LDN side effects: Hi, any body... - LDN Research Trust

LDN Research Trust
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LDN side effects

Tywiesz
Tywiesz

Hi,

any body experiencing terrible side effects from 4.5mg ldn. I actually had to give up after 4 months, lost my taste literally, 24/7 stomach pain and nausea, not to mention other once.I know one person in my circles taking 7mg and v.happy. Grrr, is it just me?

cheers

B

29 Replies
oldestnewest

Did you begin with a very low dose and then build up very gradually to 4.5 mls? Perhaps a lower maintenace dose would suit you better, ie 3mls. If you would liketo continue with ldn, you should ask advice from your supplier. Dixons pharmacy in Glasgow are world experts on ldn. I switched from taking ldn at night, to taking it in the morning. No side effects. Good luck x

I had awful side effects with LDN - primarly exhaustion and depression. I stopped after a few days. I will try again but at a much lower dose - I was only taking 1.5mg but apparently that dose is too big a dose for people with Hashi's.

I had this same problem too. Going to try reducing the dosage again.

Hi,

when I was reducing ldn back to 1.5mg it did not work for rls but for strange enough reasons my palms/fingers got sort of more flexibility, can't explain better, stiffness and sort of no stiffness, don't know, just better but since 1 month of starting I noticed alcohol does not work, so 2-3 glasses of wine or 1-2 apple ciders would literally do nothing as in the past used to, that is grrrr, ahhaahha. Alcohol side effect stil on after 1 month of not taking it,

cheers

B

aredtigress
aredtigressAdministrator in reply to jostafford0

jostaffordO,

As mentioned above, Thyroid issues are very tricky. If your doctor isn't LDN literate they may not have been aware of this. Please take the time to go to our website (link provided below) to listen to interviews with doctors and patients about LDN and Hashi's.

ldnresearchtrust.org/ldn-vi... use the drop down bar to find Hashi

One other tip, if you're on Facebook there's an amazing group for Thyroid and LDN called Beating Thyroid Disease with LDN. They help you interpret numbers, etc.

Hope this is helpful

Michelle

Hi,

thank you for asking, I started 1.5mg, 2months or till I felt no therapeutic effect. Than 2.5, than fourth month 4.5 to get desired effect but by that that time I was all bitten up by side effects so had to give up, regretfully,

cheers

B

I started on a very low dose and gradually reached 1.5mg. I started getting terrible headaches so I stopped for a couple of months and decided to try again as I felt desperate to get some relief. I suffer from fibromyalgia anyway I went so slow and low till I reached 1.5mg again. The headaches were something I never experienced before then the crying started my husband was very concerned so I went off LDN. I would never take it again. I'm happy to read that some peoples get good results.

Grace

Hi,

yes we are special ppl, question, how did alcohol work for you? I'm still coping with the side effect of ldn on it. Does not taste good and does not work, and again headaches, nausea, stomach pain insomnia but it did work for rls

cheers

B

Burqaj2
Burqaj2 in reply to Tywiesz

Remember that the whole point of Naltrexone is that it's used to block the desire/ ability to tolerate alcohol and narcotics. The high doses, 50-100mg were originally intended to get alcoholicsand drug abusers OFF drugs and alcohol. Probably shouldn't be using. That's the whole point.

Tywiesz
Tywiesz in reply to Burqaj2

Hi,

thank you for pointing it out. From where I stand my point is not treatment for alcohol abuse. I use to take 1/11 of that dose for alcoholics for rls as it works v.well so I could sleep. So question is that in my ldn case for off label use of naltrexone this is another side effect. So many of them and the funny thing is that ldn network and ppl don't even mention this

cheers

Tywiesz

aredtigress
aredtigressAdministrator in reply to designergrace

Grace,

I'm so sorry to hear you had these problems. Did you see any relief at the lower doses? Sometimes .5mg or 1 mg is all our body needs for the moment. There isn't a "set" dose to reach, we are all different. In fact, the dose needed can change over time.

Happy to read futher down that CBD is helping, I use both and CBD is a blessing.

Michelle

Tywiesz
Tywiesz in reply to aredtigress

Hi,

I started 1.5mg and it was working for 2 months and stopped,than beefed up to 3mg till positive effect was diminished again, got up 4.5 and than too much side effects, had to give it up,

cheers

I didn't feel like alcohol having such bad headaches felt like a lot off pressure in my head. I'm taking CBD now and that has helped calm my head down and very little alcohol.

I have noticed a gradual diminution of my pleasure in drinking wine. Its as if my taste buds have been dulled.I am normally able to recall the taste of individual bottles . I find this sad.I remembered that in High doses LDN acts as a antibuse type agent. Ah well

Tywiesz
Tywiesz in reply to ulek

Hi,

thank you, I'm not alone, hahahh. So we are two now with taste altered, how about coffee, how about other foods especially with vinegar, that one is interesting, I started to love all what's with vinegar and another one, can't tolerate even a few grams of sweet in any foods

cheers

B

aredtigress
aredtigressAdministrator

Bodziu,

My apologies for the delay in responding, I had dental surgery this week and will have another one next week. Focusing is an issue right now.

While many patients can start at 4.5 mg with little side effects, many of us need to start lower. Depending on the reason you're taking LDN, the starting dose could be as low as .5mg. Some CFS patients start at .25mg. LDN doses can go up to 12 mg, but that is rare.

Our general recommendation is to start at 1.5mg, stay there for 3-6 weeks, then move up to 2 mg for 3-6 weeks, etc. Do this until you reach your "sweet" spot, or the dose that you felt the best. Please keep in mind, it can take up to a year to see full benefits.

Stomach issues, from the LDN book, "Some patients, very rarely, experience gastro-intestinal side effects, such as nausea and or constipation/diarrhea. The reason for this is currently unknown, but may be due to the presence of large numbers of delta -opiate receptors in the intestines.

Patients experiencing this side effect can request LDN Sublingual Drops, which transfer the LDN directly into the bloodstream – avoiding the GI tract. Patients who do have these side effects should increase their dose by no more than 0.5mg per week, and should consult with their GP or pharmacist for appropriate treatment for the stomach upset, if necessary. (Omeprazole, Ranitidine, Gaviscon, Fybogel, Mucogel and Pepto Bismol are ok – but not Kaolin & Morphine or Loperamide/Imodium.

"

If you're taking LDN for Thyroid issues you must work closely with your doctor as the Thyroid meds will need adjusting. If you're taking LDN for Lyme issues, herxing is a reality and will have to be dealt with. With either one, please work closely with both your doctor and your pharmacist.

Hope this is helpful,

Michelle

Tywiesz
Tywiesz in reply to aredtigress

Hi,

thank you for coming back to me. So your dental... did you find that anesthetics won't work the same as we remember from the past before taking ldn?

Regarding: "..general recommendation is to start at 1.5mg, stay there for 3-6 weeks, then move up to 2 mg for 3-6 weeks, etc. "...I did that all till 4.5mg.

"...Do this until you reach your "sweet" spot, or the dose that you felt the best. Please keep in mind, it can take up to a year to see full benefits. "....

In my case benefits kicked in in 12 hrs, no problem but with the full raging list of side effects. I thought I can just adjust the dose to 3, or 1.5mg and so forth but positive effect would diminish at lower doses and side effects would just stay strong as they were at 3mg.

Any knowledge of the taste change? Any knowledge of compromised immune system? But I like your explanation opiates stomach connection. I did enteric coated ldn, same effects, do you think that should by-pass GI system?

cheers

B

aredtigress
aredtigressAdministrator

I may be misunderstanding what you wrote - you had full benefits and side effects at 1.5 mg? Can I ask what you're taking LDN for and how long you've had the issues?

As far as dental, I've always been hard to numb and this dentist hasn't indicated any difference or that I'm out of normal range. They are doing a bone graft for 3 teeth (the area they were in) next week, that may be more challenging.

I haven't heard of many patients say anything about taste change, although a loss of interest in alcohol can happen. That one is different for each of us, some can still drink, some don't want to and others find they get inebriated very quickly. LDN works by causing your body to create more endorphins (very generic description), that might change your taste buds.

Most of us who take LDN have a compromised immune system. Have you been to the trust's website? All the information is vetted or provided by either doctors, pharmacists or patients.

LDN isn't an exact science and it can take a lot of trial and error. It helped me to listen to other patients and doctors, that might help you too.

ldnresearchtrust.org/

Michelle

Hi,

thank you for clarification, yes, I had full benefits and small side effects at 1.5 mg. 2 months later, not too much positive effects so went to 3mg, rls was gone again but side effects were increasing, 4th month again, same story, had to go to 4.5mg and couldn't handle the side effects.

Have you been to the trust's website?Yes, found it does not address side effects deep enough for my case, all so positive, all working etc. but these 10% of ppl like me just not there, sorry I don't want to be negative, not at all and I'm so happy for the rest of us who can do ldn without terrible side effects. And I so miss how it took rls from my life in just hrs of time, yap.miss it.

You mentioned our imm.sys. are compromised, is it ldn or just coz we are sick otherwise?

cheers

Bdue

Hopinggh
Hopinggh in reply to Tywiesz

Hello. I am interested for LDN for neuropathic pain. I thought this looks like best treatment as all other meds have horrendous side effects.

Would you kindly inform us as to what are the side effects you experienced ? I greatly appreciate it.

I was under the understanding that one can expect headaches and vivid dreams for about three days at first and anytime the dose is upped for three days as well.

Also, it may change your thyroid for the better and need changes in meds if you are on them for thyroid.

Thanks so much.

Hopinggh

aredtigress
aredtigressAdministrator in reply to Hopinggh

Hopinggh,

While you wait for bodziu to respond, I'm going to make some suggestions. Many patients have found relief from neuropathic pain, the key is the underlying cause. For instance, I have neuropathic pain from an injury. LDN didn't help that, but it has helped a different damaged nerve.

We all respond differently, and we all respond in different time frames. Here's a link to Patient information, including the most common side effects, information about dosing etc from the Trust's website: ldnresearchtrust.org/are-yo...

Hope this helps,

Michelle

Hopinggh
Hopinggh in reply to aredtigress

Thank you so much! I have read much about it, but need to know more. I understand the healing is individual.

Hopinggh

Tywiesz
Tywiesz in reply to Hopinggh

Hi,

good question, 90% ppl can put up with ldn side effects. If you are unlucky as me, well.. Google ldn side effects. My list was longer than that, hahahah. But if you stick to the official list of side effects only one of from the list can make your life miserable, say nausea, so bad it took my life out of me. All depends how bad you get and if you have to increase the dose which will boost the side effects. But trying is the thing, ppl get it, go through it and they are happy at the end of the day.

cheers

B

Hopinggh
Hopinggh in reply to Tywiesz

Thank you ! We need to be our own guinea pigs. I will take the chance. This is my last good hope as everything else seems worse.

Cheers to you too !

aredtigress
aredtigressAdministrator in reply to Tywiesz

You're taking LDN for RLS? This is just a theory, but I may be able to explain what is happening. Please keep in mind I'm not a medical professional, just another patient. LDN works by reducing inflammation through several mechanisms in our body. It sounds like your RLS is only partially due to inflammation, once that's addressed the other reasons may be ramping up. Since you've found LDN, I'm assuming you know about possible causes.

LDN isn't a stand alone treatment for most of us, as there are other underlying issues with chronic disease. Those can be different for each of us, and most patients change diets, add supplements, exercise or physical therapy.

The other thing that pops out with your comments is some patients have these side effects because they are taking too much LDN for their system. Some patients have to go to every other day dosing, or even every 3 days. If, as you originally indicated, you decide to try again, starting at .5mg and trying every other day might work.

All of the conditions that LDN has shown benefits are inflammation based, many doctors feel that we are also immune compromised in some way. For instance, I have Fibro and my immune system was "wide open - full on for decades". I rarely got very sick and when I did it was for a short period. After 1 year on LDN I caught the flu, my doctors were happy because they said my immune system was acting normal. I didn't really appreciate it at the time ;)

Michelle

Tywiesz
Tywiesz in reply to aredtigress

hi,

thank you for trying to decifer it, appreciated. My rls is primary, means inherited, so maybe no inflammation involved than but 1.5mg ldn worked from the moment I took it, in 2 months had to take 3mg to have positive effects and this is where I started to hit the wall, than 4 th month had to go up to 4.5mg and that was it, side effects, GI affecting problems were to grated to continue. I even used enteric coated caps to by-pass upper GI it did no different at all. But one day I'll try 05.mg and do make notes. I like your suggestion .5mg and trying every other day. I'm also reading about ultra ldn, that is 1/1000 of 1mg. I'd like to try that first. Simple to do. Take 1mg of ldn, 1L bottle with water. 1L=1000ml. So 1ml from the bottle is 1/1000 of 1mg. Correct me if my cal.is wrong

cheers

B

aredtigress
aredtigressAdministrator

As we represent a UK Medical Charity we have some guidelines I have to follow. I can't comment on diluting, my apologies. ULDN is a good idea to try.

You can also ask the pharmacy to compound LDN in sub-lingual form. That way you completely bypass the digestive system.

Let us know how it goes if you try again.

Michelle

I had to have a sublingual liquid compounded due to severe stomach issues. I can give you my pharmacy information if you like.

Tywiesz
Tywiesz in reply to Ghfdfvbjii

hi,

please do. At some point I was putting ldn caps into enteric coated bigger caps to avoid stomach but it won't avoid entire GI system as sublingual but as soon as ldn is floating in the blood it goes back to stomach ans everywhere by the blood circulation. Go and figure it out, it didn't help my side effects. How did it work for you?

cheers

Tywiesz

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