Afraid to talk with my doctor about meds - Pain Management Message Board

gregar · 04-09-2008, 02:58 PM

Hello everyone,

I'm fairly new to these boards, I've read some good info here, seem some thread that just make me want to cry from the issues people are having to deal with because of the pain. My PM gave up on me about 3 months ago after a year of trying to figure out what was wrong with me. I was up to the point of going through with a Neurotomy but the doctor said with the info from the pre-testing there was only a 50/50 chance it would help. I talked with my GP which has also been my diabetes doctor for almost 9 years and he advised me against doing the neurotomy with those kinds of odds because it is not permanent and there is a chance it can make things worse. After that my PM said he was out of ideas and was turning my pain management back over to my GP. My pain has been going on for 2 years now, I've gone through therapy, steroid injections. I've had MRI's, CT with and without some kind of injections and nothing shows anything that could be cauing the pain I'm feeling. So my GP and been very good. Up until now I was taking 7.5/325 Norco 4x daily and that barely took the edge off the pain.

He started me with Fentanyl 25mcg, worked up to 50mcg working until I started using one 50mcg patch instead of two 25mcg patches. I also had issues with rash and really not very many spots on my body where I could place the patch (too much hair) most place where I'd apply them wouldn't work very well. The only place they worked was on my upper chest, close to the collar bone. That area started getting sores so he took me off the patch. One thing to note is when they were working well (2x25mcg) they took my pain down to a 1-2 with break through only happening in the evening and going to 3-4. My pain level is always around 7-8 with just taking the Norco for a reference.

After the patch I was put on 30mg Oxycontin twice a day. I had bad issues after 6 hours, was like I had taken no pain med and after 8 hours was back up to 7-8. My doctor had me change to 30mg 3x daily. That still wasn't doing well enough ( he doesn't want me to have to take break through pain for anything other than me doing something stupid like lifting and so on) So he wanted me to try 40mg 3x daily and if that didn't work 30mg 4x daily. I still had issues with 40mg 3x daily but 30 4x daily worked well enough. I was getting tired of changing doses and having to go in to see the doctor every week for this.

After about 16-17 days I needed a refill on my prescription (was filled to go 30 days @ 60mg a day and we ended up doubling that in a few days after me getting it). The refill has had issues. For some reason the side effects are 100x worse then the first prescription. I got them from the same pharmacy but they had to order more so it was a new batch. And even worse is the fact that even though these feel a lot stronger than what I was taking they are barely touching the pain right now.

Now I'm afraid to talk with my doctor, I think the issue is the same I had with a quick acting darvocet ( think that is what it was) I took while the PM was working with me. They made my chest feel like it was very heavy, it was hard to breath and my heart raced like my pulse was well over 100 and I got really bad head aches. I don't want to have to tell him I don't think the oxycontin isn't going to work out, especially if the dose and side effects are going to change so much from refill to refill.

What should I do? I'm so afraid of my doctor giving up on me, being left without a doctor and ending up back in a lot of painwithout anything to help manage it.

HUGS

brianpain33 · 04-09-2008, 06:27 PM

This is not a good situation. First of all the patch was working but you had the rash issue. What brand were you using? Sometimes people will have problems with one brand vs another. Another thing that could have been done is to use a corticosteroid nose spray on the skin before applying the patch and this would have lessened the possibility of having a skin reaction. This is what quite a few people do that have the allergic reaction, including me.

Second, obviously the Oxycontin is not for you. I think that he may have increased it way too fast. And maybe now that only BRAND IS AVAILABLE you probably got the brand name last time instead of the previous generic versions that were available. The brand tends to be much stronger. There are several other LA meds that you can try or suggest to your doctor:

LA morphine: KADIAN, AVINZA, MS CONTIN
LA oxymorphone: OPANA
METHADONE

Hopefully you doctor would let you try one of these and get you off the Oxycontin. I am sure others will be by with suggestions too.

brian

Executor · 04-09-2008, 07:34 PM

A good reply by Brain. Please don't get discouraged as it's not unusual for PM issues to be complex and individualized. It's very clear that you need some type of LA med and BT meds. Too bad you had to discontinue the patch as it was working. Just speculation here, but fentanyl is as potent as they come....And you probably built up a lot of tolerance while using it. Thus, this may be while the Oxy isn't working....You may need a stronger dose.

The other option is a stronger BT med. I can't quite tell by your post if you're taking anything now since starting the Oxy. For example, something like Percocets would be appropriate. Also, mixing opiates typically works....For example using Oxy as your LA, but something else for BT....Like hydro, fentanyl & etc. Or Vice versa. Since the patch worked so well, it seems that your body responded positively to fentanyl. There is a BT drug called "Actiq" that is 100% fentanyl. There is a generic available as well. It can be expensive, however, and may not be covered by insurance. I take it and it's a wonder drug for me.

Finally, see the thread "brands vs generic- major findings" as the generic concept may be part of your problem.

Good luck!

Ex

niap · 04-09-2008, 08:46 PM

I have been seeing my pm doctor for about 4 months now and one thing that I have learned is honesty is the best way. Timing is everything when it comes to doctors. You cant wait to tell him because now he thinks everything is fine and dandy....If you wait too long to talk to him he might think some thing is up and will draw suspition. DONT BE AFFRAID! Good luck to you as I know what you are going through , pain really tires you out mentally and phsyically!

niap

AnnD · 04-09-2008, 09:33 PM

Go back to using the patches and start shaving your chest. Didn't someone tell you to shave off your hair?! My poor husband is very hairy so but I have to use the electric shaver to remove his hair all the time. If you have someone to help you with putting on your back that is another place and the upper thigh of your legs...shave off the hair and keep areas clear of hair ready to rotate your next patch. Also have your doctor order you any nose spray with cortisone in it and spray it on your skin let it dry then apply your patch the cortisone will stop the skin breakdown. You really need to sit down some night and just read all that people have written on this site and the Spinal Cord Disorders site and the how to use the pain patches all the different things you can do to help. Going back now to oral pills will never work because the pain patches are so much more potent that Oxy-anything there is no way you can take enough pills to cover the pain that a patch will do so I am not surprised that any amount of pills are not working. I am sorry but that pain clinic as well as your doctor are pretty inexperienced if they haven't explained all this to you. And you sound as if you have given up. Do not give up on yourself....they gave up on you and it really isn't that hard the people that have been helping you don't sound like they have been in this field long enough? Above everything you need to educate yourself...Also...your doctor needs your input so don't give up the journey to be pain free. You were on the right track with the pain patches but you just need some good advise. But you don't go from patches back to pills it just will not work. Once you graduate to the patch and your pain is still there then you will never be able to control the pain with a pill. This is when you use pills to control the break through pain of the patch. Good luck and don't give up.