Always interesting to see new research in sarcoidosis, especially using existing treatments. This one stands out in trying to use nicotine as a therapy. Study is not yet enrolling, but will be recruiting at Ohio State Univ shortly.
From http://clinicaltrials.gov/ct2/show/NCT00701207
Detailed Description:
Until recently, there was no good explanation for the fact that smoking cigarettes actually reduces the risk of sarcoidosis. Research studies have shown that the nicotine, a common component of cigarette smoke, strongly suppresses the immune system and reduces the type of inflammation that is characteristic of sarcoidosis in the lungs. We propose that nicotine treatment, administered in the form of a skin patch, will reduce the severity of lung disease in patients with sarcoidosis. Sarcoidosis patients who volunteer to participate in this study will submit standardized questionnaires relating to their quality of life and the severity of their shortness of breath before and after treatment. We will also compare objective measures of lung function, radiographic parameters, and the severity of lung inflammation. We predict that nicotine treatment will reduce the severity of sarcoidosis symptoms, improve lung function, and resolve lung inflammation. If our hypothesis is proven to be correct in this relatively small group of patients, we will perform additional studies in a larger group of patients and will consider the features of sarcoidosis patients that predict a favorable response to nicotine and other nicotine-like drugs. If nicotine is ultimately found to be an effective treatment for sarcoidosis, it may replace some of the existing treatments which are frequently ineffective and have unacceptable side-effects.
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Study of Nicotine Patches in Patients With Sarcoidosis
- By quincycat
- Posted July 9, 2008 at 9:45 am · 30 replies
- In Treatment decisions
- Shared with the public
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Exercise Cancer Claritin Imuran Plaquenil Nicotine gum Allegra Pneumonia Prednisone Sarcoidosis Allergies Nicotine patch Fever Pain Heart attack Lyrica Neurontin Methotrexate
30 replies
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- By Purplesprout
- Posted July 9, 2008 at 1:15 pm
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Hmm....I quit too...which is when I had my first real problems....kind of makes you want to go out and buy some patches!
- By Paradox
- Posted July 9, 2008 at 1:44 pm
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A very interesting study suggestion. "Traditional wisdom" has noted the decreased likliehood of developing sarcoidosis in smokers but that once sarc was present in the lungs smoking made the respiratory symptoms worse (what a surprise that is).
Of course, the question that I wonder is: is there really a decreased rate of sarcoidosis developing in smokers or are the symptoms being misdiagnosed as smoking related historically?
I do know of sarcoidosis patients who have active disease despite continuing on the smoking-cessation aids of patches, gum or lozenges. I'd be interested in seeing how this study pans out.
- By quincycat
- Posted July 9, 2008 at 2:10 pm
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Agree it will be interesting to see the outcome of the study.
I should note that my posting was not meant to encourage anyone to start buying nicotine patches for their own sarcoidosis. Certainly if you are a current smoker, it's not a bad idea. But if you are a non-smoker, I would also hold out for a bit to see the outcome of the study. Patches are pretty safe, but do bring some mild risk, need to watch for interactions with other meds and certainly be careful with them around kids).
- By RuthfromOz
- Posted July 10, 2008 at 6:46 am
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I have to echo TeeGee's thoughts "How ironic"... I started getting my first recognisably sarc symptoms during my final and ultimately successful attempt to quit smoking. My actual diagnosis came 1 month after my last nicotine patch came off. Could this just be coincidence??
- By LindaW
- Posted July 11, 2008 at 5:25 pm
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No Kidding!! Iquir smoking on March 17th 2001 at 10:00pm.....It was a Sunday night......Shamrocks all aglow......Irish everywhere. They were playing Black Velvet Band...Yes, I remember it well....
Well...not 2 years later....Sarcoidosis!! Yikes!
Still not smoking (husband quit the same time) but he also now quits after every cigarettes he smokes.. Did not work for him. I was on the Patch for about a month. Smoked a pack and a half. All my old pics from 14 on has me with a smoke. I am now 45. Quit smoking and get Pulm Sarc go figure...
Linda
- By dt1966
- Posted September 20, 2008 at 1:12 pm
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I don't have anything to lose. I bought some 21mg patches this morning. The only problem is that I don't really have a way to gauge if I'm improving number wise or not? I'm going to try it anyway.
- By Cheesypops
- Posted September 20, 2008 at 4:42 pm
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Ex smoker many times over and havent had the need for almost 3 yrs..
But I have to say...I would be very concerned slapping on a nicotine patch just to see if it helped the breathing. Now if your a current smoker ..more power to you. Join the rest of the ranting ex smokers of the world....we are a rowdy bunch..
Its the high brow never smoked so dont know what your dealing with type....that I had issues with lol..
Good luck with that.
- By trevor
- Posted September 20, 2008 at 6:09 pm
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Here we go again. The basic problem here is treating the immune response as the cause of sarcoidosis rather than a sympton. You have only to look at the experiences of people on this site that immuniosupressants do reduce the symptons at first and then the symptons return worst a little while after the drugs are stopped.
- By Paradox
- Posted September 21, 2008 at 3:30 am
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Trevor - Perhaps I am missing something but this statement about immunosuppressants seems like something out of a Lewis Carroll story. Perhaps it is a deficiet on my part - perhaps I am not grasping the subtlties of the well reasoned science - perhaps I've been watching a Columbo marathon.
1) Of course some people will have rebound when they stop immunosuppressants. To expect that giving a drug to stop the cascade that causes inflammation will keep working when you stop it simply doesn't add up. The point is that sarc goes into spontaneous remission but you have to try and wean from the drugs from time to time to know if it did.
2) For purposes of clarification the symptoms themselves, as in many diseases, do seem to be the dangerous part. As an example:
Sepsis - an overwhelming bacterial infection in which many of the body's organs will fail and shut down and blood pressure drops to dangerously low levels (all on top of wild temparture swings and mental status changes) is most effectively treated with, not just antibiotics, huge doses of steroids. The symptoms described are not directly caused by bacteria but by the immune response to the presence of the bacteria - larger presence means a larger response and the uncontrolled response means inability to control temperature as well as extreme blood pressure shifts as circulation is shunted away from vital organs. Without steroids to stop that massive cascade of immune response, septic patients would not do well. Oh, and this mess continues after the bacteria are all gone - it isn't autoimmune, it's simply immunity in overdrive.
Further examples: Allergies are the immune system responding to inconsequential foreign substances. I doubt you'd find many hay-fever sufferers who would choose to go without their claritin or allegra but if you take it away during allergy season, those symptoms come back with a vengence... go figure.
I think there may be a basic problem, but I don't think it is quite what you describe. Science and medicine are matters of fact, not opinion. The amount of time and energy these researchers spend on their education including all the basic sciences as well as the specialized fields is immense. They back their hypothoses with objective data and do actual research to seek real answers. The only real way to challenge those hypothoses is with the same - facts, objective data and research.
- By Krissy
- Posted September 21, 2008 at 4:10 am
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Here it is again. This confuses me. Is the study to show that it improves "the condition of the lungs" or the symptoms of sarcoidosis? The symptoms of sarcoidosis are not just on the lungs. Does it alleviate other symptoms or just the lungs? Obviously there has been some improvement somewhere with some people for notice to be taken about nicotene. Did the smokers who noticed improvement notice it on the lungs or all their sarcoidosis symptoms? If they just had improvement on their lungs, will the patches do the same for them as smoking the dreaded stuff did? This will be an interesting study.
- By Krissy
- Posted September 21, 2008 at 4:12 am
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Here it is again. This confuses me. Is the study to show that it improves "the condition of the lungs" or the symptoms of sarcoidosis? The symptoms of sarcoidosis are not just on the lungs. Does it alleviate other symptoms or just the lungs? Obviously there has been some improvement somewhere with some people for notice to be taken about nicotene. Did the smokers who noticed improvement notice it on the lungs or all their sarcoidosis symptoms? If they just had improvement on their lungs, will the patches do the same for them as smoking the dreaded stuff did? This will be an interesting study.
- By Cloudnine
- Posted September 21, 2008 at 4:59 am
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Hm, I knew I missed some dirty habits along the way in life. Slaps self in the forehead, accidentally causing small abrasion to forehead. Searches around in medicine cabinet, doesn't find one stinking band-aid. Grabs next best thing, the nicotine patch.
AAAAHHHH! much better!
If nicotine is an immune-suppressant can this patch be used for other diseases? Has it been studied in other diseases? I am kind of thinking out loud, but if someone knows the answer, I am interested.
- By Cloudnine
- Posted September 21, 2008 at 5:27 am
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Okay scratch my questions, I looked it up. Yes, it has been used already in other diseases and not only as an immune-suppressant, also as an anti-inflammatory. I am not going to list what it has been used for. I don't want to encourage the misuse of anything. It was not used for lungs in the studies I reviewed Krissy if that answers your question. I only briefly scanned the articles.
- By priscurl
- Posted September 21, 2008 at 9:45 am
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Well hear's my two cents. My sarcoid went into remission on low dose pulsed prednisone. It had not been in remission for the four years prior to diagnosis (1995 - 2001) basically (offic. diag 1999). It just kept getting gradually worse. In 2001, I met with an immuno who agreed I was bad enough to try the pred. Remission. Blissful remission. I was out of pain for the first time in about 7 years and doing normal things, also lost weight with diet and exercise. In 2003, it was back with glands up, night sweats so bad I would have to change my sheets and nightclothes in the middle of the night after showering and washing my hair. I was on pred again, but I never went fully into remission with it, although my blood tests returned to normal bar the eosinophils. Soon I had EN. It took six months to convince somebody to look into it properly. Sure enough all the bloods and x-rays were abnormal again. Then they took me off all my medication, everything for four to five months (this is in 2006 so for six years I had been on plaquenil) while they decided whether I had a bleeding ulcer. By that time neurosarc had set in but good. I hardly ate or slept for four to five months while the %$****@$ faffed around with neurontin, Lyrica and methotrexate. I went to my local doctor and announced I had put myself on 30mg of prednisone and the thing thankfully cleared up within two weeks. However, other sarcoid symptoms have persisted. I was put on Imuran around that time, and was on it until Feb this year. It is exactly a year since I came off pred and the bloods are still not back to normal, in fact they are getting worse and frankly, I am %%%%%***%$ past caring.
My first immuno warned me that people she had observed who had had prednisone usually worsened on it, and I believe there are studies that indicate this. The first three doctors I saw over sarcoidosis refused to prescribe it on those grounds and also those that the risks outweighed the benefits.
I believe from this and other sarcoid experiences of purely my own, as well as certain peculiarities of the disease, that sarcoid is of infectious origin in the same manner as TB. Lots of people are exposed, but only those with the right genetic makeup or environmental risks actually get the disease.
It may be purely chance that non-smokers make up the bulk of those who get sarcoid. Perhaps there is a sampling error or perhaps patient's faced with the evidence they have a lung disease are too embarrassed or afraid to admit they smoke in front of their doc.
There's no way that I would be putting a known and maligned poison into the body. I think the whole idea is ridiculous. I would want to see the results of the trials (double blind placebo vs nicotine) before jumping into that pool.
A very hacked off pris (and it is 11.45 pm)
- By priscurl
- Posted September 21, 2008 at 9:56 am
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Matters of fact??????
You could go to twenty doctors, get the same tests done with the exact same results and get twenty different answers, opinions, and medications.
Medicine is as still much art as science.
In fact, isn't Dr Groopman's book about the fact that science often clouds the issue.
Let's not forget that two jumbo jets full of people die each day in Australia from health system errors.
Pris (sorry to be a doctor basher Paradox but they have seriously added to my suffering and also to the suffering of people I love).
- By Cheesypops
- Posted September 21, 2008 at 11:44 am
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Krissy
I think the difference between the patch and smoking the real deal (ahem...let me rephrase that one)...CIGS...
Is you dont get all the excess tar and or bs that is an additive. Not to assume or infer that you don't understand that. I just may have read your post incorrectly.
And I think the Immune response vs the symptom discussion is alot like chicken and the egg trevor. I have done immunomodulators for MS...and currently do not take them now...but yet the only noticeable difference is hte lack of illness for 24 hrs per week.
Sure every doctor will have there own track they follow, position they take and course of treatment they adhere to. But to generalize all doctors as..."them types" ....I just cant get my head around that one pris.
And to top that all off...Your stepping on Doc P's toes during a taper....man...I wouldnt expect anyother response...:)
Light one up people and relax...creative discussions without getting personal are always the best way to finding solutions..
- By quincycat
- Posted September 21, 2008 at 1:00 pm
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Don't try this at home...
OK. The intent of my posting the link was really meant to be informational; looking at nicotine may provides clues to the pathway of sarcoidosis.
But please talk to your doc before trying this on your own as a self-administered therapy? Keep in mind that with a "sample size of one" you will never really know if treating yourself in this way did benefit or harm (relative to the course your disease may have been taking).
- By quincycat
- Posted September 21, 2008 at 1:05 pm
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And Krissy -- to your question...
This particular study is only looking at lung inflammation as a primary outcome. (So the primary outcome is not function, nor impact on any other organ involved -- although function is being looked at in the study). Participants must have lung involvement.
Also, I do not believe that the take-away is that taking up smoking reduces symptoms (I will have a hard time sleeping tonite if people read this thread and decide to pick up a pack of Lucky's as a therapy). I think the history here is that smokers have a lower rate of sarcoidosis than non-smokers (of course, they are busy killing off their lungs in a different way).
- By Paradox
- Posted September 21, 2008 at 11:08 pm
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Pris,
I think you actually make my point for me. Doctors are also human and prone to the same errors in thinking and that is what Dr. Groopman is referring to in his book. It isn't that "science clouds the issue" as much as the thinking patterns of people do. Science is matter of facts. Medicine is objective at it's ideal state. The errors that occur in the medical system are due to errors in thinking or knowledge and not malicious intent (I hope - certainly that would be the exception).
Case in point. A doctor sees a patient who is brought in having horrible deblilitating chest pain. The male patient is showing classic signs of acute MI (heart attack) and an EKG tracing does show disturbance. This is a common diagnosis and in this case the doctor immediately concludes that a heart attack is the issue and administers a medicine to break up clots in the blood vessels feeding the heart. This might have worked if the diagnosis had been right - instead it killed the patient because the data pool was incomplete. A simple chest X-ray would have shown the aorta was enlarged because it was torn - giving drugs to stop clotting allowed the patient to bleed to death.
This case is a quick summary of a very real case. There is no error in "science" or in the facts - just an incomplete data collection and a jumping to conclusions by the physician on duty who had likely seen at least 3 other heart attacks that day, all of which were heart attacks.
Again, not science clouding the facts, human nature and thought patterns do. It is the very reason we need the objective and structured boundries of science to achieve any model of what the real truth is.
- By Paradox
- Posted September 21, 2008 at 11:10 pm
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Oh - for the record - I am not making excuses for the physician in the above case. The details of the case are a bit more intricate, but the doc who made the decision to give the lethal drug most certainly made a mistake.
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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