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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

My experience with naltrexone & bupropion (Contrave)

by Rneb on Mon Oct 19, 2015 9:05 pm

I have entered the world of low dose naltrexone.

There are a gazillion articles, all over the Internet and in esteemed Journals. Stanford has a nice write up. NIH also has a good reference list. See for example the article "Non-stereoselective reversal of neuropathic pain by naloxone and naltrexone: involvement of toll-like receptor 4 (TLR4)" (abstract at PubMed)

While low dose naltrexone (LDN) is controversial, I have had some recent experience with it. I have grade II neuropathy – likely from Velcade and aggravated by Revlimid. I do not take dex, as the side effects are just too great. Dex makes me jittery, wired, insomniac, more GI tract upsetted, short-fused, growly, and just all around ... a grumpy a**hole (moreso than usual!)

I have had a number of surgeries, MRI's, scans, and tests -- just like most folks here. I am also claustrophobic, so I have taken lots of opioids since May of 2012, to get thru MRI's, scans, etc.
I have lots of chronic pain – really crippling pain – most days. I have lots of skeletal pain and spinal pain. Fatigue has been prominent. GI tract function is a constant joy. I have also gained some weight. Exercise is not really an option, due to pain syndromes and fatigue. Con­cen­tration, mobility, and comprehension are impacted, too. Opioids leave me "fuzzier" than usual.

I sought a new avenue with my MD and my oncologist a month ago. They said" Try Contrave". Contrave is a compound of 8 mg naltrexone / 90 mg bupropion. The naltrexone "resets and reverses" the glial Inflammation caused by opioids and chemo. The bupropion component is a crappy antidepressant that gives a nice "boost" to energy and endurance – without the use of any stimulants.

Well, I have never felt better since 2010. I am really skeptical of claims like this -- but I spent the afternoon reading up on LDN, now that I have the energy and concentration.

I am starting my 4th week with the drug. I am 80 % pain free, mobile, productive, full of energy
(not like dex), and am sleeping well (it's been a long time).

I am really surprised, as I thought this was a long shot ... or just some BS. However, in reading the materials, it appears that this low-cost, low-dose, medication resets the glial cells in the brain ("activated by opioid use") and spinal canal, and reduces inflammation. So you get back to a better quality of life and more normal glial function. I am also losing weight, without trying. Both drugs have been around a long time and have very low side effect profiles.

To further test, I took myself off the drug this weekend. I was miserable again by Sunday afternoon. I resumed the dosage and I am feeling much better. Clearer thinking. Less chemo brain, it seems.

This may be a suitable substitute for the harsh dexamethasone we all have taken?

Read up for yourself. Insurance does not cover, as it is deemed a weight loss drug. Go figure.

I'll gladly pay the $209 every 2 months if it works this well on the chemo brain / chronic pain / neuropathic pain. The weight loss would be a bonus.

Good luck.

Rneb

Re: My experience with naltrexone & bupropion (Contrave)

by mikeb on Tue Oct 20, 2015 8:11 pm

Hi Rneb,

Thanks for sharing your experience with Contrave. I'd not heard of it before.

I'm very happy to hear that it has worked so well to help you. I hope that continues!
Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: My experience with naltrexone & bupropion (Contrave)

by Rneb on Wed Oct 21, 2015 2:20 pm

Mike:

You are a "Reader", so here is a link to an article which expounds on the "science of glial activation" and related problems.

Low-dose naltrexone appears to back down "inflammatory processes" within glial structures, which restores homeostasis to the glial cell and adjacent structures. I have had a very positive response without the usual and unpleasant side effects of dex.

My supposition is that Revlimid plays a prominent role in "exciting" these cells ... thus creating pain. Steroids (i.e., dex) may be just too crude to chronically use to restore homeostasis to these structures.

Rneb

Re: My experience with naltrexone & bupropion (Contrave)

by GLCarlton on Wed Oct 21, 2015 4:49 pm

Rneb,

Thanks for posting your info on Contrave, I find the results you are experiencing very en­cour­ag­ing. As chemo brain and peripheral neuropathy are my chief complaints (not counting my trach and lumbar compression fractures), I am going to check with my oncologist about a trial run with this.

My question, however, is the interaction with the dexamethasone. My current meds are Revlimid and dexamethasone. Is it possible that your reported change in condition could be chiefly attributable to your discontinuation of the dex, or the discontinuation of dex with the Contrave? If I were to continue with the dex, would the Contrave have any impact at all?

Certainly these questions are directed more towards my MD, but am seeking your opinion in the matter as well.

Good luck,
GLC

GLCarlton
Name: GLC
Who do you know with myeloma?: Myself
When were you/they diagnosed?: June 2014
Age at diagnosis: 62

Re: My experience with naltrexone & bupropion (Contrave)

by Rneb on Wed Oct 21, 2015 10:31 pm

Carlton:

I cannot speak to your specific question: viz, "Will Contrave work while I am taking Revlimid / Dex ?"

I have been off the Dex for a considerable amount of time--2 years, I think.

Past Induction, Once my Blood Counts and my creatinine levels were okay (low, but stable)--Oncology Doc asked if I wanted off Dex in maintenance phase. I was happy to ditch Dex, as I had many negative side effects from it. Velcade had started the cascade of inflammation, in my system.

( and the Neuropathies).

I also had a bunch of opiods in my system, as I have had several anesthesia's and Surgeries over the past 3 years and Post-op meds. They, according to the literature, also contribute to / aggravate "activated Glials".

So the working theory is that Revlimid and opiods caused me the bulk of ongoing CNS and Neuropathic pain and discomfort.

I wasn't hooked on the Opiods--they just stopped working for me. So did NSAIDS. My Adroit Family Physician is a progressive and innovative fellow--so he offered Contrave to me. He knew I am a "seeker" of information and would read up on Low dose Naltrexone, and we visited more last week. He is happy with the results --and so am I. Oncologist wants details, as well.

My personal situation is not Dex related, methinks. It is more Revlimid / Opiod related...and long standing "inflammation" of Glials.

The side effect profile of Contrave is pretty darn tame--compared to what everyone here has been thru with Dex, Cytoxan,Velcade, Zometa, and the newer advent meds.

There are quite a number of articles out there on Glials and Low Dose Naltrexone, Naloxone, etc. Maybe one addresses your specific question.?

Talk with your Doc. Good Luck.

Rneb

Re: My experience with naltrexone & bupropion (Contrave)

by mikeb on Thu Oct 22, 2015 12:11 pm

Hi Rneb,
Thanks for the pointer to the glia cell article. I read it and learned a few things!

An aunt suffers from fibromyalgia. My mom has rheumatoid arthritis. Both deal with chronic pain. It's tough to see them suffer with it. From the article, I think I have a little better understanding of some of the underlying central mechanisms involved in their cases.

I also found it interesting that the author (and others, I expect) are searching for reliable biomarkers for central pain. Those biomarkers seem to be tough to pin down at this point. But it's obvious that detecting reliable biomarkers would be a big breakthrough in pain management since so much of measuring pain is subjective today.

I think your explanation of how Revlimid, Dex, and low-dose naltrexone have worked in your case makes a lot of sense.

Thanks again, and best wishes to you for continued success on Contrave.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: My experience with naltrexone & bupropion (Contrave)

by JimNY on Thu Oct 22, 2015 12:56 pm

I know Mikeb is going to laugh when I say this, given his reaction the last time I said something similar. But I really need to ask what may seem like a stupid question: Why are we talking about Contrave in this thread as if it is some sort of substitute for dex?

Dex is a known anti-myeloma agent which, when combined with other anti-myeloma drugs like Revlimid or Velcade, has a synergistic effect. Dex is given to myeloma patients to TREAT their myeloma -- not to alleviate side effects of anti-myeloma drugs.

Now, Contrave MAY have an anti-myeloma effect through as yet unclear anti-cancer effects of naltrexone. It certainly may be helping with pain and the side effects of opioids. Ditto for the bupropion.

But I really don't see why we should be talking about Contrave as a substitute for dex, That would be like dropping a medication that protects your kidneys, and starting an antidepressant, and assuming that because you're happier the antidepressant must be protecting your kidneys.

I think it's great, Rneb, that the Contrave is making you feel better, and I think there are a lot of reasons why that would be the case. I'm also glad you shared with all of us your experience so far with the drug. I just don't think that Contrave should be touted as a substitute for dex.

JimNY

Re: My experience with naltrexone & bupropion (Contrave)

by Rneb on Thu Oct 22, 2015 3:52 pm

Ny:

Perhaps if you read some of the cited articles, you might be able to subtly factor in that the science (to date) indicates Low Dose Naltrexone/ Nalexone is likely efficacious as a Conjunctive therapy to Central Pain syndromes, and "Activated Glials"--and to both Revlimid and Dex known side effects.
(ie. Neuropathies, etc.)
No one is suggesting "replacement" of any drug.

It's the emerging science, that is the primary focus of, and for, understanding Central pain syndromes. Not the named drug.

I think Mike carefully appreciates the limited focus, mechanism of action, and the emerging scientific rationale. He extended it to his family in the possibility of use in other settings, and the understanding of the science involved.

Unlike Laetrile, or other "stuff", LDN does have some science behind it's applications.

Good luck.

Rneb

Re: My experience with naltrexone & bupropion (Contrave)

by JimNY on Thu Oct 22, 2015 9:49 pm

Neb,

Perhaps if you read your first posting in this thread, you would understand the reason for the concern I expressed in my previous posting. In your first posting, you wrote:
This may be a suitable substitute for the harsh dexamethasone we all have taken?

I'd say that stands in direct contradiction to what you just wrote, when you said
No one is suggesting "replacement" of any drug.

As I said earlier, I think it's great that you've had such a positive experience with Contrave. It would not surprise me if the Contrave has meaningfully contributed to your feeling better, and that it could help others in similar situations. That's why I also appreciate your sharing the experience with everyone here.

I just don't want GLCarlton or anyone else who reads this thread to be confused about what Contrave may be useful for. It shouldn't be viewed as a substitute for dex.

I hope Contrave continues to help you with the side effects you've experienced in the past.

JimNY

Re: My experience with naltrexone & bupropion (Contrave)

by Rneb on Fri Oct 23, 2015 2:23 pm

NY:

I think Carlton, and most others here, know that a phrase followed by a question mark, is not a suggestion or a statement that anything is in fact a replacement. It is a question.

However, if you think it must be specifically pointed out--that the drug in question--could be considered as a potential Adjunct medicine given for the side effects occasioned by Standard Chemo formulations, ( ie. immune responses, Neuropathies, pain syndromes, activated Glials, etc) that is consistent with the literature cited.

Isn't one of the properties of a Steroid --to enhance healing by reducing immuno responses, swelling and inflammation, so cells, structures, and tissue can heal ? Isn't that one of the reasons why we take / took Dex ?

If you do not wish to read the articles and the science behind them, that is certainly your choice.

Good luck.

Rneb

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