Marfan Syndrome and Chronic Pain

[alabamatrucker]

Dearest Dr. Steve,

My girlfriend(28yrs old) of two years has been having problems for the past year and a half. She has marfan syndrome . Her dad also has it. For the past year she has had extreme amounts of pain in her lower back,shoulders and legs. She went several doctors and none of them took her serious and most didn't even consider inflammatory arthritis or disc degeneration. After getting the run around from several doctors she went to a rheumotologist. After an extensive interview and exam he narrowed the problem down to her S-I joints around her pelvis area. He also thought at MRI would be a good idea. As suspected after the m.r.i he discovered she had degenerative disc disorder and inflammatory arthritis. He has mentioned treatment with some kind of shot that supposedly helps but also has major side effects(it lowers your immune system really low). We have talked about it and she hasn't made a decision but is thinking about pain management. I'm concerned about pain management because of the obvious opiate addiction concerns. Subutex or Suboxone doesn't work for her. It works wonders for me and really helps my pain alot. I'm afraid of most pain doctors because some go crazy with the opiates instead of finding a conservative treatment with anti-inflammatories and mild opiate treatment. Any suggestions for a treatment she could discuss with her doctor besides dangerous immune lowering drugs or massive amounts of opiates? Thanks for the help.

Alabamatrucker

[Dr Steve]

Dearest Dr. Steve,

My girlfriend(28yrs old) of two years has been having problems for the past year and a half. She has marfan syndrome . Her dad also has it. For the past year she has had extreme amounts of pain in her lower back,shoulders and legs. She went several doctors and none of them took her serious and most didn't even consider inflammatory arthritis or disc degeneration. After getting the run around from several doctors she went to a rheumotologist. After an extensive interview and exam he narrowed the problem down to her S-I joints around her pelvis area. He also thought at MRI would be a good idea. As suspected after the m.r.i he discovered she had degenerative disc disorder and inflammatory arthritis. He has mentioned treatment with some kind of shot that supposedly helps but also has major side effects(it lowers your immune system really low). We have talked about it and she hasn't made a decision but is thinking about pain management. I'm concerned about pain management because of the obvious opiate addiction concerns. Subutex or Suboxone doesn't work for her. It works wonders for me and really helps my pain alot. I'm afraid of most pain doctors because some go crazy with the opiates instead of finding a conservative treatment with anti-inflammatories and mild opiate treatment. Any suggestions for a treatment she could discuss with her doctor besides dangerous immune lowering drugs or massive amounts of opiates? Thanks for the help.

Alabamatrucker

AT:

Marfan syndrome is an inherited disease of the connective tissues of the body. Connective tissue is EVERYWHERE and in Marfan's patients, it just doesn't work right. This can cause a lot of pain, but also other things like heart and lung problems.

The shot that they're talking about could be a cortisone shot, but I bet they're talking about "tumor necrosis factor blocker", like Enbrel. Those are generally used for rheumatoid arthritis or "ankylosing spondylitis"...I've never heard them used in Marfan's, but just because your GF has Marfan syndrome doesn't mean she can't have an inflammatory arthritis that could be treated with Enbrel (or one of its cousins). I've had lots of patients who were on TNF-a blockers who did very well; they do make you more susceptible to infections, though, and if you have an infection of some sort you have to stop them. You're absolutely right to not take this kind of thing lightly, but if she's in a lot of pain and the rheumatologist thinks it would help, it'd certainly be a non-narcotic option. Insanely expensive, too, but a lot of insurances will pay for it if you have a covered diagnosis. go to http://www.enbrel.com

Alternately, pain management is do-able...just be sure she tells them that she doesn't want to overdo it on the narcotics; they may have some great non-narcotic options if she pushes them.

You said "suboxone doesn't work for her"...given that it's generally used to treat drug addiction, is there something else you're not telling me?

hope this helps,


your pal,



steve

[alabamatrucker]

Thanks Dr. Steve, this helps. They actually wanted her to try the enbrel shots but her insurance would not cover it and we didnt like any medication that lowers the immune system. Actually she tried the suboxone for a few months at my suggestion for pain , i know it works good for me but it didnt seem to really help her. Maybe she is deadset on wanting opiates. I dont think thats the case but you know how opiate fiends are. I use to be the number one alabama opiate fiend and after breakin my spine i found that suboxone works as well on my pain as methadone and all the other shit does, so i have been on it for over a year and feel much better. Im sure something will work for her. I think you might be hitting the nail on the head with the opiate seeking. I might be wrong but i think your getting close to the truth. It seems like nothing works for her but usually thats the sign of a opiate addict. Thanks

AT

[Dr Steve]

Thanks Dr. Steve, this helps. They actually wanted her to try the enbrel shots but her insurance would not cover it and we didnt like any medication that lowers the immune system. Actually she tried the suboxone for a few months at my suggestion for pain , i know it works good for me but it didnt seem to really help her. Maybe she is deadset on wanting opiates. I dont think thats the case but you know how opiate fiends are. I use to be the number one alabama opiate fiend and after breakin my spine i found that suboxone works as well on my pain as methadone and all the other shit does, so i have been on it for over a year and feel much better. Im sure something will work for her. I think you might be hitting the nail on the head with the opiate seeking. I might be wrong but i think your getting close to the truth. It seems like nothing works for her but usually thats the sign of a opiate addict. Thanks

AT

Suboxone is a really cool medication for people with pain issues who are also addicted to opiates.

Hmmmm...I'm not sure what you mean by me "hitting the nail on the head"...I wasn't trying to imply that she's seeking narcotics, rather the opposite, actually. What I was trying to say is that the pain docs won't push opiates on her if she just tells them up front that she'd like to try non-narcotic approaches to her pain. They'd find that quite refreshing, actually!

Good luck man, and listen for your audio question on the December 27th Weird Medicine...you were the first to call in!

your pal,


steve

[alabamatrucker]

OK Thanks a million dr steve. I will be listening and im excited. Merry Christmas

AT

[Billy Staples]

RE: Suboxone. sorry if I cut in DR. Steve. It is not readily available. there a limited amount of scripts allowed to be written for it or was allowed Yes it it issued for people with addictions, but not just that alone. If I am correct Dr. Steve, its not the 'magic pill' that addicts, alcoholics and other people who are not addiction prone usually need or get

One good thing to remember when you worry about the addiction possibility. If she has a past or not, whatever pain med she gets put on if any, does not cause an addiction itself to the pill. Yes there can and might be physical symptoms so a tapered withdrawl is best. You (in my opinion) are not addicted to the pain med, you are addicted to the relief it gives you from the pain. Especially Chronic.

there are implants that they put in your lower back or butt area that release a certain amount of meds so often. You might even look into the Fentanyl/ Duragesic patch. Which unless you are hardcore and open up the ones with the reservoir and shoot it, or cut it and use lemons I believe and suck on them, they almost impossible to abuse. The death rate from Fentanyl is very high, not only due to its strength, around 100x that of morphine, but the abuse that some people use it for, It is that strong.

Certain companies, names withheld are working on patches for the inner mucosa? (help me out there Doc) or the inside of your cheek that you put there for a short amount of time with fentanyl, bipuvocaine or something similar. there is even a spray mist right now in the EU and Asian countries that have the mist spray approved for insulin needs instead of daily injections. It has filed a NDA (new Drug Application) in the USA with the FDA for approval. It apparently has showed amazing results in diabetes types 1 and 2
(GNBT, purely speculative)

If interested, it is their patented delivery system through their subsidiary Antigen, that is being looked as a quick relief for cancer patients with prior mentioned drugs like Fentanyl. right now severe Cancer patients only choice is with the above is the 'lollipop', which patients suck on loaded with the drug. Many patients are too sick or in too much pain to even do that. now they are talking this Spray or inner cheek patch for such problems.

OK, I am sorry for going off course. I was just saying that there are opiate alternatives out there that are difficult to abuse. In addition, narcotics are only given 30 days at a time and no refills.

Dr. Steve apparently knows much more about the injections than I, but L5-S1 is the main area for back, pelvic and paraspinal issues. I have had cortisone in lumbar and cervical areas many times now. I also have enjoyed trigger point injections surgically under fluoroscope and weekly ones with small needles and lidocain. I have had epidurals in lumar and ceervial ( if called the same in cervical). I just finished my 3rd go round of nerve blockers and am scheduled for a (gulp) another radio frequency nerve burn or whatever. I just call it painful. It is also my understanding that a rheumatologist is a specialist in rheumatoid arthritis, a much worse form of than the more common degenerative, old age, years of use and abuse kind. I think it is actually an autoimmune disease. Which are not really understood, but for some reasons the body starts attacking itself with an abundance of white blood cells. This leads to many pain issues, especially, well in cases I've seen neurological. A good example, one that I understood was MS, multiple sclerosis. Sclerosis is a word for scars. so multiple scars appear in the brain as lesions and depending on the location and enhancement of not can lead you to a diagnosis if they keep growing or glowing. This is an example of the body basically hurting itself. Autoimmune is not known why, but its major trouble is there's not a clear test for many of them. some blood tests yes, Lyme, if they test for all forms, Sjodrens?, the gluten one (sorry) and a few others. Many Auto's are diagnosed by trial and error and ruling out others and making the most intelligent decision you can with the info presented.

Dr. is Marfan the disease with the rounded face,and thyroid issues?. from that picture of his g/f, she looked like she had a pretty, and I mean pretty as good looking, narrow look facially.

My God, you're getting a consult from a recovering addict/alcoholic and you didn't ask for one from an unqualified person. I guess I watch to much Houseand lived too poorly.

Regarding Pain management Dr.'s These Docs aren't just script writing fools, at least the good ones aren't. they might use pharmaceutical therapy, along with injection that Dr. Steve mentioned, Physical therapy, hydro-therapy, exercising and some acupuncture and chiropractic actually. they are anesthesiologists by trade and than receive specialized training in 'pain management' Plus, it is getting real east, even for myself and others to spot the 'frequent flyers' which I am sure they do. It is not unusual to want something stronger, especially if you used something milder like Tylenol #3 or similar. Careful with the hydrocodones though as they all come n compounds with Tylenol. so depending on the issues, discuss the amount of Tylenol with your Dr. as it can mess with your liver.

Just ask questions, do to different pain docs, mine is excellent, suposedly Noth Shore in Syossett, right above the stomach staploing doc is supposedly excellent, but ifyou do feel you need meds, he might not be your choice. Look around, ask around, ask other patients, call your insurance co. if you have one. WORD of mouth works best. I don't know where you live, so there must be someone somewhere, especially if there is a hospital nearby.

Dr. Steve may confirm this that if it gets unbearable pain wise go to the e/r. Only if it is a 10 on the pain scale as you don't want to get labeled a frequent flyer

God luck to you both and its cool to here the suboxone works for you.

Dr. s, sorry if I stepped on any toes, I tend to ramble.

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c'mon you knew it was coming eventually. Plug whore that I am






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[drusilla]

Dr. is Marfan the disease with the rounded face,and thyroid issues?. from that picture of his g/f, she looked like she had a pretty, and I mean pretty as good looking, narrow look facially.



people with marfans are usually pretty tall, or at least taller than the unaffected members of their family. usually they will be pretty thin & have a long narrow face.

[james1]

HI,

There are people who are affected by it who have had multiple heart and eye surgeries by the time they are 15, and there are people like me, who know only that we tend to be tall and thin, have bad knees and a bad back, and have a fast heart rate. For some people with Marfan Syndrome, their lives are dictated by it from a very young age.
But for others, it means exercising more moderately and taking beta blockers once a day until age reduces the flexibility of the heart valves or the aorta, upon which point surgery is performed.


Thank you...