reaction from LD Naltrexone

Definitely haven’t experienced this; I’m sorry it’s happening to you. I’m no expert, but I did a lot of research and thought long and hard about starting LDN because I’m sensitive to medications, and I don’t recall it being a common side effect, but with skin issues, its always possible. And itching could be a nervous system response too.

Sounds like a good idea to try discontinuing it and then resuming to see if it comes back. If you know you have allergies it may be worth asking the compounding pharmacy for a list of ingredients?

Did you state straight off at 4.5 mg or did you titrate slowly from a lower dose? (Pre-Long COVID, starting slowly and increasing was usually how it was done but now that more providers are more willing to prescribe it, I’ve noticed others mentioning to me it was prescribed to them straight off at a higher dose. That could theoretically cause more side effects. I was originally prescribed it for fatigue for a different condition.)

There is a side effect with LDN called Stevenson Johnson that begins with a rash on the upper body it usually doesn't itch. You might and consult with your physician. Good thinking to pause the medication.

Thanks for your thoughtful reply. I did start the LDN slowly before settling on the 4.5. And I will ask the pharmacy about ingredients. Thanks for that tip!

Yes. I had a very severe reaction to LDN. After a few days on 3mgs my arms and legs started burning so bad I thought I would scream. This would last all day. I contacted my doctor. He said stop taking it. The next day I had no burning. We were trying it to see if it would help my post covid.

I’ve had no negative reaction from LDN, but haven’t felt improvement either. I’m now on full dose (5mg) for about four months. Wondering how long to continue? My doctor is willing to prescribe as long as I want to keep trying.

I’m on a dose of 6 mg, which I understand from my doctor is one of the higher doses, but she has some patients who are successful on an even higher dose. I think I only read one report with patients on 6 mg, so that’s as high as I decided to go because I don’t really notice a difference over 4.5 (but nothing worse either so I’m finishing the 90-day supply).

You might consider if you want to try a higher dose and if not, for most medications if there’s not an improvement in 3-6 months (I’m thinking of my rheumatology medication), it’s a no-go. For me the difference was slight; I only noticed improvement in fatigue. When I stopped taking it, I noticed. That’s a possibility too. If you take a medication “holiday” and you still feel the same, maybe that tells you it’s not the right fit?

I started one mg LDN and within a week went to two. Got horrid abdominal pains and a high fever. Lasted several days. Kept up the two mg thinking the pains were just another LC symptom. After a week of two mg, I got the abdominal pains back even worse. Stopped the med. My Dr had done research and I was so determined to have something help. Back to great variety of ick symptoms. Fifteen months in and the thing I do best is rest. May we all survive this ugly malady.

I too itch from taking LDN and have a irritating rash as well.

I was started on LDN for the horrific pain of Bi-Lateral Trigeminal Neuralgia, in 2019. I also have Lupus. To modulate my immune system, my doctor started me out slow at .5 mg, and gradually upped the dose to 4.5. It amazingly helped the pain. However over the last few years, I have developed a very irritating rash as well as severe itching. This year , the dose was dropped down to 3. Mg and then to 1.5. Due to very vivid dreams, and sleep disturbance , it was discontinued for a month. Rash improved and itching stopped. Reasonatly restarted, and the itching is back. Is this normal

I discontinues the LDN in August but rash persisted. Finally just faded after getting somepresxription anti-itch cream. By the time I was able to get into seeing a dermatologist the rash had faded so that she couldn't determine what it was. Now my primary is encouraging me to try again. I probably will,