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Old 04-09-2008, 01:58 PM   #1
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Afraid to talk with my doctor about meds

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

 
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Old 04-09-2008, 05:27 PM   #2
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Re: Afraid to talk with my doctor about meds

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

 
Old 04-09-2008, 06:34 PM   #3
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Re: Afraid to talk with my doctor about meds

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

 
Old 04-09-2008, 07:46 PM   #4
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Re: Afraid to talk with my doctor about meds

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

 
Old 04-09-2008, 08:33 PM   #5
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Re: Afraid to talk with my doctor about meds

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.

 
Old 04-09-2008, 08:52 PM   #6
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Re: Afraid to talk with my doctor about meds

Hi Gregar,
Welcome to the pain boards, wow, you have really been through a lot. In my opinion, Your doctor has changed your meds and doses much too fast, I'm sure he means well, but your body has not had a chance to catch up and I am afraid he is running through tolerence levels alarmingly fast.

There are still LA meds you havent tried, I am on methadone and have done very well on that, I dont use any breakthrough meds at all, and my pain is better than it has been in years.


Everyone is different, it sounds like you just havent hit on the right med at the right dose yet, but maybe you could slow down a bit, maybe hang on for 10 days or so at each step to give your body time to adjust.

I hope you find something soon, in the meantime, welcome again and please keep posting, I look forward to getting to know you better.

Your Friend, Fabby

 
Old 04-10-2008, 08:56 AM   #7
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Re: Afraid to talk with my doctor about meds

Quote:
Originally Posted by AnnD View Post
If you have someone to help you with putting on your back that is another place and the upper thigh of your legs
I too have used the lower back as it's flat, doesn't bend, and is out of the way. However, depending on your activity level, many people get a good back sweat going sometimes, so factor that in. There are very few sweat glands in the upper arms...The outer arms are a great area.

With the patch, one has to be aware of the warming trend that's going on right now....Increased body sweat & body oil is what loosens the patch edges. However, if you plan it right, you should be able to work around it.

Good luck.

Ex

Last edited by Executor; 04-10-2008 at 08:57 AM.

 
Old 04-10-2008, 10:34 AM   #8
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Re: Afraid to talk with my doctor about meds

Thanks for all the replies, it makes me feel a lot better now. I just called my doctor and made an appointment to see him, but the earliest I could get in is next Monday. I've been honest with him up to this point and I'm not going to change now. He can't treat me correctly if I'm afraid to talk with him. I should have never been afraid to talk with him, he's been my doctor for almost 9 years treating me for my diabetes and other health issues and he's always treated me well.

Answering some of the questions people asked. When I was on the patch at first it was the Sandoz, I started with 25 mcg. When I moved up to 50mcg's I used two 25's until those ran out. When I filled my first 50mcg prescription I received a Mylan patch. At that time I knew nothing about the different brands and put the new patch on. After about 2 hours I was very sick to my tummy, felt like I was going to throw up. After 4 hour my pain was rising and the area where I put the patch (upper chest) was burning. After 6 hours it just got worse so I called the pharmacy and they had me bring in the unused patches and exchanged them for the Sandoz they scrounged up. But the 50mcg Sandoz weren't working as well as the two 25's probably just a bad batch, the expiration date was just 5months away so they could have been a little old too, not sure.

For some reason they only worked well on my upper chest (probably do to my being over weight and other areas having a lot of fat). I had my partner shave a spot on my back and apply it there but it didn't work well there. I also shaved a spot on my tummy but it rashed up there just as bad as it did on my upper arms. After a while my upper chest started breaking out and I was having a hard time getting the adhesive membrane off my skin. I had to scrub it hard and was not healing fast enough to put another there after two days. Two days is all the time the patches would work for me by the way.

For BT pain I've been given Norco 7.5/325 but the doctor doesn't want me to have to take it, he even said I shouldn't need to considering how often I'm having to take the Oxycontin (30mg 4x daily about every 5 hours).


Someone else said something about my Oxycontin and that the reason for the reaction might have been because the first was generic and the new one non-generic. I checked and they were both non-generic, but it could be that the first was old? I'm not sure what the shelf life is on this kind of thing but the 50mcg Sandoz patches I got from the same place were close to expiring ( the 25mcg same brand had 1.8 years until they expired and they worked well). I'm just not sure, but I do know that all I'm getting are side effects and not the pain relief I should be getting.


One other question that some people might have looked into already and know the answers. Can the meds I'm taking cause the Oxycontin to not work as well as it should? I know my doctor probably knows about all this but I'm just wondering if maybe he's overlooked something. I'm taking the following meds.

Vytorin 10/40 1 daily
Metformin Hcl 1000mg x2 daily
Gemfibrozil 600mg x2 daily
Byetta Sub derm injection 10mcg x2 daily
Lantus sub derm injection 35 units 1 daily
Novolog Flexpen Syr injection 5-15 units x3 daily
Gabapentin Caps 300mg x3 daily
Adderall Xr Caps 30mg 1 daily

Some of these are for cholesterol and high triglycerides which I believe block some fat intake, others for diabetes slow down intake of foods (byetta) and slow down the liver in making sugars (metformin). Anyway, thanks everyone. I feel much better knowing there are other people out there that care even when they don't know me, yet.

HUGS
Greg


EDIT: One thing I forgot to add. The Byetta makes me sweat a lot. I have to have a fan or some kind of air flowing over me most of the time. And I'm not sure if this matters, but my normal temp is a lot lower then normal. Usually 95.8-96.8f and I'm not sure if this matters with the patch.

Last edited by gregar; 04-10-2008 at 12:15 PM.

 
Old 04-10-2008, 11:24 AM   #9
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Re: Afraid to talk with my doctor about meds

Quote:
Originally Posted by Executor View Post
I too have used the lower back as it's flat, doesn't bend, and is out of the way. However, depending on your activity level, many people get a good back sweat going sometimes, so factor that in. There are very few sweat glands in the upper arms...The outer arms are a great area.

With the patch, one has to be aware of the warming trend that's going on right now....Increased body sweat & body oil is what loosens the patch edges. However, if you plan it right, you should be able to work around it.

Good luck.

Ex
I have a pet peeve and that is someone who directs their answer to someone other than who is writing the question. But I feel I need to answer you because although you are correct you are not totally correct and I want the writer of this post to have more information on the back. Everyone is different, different skin types, some have more salt in there system than others...the whole point is that men that have hairy bodies can use the back or any surface that you can stick a patch to if you shave the hair. The upper and middle back are great areas and you can even use the buttocks. Everyone has to figure out what areas will work and which will not. The lower fleshy sides of the back as you say has more sweat glands for some people and not a good place and it is also in the way of the waist band of slacks/jeans. However, if you are having trouble with the edges of patches not staying firmly attached then you need to add something like Opsite Flexafix over the top of the patch to be sure it stays on. It is a transparent tape that is made big enough to cover patches...there are many on the market. I use the back almost exclusively for my husband because he wears two patches and the 100mcg and 50 to 75mcg's are so big we need a lot of different areas to rotate to so every place in the upper body has been tried because he has to change every 48 hours. It is a fine art of controlling pain and as you say it also depends on your level of activity for that day. So many factors involved and I don't think this posters Pain clinic or his doctor has had much experience in long term patch usage and how different things work but you need to try it. With my husband his whole body (including arms) sweat if he increases his activity so we have to be sure we have extra patches on hand to replace the ones that he sweats off. I am sure the makers of the patch must think that people that wear a patch should be sitting in a bed somewhere being quiet however, there is too much living to do to stay quiet and the patch allows him to do normal everyday things without excruciating pain.

 
Old 04-10-2008, 12:15 PM   #10
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Re: Afraid to talk with my doctor about meds

I was responding to the OP, re-affirming what someone else has said. SOP.

Ex

 
Old 04-10-2008, 12:30 PM   #11
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Re: Afraid to talk with my doctor about meds

Quote:
Originally Posted by gregar View Post
One thing I forgot to add. The Byetta makes me sweat a lot. I have to have a fan or some kind of air flowing over me most of the time. And I'm not sure if this matters, but my normal temp is a lot lower then normal. Usually 95.8-96.8f and I'm not sure if this matters with the patch.
Absolutely! Body sweat and oil that pushes up from the skin is what causes the patch edges to come loose. Once the edges come up, they start to work their way loose from there. The manufacturer and others recommend taping down the edges, or you can cover completely with tape covers. If you use the Duragesic brand, Janssen will send you free of charge speciality covers. But, this is for the brand only, not generics. Also, if you get too much moisture under the patch, it affects absorption.

To be honest, if you have a sweating issue, you may not be able to use the patch....You'll need to talk to the Dr. At the very least, you would need a supply of some extra patches, which may not happen. If your Doc will do it...Great...You'll be very lucky. However, most PM Docs won't script a patient "extra" meds...It goes against the proper PM scripting policies (30 day supply)...The rationale being that it would be prudent to move to another LA med that isn't affected by sweating. But, it doesn't hurt to ask the Doc I guess.

Just a suggestion....You may want to inquire about a rotation system. I use the patch late fall to early spring, then OC in the hotter months. I just can't keep the patch on when the weather is warm. However, in the cooler months, it works great...It is certainly my LA med of choice.

We have to remember that the patch was originally designed for cancer patients at the end of life....Patients were for the most part, bed ridden. This is also why they were originally indicated for 72 hours...Not much mobility of the patients and their metabolism was low, so the patch worked fine for 72 hours. A whole different situation now with standard PM patients who are active to semi-active. This is why many need to change every 48 hrs. The patch is just one of several alternatives available to your Doc.

Good luck!

Ex

Last edited by Executor; 04-10-2008 at 12:32 PM. Reason: Added text

 
Old 04-10-2008, 01:22 PM   #12
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Re: Afraid to talk with my doctor about meds

I'm sorry, I must have given the wrong impression of my issue with the patch. I never had issues with the patches coming off. Just rash (and breaking out in reused areas) and issues with them not working very well when placed on areas of my body other than my upper chest. Though, the not working well part could be because of issues with one patch not being as strong as others because of them being generic.


Greg

Last edited by gregar; 04-10-2008 at 01:23 PM.

 
Old 04-10-2008, 01:27 PM   #13
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Re: Afraid to talk with my doctor about meds

Quote:
Originally Posted by AnnD View Post
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.
I don't think this is necessarily true considering the other LA pain meds like OPANA, METHADONE, KADIAN, AVINZA, and MS Contin. I would think especially the Methadone is just as potent if prescribed at the right dose as the patch. It just really depends on THE DOSE OF THE OTHER LA MEDS.

brian

 
Old 04-10-2008, 01:48 PM   #14
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Re: Afraid to talk with my doctor about meds

I agree with Brian here, I have read many anecdotal stories here of people using the patch and then for whatever reason switching back to a pill,

I agree use of the fentanyl probably puts your tolerance level way up there, but people do successfully make the switch back all the time.

HTH!~Fabby

 
Old 04-10-2008, 06:42 PM   #15
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Re: Afraid to talk with my doctor about meds

I agree three here. What people need to remember is that since fentanyl is so strong, it is used in much smaller doses. Thus, it's proportional. Fentanyl is prescribed in Mcg which is 1000 times smaller than Mg. 1 Mg = 1000 Mcg. So, a 25Mcg patch = .025Mg.

When you research the patch conversion tables, those on 10-20Mg of OC 2x day are put on a 25Mcg patch and vise versa. If the patch were so strong that OC wouldn't work, this wouldn't be possible. Additionally, one is obviously given lots of room to increase (if necessary) given this equation...i.e. they could go to 30 or 40 OC if necessary.

Ex

 
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