Side effects and should I change meds AGAIN???

[mellie4]

I'm not sure what to do anymore.  My NP has been so good about trying different medications and different treatments with me.  I'm afraid she'll be fed up if I ask for another change.  But I don't know how I'll react until I try something.

So a couple of weeks ago we started the Fentanyl patch, 75 mcg.  I think overall it's a good fit for me, though we had to go to changing it every 48 hours.  I don't seem to have any problems with that on its own but when I add a breakthrough medicine, then I seem to run into trouble.

The original breakthrough med was oxycodone, 10 mg., 1 to 2 pills every four hours.  That seemed to give me fairly long hot flashes and was uncomfortable.  I mentioned it to her, and she switched me to Morphine, 15 mg., 1 to 2 pills three times a day.  Since we added that, I'm so tired.  Way more tired than normal.  I think if I had to choose between what I hate more between hot flashes and excessive tiredness, I think the tiredness is worse.  At least the hot flashes come and go.  The fatigue is constant.

I'm talking making me so sleepy that I fell asleep during a presentation at my daughter's college orientation and when my kids have been talking to me.  I also have broken dinner plans with my boyfriend twice in a row due to being too tired.  (He's great with this though, since he has CP issues as well.)

The other thing I'm not loving with the medication switch is I am always hungry.  When I was on the oxycontin and oxycodone I had to force myself to eat.  Now, nothing satisfies me.  I do not want to put on any weight.  It's taken me a long time and a lot of work to get my weight to where I want it.

Yesterday, though, was when I really freaked out.  I'm not even sure if this is related to the meds or not.  Maybe one of you will know.  I was getting my nails done, manicure and pedicure.  The girl doing my pedicure asked me "What happened?"  Turns out my left foot/ankle was hugely swollen.  No bruising and it didn't hurt.  I didn't twist my ankle or have any other injury to it.  Of course, I get all nervous and then ended up being short of breath, which I attribute to getting anxious.

I don't use a lot of salt or anything.  And the swelling was really significant.  I came home and spent some time reclining in bed and the swelling went down as quickly as it came.  (It strikes me as very strange that only one foot was swollen.)  The only other time I've experienced swelling in my feet or legs was immediately following giving birth to my kids and if I fly.  My blood pressure has been fairly normal and I have nothing else going on.

So, I guess I have two questions.  One, has anyone experienced any strange side effects like this from morphine, or any med?

Two, do I dare ask my NP to change my meds yet again or should I just leave things along for a while?

Thanks for all the help!

[namnam46]

HI Mary,

I'm so sorry that you are having all of these problems.

If it were me I would start by changing the BT med first NOT both as it more than likely is only one that is causing the problem. OR the 2 of them together.

If the Fentanyl is giving the pain relief that your are after then I would leave it alone and try a different BT  med. If you are used to tye Oxycodone maybe go back to that for the BT along with  the Fentanyl.  I've been on the Patch for over 6 months now and as you know I LOVE it. my patch has helped me to LOSE weight. It's slowed MY appetite. I've lost 25 lbs. since January. I've NEVER heard of anyeon having a problem with GAINING weight on it. But everyone is different.

I'm wondering if Tuck isn't correct about the underlying condition or the take-out food causing the edema. It certainly wouldn't hurt to check out the possibility of an underlying condition.

Bless your heart, I hope that you can get all of these issues worked out so that you are finally comfortable and can relax so that all of this doesn't stress you out.

I agree with what ou said about being RIGHT on the brink of finding the rigth combination of BT medications.

Sweetie, I hope that you get all the answers that you are looking for SOON.

I'll be looking for your update and hoping for the RIGHT combination in your next update...Sherry

[Sarajmt]

Hi Mary:  I am so sorry you're having this fatigue.  That's why I had to quit the fentanyl patch.  But I really hope your doctor is able to work something out.

About the edema, oddly enough when I saw my PCP on Friday, I pointed out to him that my ankles and feet have been swollen.  He did his little indention test and gave me a prescription for Dyazide.  If this doesn't work, I'll have to get more tests than just the usual blood and urine work.  I don't know why I'm swelling.  Meds, maybe?  I do know that MSG blows me up like a blow fish!  

If you find out why you're swelling, please let me know if it's drug related.

I hope your doctor really can find the right combination for you.

Sara

[mellie4]

Oh, Tuck, what an awful thing to happen to you!  I find it's those are the kind of things I get frustrated with myself.  My memory is terrible since I've been on medication.  Even lists rarely help.  It's one of my summer goals ... to get super organized (with the kids' help) so that when September rolls around we'll be in good shape.  Since it looks like I'll have to take early disability retirement, I'm going to change my home office in the basement to a game room for the kids, mainly the boys.  I'll store my stuff in the attic.  I'm finding part of acceptance of the CP and the meds and everything that goes along with it is finding new ways to do things and finding what works for me.  I've always, in the past, been super efficient and able to pull it all off.   I could juggle all of it and not drop any balls.  Not anymore.

I have a great relationship with the NP.  I've known her probably 2 years as I had a brief period of time seeing her two years ago.  Then the surgeon thought we could fix what was going on and I stopped going.  I started back up about a year ago, at my request.  (My surgeon is a bit funny.  He has a huge ego and sometimes if you ask for something he makes snide comments, like, "What do you want to do that for?  They'll just mess you up."  That's what he said when I asked for PT.  He likes to be the hero all by himself.  But he's a great surgeon.

She trusts my judgment.  She knows I have a lot of medical knowledge and she knows I'm very involved in my own care and that I research a lot.  She also knows I have a NP friend who works in RI that I talk to about everything.  (My feeling is my friend Nina always tells me the truth; she loves me.  She's advised me against certain meds or procedures and has encouraged me when I've been hesitant on some things.)

I don't generally ask for a specific medication, unless it's something I tried before and it worked well.  I usually leave it up to her.  I will say no to certain things, but sometimes I'll change my mind after looking into it.  I initially said no to the Fentanyl patch.  She had mentioned that months ago, but after having a stretch of a lot of pain and doing some research (and from things I learned here), I finally agreed.  And there's a lot I like about it.  I think I just need to find the right BT med and dose.

We also chat about more personal things.  And she's given me her pager number directly so I never have to page her through the hospital.  I know she doesn't do that with most people.  But I think she knows I'd be pretty desperate to use it.  I think I've only used it once, right after my last surgery and the Dilaudid was doing nothing.  Normally I wait until office hours.  We email a lot, just touching base with things, and I was really surprised when she called me Easter Sunday!  I had sent a message and she was on vacation and was checking them and called.  I was so surprised.  She said she didn't want me to have to wait another minute.

Even though I sometimes self-adjust my medications, she's pretty okay with it.  I think it's because I always tell her.  She also knows I am terrified of addiction because of my ex-husband.  If it wasn't for her, I'd be in worse pain because I wasn't taking as much as I should.  She encouraged me to take it before my pain got way out of control and it does work better that way.

[Tuckamore]

Sorry Mellie,

My methadone was a typo. I read morphine and thought morphine and typed methadone. Please forgive my stupid fingers!!

In my experience I have seen one sided edema. Admittedly it's not as common as bilateral edema but in the same breath it is not rare. You also have some underlying condition or yes the take out food could be responsible. It is notoriously laden with sodium.

There shouldn't be much if any withdrawal symptoms as you are going from one narcotic to another.  Some ppl report mild w/d issues in such a situation but in my experience I have not had experience any.  

My physician has been absolutely marvelous about searching for the most effective narcotic or combination of narcotics. I am hopeful that your NP will be also. Apparently you were switched because the OxyContin/Oxycodone combination was not effectively handling your CP. Don't be afraid to discuss this in detail with your NP.

I never suggested a narcotic except when I was hospitalized. a few weeks ago I let my PCP make those choices and I report to her the effectiveness. When I was in such acute pain and she insisted upon hospitalization I asked if we could try XXX to control my pain and get me to an out of state wedding. She graciously agreed and I was able to attend a very important wedding. But my relationship with my physician in now eight years long and she now knows I am very responsible with medications. I doubt she would have been so trusting in the first year or so. Only you know the relationship between your NP and yourself.

You may be correct that it's the combination of the Morphine and the Fentanyl. The first ten days I was on my new medicine was a huge adjustment. Indeed I am just becoming use to it. I actually got "lost" in the large multi-level, multi (connected) building motel where my husband and I had a room and my mother and aunt had a room. It was my fourth day on the long acting med. I was on my way back to our room when suddenly I didn't know where I was. I frantically searched for our room. My pain was high after a long day and I sat on the hallway floor crying. Luckily I had my cell phone and called my husband. " Help me. I'm lost" I cried. Suddenly a door opened (right behind me) and thankfully it was my husband.  

Now I am an intelligent woman just like you. Normlly I would never have been "lost" or if I ws I would have been able to figure it out. The opiate adjustment period can be significant. You may simply be experiencing what I did. Or the combination may not be right for you. Your NP should work with you to figure this out. Be patient the combination is new.

No need to thank us for our patience. Obviously I have been there and some one was very patient with me. :) You'll get through this. It'll just take a little time.

You are always very welcome.

[mellie4]

Thanks.  I just don't want to be seen as constantly complaining and wanting to change things with the NP, but I do feel we're very close to finding the right thing.  I realize I may have to put up with some side effects but I want to pick the medicine that gives me the least side effects.  I didn't like the hot flashes but I most definitely would prefer those to the tiredness I'm feeling.  

Tuck, I started morphine as a BT not methadone.  And I did have pitting edema.  I forget how they categorize it, but if I pushed on it, it would remain indented for a few seconds.  Just so strange that it was only one foot.  No swelling today at all and no shortness of breath.  I think the SOB was definitely anxiety from getting a little wigged out about the swelling; it was really significant.  

I'm going with my BF to the doctor on Tuesday.   She's also my PCP so I will see if she can fit me in behind him just to mention this.  I do smoke, which I know can cause circulatory problems.  I also have a minor heart condition that has been stable for the past 20 years or more, but I suppose there could be a change in that.  Also, even though I don't add much salt or any really to my food, I have been ordering a lot of takeout, which I'm sure is filled with sodium.

One thing is most all of my complaints tend to be on my left side.  My RSD is left-sided as is my worst hand pain.  

It's just so strange for the swelling to be one-sided.  I would think that would really only happen with an injury.  Excessive sodium, circulatory trouble, etc., I would think would normally be bilateral.  My mom had congestive heart failure, and both her feet would swell.

I'll bring it up with PM as well.

I hate listening to myself complain all the time; it has to be worse for others listening to me!  I do feel it's always something.  

I am trying to be more realistic about my pain levels and about side effects.  I've been on the morphine about a week I guess.  Maybe it's just the morphine or a combination of the morphine and Fentanyl.

I'm wondering if I end up going off the Fentanyl and back to the oxycontin, how do I make that jump?  Would there be withdrawals?  Or would they be sort of equal.  (Before I was taking 40 mg. oxycontin along with 10 to 20 mg. oxycodone for BT.  Now it's 75 mcg. Fentanyl with 15 to 30 mg. morphine for BT.)

Thanks for all your patience!!

[Tuckamore]

God Morning Mellie,

I am so sorry to hear that you have having issues with your break through medications. You poor dear. As Gilda Radner use to say, " It's always some thing."

In my opinion you should by all means discuss this with your NP. How long have you been on the methadone? It does take time before our body adjusts to medications. This sleepiness may improve as your system becomes more tolerant of the medication, or combination of medications. I am just now beginning to adjust to mine and it'll soon be three weeks. Bu some ppl just don't tolerate certain meds as well as other ppl do. As I have said hundreds of times, we are all different. So please talk to your NP. Tell her the impact the drug is having on your life. Let her make the decision and I bet she'll either change the dose or the medication.

The edema (swelling) is not generally associated with opiate medications. Are you sure the shortness of air was due to panic or anxiety? What you experienced was most likely dependant edema. Meaning when your foot was down (in the dependant position) it swelled. Was it "pitting?" Meaning if you pressed your finger into it did the tissue remain "in" for a period of time and you could actually see where you had pressed?

Edema can be fairly harmless or it can indicate circulatory problems. Many ppl that are considered otherwise healthy can experience some dependant edema from time to time. Your B/P can be with in limits of normal and you can still have circulatory issues. Be sure to tell your PCP about this symptoms too. If may have been a one time freaky thing and won't happen again. Just watch you ankles and monitor for edema.

Hungry? I had no appetite until I was placed on OxyContin several weeks ago, now I have moments of raging hunger. Although I have lost 24 lbs in the last few months. Maybe because your pain is more controlled your appetite has returned. At least that is what I attribute mine returning moments of huger. It could also be related to the medication or a combination of the two. This is the third item I think you should place on your list of things to discuss with your physician.

Last but not least please let us know about the edema and how you are doing. I'll always look forward to hearing from you.

Peace,
~Tuck

[runitskat]

The only thing that happened to me when I took morphine was I had extreme pressure in my neck. It was weird. It felt like I had someone sitting on my shoulders (like how people carry their kids on their shoulders) It did nothing for my pain and it did make me tired. That's all though, no swelling or anything. Norco and Oxycodone both make me hot and sweat but i'd rather have that than being tired all the time, since I already have chronic fatigue I don't want to make it worse.