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PostPosted: Thu Nov 26, 2015 3:41 am 
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Hopefully, you will have some insight doc!

My health started to deteriorate in January 2009, first with fatigue and severe headaches (right behind my eyes). I saw an ENT, psychiatrist, my primary, a dentist and a neurologist. I had an abnormal MRI showing possible demyelination or vasculitis and also had a low B12 count. I was given B12 injection and my neurologist wasn't concerned about my MRI. Down the road, I was prescribed pain medication for my headaches which slowly snowballed into addiction. I got help in January 2014 and have been on bupe since, currently at 6mg a day.

My health continued to get worse throughout the years, affecting almost every system in my body, including gastrointestinal , nervous, respiratory, circulatory, skin and so on.

Fast forward to January last year, another abnormal MRI showing more of what was seen last time. This neurologist took it more seriously and ordered a ton of blood work. While my ANA was negative (though borderline), my PTT-LA, C-Reactive Protien, Anticardiolipin IGM, and Hexagonal Phase Phospholipid were all high so Lupus was suspected. I was seen by a Rheumatologist who the AVISE SLE blood test which is supposed to have something like an 84% chance of confirming Lupus. This time, my ANA was elevated (but on the IIF, still negative on ELISA) and a strong positive for EC4d which apparently is Lupus specific. I was put on Plaquenil and sent on my way.

I ended up having to change rheumatologist within the first 6 months and the new doctor spent an hour going over my history and examine me. He explained that he's not confident that I have Lupus, but if the Plaquenil was helping (it was, but still not near normal or healthy), to stay on it.

This really got into my head and after forgetting my Plaquenil dose for a few days, I just stopped taking it. It could be mere coincidence, but shortly after I came down with a 3 month long upper respiratory and/or sinus ordeal. Nasal passages clear but coughing up lots of phlegm, sinus pain and pressure, dizziness, blurred vision, ears popping and making weird noises. I saw my primary each of the first 2 months and was told it was bronchitis and sent off with an antibiotic, prednisone and inhaler but with zero relief. The last month, I saw an ENT who said my sinuses were clear but inflamed and didn't think it was an infection or reflux and recommended I see an allergist.

I got so sick of being sick, I couldn't wait for the allergist appointment and went to my primary's practice and was seen by one of his partners. He said my lungs sounded awful and my airway was constructed but ruled out pneumonia via X-Ray. His conclusion? Bronchitis. I asked why the other 2 rounds of antibiotics wouldn't have cleared it up, and after leaving to check my chart, he concluded the Plaquneil has compromised my immune system and perhaps I either never fought it off or I just picked it up the moment I finished each round of antibiotics. This did prompt him to treat me with an injection of antibiotics and prednisone in addition to a Z-pack, more prednisone and another inhaler. I immediately felt better the next day!

Sorry this ended up being much longer than I had intended. I did restart the Plaquenil a few days before I that visit and also started taking Priolsec. I've read some articles about the immunosuppressive properties of opiates but also that studies it's to a much lesser extent with buprenorphrine. My question is, could both Subutex and Plaquenil suppress my immune system to the point that I'd still have an infection after a 14 day treatment of Biaxin and a 21 day treatment of Augmentin? Or perhaps caused by a Lupus complication from stopping Plaquenil for that month? And the last possibility, something entirely different?

I'm also curious if you have any updated information on buprenorphrine's immunosuppressive properties or any experience with patients with Lupus also on buprenorphrine. Thank you so much for your time if you've managed to get through this all. I apologize in advance for the misspellings, it's way too late!


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PostPosted: Thu Nov 26, 2015 11:49 am 
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This is purely anecdotal and I have no scientific studies to back it up. But based on what I've heard from others and my own experience, bupe and other opiates seem to enhance the immune system, not suppress it.

Many people have reported not getting sick for months or years on bupe, methadone and other opiates. Then when they go off they start catching colds and the like. I had a medical professional confirm that for me, but again, he was only going on what other patients told him.

As far as how it works when you have lupus and are on other medications I have no idea. But I wish you well, and I hope you keep posting on your progress.

Lilly


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PostPosted: Thu Nov 26, 2015 1:23 pm 
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Perhaps the opiates were just blocking the pain of being sick?

Here is one of the articles I had read about the immunosuppressive effects of opiates. It also mentions however that the same response was not seen in rats when administered buprenorphrine.

http://www.ncbi.nlm.nih.gov/m/pubmed/16764216/

During my research, I also stumbled across this article from Dr. Junig.

http://blogs.psychcentral.com/epidemic- ... enorphine/


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PostPosted: Thu Nov 26, 2015 8:55 pm 
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Your history is SO complicated that it truly deserves a team of doctors, working together, to sort things out. Your early MRI findings seem to have been forgotten more recently; you had signs of demyelination and vasculitis, two conditions that suggest auto-immune disorders like MS or one of a dozen auto-immune vasculidities... which I know very little about! You had some borderline test results, which don't tell us much because it can be very difficult to identify some auto-immune disorders.

The bronchitis/pneumonia issue might be related to having an auto-immune condition that interferes with your response to infection... or could be because you were infected by a strain of bacteria that was resistant, or partially-resistant, to the antibiotics you were given. Plaquenil certainly suppresses the immune system, which is why it is used for inflammatory conditions. If I had to think of a reason you got so much phlegm and other symptoms after STOPPING the plaquenil, I would say that many of the symptoms we experience during viral or bacterial infections are caused not by the organism, but by our body's RESPONSE to that organism. I was just telling my daughter the other day to take ibuprofen, because she thought she was getting a cold. I don't know if there is science behind this, but I do that so that my body doesn't tear itself up with inflammatory chemicals as my immune system mounts a defense against the virus. Maybe you had all these viruses or bacteria growing in your respiratory system, but because of being immunocompromised by plaquenil, you didn't have much in the way of symptoms (such as fever, mucous production, histamine release which causes increased blood flow and nasal stuffiness, etc). You stopped the plaquenil, and your body then mounted a full immune response to the infection.

Just guessing... but I guess that's the fun part of medicine-- especially in cases where patients eventually get better even when we don't have it all figured out!!

Maybe the opioid effect of buprenorphine contributed to the effects of plaquenil. I don't know of evidence about that-- but the immune-reduction effects of plaquenil alone are significant enough to matter, with or without an opioid...

Chronic opioids do reduce cortisol levels. So maybe that's one reason you felt so much better after the steroid(?), which has the same effect as cortisol in your body. But on the other hand, most people, especially those with respiratory illness, feel energized and healthier after receiving steroids. Steroids can even precipitate mania in some people.

When I was in med school I had a better understanding of all of the things that steroids do throughout the body.... and better knowledge of all of the auto-immune diseases. But much of that has been lost in my memory banks.... and one of the things that I DO remember is that the auto-immune conditions are extremely complicated, as are the effects of steroids, cortisol, and plaquenil. I just read about plaquenil on Wikipedia, which I encourage you to check out-- as even the main historical use of that medication for treating malaria is poorly understood. Funny how a medication like plaquenil can be used to treat millions of people-- as it has, with life-saving effects in areas where malaria is endemic--- with no real understanding of WHY it treats malaria!!

I hope things settle down with your health situation. Welcome to the forum!


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PostPosted: Fri Nov 27, 2015 1:04 am 
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Thanks for the info doc! I had been taking ibuprofen for the exact reason you suggested it to your daughter. I'm pretty convinced, especially after reading your thoughts that it most likely was an infection that occurred just as I stopped the Plaquenil, sending my already confused immune system into shock.

And you're completely right - I need a team of doctors keeping an eye on my health. It's frustrating as a patient to have a primary, rheumatologist, cardiologist, psychiatrist, neurologist, ENT, gastroenterologist and dermatologist all treating me independently in addition to insurance companies low payouts and paperwork, forcing doctors to limit their time with their patients. In fact, my awesome primary made this same recommendation early this year. I really need stop procrastinating and just take the 45 minute drive into NYC.

On a seperate note, I wanted to thank you for all you do on this site. It doesn't take long browsing these forums to notice the dedication and passion you put into helping us all. You rock!


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PostPosted: Fri Nov 27, 2015 7:53 pm 
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Thank you- that's kind of you.

If you have someone to pull things together, you're better off than most people out there! That's the most frustrating thing about modern medicine-- all these people trained in narrow areas who don't have the time, or take the time, to communicate with each other. I think that it would save insurers money in the long run if they paid extra for a doc to serve as 'care coordinator'-- at least in people with complex histories. Think of the savings, just from preventing the duplication of tests that occurs as each doc gathers information for his/her own chart..

have a nice weekend!


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Fond Du Lac Psychiatry
Dr. Jeffrey Junig, M.D., Ph.D.

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