Need Evidence That Pain Meds WILL work for MS Pain
 

Hi Again to All! I wrote in October asking to get help or advice for my brother's pain from both MS and L4-5 Disc problems. We saw 4 different doctors and either nothing they did helped or they did nothing. My brother is now back with his original doctor who said he needed two weeks to do research about what might work for my brother's pain. Prior to that he gave him 24 hour Morphine Sulfate, which 1) gave my brother instant "clinical depression"; 2) didn't help because his pain varies wildly from time of day, always getting much worse at night, and this so-called 24 hour stuff doesn't last 24 hours OR deliver the same amount of med over that time. Figure this out: Next he gave him Darvocet which I thought they stopped prescribing in the 60's. Obviously this did nothing for him. Anyway, with his getting worse and worse and because of the stress from the pain and lack of treatment, he had an exacerbation. I know he shouldn't have done this, but this lovely woman in his MS group gave him some 15mg oxycodones to try to see what would happen. With the very first one, his pain was literally cut by more than half AND he felt great mental relief and additional energy!?? He played around with the few pills he had, and discovered that around 25 mg. took enough of the pain away for about 5 hours that he almost felt normal. I can testify. It was like a miracle! I had my brother back! Amazing. We both feel very guilty about this; not the types to take meds not prescribed by a doctor, and I was VERY upset with him when I found out. BUT we are talking about his feeling like his body from the waist down is always submerged in boiling oil without any meds. As I said before he has tried every non-opiod med for MS without any significant change. He is or was on Lyrica, baclafen, neurontin, etc., not to mention alternative therapies such as PT, acupuncture, imaging, yoga, etc. He has tried them ALL in good faith. I think his doc wants to help him but doesn't know how and is getting the standard advice from the MS Web site and talking to other doctors that either MS patients don't feel pain or opiates don't help MS pain, or even that opiates make MS worse. I have been on the Internet for literally hundreds of hours for the past year reading articles, and recently to find a bunch to send to his doctor. (By the way, I found one, a medical study that showed that oxycodone not only improved pain control of MS but seemed to improve the MS itself!. Unfortunately, stupid me, I didn't bookmark it and cannot find it again. Did anyone out there read this study?) So...we obviously cannot tell his doc about the oxycodone. I thought if anyone out there could refer me to a good article or could suggest info that would lead his doctor to prescribing this, or just had some kind of advice or testimonial, we might get somewhere. I am stupified that the doctor went from morphine to darvon. (I am trying to get the little faces in here but get a colon with the words instead, hummm). How can you tell a doctor you know what will work? LOL. Also, I think any doctor not associated with a pain clinic would have a heart attack at prescribing that much opiate of any kind. One final note, my brother could go to a pain clinic BUT it is a good distance away and it will takes months and many, many protocols before they will even consider IF they will take him on as a patient. So while he I feel he should go there anyway, I do see why he wants to stay with is doc (who he LOVES) and not have to drive 50 miles to the PC. Also, it is often hard if not impossible for him to drive and he has had to cancel two appts. with them because I had to teach during the time he had the appts. and he couldn't drive. Well-- enough. No one will read this far. Please help if you can. I know many of you understand this horrific pain, but I know the doctors he has seen think he is just a drug addict seeking legal access to meds, and they are filtering this back to his doc. I KNOW he is not seeking drugs for thrills, and has NO experience with opiates EVER. He just needs help with pain. Please, anyone out there who can help???? Miranda

The Oxycodone and MS study is still in trial...See Link below:


http://clinicaltrials.gov/show/NCT00414453

Thank you for very much for your response but what I read was a completed study that at least showed promising evidence for further research that oxycodone (not oxycontin though I know it is the same only in time release) had positive effects on the disease itself. I thank you for the link but this was an actual paper that was reporting results of a study. If I find it I will put the link out there. Hope you are doing well. Miranda

I find oxycodone really helps with my MS pain.

But the problem for me is that when it wears off in a few hours, I'm left in even WORSE shape than I was in to begin with. And it seems to worsen other MS symptoms too once it wears off - this lasts for about 24 hours afterwards.

So I am in this vicious cycle of feeling desperate for some relief so I'll take an oxycodone, only to understand that I'll suffer even more afterwards for those few hours of relief.

And everytime after I experience the worsening effects, I swear I'm going to throw out the rest to make sure I never have to go through it again... but I don't, and then I get desperate enough the next time to take one, only to go through the same worsening of the pain afterwards and the worsening of my other symptoms.

So suffering even MORE pain afterwards is too high a price to pay for a few hours of pain relief, but desperation makes me do it anyway.

Glad it helps your brother. My neuro gave it to me so he obviously has some experience with it helping others with MS. And it does work for my pain temporarily. But I haven't had the experience of it helping my MS generally at all, it temporarily worsens it considerably. And the pain comes back even stronger than it ever was too.

Hi Pantos :)...Ask your Doc about the extended release Oxycodone or Oxycotin.

I'll try that Sally, thank you.

Miranda
 

Hi Miranda
First to answer the easy question. The smileys do appear as text in colons in the message. You can preview post, the button at bottom of of the text box thingie, you type in, and see the pix.

My experiences are that many docs don't believe narcotics such as oxy, and morphine helps MS pain. Plus the fear of abuse, getting the script and reselling on the streets for xtra cash, not to mention malpractice is a deterent to the prescribing.

I've found through trials that morphine based vicodin has less intense side effects, nausea and dizziness, for me then the oxy based med. For me 1/2 a tab daily makes the awareness of pain less. Not that it disappears, but it doesn't seem to bother me that I hurt.

My exb/f has been on heavy meds for RSD (nerve damage) pain for 20+ years and finds the oxy bases are better. He must wean himself off every couple of years when he reaches max dosage and then can start again. I'm glad I'm not in his shoes.

Well that's my 2 cents for the day, hope it helped. I hope you find what you are looking for and your brother can get the relief he needs. You are a wonderful sister and advocate. Thanks for caring.

:hug:

Hi Miranda!

Good hearing from you again, but sorry to learn your brother is still having such a tough time with pain. :( I'll be following the replies you get from this thread since so far nothing I've tried has worked. Guess nerve pain is really hard to control.

Good luck with your search and tell your brother to hang in there!

Beth -- Morphine based Vicodin? Is that a regular script you get from your doctor? What dosage do you take? Anything with fewer side effects sounds good to me since I seem to be so sensitive to meds. Thanks for the info!! :)

Judy
Vicodin is morphine based, whereas percoset is oxy based. It was the lowest dose, 350/50 of vicodin I took. I've since moved, and run out so no bottle to check. I took a half during the day and could function and not be overly drowsy, queasy, or dizzy. A whole one would increase both effect and the side effects. But with both the vicodin and the percoset although sleepy at the beginning after several hours it made going to sleep at night difficult.

HTH
:hug:

Beth.......
 

Thanks for the info! I'll keep it in mind when I see either my PCP or Neuro next time. I've never been on either Vicodin or Percocet. It wouldn't be good making it harder for me to go to sleep though -- you can see it's about 3:30 am now!!!

Take care........:)