Prescription skin cancer cream Aldara has horrific side effects, say users

Full story: NewsTarget.com

Elaine Hollingsworth put Aldara on her nose thinking that it was the "benign salve" that her dermatologist made it out to be; instead, it was the beginning of her nightmare.
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2,021 - 2,040 of 2,141 Comments Last updated Wednesday Aug 20
Mandi

Parramatta, Australia

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#2083
Oct 21, 2013
 
oops…few typos! Sorry!! Pls read as "if she doesn't find some soon….she won't make it. I truly have wanted to give up so many times over 12 years….sat there willing myself to go on….all the reasons in the world to keep going….a beautiful husband and family, who all cared for me and cherished me…but the dark anger of pain was just too much and I couldn't cope another minuet with it….but somehow, I did keep going, because I also had a great Dr.
The other crazy Typo from above was….." the Drs Tracey has seen have no idea of the level of pain that Tracey is in and did NOT give her enough pain relief…."

I only know this because my own GP knows the level of pain I live with because he is in tune with me. He has seen me pass out due to the pain, even tho I have a pain patch on, and other regular pain meds. But they just aren't enough at times. Other dr's can't believe that I live with 9/10 of pain and can talk to them. They will argue with me and tell me that I don't understand the pain scale.
Being a registered nurse, I do understand the pain scale…they don't understand the pain I live with until they see me drop over the edge!
Scott

Searcy, AR

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#2084
Oct 29, 2013
 
I was in great health as of October 2012, a perfectly pain-free 32 year old guy, but did contract a GW. I was given Imiquimod to use and used it for 16 weeks at the end of 2012. Unfortunately, in the 12th week, my dermatologist removed one of them, which left a slightly open wound, but told me to continue the Imiquimod. I did and finished the 15th week right before Christmas. In the first week of January, 2013, I started to experience sever pain in my jaw and both my knees, every day, all day. MRI's showed "sever arthritic changes". I had no arthritis (or I should say no arthritis that I knew of, as I was completely pain-free prior to using Imiquimod). Since that point, I have had deterioration and bad arthritic pain not only in my jaw and both knees, but the daily arthritic pain has also spread to my right hip, left groin, and right foot. Whereas I was a healthy 32 year old guy, I'm now a 33 year old that feels like I'm 80. I know it's because the Imiquimod got in my bloodstream and caused systemic issues. It's the only logical explanation. I now see a Rhematologist and he has ruled out infections, etc. He says this resembles RA or "spondelosis" (not sure of the spelling), but refuses to believe it was caused by the Imiquimod as it "is supposed to stay localized to the area of application". I had a second Rhematologist say that perhaps the Imiquimod activated an underlying auto-immune issue that was laying dormant, but she can't say for sure. Anyhow, I now take two prescription NSAIDS each day, which helps and makes me functional for work and other activities ... but I still live with pain each day and would rather not take pills ... but life without the two pills each day is horrible. Anyways, that's my story. I wouldn't recommend risking this medication. I've been suffering for 10 months now with spontaneous autoimmune disease that affects my joints and tendons ... whereas I had no issues at all before using it. My doc and Rhematologist can't fix it, as of right now. Still holding out hope. Cheers!
Michele

Cape Town, South Africa

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#2085
Oct 29, 2013
 
Scott wrote:
I was in great health as of October 2012, a perfectly pain-free 32 year old guy, but did contract a GW. I was given Imiquimod to use and used it for 16 weeks at the end of 2012. Unfortunately, in the 12th week, my dermatologist removed one of them, which left a slightly open wound, but told me to continue the Imiquimod. I did and finished the 15th week right before Christmas. In the first week of January, 2013, I started to experience sever pain in my jaw and both my knees, every day, all day. MRI's showed "sever arthritic changes". I had no arthritis (or I should say no arthritis that I knew of, as I was completely pain-free prior to using Imiquimod). Since that point, I have had deterioration and bad arthritic pain not only in my jaw and both knees, but the daily arthritic pain has also spread to my right hip, left groin, and right foot. Whereas I was a healthy 32 year old guy, I'm now a 33 year old that feels like I'm 80. I know it's because the Imiquimod got in my bloodstream and caused systemic issues. It's the only logical explanation. I now see a Rhematologist and he has ruled out infections, etc. He says this resembles RA or "spondelosis" (not sure of the spelling), but refuses to believe it was caused by the Imiquimod as it "is supposed to stay localized to the area of application". I had a second Rhematologist say that perhaps the Imiquimod activated an underlying auto-immune issue that was laying dormant, but she can't say for sure. Anyhow, I now take two prescription NSAIDS each day, which helps and makes me functional for work and other activities ... but I still live with pain

each day and would rather not take pills ... but life without the two pills each day is horrible. Anyways, that's my
story. I wouldn't recommend risking this medication. I've been suffering for 10 months now with spontaneous
autoimmune disease that affects my joints and tendons ... whereas I had no issues at all before using it. My
doc and Rhematologist can't fix it, as of right now. Still holding out hope. Cheers!
Sorry to hear that Scott that sounds completely right to me. Doctors in denial and not wanting to know. This shit can give you a number of auto immune deceases amongst other shit. Look at the web site Aldara and lawsuits. Spoke to that lawyer myself and he said that imiquimod is one of THE most dangerous drugs on the market. Doctors don't know how to treat Aldara toxicity and don't want to. They are not even willing to read the research on it too shocking. I hope you start feeling better soon xx
lisa

Dunkirk, NY

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#2086
Oct 30, 2013
 
Scott , Aldara is absolutely the culprit. You will probably never get a doctor to confirm this and even if they do they will not know how to treat, as there is no correcting it. Im a 5 year victim now. In my experience my symptoms have calmed down and I have gotten use to others. Consider yourself lucky as things could have been much worse. Anyone reading these posts who have the knowledge now of the dangers of this drug, and continue to use it, or give it a try....thinking we surely all just used it incorrectly....think again. Aldara is just plain dangerous and the FDA knows it and does not care.
Lisa

Tinley Park, IL

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#2087
Oct 31, 2013
 
I really wish I had never gone to the doctor. I was diagnosed with BCC, which the doctor said "maybe" 20 years down the road could have caused problems. He tells me this post-imiquimod. 7 months post-treatment, I now am slurring my words. The doctor is testing me because he believes I have sjogren's syndrome and also possibly lupus. I've had parotitis, I wake up every day in horrible muscle and nerve pain. My hair is falling out and I have bald spots on my head. I can't think straight and my job is now in jeopardy between taking time off for doctors' appointments and living in a perpetual fog. I know what I want to say most days, but I can't seem to figure out what the words are and once I figure the words out, its hard for people to understand them because my speech is slurred. I'm broke, in pain and live in a constant state of anxiety nowadays. I really wish I had never heard of imiquimod. Don't get me wrong, I have quite a few other things going on in my life causing the kind of stress no one should have to go through, and the doctor said it all 'could' be stress, but seriously, I was healthy and happy pre-imiquimod. Does anyone ever feel better after treatment?
Michele

Cape Town, South Africa

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#2088
Oct 31, 2013
 
Lisa wrote:
I really wish I had never gone to the doctor. I was diagnosed with BCC, which the doctor said "maybe" 20 years down the road could have caused problems. He tells me this post-imiquimod. 7 months post-treatment, I now am slurring my words. The doctor is testing me because he believes I have sjogren's syndrome and also possibly lupus. I've had parotitis, I wake up every day in horrible muscle and nerve pain. My hair is falling out and I have bald spots on my head. I can't think straight and my job is now in jeopardy between taking time off for doctors' appointments and living in a perpetual fog. I know what I want to say most days, but I can't seem to figure out what the words are and once I figure the words out, its hard for people to understand them because my speech is slurred. I'm broke, in pain and live in a constant state of anxiety nowadays. I really wish I had never heard of imiquimod. Don't get me wrong, I have quite a few other things going on in my life causing the kind of stress no one should have to go through, and the doctor said it all 'could' be stress, but seriously, I was healthy and happy pre-imiquimod. Does anyone ever feel better after treatment?
Lisa you know that it is all crap. Stress we all have and don't land up with all these horrible illnesses. So sorry darling it also seems that you are getting worse. This is so criminal, no words can't believe this is all going on. Xxxx and hugs
CJB

Johannesburg, South Africa

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#2089
Nov 3, 2013
 

Judged:

1

This blog is to say the least, quite interesting. The varied opinions from all these self proclaimed uneducated experts is very scary. Problem is, not a single educated medical opinion was yet posted. From this blog only thus, one has to conclude that all doctors are morons. Maybe the doctors should all go ask for their money back from the universities that graduated them.

I use Aldara as prescribed by my GP who himself has used it with great success. My treatment has to run another week. As indicated in the documentation and as informed by my GP, my skin is reacting with all the expected redness and scabbing.

Let's see if I also become on the the "walking dead" that there are so many of on this blog. Regardless, I'll report back every week.

Meanwhile, go read a real and successful experience: http://stvincentsdarlinghurstmalenurses.blogs...
Aldara1

Lindale, TX

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#2090
Nov 3, 2013
 
CJB wrote:
This blog is to say the least, quite interesting. The varied opinions from all these self proclaimed uneducated experts is very scary. Problem is, not a single educated medical opinion was yet posted. From this blog only thus, one has to conclude that all doctors are morons. Maybe the doctors should all go ask for their money back from the universities that graduated them.
I use Aldara as prescribed by my GP who himself has used it with great success. My treatment has to run another week. As indicated in the documentation and as informed by my GP, my skin is reacting with all the expected redness and scabbing.
Let's see if I also become on the the "walking dead" that there are so many of on this blog. Regardless, I'll report back every week.
Meanwhile, go read a real and successful experience: http://stvincentsdarlinghurstmalenurses.blogs...
I too think you and your blog are both scary and full of uneducated innuendos resulting from your short association on the subject of Aldara/imiquimod. So short, that you might be due little consideration for any opinions you might express here or on your blog. From the comments you make above, one can instantly draw valid conclusions about the positive promotions you so eagerly express about this drug and the counter-measures you are taking to actively promote this drug as being such a benign substance "FOR EVERY USER". Unfortunately, you have no conception of what you are talking about as evidenced by your lack of any offer by you to support the empty statements you are making with the science to back it up. Now, unlike you, I have an education in fields that allow me to interact and interface with members of the medical community and legal community "DIRECTLY" and do so daily. I have researched this drug for over 13 years now. I have accumulated over 9,500 documents on this drug since it was FDA approved in 1997 and oh yes these are all documents with negative findings from valid research groups and all are peer-reviewed articles most are 3M's own words. I have successfully litigated with 3M Pharmaceuticals/3M Company where "THEY" not "YOU" have stated the real science behind their drug THEY discovered and manufactured. I have fielded over 5,000 emails from severely injured victims, and I have FDA documentation depicting 28-deaths as a direct result of users using this drug at the directions of their physicians, the ones you say are "ALL" super intelligent beings that we should all submit our bodies to and accept each and every directive they inflict upon us God. Just as all doctors are by no means the brightest star in the sky, no one user of Aldara/imiquimod will react the same to this drug. As 3M so eloquently stated, "some users have violent reactions resulting in systemic disorders to this drug while others have no reaction at all. We do not understand why but that is the reality of the substance" Well, that's about all I have to say to you and I wish you the best of luck post-treatment months down the road when you will be able to determine if your gross overdose use of this drug, and it is, has damaged you in any way, and my educated guess is that you could not have escaped harm with you insidious desire to treat yourself so unjustly as you have just to make your point and to promote this drug for whatever your agenda might be. Truly a sad situation.
Michele

Cape Town, South Africa

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#2091
Nov 3, 2013
 
Aldara1 wrote:
<quoted text
I too think you and your blog are both scary and full of uneducated innuendos resulting from your short association on the subject of Aldara/imiquimod. So short, that you might be due little consideration for any opinions you might express here or on your blog. From the comments you make above, one can instantly draw valid conclusions about the positive promotions you so eagerly express about this drug and the counter-measures you are taking to actively promote this drug as being such a benign substance "FOR EVERY USER". Unfortunately, you have no conception of what you are talking about as evidenced by your lack of any offer by you to support the empty statements you are making with the science to back it up. Now, unlike you, I have an education in fields that allow me to interact and interface with members of the medical community and legal community "DIRECTLY" and do so daily. I have researched this drug for over 13 years now. I have accumulated over 9,500 documents on this drug since it was FDA approved in 1997 and oh yes these are all documents with negative findings from valid research groups and all are peer-reviewed articles most are 3M's own words. I have successfully litigated with 3M Pharmaceuticals/3M Company where "THEY" not "YOU" have stated the real science behind their drug THEY discovered and manufactured. I have fielded over 5,000 emails from severely injured victims, and I have FDA documentation depicting 28-deaths as a direct result of users
using this drug at the directions of their physicians, the ones you say are "ALL" super intelligent beings that we should all submit our bodies to and accept each and every directive they inflict upon us God. Just as aldoctorsare by no means the brightest star in the sky, no one user of Aldara/imiquimod will react the same tothis drug. As 3M so eloquently stated, "some users have violent reactions resulting in systemic disorders tothis drug while others have no reaction at all. We do not understand why but that is the reality of thesubstance" Well, that's about all I have to say to you and I wish you the best of luck post-treatment months
down the road when you will be able to determine if your gross overdose use of this drug, and it is, hasdamaged you in any way, and my educated guess is that you could not have escaped harm with youinsidious desire to treat yourself so unjustly as you have just to make your point and to promote this drug for whatever your agenda might be. Truly a sad situation.
THIS IS FOR CBJ - yes alot of doctors are idiots and we have been programmed to believe everything they say and do. You had better think about what Aldara 1 is saying, he really knows what he is talking about. Carry on doing Aldara, I think one little pack a day is your best bet, I think this will really help you. Don't undermine our intelligence, we are not idiots. You are actually saying that everybody on this site who have been poisoned are talking crap, why would we waste our time. This site is for help and support and to warn people of the dangers. You are happy with it so get off this site
lisa

Dunkirk, NY

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#2092
Nov 4, 2013
 
CJB, You are a funny guy. I didn't need an "expert" to tell me what happened. I may not know all the exact dynamics of how Aldara works, but one thing I do know is what happened to me! We are trying to share our experience so it may help people to stop and think before they use this drug. If people read this site, do research, and feel comfortable, then by all means they have every right to take the plunge and use this drug. No one should ever assume their doctor is an expert on everything. By the way, medical school does not teach physicians on each prescriptions drug...its actually the manufacturers who send out reps to teach the "medical experts" isn't that great...no conflict of interest there....by the way I am a registered nurse. Best of luck to you !
Michele

Durban, South Africa

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#2093
Nov 4, 2013
 
lisa wrote:
CJB, You are a funny guy. I didn't need an "expert" to tell me what happened. I may not know all the exact dynamics of how Aldara works, but one thing I do know is what happened to me! We are trying to share our experience so it may help people to stop and think before they use this drug. If people read this site, do research, and feel comfortable, then by all means they have every right to take the plunge and use this drug. No one should ever assume their doctor is an expert on everything. By the way, medical school does not teach physicians on each prescriptions drug...its actually the manufacturers who send out reps to teach the "medical experts" isn't that great...no conflict of interest there....by the way I am a registered nurse. Best of luck to you !
Yes Lisa and the rep is usually a blond wearing a mini skirt and telling the doctors about this new fantastic med they can prescribe and if they sell a lot then there might even be a little bonus or holiday going for them. If the doctors read all the info about the so called new drug then maybe they would know a little more. Unfortunately they don't and thats where the problem arises. Also what doctors know about cytokines is really dangerous, 90% know sweet f. All only know that they are their, it's a bloody joke. I know more about cytokines then they do, much more. And CJB I am a medical technologist and also in the medical field like Lisa.
How are you doing Lisa you really don't sound too good at all. Prayers with you. Tracey is getting worse by the day, she is so desperately sick am really so worried about her as well. If you need to chat my email address is michelekach@yahoo.com. Xxxx
lisa

Dunkirk, NY

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#2094
Nov 4, 2013
 
Hi Michelle, Well said. Im the Lisa from NY not IL, after 5 years I am managing. Sorry for Tracey and all those who have been devastated by the drug.
Kristin

Matthews, NC

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#2095
Nov 11, 2013
 
sylvia in MO wrote:
Hi Lisa, I totally understand the emotional frustration. I struggle through each day, trying to regain some normalcy in my life. I never quite get there. Between the constant ringing in my ears, nausea, and the intense neuropathic pain, I am miserable. I will never again, start a medicine without spending time researching at great depths, its potential side effects. I will tell everyone I know NOT to use that drug. My treatment has proven to be MUCH worse than my original problem.
Sometimes you don't have a choice! I have VIN III and I am facing a total skinning vulvectomy at 30 years of age! This is my only other option and I will do anything to avoid surgery. I certaintly don't appreciate you calling that foolish. I think it is smart!!!
Rex

Uniontown, OH

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#2096
Nov 11, 2013
 
Hey Kristin...I just looked up your condition. One of the possible causes that they mentioned for VIN is immunosuppression. If that is the cause and where they are going to place this stuff....I would rethink your choices. I understand surgery is not a great choice....but 40 years of a distorted life with constant changes and pain is what you may end up with. I am one of the lucky ones that has an almost normal life....but I deal with on and off pain, small fiber issues and other fun stuff. I am lucky because the stuff never directly entered my blood stream. Please re-read that last sentence. I wish you the best on what you choose.

Since: Nov 10

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#2097
Nov 12, 2013
 
Kristin wrote:
<quoted text>
Sometimes you don't have a choice! I have VIN III and I am facing a total skinning vulvectomy at 30 years of age! This is my only other option and I will do anything to avoid surgery. I certaintly don't appreciate you calling that foolish. I think it is smart!!!
I will only add information here directly from the scientific research findings from clinical trials conducted on VIN. 3M, the manufacturer along with now a number of generic manufacturers have tried for many years to identify additional indications for imiquimod, the only active ingredient in all of these branded products and the results have been dismal and without success. When they ran VIN trials they found alarming safety issues and little to no viable efficacy from the use of imiquimod. What they did find, was severe and pervasive destruction of internal tissue, primarily mucous membrane tissue and other types accompanied by some quite serious systemic side effects that in most cases become permanent. The reason for these unwanted side effects is easily explained by the ease at which the imiqumod will absorb into the blood circulation as the tissue is compromised via the induced erosion that develops ulcerated open and bleeding wounds. Some of the same side effects and destruction of tissue I describe here is exactly what Sylvia has experienced. I have followed Sylvia's fight for her life for a number of years now. I have also heard from other VIN patients but I have never had any feedback from a user who had a successful experience with using imiquimod in the treatment of VIN. Just as there as been very little success stories coming out of trials using imiquimod for treating melanoma's but that does not stop the "money machines" from continuing to experiment on unassuming patients in their all out attempts to find that one success story out of thousands that they might report on as being what everyone using the drug should expect in a particular indication of use. I along with the others hope you make the right choice for your treatment. And you are exactly right, it is your choice and not our's.
Fav

Hoboken, NJ

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#2098
Nov 13, 2013
 
lisa wrote:
Hi Michelle, Well said. Im the Lisa from NY not IL, after 5 years I am managing. Sorry for Tracey and all those who have been devastated by the drug.
Hi, it's almost four years for me, and in that time some things have gotten better, but I still push through each day not feeling like myself at all. I used to always feel great, and I'm only 34 years old. The only test that came back positive out of every test imaginable over the years, which is a high igm level, which some docs have said aldara could be the cause. One group wanted me to try rituxan to bring my levels down but that drug is very dangerous as well. I try all the natural things for now and pray a lot. Lisa: I'm curious to know what has calmed down for you and what symptoms you still have. I remember we had a lot of the same symptoms.
Michele

Cape Town, South Africa

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#2100
Nov 14, 2013
 
Fav I am also not that bad anymore, after 10 months I also just don't feel normal. Only those of us who have been poisoned by this drug know what I am talking about. At the mo its candida which I have had for the last 10 months and my stomach feels permanently inflamed, it's like I want to pull my stomach out of myself, not sore just so tender all the time. Oregano oil tabs and olive leaf with probiotic seems to help it somewhat but it's always there. Also just don't feel right. But I count myself blessed and fortunate to not be going through what some of you poor people are going through, aqt least I am feeling better, lots of you are just getting worse, it's just so scary. At least I can more or less function normally even though sometimes I don't know how I get through the day. You can't tell people at work most of them think you are talking absolute shite, so you just carry on in silence and pretend you are ok. Prayer and love for all of you out their. Xxxx
Lisa

Milwaukee, WI

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#2101
Nov 14, 2013
 
I have a question. This is Lisa from Chicago, btw. I've been trying to read through the 2000 posts, but I don't see any search feature. Has anyone had problems with chronic dry mouth after using imiquimod? My doctor thought I might have Sjogren's syndrome, but he said my ultrasound would've shown that, which it didn't. I have dry mouth so bad, that my tongue feels constantly rough and burns like I ate spicy foods. And now I'm having issues with swallowing, I think maybe because its so dry the food sticks and I have to swallow twice to get it down. Right now, I'm stuck with slurred speech and a very uncomfortable raw feeling tongue 24/7, but was wondering if anyone had the same thing following treatment and if it eventually went away. I've always been a positive person, but all of this is really starting to wear on me.
Rex

Uniontown, OH

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#2102
Nov 14, 2013
 
Lisa,

I have had dry mouth off and on. That is one of the autonomic features of our body. Things that function on their own. More then likely you have had damage or alteration of your small fiber nervous system. I have this issue of dry mouth as you but not to your extent. What I have found that helps me is that I chew gum...all day. Also I have a tongue scraper and have to use it once a day in the back. Also when my mouth was at its worst I found that a antihistamine tablets would work...doesn't make sense but I think some of the drying issue I was dealing with was coming from my sinus. Hope that helps.

Since: Nov 10

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#2103
Nov 14, 2013
 
Lisa wrote:
I have a question. This is Lisa from Chicago, btw. I've been trying to read through the 2000 posts, but I don't see any search feature. Has anyone had problems with chronic dry mouth after using imiquimod? My doctor thought I might have Sjogren's syndrome, but he said my ultrasound would've shown that, which it didn't. I have dry mouth so bad, that my tongue feels constantly rough and burns like I ate spicy foods. And now I'm having issues with swallowing, I think maybe because its so dry the food sticks and I have to swallow twice to get it down. Right now, I'm stuck with slurred speech and a very uncomfortable raw feeling tongue 24/7, but was wondering if anyone had the same thing following treatment and if it eventually went away. I've always been a positive person, but all of this is really starting to wear on me.
I am the owner of Aldara1.com and over the last 10-years I have had the website deployed I have heard from probably a dozen or so individuals with burning-mouth-syndrome during and after their use of imqiquimod. Most of these users have this condition last for years. I have Sjogren's Syndrome as a result of my use of Aldara/imiquimod back in 2000. My conditions which include IBS, Celiac Disease, Parkinson's, peripheral neuropathy and a few other conditions all of which began with me during and shortly after my use of Aldara/imiquimod on a BCC on my forehead. However, I never had a burning mouth condition, thank God. This condition has been discussed by medical investigators and the literature suggest that it is likely due to the nerve damage caused by the well known and established ability of imiquimod to set up an autoimmune environment capable of attacking and destroying the sheathing or covering surrounding nerves within the tongue itself leaving the nerves sensitive to everything they come in contact with including the tissue surrounding the nerves. Like a cavity in a tooth exposing the roots of a tooth and we all know how that feels.

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