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Observations on the use of low-dose naltrexone after 5 months

Oct 11, 2015 - 2 comments
Tags:

LDN

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Low dose Naltrexone

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tcc

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transitional cell carcinoma

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Pain

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Insomnia

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neuropathic pain

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Bladder Cancer



I have been on LDN now for almost 5.5 months.  I was prescribed it for neuropathic pain.  Although it helped somewhat right away, it did wear off -- after a few months, however, my pain is well managed.  I have tapered off a few times thinking the pain is gone and discovered, no, it's still there.  Although I still have issues, this stuff helps me function, and for that I'm grateful.

I've also found it helps my mood (and did so at the very lowest level I tried of 1.5 mg).

The most intriguing thing?  I was dxed (seperate from neurological issues) with recurring transitional cell carcinoma fall of 2014 while being worked up for retention issues.  I've had recurrences at every follow up cystoscopy.  End of April 2015 my urologist booked me for a second surgery to deal with a new tumour.  I started LDN May 1.  By the time of surgery at the end of May the tumour had become an undifferentiated mass of tissue, and no cancer cells were found at biopsy.

Early October, I had my most recent follow up cystoscopy and there were no recurrences for the very first time.  My urologist was thrilled -- he feels the LDN is acting as an immunomodulator -- not a "cure", but halting tumour growth.  I have had no other treatment for TCC, so although this is anecdotal, it seems to be the case.  I will continue to be followed, and will update either way.

I do have side effects from the LDN.  Most people don't, other than insomnia when they first start taking it.  My adverse affects are are insomnia (that does not disappear) and increased spasticity of my right (weak) side.  I have read cautions that those with ms should take no more than 3 mg / day because of increased spasms/spasticity.  Well, those with ms and me, since I don't have a dx :P.

It is incredibly finicky to find the "right" dose -- it's not like most meds.  The normal taper up suggested is 1.5, then 3.0, then 4.5 mg.  None of those levels worked for me.  Mood enhancement started at 1.5 mg, but no pain control at 3.0 mg.  By 4.5 mg, my sleep was toast and I was awakening in the morning with my right leg immobile ... awkward.  I had to go back down and taper up by .2 mg, then .1 mg.  My "sweet spot" is 3.6-3.7 mg/day.  I really recommend the liquid to start for sorting out best dose.

I recently did switch my dosing to the morning rather than evening, and it is helping with the trouble sleeping I've had.  Morning dosing is not recommended due to the belief that the endorphin production increase happens during sleep.  I hope to try to move back to night time dosing in the future.

I remain undiagnosed, so therefore have no conventional treatment for ms or whatever mimic this is.  It is good to feel like I am doing "something" and am relieved to be rid of the neuropathic pain which was disabling.  I was very sceptical that LDN would do anything -- it doesn't work for everyone (in particular if they don't tough it out in finding the right dose).

Plus, I am grateful for the multitasking ability of this stuff.  I am down to two medications plus some supplements (LDN and a bp medication).  It's a positive change from the pharmacy I've been rxed over the past couple of years.

I am not a doctor.  The autoimmune and ms uses of LDN are experimental.  No guarantees.  Just saying :).  My neurologist originally called it snake oil, but my GP was willing to take the risk.  Recently I found out my new gynecologist thinks it's a "great" medication and prescribes it.  There are various private cancer clinics in Canada and probably elsewhere prescribing it.  Although it's an off-label use, it's not the first medication being used for pain that's off-label (Cymbalta, gaba, Lyrica etc.).

Anyway, just wanted to do an update.

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Avatar universal
by armillariasolidipes, Oct 11, 2015
Yay, this is awesome! I'm so glad that LDN is working for you. :]

I wish there was more money going into LDN research as obviously there are lots of people purporting benefit from it in a wide range of scenarios. Have you ever visited CureTogether? It's a website where people can submit info on how different treatments work for them. LDN is very popular for depression, MS, fibromyalgia, etc. Here's a fun infographic on MS treatments according to efficacy and popularity: http://curetogether.com/multiple-sclerosis/ig/treatment-effectiveness-vs-popularity (I swear this isn't an advertisement :P...I just think that it's a nice tool for putting alternative therapies into perspective without having to wait for the formal research.)

I wish you all the best!

5265383 tn?1483811956
by aspen2, Oct 12, 2015
I haven't visited that website, although I don't have a dx to report it helping with lol.  

My expectations were very low when I started, so it was surprising when the benefits accumulated.

Thanks for the encouragement, and I'm off to look at the info graphic.

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