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    Old 01-20-2007, 05:05 PM   #1
    Kissa
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    Change in medications

    Hi all I have a question or two.
    I was previously on MS Contin for 3 years at 90 mg. Just prior to my hip revision in August the doctor increased it to 120 mg. After the surgery I wasn't getting any relief being back at the 12 hour schedule so the doctor again increased my medications to 180.

    In the last few weeks my pain levels have shot through the roof to a level I've not quite felt before. I was unable to get out of bed in the morning and walk. Even after my regular dose of 60mg I wasn't getting any relief at all.

    I saw my PM two weeks ago and he decided to put me on the Fentanyl patch as opposed to increasing the MS Contin. He put me on the 100mcg patch.
    According to conversions it is on the high side, however, if you read the insert it does say that 50% of the patients do require an increase after two weeks.

    At first it was causing some insomnia but now I am finding after my 3rd patch that I am extremely tired. I can not stay awake. It's about as bad as when I was on Methadone. Has anyone else experienced this? The first patch I was actually have severe insomnia issues, the second patch wasn't so bad, I had one day of insomnia and two without. I've done nothing but sleep these last two days and it's not like I'm just tired, I'm so tired I can't keep my eyes open and my body feels lethargic.

    The other thing I don't understand is my pain levels are really out of wack now. There are times when it is low but times it's pretty severe, especially after 48 or more hours. I know the patch does peak around 17 to 24 hours correct? All of my joints are really hurting, this is definately not normal for me. When on the morphine one or two joints would hurt but now they all hurt. I also found it doesn't take much at all before my back starts screaming.

    Unfortunately my doctor does not prescribe bt meds other than Ultram which I can not take because I am on Cymbalta for depression and nerve pain so I'm stuck.

    At what point do my serum levels actually become more consistent? Shouldn't my pain levels become more consistent or will it get better once my serum levels level off?

    Any input would be appreciated.
    Thank you!
    Barbie
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    Old 01-20-2007, 07:29 PM   #2
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    Re: Change in medications

    Hi Barbie--
    Sorry for all your trouble and pain--I may be able to answer a couple questions for you, I am also on the Fentanyl patch 100Mcg--which is the largest manufactured--Can I ask first if you are using the Mylan brand or the Sandoz brand or even perhaps the name brand? When I first started the patch, I had very similiar experiences--night sweats, insomnia etc--It was several months before I felt fairly normal. Recently tried the Mylan brand and they did not work well for me at all--In fact, there are a couple threads on this board pertaining to exactly that issue. Why wont your dr prescribe B/T meds? Everyone is different, but most dr's seem to understand that some people need them more than others. I get oxycodone 5/325 (Percocet)--usually go through 100 every couple months--Day 3 is hard for me, so am going to try and get dr to prescribe every 2 days rather than 3 (My old insurance would only pay for 10/month, but new policy will pay for 15/month)--These patches as you know, are expensive. I would definately let the dr know what is happening--keep a log and show dr when and what symptoms you are experiencing and see what he or she says. If you are on the Mylan brand--change to the Sandoz as most people would agree are far superior. Others here can offer more and probably better ideas and they will chime in I think--Good Luck--Roger

     
    Old 01-20-2007, 10:44 PM   #3
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    Re: Change in medications

    I am on the Mylan brand because the Pharmacist indicated that the vast majority of her patients prefer it because it sticks better than the Sandoz.
    I can get either and what I could do next month is get one box of each and see which is actually better. She did indicate she does carry both brands and I'm sure she won't have a problem splitting brands. They've done it in the past when they didn't have enough of one product so I'm positive she'd do this for me.

    Everyone's doctor is different, not all doctors believe in BT Medications or if they do it's minmal at best. BT meds are only of course to be used intermittently but some patients use them as part of their daily regimine therefor defeating their purpose.

    He had me on Ultram, the strongest he'll prescribe but took me off of it when I went on Cymbalta because there are known issues with seizures with certain or some anti-depressants and Ultram. This is why I got my previous increase in October to 180 mg of MS Contin.

    I don't have insomnia now, currently I can't stay awake is the problem!

    I'm hoping things will settle down once my serum levels are steady. I may not be able to go 3 days with the patch. What concerns me is that it was a big jump to go from the Morphine to the Fentanyl so I figured I'd be pretty pain free, at least better than I was previously. It's not happening and it's frustrating.
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    Old 01-21-2007, 05:59 AM   #4
    whitfield
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    Re: Change in medications

    All I can say is the Sandoz brand works well for me whereas the Mylan brand do not (wish they did because they are smaller and seem to stay on better)--As far as your being tired all the time, that may be fairly normal--at least it is for me--I try to take a short afternoon nap and that helps--probably not possible for you if you work or have kids--Hope someone else here can give you more ideas--Good luck--Roger

     
    Old 01-21-2007, 07:11 AM   #5
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    Re: Change in medications

    I also have trouble with your pharmacist indicating that "the vast majority of patients prefer the Mylan brand"--this is simply not the truth--just a quick look through these and other boards will completely contadict that statement--In fact, quite the opposite is true--The pharmacy does make more profit on the Mylan brand and in fact some people do prefer them--but not many--I like your idea about trying both--I did--see for yourself--but it will cost more for the Sandoz (well worth it to me)--Roger

     
    Old 01-21-2007, 08:04 AM   #6
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    Re: Change in medications

    Hi Barbie and Roger!

    I have to agree with Roger's last statement. The VAST majority of people do really BAD on the Mylan type patche. Now, I know everyone is different and there are people who swear by the Mylan. But, in my personal experience and from what I have read of others experience, the VAST majority have serious problems with the Mylan version.

    When the generics first came out, I was so excited to be saving money, The pharmacy gave me the Mylan generic and had major withdrawals. I even contacted the FDA, and had to fill out tons of paperwork to try to get them removed from the market.

    Now, I only buy the brand name Duragesic and it does a little bit more, but I NEVER want to go through those horrible withdrawals again.

    Take care,
    Cpapp31

     
    Old 01-21-2007, 11:38 AM   #7
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    Re: Change in medications

    Hi Barbie~
    I remember when i went from the 50 to the 75. It was horrid. I was so tired, and I remember feeling jacked and tired and wired at the same time. The one thing i remember was that I felt like an elephant was on my chest and I couldnt ever breathe. My doc swithed me back to the 50s and after a few days I felt way better. It can take up to 15 days for the patch to really stay level in your system, on a constant basis. I use the Mylan because they are less expensive, but my try the others next time. Actually today is one of the first days Ive had really good pain relief for a long time with the patch. I havent had to take any b/t meds since yesterday and Im on my second day. I do get to change mine every 48 hours though. Im sure that really keeps it level for me, I couldnt go thru the drop in the last day of the patch and then start over with the jolt on the first day. Changing every 48 has been a blessing for me. Good luck, let us know how you are doing~
    xoxoxoxoxo,
    IZZY'SMOM

     
    Old 01-21-2007, 12:47 PM   #8
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    Re: Change in medications

    Thanks for the feedback. It may very well be the brand then. All I know is I am in constant pain and since I started actual Pain Management 3 or 4 years ago I haven't had pain so consistantly bad. I mean I'd have a day or two but this is every single day and it is getting worse which is why I am concerned.

    When on the Morphine prior to the problems I started having a month ago, my pain level when on the good side would be maybe a 5 on average, somedays where a little better, some worse. When the pain was at it's worst just before taking the next dose or in the morning it could be anything from an 7 to a 9. It fluxuated so much because I have so many different health problems causing the pain and now it's like I'm a constant 7 or 8. Again one would think with the conversion I'd have less pain. The second day was the only day that I had an acceptable level of pain control.

    I did ask the Pharmacist about the brand and this is what she believes. They are usually pretty up front with me. The reason she believes this is because they do stick on better. The problem is going to be is if she lied and doesn't have both brand. I am leaving for Puerto Rico the day after I get my refill so I don't have time to find someone else to fill the prescription or wait for the other brand because I will be gone 10 days to see my parents. if I tell my doctor I will be going elsewhere he won't have a problem with it, he's really good like that. Maybe what I can do is call them about a week ahead and see if they really carry it without telling them who it is or just call the Pharmacist and be up front with her and have her specifically order it for me so that it's there when I go in for the refill.

    I know that the pharamacy across the street, which is cheaper and really nice, said that he'd be willing to start carrying my Morphine because I am unhappy with the other Pharmacy when I stopped in one day and talked to their Pharmacist. I could ask them what they carry or if they can get the Sandoz and how long it would take. Then I'll just let my PM know and it shouldn't be a problem.

    There's a woman there who treats everyone really bad at my regular pharmacy and they are all aware of it but because they are short staffed they can't fire her and I'm tired of being treated like crap everytime I go there. One day I took in my MSC after going there for some 3 years every month she looks at me and says in a nasty tone "I don't think we carry this let me ask the Pharmacist". I was like what? I've been here for years I know you carry it.

    The only other thing I can think of in regards to being tired (if it isn't the medication) is that when I was on MSC for 3 years I barely to never slept because it cause such extreme isomnia. I've tried all sorts of combinations of sleeping meds and xanex but nothing worked. Since the switch, other than a few days at first when I most likely still had some morphine in my system I and couldn't sleep and now sleeping is all I seem to do! Perhaps my body is so used to being in an awake state it can't handle it? Sounds crazy but I just can't figure it out.

    My children are adults so sleeping isn't an issue but I don't want to sleep my life away, then again with this much pain I'm not very happy being awake. It hurts to sit up for more than a half an hour. I have to push myself to do anything. I'm sure you all know the feeling.

    Other than switching brands I think my only other option is to go back on the MSC with another increase which gave me much greater relief. I've already tried Methadone and it wasn't the medication for me because it really caused drowsiness. I was sleeping some 18 hours a day and I couldn't drive or do anything and I had all kinds of side effects I couldn't tolerate. Thank goodness I wasn't working, I would of been in real trouble then.

    Oxy is not an option because he refuses to prescribe it. Again, each doctor has their own opinions on the medication. I'd prefer not to be on it because it wreaks havok with my stomach. I haven't heard anything good about the new medication that has come out, everyone on the board has said it just didn't work for them.

    I'll have to check on the cost of the Sandoz brand, my copay for 10 patches was around $65. I do not have a problem paying more if the medication actually helps me to feel better!
    Until then I'll have to keep drudging away.
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    Old 01-22-2007, 09:30 AM   #9
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    Re: Change in medications

    Hi Barbie,
    I have read through all the posts and I'm wondering how many different meds you've tried. I, myself, am SO very lucky to have a doctor which lets me just keep trying different meds until I find one that works. You name it, I've tried it. Vicoden, Norco, Dilaudid, Kadian (sustained-release Morphine), Methadone, OxyContin, Fentanyl.......whew! I'm now on Oxycondon IR. I have found that I cannot tolerate the sustained-release medications (ie., Kadian, Oxycontin and Fentanyl). Like you I found that I couldn't even hold my eyes open!! It was HORRIBLE. Who could live their life like that?!! Thankfully my doctor agreed and is always willing to let me try something different. I got all the way up to 150 mg of Fentanyl (the Sandoz brand). I would put a 100mg patch + a 50mg patch on. What a pain! They totally irritated my skin AND like you said, the worst part was that I couldn't even keep my eyes open. I wonder why your doctor doesn't feel comfortable letting you try Oxycodone. Anyway......for me I find that the long-acting, sustained-release meds are that problem with making me so sleepy. A constant level of drug in my system just doesn't work for me AT ALL. It sounds like this might be your problem also. It was the same with the Methadone. Man........I just couldn't keep my eyes open. I have just started on the Oxycodone IR (immediate-release) because I discussed exactly that issue with my doctor. I was on Norco for approx. two years, but had to keep increasing the dose in order to keep adequate pain relief and I didn't want to be taking that much acetaminophen anymore. The Oxycodone does make me a little sleepy, but NOTHING like the sustained-release meds. I'm wondering if your doctor would feel comfortable prescribing the Oxycodone as opposed to the OxyContin. In my opinion, if the Fentanyl is not controlling you pain by now............it is NOT going to work. My [removed]drug handbook says that the drug reaches it's peak at 1-3 days and the duration goes anywhere from 48-72 hours. If it is not giving you adequate pain releif by now........FORGET ABOUT IT. You need to move on to something else! I have to say that I was SO, SO terrified to change from Norco to Oxycodone because the Norco was the only med that gave me good relief WITHOUT have to pry my eyes open with toothpicks! lol But.....so far.....the Oxy is working wonderfully for my pain. Like I said, it does make me somewhat tired, but not anything like the sustained-release meds (ie., Fentanyl which releases 100mcg/hour) Fentanyl does have a short half-life, but still, it releases a constant level of med every hour and you sound like me in the fact that this makes you too tired. I'm rambling now but I just wanted to give you the idea of Oxycodone. Maybe your doc will give it a try. It never hurts (no pun intended )to ask. You must be honest in the fact the the Fentanyl is not working for you. Your doctor is not a mind-reader and if it is not working there is no need for you to suffer! Sorry for the long post and I hope that helps. Write if you have any other questions that I may be able to help with.
    Lisa

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    Old 01-22-2007, 09:47 AM   #10
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    Re: Change in medications

    Hi Barbie--Sure hope you do try the Sandoz brand and that it works well for you--But if not, I have another idea. A friend of mine with a bad back had tried patches, oxycontin and could not get relief, so he tried various other painkillers and found one that he now uses and has been using for 3 years--It lasts for 24 hours and comes in a pill of some sort--Anyway, it is called Avinza--If all else fails for you it may be something you want to try--ask your doc. Let us know how the Sandoz patch works for you if you do get them--they gave me back a life--even if they can be a hassle with coming off occasionally etc. Good luck--hope your feeling better soon--
    Roger

     
    Old 01-22-2007, 12:44 PM   #11
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    Re: Change in medications

    Im going today to get the sandoz and give them a try. Hope they work better, i had them once and I cant remember. It cart hurt to try!
    xoxoxoxoxo,
    IZZY'SMOM

     
    Old 01-23-2007, 08:17 AM   #12
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    Re: Change in medications

    Thanks for all the advice. For those who are newer and don't know me, I've been a member here almost 3 years. I have gone through 14 varioius surgeries, mostly serious ones such as multple hip replacements, cspine fusion and knee reconstructions. I have Ehlers Danlos Syndrome type 3 which is excruciating as well as Osteoarthritis in all of my joints, colitis, IBS, CFS, FMS and my lumbar is herniated from L1 - L5, my tailbone is also "loose". Meaning basically it moves around, this is a result of having EDS.

    I haven't been real active on the boards lately as I'm either busy or too tired.

    I have suffered from Chronic pain since a young girl which first started with arthritis in my hip and knee. Back then doctors first started me on aspririn for many years which was a bad choice because it burnt a hole in my stomache.

    Around age 18 I started on Darvocet along with anti-imflamatories. I was on that for several years with muscle relaxers added over time. During periods of surgery I was generally on Vicodin or Percocet.

    In my late 20's / early 30's I went on Vicodin full time, this was before PM's really existed if you will. I went through a pain management course and sought out psychological help. After being on it some 5 or more years obviously it wasn't cutting it as my health itself was getting worse and my Rheumatologist upped me to Perocet. I was on those for several years until I started seeing my PM about 3, almost 4 years ago.

    My PM kept me on the Percocet for about 8 more months and added some other meds like different muscle relaxors and a medication for MS which helps greatly with the muscle spams even tough I do not have MS. I also use a TENs unit, aquatic therapy in the warm months, Lidoderm patches and meditation and relaxation techniques.

    3 Years ago I was put on MS Contin at 90mg to start. I was on that for over a year or so when I went through a period, like now, where I did not respond. The doctor switched me over to Methadone. I was on that for a month when the side effects where too much. Not only could I not keep my eyes open I could not even go to the bathroom. My bladder would regularly become distended. I had a host of side effects. I was not the same person I was when I was on the Morphine.

    My speach was slurred, I couldn't remember anything and couldn't even function. I believe my dose was probably too high but regardless it didn't work out. I went back on the MSC.

    I was on that for another two years at 90 mg with Ultram for BT until I started back on Cymbalta. Because there are warnings to not use Ultram with anti-depressants the doctor immediately took me off of it and left me with nothing for BT.

    This is how he runs his practice. I don't know why he does not believe in any other meds for BT but he simply doesn't and I'm not about to push it as nearly all PM's in my area only do injections and I am not going that route again because my cartilage is totally shot in my knees and shoulders from injections over the last 30 years.

    Furthermore my doctor will not prescribe Oxycontin. There are many PM's who refuse to prescribe this because it is a highly sought after drug for abuse as opposed to MSC or Methadone. I asked him about this and this is what he told me.

    He said that it wasn't that he didn't trust me but that this was in fact his policy. Additionally stronger levels of Oxy make me quite sick as when my neck was fused I was on it for about two weeks then dosed down to Percocet again. At that point is when I sought out a PM.

    At one point I was on Avina and it was totally useless after 12 or more hours. This was during a period prior to doctors prescribing it twice daily. The reason I was put on the Avinza was because MSC makes me quite nauseous. I was put back on the MSC and given a medication to control the nausea which has helped greatly.

    After my hip was replaced I was having severe pain and so he increased my medications again in October to 180mg of MSC. He's been very good at giving increases because I normally do not ask for them. He works with me and I really do like him even if I don't agree with the BT situation. I try to work with him the best I can and am very realistic. I know that I will never have 100% relief and have known this since I was very young. EDS is a very painful condition that can not be surgically corrected.

    As posted before, in the begining of January I found I could barely walk and this is when he decided to try me on the patch, feeling it would give me better coverage and make my mornings better.

    When on the MSC I never had problems with being tired I had quite the opposite. I never slept. It is only with the Methadone that caused the severe sleeping problem. I was taking well over 150mgs of Elavil which did nothing for sleep. Most people only take 25 to 50mgs tops.

    I now take 1mg Xanex XR, 2 flexeril and 3mgs of Lunesta when on the MSC could sleep for 3-4 hours at a time. I've tried nearly every sleeping pill there is with no luck. I would take as many as 4 Sonnotta's at a time (prescribed that way by my doctor) and those didn't even knock me out. I would be wide awake 2 hours later and if you are not familiar with it, it is a strong but short acting sleeping medication. Since starting the patch I of course have lowered all doses and stopped the flexeril because I sleep so much.

    I put a new patch on yesterday and don't feel as tired today nor last night. I didn't sleep well at all, up every hour. What I'm finding is that it is the 2nd day or so that the tiredness sets in and continues until I change my patch. I do get a level of relief after a certain point but it doesn't last as long as I believe it should. What concerns me the most is that I just can't stay away.

    Thankfully I have a very understanding and loving husband who is there for me. He didn't complain that I couldn't get out of bed yesterday to cook dinner, he never does because he has days where he has a hard time too. We have a fantastic relationship and that really helps because I often use him as a sounding board as to what he thinks I should do and what he's noticed different about me. He definately lets me know if he notices a change in my mood or sleeping habits which is very helpful.

    I see the doctor in two weeks and I'm trying my best to wait it out. It is very imporant to me that I continue to have a good relationship with my PM and not have him feel that I'm not trying and willing to let it ride for the full month to ensure that it is or isn't working. I do find that the patch is less harsh on my bowels as the MSC is. The only real side effect I feel is the sleepyness and of course an increase in pain levels. Once in a blue moon I feel nauseous but it's nothing my nausea medication can't control.

    One thing I did notice for a patch that's supposed to stick better than the other brand I can only wonder what will happen with the Sandoz. I noticed when I took off my last patch yesterday it just fell off. I do put tape over the patch to help it to stay on just in case. I'm concerned if these puppies won't stick then the Sandoz will be even worse!

    Thanks for listening
    Barbie
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