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Forget what I said about fentanyl

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Posted 3/11/2010 9:19 PM (GMT 0)
I've removed the patch.....I can't use it.

I started paying closer attention to my breathing after the comments in my earlier thread and sure enough, I was breathing very slowly and shallowly. I kept feeling like I was oxygen deprived and had to make myself take deeper breaths....I was also having to remind myself to breathe sometimes.

Also, I've been having real trouble swallowing the past few days and I believe it's fentanyl-related because I found that listed as a side effect somewhere.

So, no more fentanyl for me.

I see my PCP this afternoon, will ask her what she recommends. Or I will email my rheumy, since he's the one who prescribed the fentanyl.

Thanks again for your help! I don't know what I would do without you guys! smilewinkgrin
((((hugs))))
JoAnn
Posted 3/11/2010 10:58 PM (GMT 0)
JoAnn

Don't feel bad about not being able to use the fentanyl patch! everybody reacts differently these meds, and yours is not all that uncommon. I personally can't use most of those type of things as I am allergic to most adhesives! Anyway maybe they can give you some oral medication, or something different. I do wish you well!

Good Luck to YOU

White Beard
Posted 3/12/2010 1:26 AM (GMT 0)
((((((JoAnn)))))). Sorry to hear that you have to abandon your new found relief, but you're right. You don't want to mess with your breathing.

hugs,
Skeye
Posted 3/12/2010 3:00 AM (GMT 0)
Hi JoAnn:

Sorry the Fentanyl didn't work out for you. I've can't use it either as Whitebeard and I have something in common - I am also allergic to adhesives!

I hope your doctor is able to give you something comparable without the side effects!

Lorie
Posted 3/12/2010 3:25 AM (GMT 0)
Thanks so much for your replies, White Beard, Skeye and Lorie!

Interestingly, when I emailed my rheumy and asked for him to suggest a replacement pain medication, he casually replied that we should discuss it at my next appt and that "nothing comes to mind".

Uh-oh! I'm not scheduled to see him again until APRIL!!

So I sent him another email the gist of which was that it is unacceptable for me to be just "toughing it out" for a month, and that, despite my problems with the side effects, fentanyl made a significant difference to my ability to function at work and at home because of the pain relief it provided. Not to mention my overall quality of life....

In other words, I really need another pain med prescribed before April!

He must know all this though, he's a fibromyalgia expert.

So he ended up calling me to tell me that he does think I need another pain med but he's on his way out of town and won't be back until Monday. Also he can only prescribe pain meds for me that are not particularly harmful to the liver, because of my autoimmune hepatitis (Stage II liver damage).

So I sent him my hepatologist's email address....hopefully they can come up with something to give me for pain! Are Tramadol or Oxycondone harmful to the liver?
Posted 3/12/2010 5:35 AM (GMT 0)
Dear Nasalady, I am so relieved to hear that you stopped the fentanyl.  I had to stop it too because of the affect it had on both my breathing and swallowing.  Both function or managed by involuntory muscles and fentanyl  just relaxing them too much in some people.  My Pulmonologist highly recommends that patients with any respitory issues at all be referred for a sleep study.  Most people do not even realized there breathing is affected, thank godness you did. You know that is so hard on your heart.  The last thing you need was to have a cardiac event on top of all of your other problems.  Have you ever tried Dilaudid?  Right now I have baclofen and morphine in myy pump and use Dilaudid for B/T relief.  This has been the best combination for me.  I get pain control without compromsing my breathing. Nasalay, good luck and keep us posted?  By the way, do you work at NASA?   
Posted 3/12/2010 8:16 AM (GMT 0)
Dear Stella Marie,

Your posts on my other thread were so helpful; the information you shared validated my nagging feeling that something just wasn't right. It's too bad that there were problems because fentanyl did provide good pain relief!

It was scary that it affected my breathing though....I appreciate your part in helping me notice this!

No, I've never tried Dilaudid....I've tried very few pain meds, actually. Thanks for the suggestion.

Yes, I support a NASA mission called the Spitzer Space Telescope; I've been with that mission since 2000 and it's been very rewarding.

I've been trying to find a way to continue working; it's very difficult because most days I don't feel well enough to go into the office. My employers have been very understanding and have allowed me to work from home quite a bit. I just don't know how much longer they'll continue to do it! If I can find a pain medication that give me control without causing other health issues or making me sleepy I may be able to get back into the office more frequently.

Thanks again for your help! Take care....
((((hugs))))
JoAnn
Posted 3/12/2010 12:11 PM (GMT 0)

I'm sorry to hear you are unable to use the fentanyl but am glad that you realized the symptoms before anything bad happened.  I'm thinking that oxycodone and the extended release form of it, oxycontin, are safe for the liver but definately check with your doctor first.  I do know that you wouldn't want any percocet or vicodin since these both include tylenol.

I am using oxycontin for my ER med along with oxycodone for BT.  I started out taking the oxycontin every 12 hrs but it was wearing off after about 7 hrs so my doctor changed it to every 8 hrs.  I also started out on the 20mg but still wasn't getting the amount of relief I wanted so I just started using the 30mg last night.  Hopefully this will help.

If I remember right you were interested in the radio frequency abalation.  I will be having this procedure done on March 22nd and will post afterwards to let everyone know how it goes and the amount, if any, of relief I get from it.

Posted 3/12/2010 5:27 PM (GMT 0)
Thanks for your helpful post, Jag! I'll mention oxycontin/oxycondone to my doctor. Does it make you sleepy at all?

Your mention of vicodin made me remember something I just recently found out: there is a medication called vicoprofen(?) that is just like vicodin except ibuprofen instead of tylenol....that might be something to look into as well.

I'll be praying all goes well for you with your procedure on the 22nd! Please keep us all posted as you are able!
(((((hugs)))))
JoAnn
Posted 3/14/2010 9:26 PM (GMT 0)
I am sorry to hear about what you are going through but I cant give you advice i havent been on pain meds in awhile . Its not because I dont need them it was because I was without insurance for awhile and couldnt affords them anymore. I have insurance now but I have a more pressing medical problem to be handled first before I find a new pain dr and go back on meds. I just got insurance a month ago dont want to have too many claims out there. I hope you find a solution take care.
Posted 3/14/2010 11:51 PM (GMT 0)
Thanks Kimber! You're in my thoughts and prayers for your gallbladder problems and other issues!
Posted 3/15/2010 10:51 AM (GMT 0)
The meds I mentioned can make you sleepy but not to an extent where I am falling asleep while doing tasks. Now if I sit in the recliner for too long reading I will find myself nodding off but that may not be from the meds. Also, I don't find where they interfer with my driving abilities either. I am on rather low doses though and everyone is affected differently so you do need to be careful when starting them. My doc just gave me an increase on the oxycontin strength and I am seeing some increase in drowsiness but seems to be getting better as my body becomes accustomed to the increase.

I did have issues with constipation when I started these but some Miralax took care of that problem and now that my body is used to them I don't need to use anything.

The vicoprophen may be an option for you but on another note ibuprophen can be hard on the stomach just like aspirin so with your stomach problems this may lead to other issues.

Good Luck and hope you can work something out with your doctor to alleviate some of your pain issues. My doctor prescribed the oxy pills so I didn't have problems with excess tylenol or ibuprophen but I do still use tylenol on occasion when my body is aching all over. You may check out some websites on hep, I think they may say it is ok to use tylenol occasionally for body aches or fever but again this will be something to discuss with your doctor.
Posted 3/15/2010 12:36 PM (GMT 0)
Thanks.
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