Some Numbers About Involved Systems

It seems that quite a few people bump into a problem with their specialists not being aware of what systems might actually be affected by sarc. Now, I could go into my woeful bemoanings about how society has been duped (both physicians and patients) into believing that specialists somehow know more about medical conditions than non-specialists, but you probably don't need to hear that right now, and I do it much better after a few mojitos anyway. Let's just say the truth is that most specialists know more about the specific cases they see and less about anything else.

With that in mind, coupled with the fact that sarc is a disease that almost invariably gets sent to the specialist, patients should have some information that they can present to whoever is overseeing their condition that supports their concerns. Here, then, are some numbers for you complete with citation that any doctor should be able to look up.

This is from a study published in 2001 that looked at 736 patients with biopsy proven sarcoidosis. This is the breakdown of symptoms/systems involved:

Lungs 699 patients 95.0%
Skin* 117 patients 15.9%
Lymph node 112 patients 15.2%
Eye 87 patients 11.8%
Liver 85 patients 11.5%
EN* 61 patients 8.3%
Spleen 49 patients 6.7%
Neuro 34 patients 4.6%
Parotid/Salivary 29 patients 3.9%
Bone Marrow 29 patients 3.9%
Calcium disorder 27 patients 3.7%
ENT 22 patients 3.0%
Cardiac 17 patients 2.3%
Renal/kidney 5 patients 0.7%
Bone/joint 4 patients 0.5%
Muscle 3 patients 0.4%

citation:
Baughman, RP, Teirstein, AS, Judson, MA, et al. Clinical characteristics of patients in case control study of sarcoidosis. Am J Respir Crit Care Med 2001;164:1885.
Official Journal of the American Thoracic Society.

By Paradox
Posted July 5, 2008 at 2:13 am

I don't think the numbers themselves are so important for each individual. What is important is that if a doctor tells you, "Sarcoidosis doesn't affect _______," you can direct them to this study that clearly shows that these organ systems were all found to be affected at least sometimes and proven by biopsy.

In the interest of full disclosure I should also mention that this study, as all research, had a few biases in it. One is that the doctors recruiting patients were all pulmonologists and therefor there may be a higher incidence of both more chronic or advanced disease with an increased representation of those with lung involvement.
Interestingly, there were some shifts in the ethnic backgrounds and gender ratios traditionally reported. More caucasian patients than black patients were enrolled (whether this has to do with differneces in access to medical care was not explored) and the female to male ratio was only about 2 to 1.

By Kathleen_Geaghan
Posted July 5, 2008 at 1:58 pm

Thanks Paradox! You don't know how much I enjoy reading your discussions. I learn more than I do from my so called specialists! Thanks, Kathy

By Sarasota
Posted July 6, 2008 at 10:54 am

You are such a blessing to us - although, we know you are suffering the ups and downs with us! And I am sorry for this. I have a question. In all of your studies or patient histories; have you found that active lung involvement causes the sarcoidosis to activate problems with the eyes? I am headed for my 3rd glaucoma surgery - (the 2nd time was for a re-visit as the stent dropped and was poking the back side of the iris). This time, it's for the other eye. Both times, I have had lots of coughing for 7-10 days, then the eye pressures go sky high! Now, it's off the chart. I've been on drops since the beginning of all of this. I can handle the coughing, cause it doesn't limit my breathing capacity. The glaucoma specialist and the pulmonary man say oral prednisone will not touch the eye pressure/ only the drops. Any case history on this? The stent in the L eye seems to be working - but how long. I know I will be on drops for the rest of my life. The 2nd surgery gave the glaucoma Dr. a chance to scrape off most of the scar tissue in my eye. I'm hoping tomorrow will be the only time for the right eye to be operated on. I'll check back in a couple of days. I won't be on site for a couple of days! Thanks so much, if you have any info; or not. You really have helped so much already! SarasotaSandy

By RuthfromOz
Posted July 7, 2008 at 5:07 am

I agree with the others - Thanks Paradox!
Just wondering if there was anything in the study which showed any tendencies for organ involvements to be linked? e.g. people with eye involvement more likely to also develop lymph node problems, spleen involvement more common with liver sarc, or whatever...

By Paradox
Posted July 7, 2008 at 7:25 am

Ruth,
The study I cited did not look at organ involvement from that perspective specifically. In some ways it might be a novel approach to look for links specifically along the lines you mention. What they have looked at, and this study did comment on, is the distribution of organ involvement along lines of ethnic heritage.
Let me provide you with the summary from the study:

"In conclusion, sarcoidosis is a multifaceted disease. In this study, organ involvement differed according to race, sex, and age. The major determinant appeared to be race."

Several previous studies have also noted an association with race and this is part of the growing argument of a genetic predisposition. I should point out, however, that there is an awful ambiguity we have all allowed to sneak into the language of sarc. When we speak of organ involvement we often mean the identifiable presence of granulomas in that organ system, which is a reasonable thing to mean. The fact remains that sarcoidosis, though, is a systemic disease that affects the whole body regardless of where the granulomas are (consider the fatigue, vit D/calcium issues, uveitis without "eye involvement", etc).

Some previous references that look at differing organ involvement in different ethnic groups for those with the desire to hit the library:

Izumi T. Symposium: population differences in clinical features and prognosis of sarcoidosis throughout the world. Sarcoidosis 1992;9:S105–S118.

Siltzbach LE, James DG, Neville E, Turiaf J, Battesti JP, Sharma OP, Hosoda Y, Mikami R, Odaka M. Course and prognosis of sarcoidosis around the world. Am J Med 1974;57:847–852.

By sherryberry
Posted July 7, 2008 at 8:08 pm

I have a question that doesn't really relate to this post. But you are a family doctor and have sarcoid and that is pretty rare on this website. My question is I wonder how many SPECIALISTS (preferably lung doctors) have sarcoid themselves? I am just curious about that. The answer is that there is probably not too many. I don't wish this disease upon anybody else, but sometimes I think it would be somewhat easier to deal with this disease if on this website we had a lung doctor or sarcoid specialist here to along with you to deal with this. But thank god you found this website and are contributing!

By Paradox
Posted July 7, 2008 at 10:39 pm

Sherry,
I don't know of many pulmonologists with sarc, then again, I don't know many people with it at all. I've actually seen more patients with it then physicians that I've been aware of. I do know a pulmonologist that was recently diagnosed with lymphoma (shortly after my diagnosis).
I think that you will find there are very true sarc "specialists" out there. It is not a hallmark disease of any single specialty and I have been thinking that it would make a lot of sense for a sarc clinic to be headed by a generalist with a team of specialists to bring a certain additional expertise (and procedures like bronchoscopy, echocardiogram, etc) to the table as consultants while the generalist manages the overall systemic disease that sarc really is. Let's be honest, specialists are not specialists because they are smarter than the general physician, they are specialists because they have a very narrowed focus of interest and, to be brutally honest, many of them don't recall enough of the general medicine outside their specialty to be comfortably practicing with anything outside of the norm. As some people have mentioned, do you really want to get your heart medicines from your arthritis doctor? I guarantee you that pulmonologists think of pain medicine much differently than rheumatologists.

Who knows, maybe in a few years the specialty that will be sarc specialists will be generalists who are familiar with cardiac, neuro, pulmonary, joint aches, and other issues at the same time.

By quinda
Posted July 8, 2008 at 12:15 am

Yes to all of that!!!!!!! I am facing mastectomy, chemo therapy and radiation with a surgeon to cut, a cancer doctor to order treatment and techs to carry it out. It has even some type of cure rate. Sarc is not at all like that. I have sarc in the eyes so I see a retinologist who never had seen sarc before. I see an internal medicine person who monitored the pred. who never saw sarc. before. Cancer has names, treatments, cures. Where are all the sarc. people???? On this website for sure. Thanks paradox and all of you. You are all helping me so much and not just with the sarc.

By Nonna
Posted July 8, 2008 at 12:32 pm

Dear Paradox, Thank you so much for the valuable and thoughtful information you are sharing. Regarding the incidence of sarc in the various places I have a question. Having been diagnosed by biopsy with cutaneous sarc without pulmonary involvement I have been told my other symptoms, which sure seem like neuro and lymph sarc, must be something else (like autonomic dysfunction). This chart doesn't address whether the subjects had lung involvement or whether these incidents were stand alone or does it?

By Paradox
Posted July 8, 2008 at 2:02 pm

Nonna,

Only 37 of the 736 patients that are included in that chart didn't have lung involvement. I don't recall if they mentioned the incidence of "stand alone" non-pulm sarc. I think that you will find that most scientists who study the disease think of it as a systemic disease and not isolated to specific organ systems but we do all tend to speak about where we see granulomas as the affected organs. It is important to remember that sarc isn't just about granulomas and places that don't show such lesions can still be affected.
My guess is that the most common single organ system involvement would be the lungs from the above study; but, remember that these patients were all recruited by lung doctors so there is going to be over-representation of lungs in this sample and possibly under-representation of those without lung involvement.
As for your specific symptoms, I really can't comment about the likliehood of them being sarc related or not. The fact is that sarc is so difficult to diagnose because it can mimic so many other things. This means that you could have another condition causing your symptoms or it could be sarc. The only way to know for certain is to have a complete work-up. On the other hand, if you undergo any treatment that should improve the specific symptoms were they sarc related and there is no improvement outside the skin lesions, that would tend to make me think that there is a different cause.
Hope that helps.

By Nonna
Posted July 8, 2008 at 2:37 pm

Thank you. I didn't mean to suggest that you should speculate on the origin of my other problems, sorry if it sounded like it. My husband is a physician and we have spent years not understanding the subtle and not so subtle things that have happened to me. Sarc is the first thing that seems to explain past and current symptoms, so when Dr. Sharma suggested my biopsied cutaneous sarc was "contained" and my other symptoms a mystery, it really threw me emotionally. I am doing better physically and I know now that my flares can be helped with prednisone and Lyrica so when that other shoe drops once again, I'll be prepared. I can live with the level of pain, needle-like stings, fatigue, hot and cold flashes at the current level but somehow, psychologically it helps to know the reason for what happens. It has helped knowing that TeresaK seems to have a similar course of this disease process and her physician has not ruled out "stand-alone" sarc for some of us.

By Paradox
Posted July 8, 2008 at 3:14 pm

Nonna,

I'm sorry, I didn't feel that you were pressing me to speculate, but I am aware that others read these threads and so I like to try and be as clear about what is general and what might be specific in my replies (still working on this some). My personal feeling is that sarc is underdiagnosed in the US (something that Sharma's own international research collaborative suggests - but certainly isn't the only explanation) and that many of the vague syndrome-like disorders out there may actually reflect a population of sarkies that have not been properly diagnosed. There certainly is precedent for my view as any review of juvenile sarcoidosis and juvenile arthritis will demonstrate.

One of my personal frustrations with American medicine is the tendency to find an answer rather than the right answer. It just seems that many physicians are satisfied labelling a person with a disease process or simply passing the symptoms off as belonging to a different specialty and therefor "outside their jurisidiction." I am aware of the pressures that from these habits in physicians but that is a long rant that I can save for another time.

Personally, I do think of sarcoidosis as a systemic disease and am amazed that other physicians would like to try to pigeonhole it into neat little cubbies as if something so variable and camouflaged could possible be easily tagged and put on the shelf. I can tell you that looking back over my own course and knowing what I know now I think it is quite easily demonstrable that I have been affected for well over a decade but didn't begin to have any significant breathing problems until a few years ago, and those were so subtle in their progression that I didn't really think of anything other than deconditioning due to time constraints. On the other hand, I know for a fact that I was one of the best on the swim team when I was in the 7th grade and could hold my breath longer than average at the time. I also remember having a permanent squint in bright light and photophobia by high school (this is still with me). My joint pains didn't really begin until college and really don't have any easy explanation as I wasn't really particularly harder on my knees and ankles than my peers. When I look back I do speculate that at least some of these are facets of my sarc. Of course, the work-up for the arthritis has proven I don't have that beast as we have assumed for many years, so there is ample evidence suggesting that sarc is the culprit after all. It is absolutely possible that your other symptoms could be related to sarcoidosis, unfortunately the only way to prove it is to prove it isn't something else - and that is often the hard part in a world of sub-sub-specialists who cling to a mantra of "outside my field of practice."

Sometimes I have to step back and entrench myself in the more "rubber-meets-the-road" aspects of medicine and ask myself if any specific labels are really useful or if I just want to find solutions. This helps at times, but the intellectual curiosity is never far away. It really does seem to me that, although some people only notice symptoms in a single organ system, medicine does try to stick that label on a person and doesn't want any awkward, unexplained symptoms to disrupt the organization of the diagnosis. If Sharma suggested it could be something else, like autonomic dysfunction, you can throw it back to him to prove it or direct you to someone who can.
I hope that clears it up (but I doubt it) and consider it just my very subjective two-cents worth

By Peggymarie
Posted July 9, 2008 at 11:55 pm

Thank you Paradox. I look forward to your responses as many others do challenged with sarc. I think many of us look back and try to figure out when this disease started and we want to take an active part in its treatment and how we live with it. Mine is systemic and involves lungs, bones, lymph, and abdominal area. I am under the care of a pulmonogolist, who is also a professor at Scott & White in Texas. I have been on Methotrexate for 2 months now. I wonder what you think of this treatment as I fear for my immune system, and wonder if Prednisone is better. My lung function (forgive my terminology as I am unsure), but was told that it is 60% oxygen to my blood. I feel pretty good these days, recently had cataract surgeries- will only need reading glasses. Please comment on Methotrexate and Prednisone. Thanks and hope you are having good days.

By jmaze
Posted July 10, 2008 at 9:52 am

I bet this is addressed somewhere, but I feel lousy and just don't feel up to looking it up, so can someone please tell me what it means when you say sarcoid is systemic? My doc is a pulmonary doc and I'm trying to figure out how to talk with her about these other aches and pains without sounding like a hypocondriac (spelling off I'm sure) Thanks.

By Paradox
Posted July 10, 2008 at 11:24 am

Hey jmaze,

Systemic means that it affects the whole body. When we talk about focal disease, like pneumonia, it can have symptoms across the body but the actual problem is in the lungs. If we talk about a heart attack, that too affects everything, sure, but the problem is in the heart. This is different with things like, say, diabetes, which affects every single organ system. Same for thyroid problems (maybe we should all start seeing endocrinologists... ). Sarcoidosis can cause problems just about anywhere and it is dangerous to assume that it will remain contained in one organ system or place.
I know that a lot of physicians tend to refer to the places having sarc as those places with granulomas or large lymph nodes, but remember, those are really just an expression of sarc, and even when they shrink down from drugs or remission, the sarcoidosis is still present, just not active. Who knows where else in the body it might be hibernating at any time? Or not so dormant even. How often does a specialist brush off concerns from another organ system and assume it isn't sarc?
I know if a patient walks into my office and complains of pain in both knees I wouldn't think of sarc right off the bat because it is so rare. On the other hand, if a sarc patient walks into my office with the same complaint, I consider the rareness of sarc as already addressed by the big masses in their lungs - so then that diagnosis rises up the list quickly.

When it comes to asking your doc about the other symptoms, think about asking her "what else could it be?" and "what's the worst it could be?" If they won't help you find answers, have them help you find someone who will.

Be well

By LLPike
Posted July 10, 2008 at 6:10 pm

Thank you Paradox (and all others) for the wonderful information. I log on many times a day just to read....I think I could read 24 hours a day because it's like reading a family history. :)
I agree about the doctor thing. I told my family that I see an "arm" doctor about my arm and a "leg" doctor about my leg...and so on. My pulmonary doc assures me every time I see him that he ONLY does lungs. So if I walk in there with a broken leg, I better now expect him to help me. I see the neuro doc for the neuro part and the endo for the abdomen and the cardiologist for the heart...yada yada yada. Fortunately, they ALL communicate with each other quite well. They have all had a "little" experience with sarcoid but I have been their little project. They usually listen and they all think I'm nuts when I tell them some of the symptoms. My GP asked me a few weeks ago if I thought I was suicidal, because it was an unusually bad day and I was a little down. I just laughed at him and assured him I would tell him if I was in that bad of shape. Strange disease!! A real pain to deal with most days. I'm sooooo glad you are all out there. Thanks
Laura

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