Titrating baseline med up to eliminate breakthrough meds! Morphine/Fentanyl/Methadone

[Kara Isabel]

Hello!

I just got back from my first POSITIVE pain management appt in the last 3 months, he admitted the "experiment" to pull his patients off narcotics and put them on benzos only made his office crazy with about 500 phone calls calling and complaining! (My husband being one of them)

We went over several possibilities at my appt. But he says I will feel more stable if I can eliminate the rollercoaster of the meds wearing off and wants me to wean off my breakthrough meds this month (Norco 7.5 and Ultram) and Titrate UP my baseline dose of MsContin UP to the point where it controls all my pain, and then discuss the possibility of managing the pain with a stronger dose of long acting that thus would eliminate the need for breakthrough meds.

This sounds ideal to me, because even the 30mg MsContin wears off in about 4-5 hours and I only get about 2 hours of relief from the Norco, the ultram I don't get ANY relief from anymore, not sure why I even still take it.

But we went over some options like the Fentanyl patch, or Methadone, Kadian or Avinza. Which one of these meds do you think would work out best?

I just upped my dose to 45 mg of MsContin and skipped the breakthrough meds and seem to be doing okay so far, I'll probably shoot for 60 mg 3-4x a day and HOPE that that keeps the pain at bay without the need for breakthrough.

Has anyone else done something like this? I know my doctor is a very progressive pain management doctor, and I do like that about, despite the fact his experimentation has truly torchered me the last few months, he has opened the doors back to me to get the pain under control.

Of course it helped having my husband there, my doctor and my husband HIT it OFF wonderfully, they were talking and laughing so much the appt lasted OVER an hour! lol I'm glad they like each other, hopefully that will help me in the future if Rich (my husband) can't come with me.

I'm also pretty interested in trying methadone....I think I would rather try that than the patch or Kadian ( Kadian was the first drug I took and I didn't think it worked that well AT ALL) Is Avinza any better than Kadian?

If anyone can help me, or share their experiences with Fentanyl, Methadone, Kadian or Avinza I'd really appreciate it! Does anyone take one of these without the need for breakthrough meds?

Lots of hugs,
Kara

[GriffsMommy]

Kara,
I can't offer any advice as I have not been on any of those meds. I just wanted to say that it is great that you are going to get the pain management that you need!!:woohoo:

[IC SARAH-CPP]

Kara,
Whew, I am SOOO happy to hear this! I have been so worried about you!
My pain doctor is the same way, he pretty much refuses to give breakthrough meds to any patients. He prefers to up the baseline dose to a point where there are no breakthrough meds needed.
It has never worked for me and I think I am his only patient that gets breakthrough meds. It might not have worked for me b/c he wouldnt go high enough with my oxycontin, I am not sure. I do hope it works for you though.
As far as the other meds, I tried all of them. The patch really was not very helpful for me, I was allergic to the methadone, and the morphine gave me a headache! So we are all different. I think methadone is very helpful to alot of people here, I wish it would have worked for me. It has a longer half life, so I think that might be why it seems to work better for people.
Are you feeling any better yet? I hope so!
Sarah

[Sarojini]

As for the meds, it's really individual -- unfortunately, like with many things related to IC, it's going to be trial and error for a while

I take methadone with excellent results, although I still do need breakthrough medication sometimes (actually, more than my doc will prescribe, but I am not arguing because at least I get something and am functional ). I have not tried the patch, but methadone works better for me than MS-Contin (worked some) and OxyContin (did not work at all).

However, if you notice, Sarah does very well on OxyContin, even though it did nothing for me

[Kara Isabel]

Thanks ladies!

I really don't mind dropping the breakthrough meds if I can get the baseline meds up to a point where everything is controlled, it'll save me money at the pharmacy! LOL

I'm SOOOOO happy that he's coming back around and realizing that many of his patients need these meds just to FUNCTION. My husband called him Friday because he was so frustrated that he couldn't get me off the couch I was in so much pain.

I've been reading about the patches and methadone, it scares me that they both carry some risks! eeeks.....especially the patch, I know people DO take them successfully without any side effects, so I should be less paranoid, ehh?

Thanks for both of your support!

Sarah, I'm glad you are getting settled into paradise! Have you found a fabulous pain management doctor yet? Sounds to me like it'll be hard to find a better/equivalent one than your last doctor!

Hugs
Kara

[Kara Isabel]

Jen,

We must've been replying at the same time.

Do you have any side effects from the methadone? Does it make you nauseous or fuzzy headed at all?

Are the patches and methadone stronger than the avinza or kadian? Kadian really didnt' do diddly squat for me, I was on the 30mg for a few months and had horrid pain, even with breakthrough....so I think I will avoid that one if suggested again.

My doctor is anti oxycontin, he says that Oxy has the WORST rollercoaster effect of all the pain meds and wears off too fast for many people, so you end up chasing the pain with oxy, and I can see that to be true from what I've read here on people using oxy. Granted, it does work well for a few hours, but it wears off so quickly...so to him, he says its not optimal for chronic/round the clock pain. He says he only prescribes it to a few patients that don't respond to the other meds.

shew!

I'm just glad that he's willing to help me again!!!!!!! And I've paved the way for any future IC patients that may come his way in the future! I'm the only IC patient at the clinic.

Hugs,
Kara

[DaniBelle]

Yea!!!!!!!

Kara,

I'm soooo happy for you! I have been thinking about you everyday and hoping things would do a 180 for you so you wouldn't have to endure one more moment in pain. I tried to find that info about the Benzos (my pain mgt. doctor had told me about his research), but I couldn't find it...then I went through a bad spell with the FM and had bad IC flares every other day. I can't believe it's already April. These diseases just try to suck life away from us!!! I've been dealing with alot of anger lately, but on the good side, I'm seeing a very good counselor right now who works WITH my pain mgt. doc AND my Gyn. I feel like I'm finally in good hands because they are working as a team. Anyway, it's so wrong you had to suffer (along with many others in his care!) for the 'experiment'. I told my Gyn and she couldn't believe it...of course I don't mention any names. Regarding my experience with the meds you were asking about: Fentanyl: did the patches for about 2 months and didn't work for me. I accidently slept with my arm (where the patch was) on my heating pad..I got too much med in my system and had some respiratory problems, but didnt' have to go to the ER. My mistake. I just didn't feel comfortable knowing that there was 3 days worth of med. in that one patch and if it ruptured....I guess I'm a nervous, worrying person. The Avinza was good for pain control, but I had a problem with the 90 mg dosage...vocal cords swelled up, shortness of breath. Stopped the Avinza. I have been taking the MS Contin since then and only feel negative side effects if I get my doses too close together (I take 30mg, 3xperday). I also take Lortab, 10mg, 4xperday. The only problem is that I'm never pain-free. I would like to try something else, but my pain mgt. doc says if I increase the Contin, I will start having neg. side effects, i.e., nausea, headaches, etc.. and I don't want that. So, for now, he's just increased my Soma to 3xperday because the FM has really been acting up more than ever. I know I ramble on when I write, but I hope some of this made sense. Anyway.....sooooo glad you have pain control meds back. That doctor and his NP learned their lesson!


Keep us updated!


Dani

[IC SARAH-CPP]

Kara,
I dont really think you need to be scared with the methadone or patch,anymore than you would be with the morphine you are already taking. They all can have side effects but for me, the side effects are worth the relief I get from the pain meds.
I have to say I pretty much agree with your doctor about Oxycontin. I cant believe that it is given every 12 hours to some people! When I heard that, I just about fell over. It lasts about 6 hours for me. But I am allowed to take it 3 times a day and my doc gives me lots of breakthrough meds. So what I do is mostly take the breakthrough meds during the 3 hours where my oxycontin is not working well. That keeps me pretty even. Mornings are really bad for me. I think because even though I go about 4-5 times a night, it is still less than I go during the day. It sucks to feel bad everyday when you wake up though.
I hope that one of the long acting meds does work for you, if you end up switching. This whole thing can be so hard.
And no, I havent found a pain doc in Hawaii yet. I am so lucky my doc here will still manage my pain or I would be pretty bad off. There is a crisis with doctors on the island. They are leaving in droves. It sucks.
Sarah

[Sarojini]

Kadian and Avinza are both the same morphine sulphate that is in your MS-Contin. Kadian is formulated in a capsule with beads in it, and this system supposedly allows better titration of dose; Avinza is actually meant for once-a-day dosing (24 hr sustained release) -- but they are both morphine sulphate. You could try them; it's possible that the formulation of each pill could cause one to be better than the other for you, but do remember that they have the exact same medication in them as MS-Contin, so you would not be changing actual drugs, just dosages and dosing regimens.

I do not feel nauseated or "fuzzy headed" on methadone. I felt tired the first few days but then I was okay. If you decide to try it, try to do it on a weekend. Methadone can cause delayed drowsiness -- you take it, a few hours later you think you're still fine so you drive to the store and find yourself dozing at the wheel. This happens to a minority of people, but you should just be sure, like anything else, you know how you react.

Methadone is not "stronger" than the others. It is simply different. It tickles a few different types of opioid receptors in the brain, rather than just the "mu" receptor (the classic one... morphine binds to this) so its mechanism of action is a little different. As I said, some people's pain responds better to this type of stimulation, and others don't.

[Kara Isabel]

Thanks for your explanation.

This will probably sound ridiculous, but I want the pain controlled, but at the same time.....I'm sort of scared of taking a high dose narcotic. Methadone just has such a...ehh.....bad wrap in the media, but it is reassuring to talk to some people that take it with good results. I'm curious if it will control the pain better than the morphine, but at the same time a little fearful.

Hugs,
Kara

[DaniBelle]

So glad...

your doctor 'came around' and you are going to be having proper pain relief. I know it must have been sooooo hard going through those weeks (month) without pain relief after being told you would only be able to take the benzos. I would have been freaking out! I just hope this doctor and the NP realize how much suffering; physical and emotional stress they put their patients through. They should give all their patients free care for a couple of months to make up for it. I remember someone quoting a line from my fav. show, "House", when Dr. House says something like "The fear of pain is almost as bad as actually experiencing the pain" (I think Saronjini {Jen} has this quote noted below her signature). This is soooo true. I remember several times before my IC and Fibro got to this point where I can't really go anywhere more than an hour or two. I was on my way to visit my parents in Alabama and realized (about 30 min. after I'd left home-thank God it wasn't farther away), that I'd forgotten my pain meds, etc.. I really freaked out...got off on the first ramp and went back to my house, TRYING not to go over the speed limit. Just the fear of not having pain relief was soooo terrible! I'll never forget that feeling. Now, I make sure I keep my medication in my purse (hidden pocket), in my bedroom AND will probably take some to my parents' house if I get to visit anytime in the near future. I used to be able to drive for 3 /12 hours while sitting on a heating pad/or using cold packs, but I can't do it anymore. I have to depend on my husband to drive so I can lay back to take pressure off my bladder. My 'friends' don't understand this (I'll start a new thread soon about 'where have all my friends gone?'...they don't understand IC). Anyway, after all my rambling, I have a question....I am only at about 70 percent (on good days) pain control. I want to increase my long-acting meds, but my pain mgmt. doc said if I increase to one more pill per day, I'll have to deal with nausea, falling asleep, headaches, even bladder retention! I've seen others who take the MS Contin at higher doses than I do, so I don't understand. I do know that once I took two doses too close together and I was sooo sick (stomach) for hours. It was awful. Any suggestions? Should I ask my doc if I can try the Oxycontin? How is it different than the MS Contin? I don't want to feel 'all drugged up', yet I want to be able to be at the grocery store for more than 30 minutes without the pain hitting me hard! I don't want to be a couch potato for the rest of my life!
Sorry, such a long post, but I'm angry that I feel like I don't have a life anymore! I love my Gyn, my pain mgmt. doc and the nurse who administers my instillations (AN ANGEL!!), my counselor, but I don't know what to do about the pain. I don't want my two boys to remember Mom as a 'shut-in' who can't do anything for more than 30 minutes. Sorry so long!

Dani

[Kara Isabel]

Sarah, I think that's the only downside to the oxycontin that I can tell, it just doesnt' last long for most people. You are lucky to have an understanding doctor that works with dosing for you. Most doctors don't! I know you're right, I shouldn't be scared of the Methadone or patch, they run just as many risks as the morphine I'm already taking, I guess. I'm sorry you don't have many doctors there! That has to make it difficult.

Dani, I upped the MsContin dose to 60 mg 3x a day and I haven't noticed any increase in drowsiness OR retention so far, I think it just depends on the person. It sort of sounds like your doctor just doesn't want to try it, but I would ask if you could ATLEAST give it a try! Its not going to effect everyone the same way.

I am SOO grateful they came around!!!!!! I really hope the increase dosing works, if not....I'll ask about the patch or methadone. I'd probably try methadone first. At any rate, I just want the pain under control! The pain drives me CRAZY!

Gosh, scary story about forgetting your pain meds! I'd be flipping out too. I keep most of them at home but I have a little carrier from the pharmacy that is the Monday-Sunday one and I put my pills in that and keep it in my purse incase I need a dose of something if I am out! Which happens ALOT.

lots of hugs,
Kara

[DaniBelle]

Figuring meds out....

Kara,

It sounds like you are getting some great feedback about what you should try. Like you said (and others), medications affect everyone differently, PLUS we have to realize that our other medications we take for other conditions can alter the effectiveness of the pain med or the way we metabolize it. It's weird, half the time I take my Soma, I feel the relaxation within about 15 minutes and it makes me feel like I've had a beer or something like it, but the other times, I don't feel it AT ALL! It's so weird! I noticed alot of difference in how my meds worked after I had my gallbladder removed. Anyway, speaking of the MS Contin, my doctor told me to call him if I wanted to add another dose (which would make it 4, 30mg per day). Question....would it be better to take 1 and 1/2, 2 x perday, plus 1 whole pill or the 4, 30mg per day. Since I had some nausea when I added another tablet before it was time for me to take it, I'm not sure how I should do this. My doctor is open to me trying whatever I need (unlike the last doc I had...she was awful!!). I probably didn't make a whole lot of sense just then, but basically I want to have more pain relief, but without nausea. I have a VERY sensitive stomach....I'm still trying to figure out what I can eat that's IC friendly. Most days, I just stare at the frig or cupboard and give up. I'm a lazy cook, too, so that doesn't help.

Hey, does anyone know much about how long baby birds take to 'fledge' and get up into the trees to avoid an over-anxious Springer Spaniel? I have nests in my backyard and frontyard, so I can't let my dog out without me being there with him. He is bird CRAZY! I know it's in his blood, but I don't want him killing these baby cardinals, robins, and doves!!! I'm surprised they even put their nests anywhere near our yard because they have to know there's a dog around!! It seems like last year, the doves that nest on our back deck had their babies fed and flying within 2 weeks of hatching. This is so stressful and when I'm stressed, I get an instant flare! My hubby says to just let nature take its course, but my "Chewie" will do what his name suggests if I let him out there! Too much worrying....I need a break.

Feel better.....


Dani

[Kara Isabel]

I wouldn't break the pills in half, that might alter the way they are absorbed. I took 30mg 4x a day and was pretty happy with that (I had the breakthrough meds though) Why not ask about adding the 4th one and take it before bed, so you won't really feel the nausea? I haven't gotten nauseous from MsContin yet, but Ultram really makes me want to HURL! LOL I swear, the ultram made me lose weight when I was taking it on a full time basis before pain management.

I'm glad your doctor is open to adding the dose, I think we do build up a tolerance and need to up the dose every so often, which is the bad thing about the narcotics! I wish they would keep their same level of help without having to increase it for the same effect.

When do you see your pain doctor again?

Despite this last round of BS with my doctor, overall.......he's been really cool about helping me (until this benzo theory got into him) I just hope I've paved the way if any IC patients come his way in the future. Its pretty intimidating that I'm the only IC patient and don't have anyone else to back me up that the pain is this REAL and intense.

And on how to take the DOG out of the DOG? LOL.....I haven't a clue! Maybe the birds will move their nest if they see there is a *threat* to them?

My neighbors have a springer spaniel, Molly.....she's such a sweetie! My Gucci and Molly like to chase each other across the fence! Its quite comical.

Hugs,
Kara

[IC SARAH-CPP]

Dani,
Oh my gosh, you saying that about you dog just brought back the worst memory of something that our dog did when we lived in Cali. We had a huge backyard, especially for California, and had a couple families of squirrels that lived back there. Well one day our dogs were out there and we saw them take off down to the lower yard and start going crazy down there. My husband yelled at them to back off and ran down there.
It turned out a baby squirrel had fallen from the tree and our dalmation Raider bit it and killed it! It was so sad, especially because the mommy squirrel was standing right there watching the whole thing. She cried for her baby for like 3 days. It nearly drove me crazy listening to it. She would run around and cry this sad cry and pat the trees in this weird way! anyway, your post just reminded me of that.
If it were me, I would probably rather take the doses spread out, instead of 2 bigger doses. But then again, if the smaller ones dont get rid of the pain that might not work either. I guess i would rather get rid of it for a little while then be in semi-bad pain all day, if that makes sense! It is worth a try at least though.
Sarah