Starting MS contin - What scares me

[Kira]

I guess I should tell you the short version of my medical problems. I have a metabolic myopathy (my docs think it is a mitochondrial one). That means that my muscles, along with other parts of my body, don't process and use "fuel" correctly. I get recurrent attacks of rhabdomyolysis, which is when some of your muscle tissue dies, on a large scale. When that happens, I have a lot of severe pain and weakness, but also there is a danger of kidney failure from a protein called myoglobin that is released by damaged muscle cells. Myoglobin is toxic to the kidneys. Plus, rhabdo messes up your electrolytes, which can be dangerous/life-threatening. So when I get rhabdo attacks, I usually have to go to the hospital.

Here are some links about rhabdo if anyone is curious:
http://www.spiralnotebook.org/anatomyofanattack/index.html
http://members.tripod.com/~baggas/rhabdo.html

It often happens that I get attacks that are not quite rhabdo but are nonetheless very painful and that may progress to rhabdo if I don't intervene. Also, I have milder background, day-to-day pain that is hard to treat. My other medical problems are pretty much related to my metabolic disorder... some problems with metabolic acidosis from intermittent proximal renal tubule dysfunction, as well as some mild cardiac and neuro stuff. I have anemia, too, and some issues with allergies and asthma.

So... after that background... we were having a hard time managing my pain, both the day-to-day stuff and the bad pain that comes with attacks. Before, I was taking a ton of ibuprofen, and had vicodin and tramadol at home which I used with the bad attacks. If I was doing really bad, I was at the hospital anyhow, and then we would use the "big guns" (IV morphine, IV dilaudid, PCAs, oxycodone IR, etc). This whole approach wasn't working, though. So my primary care guy, metabolic/genetics guy, and neuromuscular guy all agreed that I should go to the pain clinic. I finally went today.

The PM doc agreed that I can try some light physical therapy (my request, but she liked the idea). But she also prescribed some relatively heavy drugs and I am a little scared to start this regimen. She gave me MS contin to take every day and then oxycodone IR for breakthrough/atttacks. I am kind of hopeful about having less pain, but I am worried about a lot of stuff, too.

I am worried that it will affect me cognitively... I am in grad school and work, so it is important for me to be able to think clearly when I need to.

I am worried that it will make me too drowsy or out-of-it to safely drive, which is okay for these first few days and when I have attacks (because I stay home on the couch then anyhow), but I have no idea how long it will take me to get to the point where it doesn't make me worry about safety driving.

I am worried about issues of stigma if people find out that I am taking opiates on a daily basis.

I am worried about dependence (having to increase and increase the dose, and getting withdrawals if/when I stop). I am also worried about the chance of developing an addiction.

I get some annoying side effects with the opiates (nausea, itching) and am wondering how long it will be before those stop happening.

I am worried that when I get an attack of rhabdo again, the treating docs won't give me adequate pain management in the ER/hospital because I will have developed a tolerance from the MS contin and then the "normal" doses of pain meds won't be enough.

We are trying some nutritional changes and also doing some work-up to better define my specific metabolic defect right now. I am worried that if/when we are able to get my condition more stabilized, I won't need to be on these meds anymore, but by then I will have to go through withdrawals to come off of them.

I'm sure there is more stuff that I am worried about but I can't really put words to it right now. I got the scripts filled today but am hesitant about starting them because I am scared. What have you guys' experiences been like with the long-acting opiates?

[sallyb]

Don't know much about this kind of stuff, but my Rheumatologist just told me that the tylenol that is added in some of the opiates causes itching. For instance, a substance like Hydrocodone can be replaced by Fentanyl Transdermal patches. Don't know what can replace other meds...but, the doc does.

[A Chronic Painer]

Hi Kira,

In a way, you are lucky that your doc started you on MS Contin, and not OxyContin. For one thing, there is much less itching with MsContin, which you should appreciate. If you start at a low enough dose, you will hardly know that your even taking it. I'd imagine that your probably going to take 15mg, twice a day??? Thats a pretty good, low, starting point. any higher, and you might have a little drowsyness.

Didn't the pain doc explain how the drugs work, and that you will not become an addict, especially if your in chronic pain? An addict is someone who craves the high, on a daily basis. This will not be happening in your case, as your body really needs the pain meds. The brain will use the meds to control your pain, and you won't get a buzz. Trust me, you will not be an addict!!!! If and when you decide to stop taking the meds, you'll just slowly titrate back down, with very little discomfert.

Don't worry about the stigma, you don't owe anyone an explanation of exactlly what you are taking. It's your business, and you can let those who will understand know what your taking. To the rest, just tell them you are trying some new meds that your doctor has suggested. This goes back to the addiction thing. Don't let the meds freak you out, they can give you parts of your life back. I know that I'm able to "do life" with daily pain meds, much better, than with none !!!!!

You have a lot of issues, I just hope that I've been able to answer a couple of them. Your very fortunate to have a doc who will prescribe the MsContin, there are so many people in terrible pain who have doc's who will not help them!!!
Good luck & read, read, read :)

[Lucy]

Kira,

I have been disabled since 2001. My former pain management doctor started me on Vicodin and it did not work at all. I also tried Oxycontin in both the 20-mg and 40-mg strengths with Vicodin for breakthrough. He also gave me MSContin 60-mg every eight hours and MSIR 15-mg every 4 hours. Until late 2005, I was completely bedridden. I could not do a thing. In late 2005, I found a wonderful pain management doctor who actually wanted to help me get out of the bed. My full-time caretaker had to do everything for me. I was stuck in the bed 24/7. My new pain management doctor (the one I found a year ago) started me with one MSContin 100-mg every eight hours and one 30-mg MSIR every three hours. Over the past year, he has moved me up gradually to three MSContin 100-mg every eight hours and two 30-mg MSIR every three hours. It was a gradual process, and I found myself sometimes nauseous and sometimes vomiting until my body got used to the dosages my doctor set as a goal for me. He did not want me sitting or lying in the bed 24/7 doing absolutely nothing for fear that my muscles would become too weak and I would be bedridden for the rest of my life in my mid-40's. I have always been an opoid tolerant patient, so the amount of MSContin and MSIR I take would be extreme for a lot of people. However, after just over a year my doctor has gotten me out of the bed. I drive my car, I go to the grocery store and use their scooter, I go swimming, and I do other activities that I only dreamed about just over a year ago. I am also clear minded, even with the amount of medication that I take. I still have my full-time caretaker, because my legs sometimes become totally numb, give out, and I almost fell and hurt myself several times. He helps me in and out of bed, the car, scooters, etc. But, I feel like I have more of a life now than I used to.

I would not worry about becoming dependent on MSContin or the small amount of Oxycontin you are taking if you are in so much pain that you cannot stand it. MSContin and MSIR have never made me itch the way Vicodin/Norco, etc. did.

As for the MSContin generic version I take, it is made by the original manufacturer. I have tried them all, and I find it to be the best of the generics available. My pharmacist recommended it to me, and he orders my medications especially for me every month. I live in a large city, but most of the pain management doctors here will not prescribe you the amount of medication I take so that I can have somewhat of a life. I am very lucky to have found mine.

Lucy

[RustyD]

SOrry to see you here and hear of your conditions.. My first drug prescribed was MS Contin and I had no real side effects or sleepiness. Just the constipation.

It all depends on the dosage that you are started at. You are near christmas break from school, right? Maybe ask your doc to leave things status quo until your break and then start it. If there is any sleepiness it will go away as your body gets more used to the drugs.. That is if the dosage is not a Bomb of one..

Addicted, no... Dependent yes.. An addict uses drugs to get high.. And is always looking for a higher high.

As for what you tell your friends and family, that is up to you.. Maybe tell them nothing...

Good luck to you and your school work!!

[Kira]

Thanks for your replies. I think I am starting to get used to the idea of taking this. I started it on Wednesday and it was the first day in a long time that I had relatively little pain. I was still probably at about a 4 or so on the pain scale (out of 10), but a 4 feels glorious compared to the 7 or so that I have been living at. We will probably need to tweak the dose some, because I am still having pain, but at a 4 I can function so much better than I have in a long time.

One of the things I was scared about was functioning worse because of side effects, mental cloudiness in particular... but I haven't been very drowsy or "foggy" at all, and really the only side effect I have noticed is constipation. I got some colace when I picked up my prescription and have been taking that, but it doesn't seem to be working, so I will try something stronger for the constipation. A small price to pay for getting my life back, I think!

I still feel kind of uneasy about the prospect of becoming addicted or at least dependent... but I have talked to some people about it and I feel like I have a pretty good support system to help look for addiction and keep me accountable, and I feel like this is really something I need to do in order to get my quality of life and day-to-day functioning back, so I am going to go ahead and do this and just be careful, I guess.

So thanks again for listening to my fears and stuff...