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Note for Dr Choi |
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Subj: Medications Date: 5/27/2003 1:04:31 PM Eastern Daylight Time From: Westbridge286 To: JCHOI2@BICS.BWH.HARVARD.EDU CC: jchoi@partners.org Dr Choi, Please look this over when you have a chance. It's long and I included some important links, so I understand if you can't read it right away. Would rather you wait to get back to me so you have sufficient time to look at everything and give it some thought. >>>>I did email Dr. Schur and he also feels that narcotics are not the next best step for you. He feels you should really try the plaquenil to see if it helps your pain. He feels that it will. <<< If Dr Schur had been in favor of it, I would have been very suprised. I have been seeing him for over a year now, and three conclusions have made are 1) he's a very nice, concerned, knowledgeable rheumatologist that I was very fortunate to find, 2) he likes to stick to his area of rheumatology and avoid commenting a lot on other specialties, and 3) he has said he prefers to be conservative whenever possible. I think if I were standing in his shoes, I wouldn't think morphine or Kadian is the most conservative approach either. However, he's not a pain specialist looking at the entire scope of the problem, muscle pain would be his only area. That was why I went to a pain clinic in the first place, to look at the whole situation. The pain specialists I have met with have all agreed either of those medications will ofter me the maximum relief, with the least chance of persistent side effects like I've experienced before. >>>I don't feel comfortable having you start narcotics of any kind before you have given plaquenil a fair try. <<< I will try the plaquenil again, but as I said in the office, it's not going to have an effect on the main sources of pain, including the neck area, endo/cysts, and osteoarthritis pain. The only pain it may help is the muscle pain, and as I said, I would not need medication for that because it comes and goes on its own. It may also help the fevers, anemia, etc, but again, this has nothing to do with my reason for considering pain medication. I've provided some links below with drug information I read, for you to look over when you have a chance: Information about morphine: http://blueprint.bluecrossmn.com/dispensabledrugs?_DARGS=%2Ffdb%2Fdruglist_body.jhtml.2_A&_DAV=1497 http://www.usadrug.com/IMCAccess/ConsDrugs/MorphineSulfatecd.shtml http://www.medformation.com/mf/mm_usp.nsf/usp/202390.htm and information about Elavil: http://www.healthsquare.com/newrx/ELA1155.htm http://www.mentalhealth.com/drug/p30-e01.html http://health.yahoo.com/health/drugs/ela1155/1.html What I've summized by reading about both drugs, is that although Elavil obviously does not have the same potential for addiction as morphine, Elavil seems to have almost all of the common side effects of morphine (nausea, constipation, drowsiness) and actually many more of its own. Aside from avoiding possible addiction, which Dr Kulich and Sukiennik did not feel would be a problem for me at a low dose, I'm not sure exactly what the advantage would be of putting me on a less-strong medication that takes much longer to work and can cause the same, if not more, side effects than morphine. One site I read said that Elavil can take several weeks to become effective, whereas morphine would start helping right away. I've read that Elavil can have mental and neurological effects too. The main reason I did not want to re-try something like codeine is because of the mental affects. I want pain relief, but if it makes me fuzzy or unable to function normally, it will defeat the purpose. The only mental effect I've found in several morphine information pages is possible feelings of wellbeing or irritibility, that go away once you adjust to it. My friend Kim who I spoke of before is very sensitive to medications, but has had no mental or other effects while on low dose Kadian. In fact she feels she functions better mentally while on it, because of the reduction in pain. Pain can be very distracting and tiring when it goes on for hours and hours. I know that it affects my concentration and ability to think clearly when it gets bad enough, and at times when I have to concentrate like when driving or working, that is not a good thing. Most importantly, please look at this link: http://www.massgeneral.org/painrelief/mghpain_guide.htm This is a very interesting webpage that MGH itself set up re. pain options. I'd especially ask that you read the section, "What are some common concerns about pain medication?" Here, they address your concern: >>>"Simply using an opioid for pain relief does not mean you will become addicted. If you are using these medications for pain, you will be able to stop using them when your pain goes away. Less than 1 in 1, 000 people will develop an addition problem with pain medications.Should 999 people have horrible pain because we worry about that one person? No Even if you do develop a problem with a medicine, we can help you." <<< >>>As I keep stating, I don't feel comfortable being pressured into writing prescriptions for narcotics. I hope you understand. I do want the best for you and for you to feel better, but I don't agree that this is the next best step for you.<<< I know you want what's best for me, I've never questioned that. I do understand, and that's why I was hesitant to bring this up to you in the first place - I did not want to put you in a position and it was never my intentions to make you feel pressured. When I did ask you about it the first time, I thought your wanting me to be evaluated at a pain clinic first was certainly reasonable. When you later told me you would never consider prescribing it, Dr S and K suggested I talk with you about it again and ask you to reconsider, but I told them that you werent comfortable with it and that I wasnt going to keep asking. And I didn't. After the last email you sent me saying you'd never be able to prescribe it, I apologized for bugging you with it, and you said it was ok and you were just explaining your policy on pain meds. I did not bring it up again. Thats why I was so suprised when I came in to see you the day of Dr Zuckerman's appt in April....we were going over other things, then you asked me what was going on with the pain med, asked me how the pain was affecting my functioning, and then said you would consider prescribing it if Dr S would go over it with you. Even though it wasnt a definite, I still felt encouraged that you'd brought it up and you said you'd take another look at it. Then when I came back before you went away, you said you were hesistant again, but that we'd work it out when you returned, and I was hoping we could. Then when we talked Fri I thought we came to a good conclusion, and was looking forward to trying it and seeing if it helped. Then I came home and got your last email. I thought that asking you to prescribe it for just a temporary period while I persist in finding a new pain doctor was a reasonable compromise for everyone, taking all circumstances into consideration. That way you wouldn't have to feel responsible for keeping me on it for a length of time, and would know I'm activey working to get hooked up with a new doctor to take it over...but I could hopefully have some much needed relief in the meantime. A serious addiction would surely not become a problem over the short span of time you'd be prescribing it....Dr S said I'd have to be on it a long time before it becomes an issue, and my dose would have to be higher . Since I was not planning on continuing to go up in dosing if its not working, I'm not sure how this would ever become an issue. I told Dr Sukiennik Fri why you're hesistant to prescribe it, and he said he'd be happy to give you any help or guidance you need re the dosing, side effects, safety, etc, now and after he goes to St E's in June. Dr Kulich said he's happy to talk with you, and had no problem with me taking the medication. I forgot to mention before to you that Dr K also holds opioid maintenance groups at MGH for patients, which I would be happy to attend if it made you more comfortable. Dr Andrew continues to see me, and would continue to while on the medication. I know you said you're afraid of me becoming addicted, you said I am young and have a lot of living to do, but the fact is, a lot of my time is being wasted now because of the pain. I push as hard as I can, but the fact is there are a lot of things I can't do. When the pain got worse back in Nov-Dec, I considered pain medication in hopes it would bring me some relief. I then had to wait two months to get into the pain clinic. It's now almost June. A half year of my life has gone by and I've had no relief. I think you can understand how the idea of waiting another two months must feel to me. Two months may sound very compact and easily managed, but I see it as about 60 more mornings, afternoons, and evenings that I have to be in pain unnecessarily. What's even more frustrating is that I know there is something I could try to take to help me feel better, but no one will give me a chance to try it. I know you probably have seen some awful cases of addiction. But as you agreed Friday, not everyone who goes on it would be addicted, and I really feel I'd be one of the ones that would not. I think MGH's own site reaffirmed that very well. I have used pain medications before and never became addicted. I got off them as soon as possible. I've never had any addictive behaviors whatsoever...I don't drink, smoke, or gamble. I don't have any unrealistic goals about taking it...am looking for a management tool, not an escape method. I am a very cautious patient as you know, especially since the Lupron. I have researched the medication thoroughly, talked over possible effects and risks vs benefits with two pain doctors and two pain psychologists. I have taken and would continue to take all possible steps to avoid addiction happening. Even say absolute worst case, say I did end up to be that one in a thousand and got addicted despite being on a low dose for a fairly short time....like the MGH site said, it can be dealt with. It happens slowly, not overnight. I am constantly being monitored, and I feel completely assured that Dr S or the pain doctor I was working with could help me work off of it in whatever way necessary. The chances of that happening are slim anyway, but it is responsible to consider worst case and know that it's manageable if it did happen. And to also know that I've taken plenty of steps to prevent the slight chance. I would be staying on a low dose and stopping if it didnt work rather than increasing, working on finding a new pain doctor, continuing to see my pain psych, going to the opioid meetings if necessary, keeping in contact with my other doctors, and progressing with physical therapy and the surgery as soon as possible to work on improving the situations causing the pain. I was thinking the other day, I do not understand why patients are permitted to make their own decisions about things like potentially life-threatening surgeries, serious medical treatments like chemotherapy (talk about side effects) but they cannot make the decision of whether to take pain medication when they've been well educated and weighed the risks. I understand there is a risk of addiction, but when patients consent to those surgeries, they understand there is a risk of death. If doctors feel patients aren't equipped or educated enough to make decisions about medication, I am not sure why they allow them to decide about procedures that could end their lives. Maybe I'm just thinking too simply or there's something I am missing out on here, but it seems to me that either way, it's still the patient's life and body, and they are ultimately responsible for the decisions they make. If a surgeon does everything he can to save a patient during a surgery and ends up losing him, it's not the doctor's fault. If a doctor educates a patient about pain medication , and he ends up getting addicted, the doctor did all he could to inform the patient and it's not his fault either. The patient is still the one responsible for taking it. It's like with Lupron. I never for one minute blamed Dr Zuckerman for what happened with me. In this case, she and I had no idea of the long term effects it would have. But when it comes down to it, I was the one who made the decision to take the medication, for better or worse, and I am living with the consequences of my decision. Anyway....I was hesitant sending this to you because I didn't want you to feel more pressured, but you did say you wanted to talk about it more, so I wanted to share these final thoughts with you. I say "final" because I am not going to bring this up again after this email, unless you do. It's bad enough to be in pain like this, I do not have the energy to keep trying to pursue pain relief. I have been willing to jump through whatever hoops necessary to get some relief from this, but I don't think there's anything else I can do on my own. If you would reconsider doing this for me, I would greatly appreciate it. I would not be asking this of you, and certainly would not have persisted like this, unless I really felt it was necessary. I think if you willing to do it, it would work best to let Dr Sukiennik do as he orginally planned rather than having you write me a prescription. That way he will deal with it if I need adjustments or have problems with it. All you'd need to do is call Dr Sukiennik and tell him you're willing to pick up on it. He would start prescribing the short acting morphine for a week to see if I tolerate it, and if I do, he will switch me to Kadian. He will then adjust the dose and you'd pick up when the first cycle is over. While a short-acting form would certainly be better than nothing, both the MGH website I directed you to, and Dr S say that these pain medications should be taken regularly, so an extended release is easier for this purpose. Kadian seems to be better tolerated, has no greater incidence of addiction, is safe, spaces the medication out evenly, and lessens the chance of side effects. In actuality, it occured to me that if Dr Sukiennik start me out with a month's prescription, it will last me until the beginning of July. So rather than having you prescribe it for two months, you'd only need to pick it up for one month or less. That's 3-4 weeks. I believe he would call or email you to go over the details with you at this point. I really have given this a lot of thought, and I really do not think it's an unreasonable request for such a short time period....especially since Dr Sukiennik will take care of all the "technical" issues of adjusting and setting up the dose, and will be around if either of us need him after. I really hope you can help me with this, and will look forward to hearing from you when you get a chance. thanks. Kimberly ADDENDUM 6/17/03: Please review this note and check the links and I will be in to see you Thursday afternoon. I tried to come in last week but was not able to make it. Time has passed since I sent the message about this, so I wanted to add two things. Number one, I would like Judy to set an appointment for me at the Spaulding Medford location, in the opiod maintenance program. Dr Kulich informed me that Spaulding on Nashua St rarely deals with medications, so I want to save my time and effort and go somewhere where I'll have the most chance of being able to keep taking the medicine. The second thing is, Dr Sukiennik will be leaving next week, and he is only in one day at St E's thereafter. I can page him or his stand-in if I run into problems while on the medication, but it will be more difficult to get this coordinated once he's over there. If you are willing to cover the med after one month until my Spaulding Medford appt, please try to reach him today. He works Tuesdays and maybe you could page him if the office isn't being helpful. Thank you Kimberly |
