Low dose Naltrexone

[Sicktoolong]

I live in Long Island ny. Looking for a reasonable compounding pharmacy.

 

[bthompsonjr1993]

I tried low dose naltrexone in 2018. At the time I had mild to moderate CFS. The Low Dose Naltrexone made me immensely more ill. First, I stopped being able to fully control my fingers. Then my CFS symptoms got so much worse and I was severe. It was the most I have ever suffered in my life. I stopped taking it, but it took about 9 months for me to revocer from severe to moderate. But I’m still not back to the level I was before taking it. Nothing I’ve ever done or consumed in my life has ever had a worse effect on my health than Low Dose Naltrexone did.

 

[zuperhero]

I tried low dose naltrexone in 2018. At the time I had mild to moderate CFS. The Low Dose Naltrexone made me immensely more ill. First, I stopped being able to fully control my fingers. Then my CFS symptoms got so much worse and I was severe. It was the most I have ever suffered in my life. I stopped taking it, but it took about 9 months for me to revocer from severe to moderate. But I’m still not back to the level I was before taking it. Nothing I’ve ever done or consumed in my life has ever had a worse effect on my health than Low Dose Naltrexone did.

that sad that we need to shoot randomly with treatments, with constant risk that smthing that supose to help us might make us even sicker :/
Did you do not any other drugs in the meantime, so you are sure that it LDN fault?

 

[bthompsonjr1993]

that sad that we need to shoot randomly with treatments, with constant risk that smthing that supose to help us might make us even sicker :/
Did you do not any other drugs in the meantime, so you are sure that it LDN fault?

Yeah, that’s life with CFS. Since then I have been very nervous to try any new treatments. And no, I wasn’t taking anything else but LDN at the time. My severity level had been the same for multiple years before taking it. Within 2 weeks of starting it things went off the rails. It started with lots of neurological problems. Like it became very hard to move the outer 2 fingers on each hand, it took a lot of effort and the movements were tremor filled and not very coordinated. Then I started feeling phantom wet spots all over my face. I would constantly feel a cold drop of water somewhere on my face and go to wipe it and nothing would be there. It was very annoying. Then my CFS symptoms went off a cliff and everything got way worse. And new ones emerged. For example, I didn’t experience tinnitus or sensitivity to sound before LDN. On LDN, both of those things developed and were very severe. Tinnitus extremely loud and zero tolerance for any sound. I figured out how to fix the sensitivity to sound, but the tinnitus is still an issue, I hear it as I type now. My brain fog got so bad I couldn’t read anymore. I am back to moderate now, but it took about a year after stopping LDN to get to a place I would call moderate. And like I said, I’m definitely not back to the level I was before taking LDN. I don’t post this to try to be negative. I just think my honest account of what happened should be out there. Because one of the reasons I agreed to take LDN was that I really didn’t see anyone reporting negative effects from it. But I’m proof that it can have devastating effects. This may be very rare, but it’s the only experience I know from taking LDN. And I think it should be out there so people know this can happen, it’s part of the risk you assume when you take it, however rare these bad effects may be. People shouldn’t think that there is no risk associated with taking it.

 

[EtherSpin]

This may be very rare, but it’s the only experience I know from taking LDN. And I think it should be out there so people know this can happen, it’s part of the risk you assume when you take it, however rare these bad effects may be. People shouldn’t think that there is no risk associated with taking it.

This is s super important data point to have and its good to get any similar stories especially as otherwise, at least for me, this is the single negative account considering its the most common ME/CFS intervention amongst the 30 or so people I know online by name/face who have the condition

 

[Strawberry]

@bthompsonjr1993 it sounds like you took too much? Maybe the LDN worked too well and made you worse? What dose did you take?

My belief (from personal experience) is that most of us are on too high of a dose. I’ve been on 0.5 mg for 3/4 of a year and improving. 3.5 mg and above made me energetic for a couple days, then I would go downhill after crashing.

 

[bthompsonjr1993]

@bthompsonjr1993 it sounds like you took too much? Maybe the LDN worked too well and made you worse? What dose did you take?

My belief (from personal experience) is that most of us are on too high of a dose. I’ve been on 0.5 mg for 3/4 of a year and improving. 3.5 mg and above made me energetic for a couple days, then I would go downhill after crashing.

I did not take too much. I took the same dose you are on. 0.5mg. It completely ruined me.

 

[Strawberry]

I’m so sorry! I thought I read you took a higher dose.

 

[Guwop2]

I tried low dose naltrexone in 2018. At the time I had mild to moderate CFS. The Low Dose Naltrexone made me immensely more ill. First, I stopped being able to fully control my fingers. Then my CFS symptoms got so much worse and I was severe. It was the most I have ever suffered in my life. I stopped taking it, but it took about 9 months for me to revocer from severe to moderate. But I’m still not back to the level I was before taking it. Nothing I’ve ever done or consumed in my life has ever had a worse effect on my health than Low Dose Naltrexone did.

Im about to try LDN, and am currently mild/moderate - down from moderate after taking the AstraZenica 18 months ago (that horrible crash lasted over a year and im just sort of recovering - had Covid a month ago with little to no after-effects).

Reading your response to the 0.5mg dose is concerning, though i was told I could try even less by the pharmacy in the UK (Dixons), so will now be halfing the initial 0.5 dose. For context, what type of CFS have you got - do certain foods inflame/cause PEM, or only excercise, or both, or stress - does anything relieve it? (in my case probiotics are a lifeline - acting, i am told, as 'imunomodulators', which is what LDN is, why im trying it). It's a botched science all this experimenting, so all I can go on is folks testimomy/etiology overlapping with mine..

 

[Heart Face]

I did not take too much. I took the same dose you are on. 0.5mg. It completely ruined me.

Sorry to hear of your experience. Some of us really have a hard time getting used to it. 0.5mg can still be too high for some people. Some start on very low or ultra low doses and slowly titrate up (Or in the first two/three weeks let your body get used to LDN and don’t increase at all) Also avoid certain excipients.

“Ultra low dose” when given daily in microgram dosing
“Very low dose” when given in daily dose of less than 0.1-0.5 mg
“Low dose” when given in daily dose (or split doses) less than or equal than 4.5-10 mg
“Moderate dose” when the daily dose is between 10-25mg
“High dose” when given in daily amounts of 50mg or more
https://ldnresearchtrust.org/.../202.../Dosing-Info-2021.pdf

 

[Heart Face]

@bthompsonjr1993 it sounds like you took too much? Maybe the LDN worked too well and made you worse? What dose did you take?

My belief (from personal experience) is that most of us are on too high of a dose. I’ve been on 0.5 mg for 3/4 of a year and improving. 3.5 mg and above made me energetic for a couple days, then I would go downhill after crashing.

I think most of us are on too high a dose too. People think more is better and are in a rush to increase to 4.5mg when this isn’t the target dose (Jarred Younger says doses are individual) and take more than once a day, but many do well on the lower doses. There are some who do much better on higher doses, but only once they have really exhausted the lower doses. We need research into doses above 4.5mg, and twice day dosing as well as better excipients.

 

[Heart Face]

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[Strawberry]

I think most of us are on too high a dose too. People think more is better and are in a rush to increase to 4.5mg when this isn’t the target dose (Jarred Younger says doses are individual) and take more than once a day, but many do well on the lower doses. There are some who do much better on higher doses, but only once they have really exhausted the lower doses. We need research into doses above 4.5mg, and twice day dosing as well as better excipients.

This is exactly me. I would overdo massively, but up it on cue to try to get the energy back. Would go to 4.5 with zero benefits. I’ve been on .5 for a year and just increased to .75. I can’t risk getting worse any more.

 

[Strawberry]

This is exactly me. I would overdo massively, but up it on cue to try to get the energy back. Would go to 4.5 with zero benefits. I’ve been on .5 for a year and just increased to .75. I can’t risk getting worse any more.

I’ve just recently increased to 1 mg. I don’t want to go into much detail, but in a nutshell my cat was in hospital for a week, and I’ve been her care taker for another week, and I’m holding up. My daughter IS HERE, but I’m able to do so much more than ever, even with fighting to get pills down!

For anyone that didn’t have luck with LDN, I suggest ultra low dose. Life has given me hard curve balls, and yet I’m still able to work.

 

[Rufous McKinney]

I started at 3.5 mgs (before bed once a day) and have never changed my dosage, nor has it ever caused any noticeable side effects.

I saw a rheumatologist and she suggested I increase my dose to 4.5 mg. My GP didn't think I should bother nor did I.