Low Dose Naltrexone experiences please

bluelakelady

hi goldy,
i did some reading and it looks like the only thing to stay on top of is your liver enzymes, so stay on your doc to check them often. i hope it helps you. interesting drug. sorry i have never taken it. if you feel up to it post on how it is affecting you and does it help.
peace,
bluelakelady

goldyfm

Thanks for the reply Bluelakelady. I am having a delay with insurance and mail order issues on getting my prescription filled. It has to be compounded by a specialty pharmacy but I am anxious to give it a try. I will post as soon as I have begun. I am optimistic as it has shown great promise in auto immune disorders and clinical trials shows much success in this and other disorders. Will keep you posted. If it helps, others may want to research and mention to their treating physician.

elmhar

Hi Goldy,

I used to be a regular on this forum, but stop in only occasionally these days.

I've had GREAT success with LDN. But then my FM is complicated by autoimmune issues (undifferentiated collagen vascular disease & hashi's).

Before I tried LDN, I'd had some success with dietary changes and supps. But still had daily pain & bad flares. I did get hormone balancing done (estro, testosterone, thyroid) & these I believe were fairly important, helping to reduce my day to day pain. However I was still having flares that kept me homebound with a walker, and many days still needed to use a cane by the end of the day.

Since starting LDN in July/08:

** I've started to garden again -- up to 4 hrs/day. Couldn't manage more than a few minutes before LDN, and that was so *psychologically* painful that I didn't go there.

** I'm walking further & faster each day. My gait has improved so much that even acquaintances comment. My DH, who shepherded me through many slow toddles over the years now struggles to keep up with me as I can go at quite a clip!

** I've once again started to do volunteer work -- usually about a 4 hr stretch, once a week, but occasionally as long as 6 hrs at a time. And this is moderately strenuous work -- I usually move several 1000 books each week.

** I'm once again able to shop & do errands for up to 7 hrs at a stretch -- shop til ya drop! Before LDN, my "drop zone" came after about 20 min.

** My MCS is much improved.

** My daily pain level is very low, my flares infrequent & mild by comparison to past times. No more walker!

Good luck to you if you decide to try LDN. If you have any questions, feel free to ask.

goldyfm

Thank you so much for your insight. I am hoping and praying I will have similar results. I am awaiting the delivery of my script so I can get on this regimen. I am so tired of not feeling good. I had about 3 months of feeling half-way human and now am like an invalid once more. I just want to feel alive. I did some research and saw the wonderful results some are having with LDN and I do hope I join the ranks of those lucky people. Only time will tell. So you know of any adjustments you may need to make in its use? Do you take any pain meds along with this? I am on Tramadol but do not take it daily unless I am flaring. I appreciate so much your sharing. You can read all you want, but to know someone has had first hand experience makes one feel a little more at ease when using a new treatment. Thanks again. I will be sure to report once I have been on for a few days.

elmhar

1) LDN is incompatible with opiate meds, as well as with opiate receptor agonists like Tramadol, as far as I know. Check with your compounding pharmacist.

2) Anyone who is very med sensitive should start low, go slow with LDN. I started at 0.5 mg/day and bumped up another 1/2 mg every 10 days or so.

3) Anyone with known or suspected thyroid abnormality, or anyone on thyroid hormone replacement, should also start low, go slow, as hyperthyroid symptoms have been reported in some cases.

4) It's not unusual to have a few side effects as your brain & body adjust to the med. I was slightly nauseaous at times, a little woozy in the mornings. But it was mild & passed quickly. Also had disturbed sleep at first, which is common. Another reason for starting low, increasing upward slowly.

5) In some cases, people do best with LDN when on a gluten & dairy-free diet. Some of us don't completely digest gluten & casein. The incompletely digested peptides are natural opiates (glutomorphin, casomorphin) & work against LDN in the same manner that certain meds do.

That's all off the top of my head. Good luck, I hope LDN is helpful to you.

goldyfm

I started the Low Dose Naltrexone 3 mg last night. I had a long delay in acquiring as it is not FDA approved at this dosage and had to jump through hoops to find some pharmacy that would file my insurance and issue due to that fact. However, I did start and I want to relay that I have been in a major flair, chiefly fatigue and general achiness and leg pain(which is norm for me) for almost 6 weeks now and I actually have had a spurt of energy this AM. As has been the norm for me, I would have already had a Tramadol and probably had to lie down by this time of the day. I don't know at this junction if that was the med or I was just going to have a good day anyway, but will welcome whatever the cause. My main surprise is that I feel totally alert and rested!! Coincidence??? I will keep my progress posted for others to reference. I am at this point keeping my fingers crossed that this may be my magic bullet.

FYI Next week October 19-25, will be the International Low Dose Naltrexone Awareness Week.
On October 19th, patients, physicians and researchers alike will convene at the National Institutes of Health in Bethesda, MD, for the Fifth Annual Conference on Low Dose Naltrexone.

Please feel free to research that topic and let's get the word out on this alternative therapy for patients with auto-immune diseases.

goldyfm

Day 3 of LDN therapy. I have not had any of the sleep disturbances commonly seen, in fact, I have actually slept much better than usual. I have been on CPAP for 4 years as I do have sleep apnea and chronic insomnia. Generally one to 3 hours is the max sleep I obtain daily but I have averaged about 4-6 hours on LDN. I have also noticed that I have more energy than usual, seem to be able to concentrate better, alert and general euphoria. I did clarify that it is okay to take Tramadol (for me) and I have had one tablet in the last three days and that was yesterday about noon as I overdid on the first post LDN day. Prior to the first dose, I was taking 3 day and boosting with a Flexaril on occasion. I have not had to lie down during the day the last two days. I have not had the nagging leg pain I have dealt with constantly over the last year and generally feel pretty good. I do still feel the tender points in the hips, but not as nagging a pain as usual. I realize that this is only day 3 and this could just be a remission from a flare (Lupus & FMS) but I remain optimistic.

heidiclouser

Wow....I'm impressed. Since I'm out of options for traditional immunosuppresants this might be something to try. I have a rheumy appt the end of November and will discuss with him. Thanks for the information.

goldyfm

Day 4 Still no problems with sleep. I actually got out today and shopped a little and planted some pansies in planters. I raked a little pine straw and distributed. I can not tell you when I have had this much energy. I remain impressed.