awareness about Enbrel. Many will swear that Enbrel is their miracle drug and it was the answer to their prayers. For those people, I am truly happy that they have found their answer. For me, the story goes a little differently...

I recently had a liver resection operation during which they removed my entire right liver. This half of my liver held 5 tumors, the largest one measuring approximately 7 cm in diameter. My surgery was conducted at Memorial Slooan Kettering Cancer Center in Manhattan (one of the leading cancer centers in the world) A team of pathologist, surgeons, and oncologists worked on my case and concluded I have a low grade case of leiomyosarcoma caused by recent immunosuppresants (Enbrel).

Prior to this, last January, I was hospitalized with PCP pneumonia and CMV virus. I was in the hospital for 31 days, during which I had a lung biopsy and a liver biopsy. This was also concluded to be cause by Enbrel. It had supressed my immune system so severely, that I was suseptible to almost every infection possible.

Lastly, prior to this, and the first indication of side effects was my entire lower right leg went numb overnight. Once again, this also was concluded to be caused by Enbrel. Over a year later, it is still to this day, numb is certain areas.

The scary part is I only took Enbrel for 5 weeks. However, a year and a half later I am still suffering side effects.

I have learned through my 25 years of psoriasis treatments that for me personally, the side effects are more often than not worse than the flare up. I have made the personal decision to no longer treat my psoriasis the traditional way. In place, I treat it with mental therapy. My psoriasis is directly affected by stress. Over the past 2 and a half years, I have received mental health therapy. I have learned ways to prevent stress from building and ways to control stress when it occurs. This has been the healthiest and most effective treatment yet for my psoriasis and I can honestly say that I am comfortable living with my psoriasis.

I hope this has built awareness regarding Enbrel and side effects in general. My wish is for everyone to find what works for them and be comfortable with your life.

Sincerely,
Karen in NY :o

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** Originally posted by MichaelaCFP **

Thanks for sharing your message with the board Karen. My major contradictions came from Methotrexate and I have similar strong feelings for those people considering the drug as their are numerous proven side effects (and side effects which were not listed that I ended up getting.)

I have recently started Enbrel and I am Happy to say that I am having much better success with this as opposed to any systemic medication that I ever tried.

Anyway, I am glad that you found your personal solution with Mental Health. Many years ago I "was plain stressed out over everything," also. I made the necessary life changes to eliminate the stress altogether and now have a much happier life away from the stressors.

By the way, my best friend (of 16 years,) was so impressed with my quality of life (irrespective of having P) down here - they sold their house up in D.C. and headed to Raleigh, as well. They just settled on a house less than a mile from mine.

Anyway, glad you shared your message.

Michael

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** Originally posted by GitOverIt **

Hi Karen,
what a sad story that has happened to you....and doubly sad that all we try to do is heal this darn disease....glad you are having results with mental therapy.....if you need any health hints for the skin, join us in the alternative and complementary section of the boards.......we have some good ideas and healthy ways of battling these problems........I'm glad you are doing better.

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** Originally posted by grannyfranny **

Karen,,,,I'm sorry this happened to you. I had bad side affects from Enbrel also. Not as bad as what you have, but enough to scare me. I will not take any more meds. that compromise my immune system.

Come over to the Complementary & Alternative Medicine, and read how Sally cleared. Several people are getting better. Maybe you will find something there that will help you.

I hope you get better from all this soon.

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** Originally posted by nesielheum **

Hello Kiki,
I am so sorry to hear of your recent medical problems. I hope that your current mental therapy has a positive effect on your PS. Lord knows after what you have been through you could use some positive results.
Karen "ouchyk" posed the question regarding MTX usage which would be much more suspect as a catalyst for what you described, but your warning regarding Enbrel is appreciated, and needs to be taken seriously by all. We hear so much good news regarding Enbrel it can become too easy to ignore the potential side effects. The NPF offers quite a bit of valuable info about this drug here <CENTER>>>>http://www.psoriasis.org/treatment/psoriasis/biologics/enbrel.php<<<
and if we scroll down there is a rather large section that describes common, rare, and dangerous side effects. The following quote is from the webpage listed above:

Serious infections, including some fatalities, have been reported with the use of Enbrel. The infections often occurred in patients using other medications that suppress the immune system, like methotrexate. Serious infections are rare in patients taking Enbrel alone.

Thanks for sharing your story.

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** Originally posted by Patchsigns **

Karen, that's just horrific!!

My wish is for you to have optimum health for the rest of your life... however direction you may decide!! I've been on MTX on a low-dosage for the last 6 months and have experienced minor side effects. But, for me, the positive effects, right now, far out-weigh anything that I've experienced.

However, it's always in the back of my mind, that I want to get off of this drug.

Be well. Know that you are loved...

Blessings,
Joe

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** Originally posted by mdgirl **

Hi Karen in NY,

I'm glad you shared your story with us. I have been on Raptiva, Enbrel, Amevive and MTX. I have had side effects bad enough where I have had to discontinue use of all of them. For me, they help me so much at first that I didn't care about the side effects that they could cause. I actually cleared for short periods of time on a couple of them. I am presently on Humira, which I'm sure have side effects also, but I have had p for 42 years. I just like to be clear.

You take care and keep us posted. I hope what you are trying will work for you.

Diane

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** Originally posted by LoriASoCal **

I'm hoping for the best for you. We're you on mtx and enbrel together, or just enbrel? I'm curious as I've been on combination therapy with enbrel and mtx and now also remicade and mtx. Are you going to have to have chemotherapy or radiation? Or was the resection enough. I'm sorry for asking these questions. I've been on immunosuppressing drugs for years now and always think of that ticking clock. I won't be stopping unless something serious forces me to though.

Best wishes for a speedy recovery and happiness and health to follow.

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** Originally posted by slowe **

Karen, I'll pray for your quick recovery. I had a bad experience when I was on Enbrel but nowhere near what you're going through. I was on Enbrel for 6 months and then I landed in the ER with a massive kidney infection (both kidneys were infected) and my liver and pancreas (sp?) were also affected. The ER docs told my husband that I was about 24-48 hours away from death, that's how serious the infection was.

I was told that the Enbrel didn't cause the infection but because it had lowered my immune system so much that it made the infection that much worse. I was also diagnosed in May as being borderline positive for Lupus and my rheumy told me she thinks the Enbrel caused that as well. Needless to say, I've been terrified of going back on any of those types of meds and am now trying the "alternative" route.

Like I said, I'll pray for your recovery and I hope and pray that you don't have anymore health problems.

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** Originally posted by Photochick66 **

Karen,
I'm sorry all those things happend cuz of enbrel, i had never heard of those things hapening before. i wish you the best with recovering quickly, my prayers and good thoughts are with you. i hope things stop comming up cuz of enbrel, and that is scary that you were only on it for 5 weeks. good luck, and keep us updated on how ur doing. ttyl.
x0x
Nemo

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** Originally posted by MikeK **

Oh, Karen! I'm so very sorry to hear about all you've been through. My thoughts and prayers are with you. I hope that you have a complete and speedy recovery.

Mike

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** Originally posted by JSimantov **

Dear Karen: am very sorry to hear of what you are going through. Hopefully you will recover very quickly and maybe like the others said go to the alternative treatments, and keep doing the lowering of stress and that does cause flareups . I've had p for as long as I can remember and now Im a granny of a 2 yr old.

will say prayers for you to be well.
keep getting better and better!!

Joyce :)

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** Originally posted by misales **

I kept getting sick on ebrel too ending in Pleurisy and infection of the lung lining or something like that. very painful for sure. I have not had any side effects that I know of, i've been of E for just about 2 years now.

I have read some information on a particular board regarding individuals presenting with a different type of cancer. I think it's way to preliminary however, it will take time to find out the long term effects. I suppose it's like any other drug we use. Works great for some and not so well for others.

I hope that everything works out OK for you.

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** Originally posted by GitOverIt **

Karen I'm curious has the psoriasis subsided, gone away completely, or just through therapy helped you in being able to accept it and live with it as is....also how extensive is the P if you don't mind my asking?
There MUST be different triggers for P .....I just don't feel stress is one of mine.......I'm not a stressful type, nor do I have stress in my life....when I was younger yes! but then I didn't have P....... I think mine came from allergy to foods but that is my personal opinion.....for me at least....one of these days we'll get the answers to the causes of P and then a cure.

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** Originally posted by JKNY **

Karen, Your story has affected people here deeply i am sure. Please promise to keep in touch and let us know how you are doing.

Recently, I decided that I would not treat psoriasis with any big time immunosuppresents. There are so many possble dangers to walking around immunosuppressed (flus, cancer, bacteria, etc) that I now believe i would resort to such treatment only if my P was so bad that I had to be hospitalized or if I had crippling PA.


Lately, I have been thinking about the poster a year or so ago who was saying P is bad but thank God it's not cancer or other terminable illness because you know what-Thank God P is not terminal so I can be around to see my 8 and 6 year old grow up. Nothing else matters more to me.I don't think being immunosuppressed is worth it unless your P is absolutely ruining your life in which case it may very well be worth it. But is P ruining my life? Only that my career as a male supermodel is totally out the window and that i have to get up each night to apply ice. Mostly I feel embarrassed. Mostly I am scared of people staring or that they will run away-for that I should compromise my immune system?

Maybe we need to learn to live with the cosmetic aspects of this disease until a more appropriate treatment comes around. Maybe it's us. Maybe we should all get toether on Oct 29th and show the world our elbows-PROUDLY!

Hold a P march!!!

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** Originally posted by bratsareus **

JKNY, Thank you for putting it all into perspective. You are so right. I've been going back and forth trying to decide whether to go the enbrel path. I want you to know after reading your post, I feel sure now that I really dont want to risk using it. Thank you so much.
Patty

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** Originally posted by misales **

At the point I was in and that was without a PA dx to boot. I don't know what joint problem I was having but I was having one that the rhuem could not detect for sure.

Anyway, I was to the point that I needed to do something so I did it. I guess you need to try this stuff and keep watch. I think the longer you have P and live with it and treat it the better you get to know what is best for yourself.

I don't blame anyone for trying this stuff, or any of the systemics, just be on the lookout for problems or indications that you are having effects from the drug.

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** Originally posted by RichJ **

hi karen,
sorry to here that. i hope all works out for you. i wish you the best.

try and have a good night all

richard

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** Originally posted by ARL **

kiki,,,my prayers are with you and hopefully you'll have a speedy recovery... I already had a liver problem and my liver specialist was dead against me even thinking about Enbrel,,,which I wasn't,,,i'm sure by now you did enough research as to know what and what not to do to aggravate your liver,,, the good news is your liver is the only organ that rejuvinates itself, and thank goodness you caught this in time... I'm sure you'll be ok,,,,keep a positive outlook... The alternatives site has info that can be helpful and not harm your liver. Good Luck.

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** Originally posted by PJLeary **

Hi kiki,

First, I am sincerely sorry for your situation, regardless of the cause. I am sure that your Drs, some of the best, are correct in that suppression of the immune system with medications like biologics, can have some devastating side effects for a small pecentage of patients. It sounds as though you were in the unluckiest of the groups , but it also sounds as though you have taken positive and effective steps to put your health back in order and gain control of your body.

I could not agree with you more, as a long time severe psoriasis patient, that treating the whole person, including the mental and emotional issues is critical to making the most of the treatments available. As a memeber of this forum for many years, as well as others, I have seen first hand so many stories of the folks who ignore one part and rely on treatig another only to have their approach backfire at some level. That is one of the saddest situations, too.

I would like to point out, once again, as you did in your post, that treatment risks vesus efficacy is a fine line many of us need to walk every day. Since each individual is different, their treatments will vary as well. One of the wonderful aspects of this site is the opportunity to share in an open forum all treatment options and experiences. Thank you for sharing yours.

I wish you the best of continued health.

Regards,

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** Originally posted by slowe **

BUMP -I think that everyone should read this so they can see how serious the potential side effects can be.

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