Pain on LDN (seronegative RA)

[APbeliever]

I am on 4.5 mgs of LDN for the past two weeks. At first, LDN gave me a great boost in energy, zero fatigue and lowered the pain with really bad insomnia(hardly any sleep at all). Now I am sleeping a little better like about 3 hours at the most with a lot of pain all day long and stomach problems as well. Fatigue came back with increase in pain levels. Anyone care to share their experiences on LDN? I am also waking up at night frequently to use the bathroom on LDN. Anyone had that problem with LDN?

[Maz]

[user=1212]APbeliever[/user] wrote:

I am on 4.5 mgs of LDN for the past two weeks. At first, LDN gave me a great boost in energy, zero fatigue and lowered the pain with really bad insomnia(hardly any sleep at all). Now I am sleeping a little better like about 3 hours at the most with a lot of pain all day long and stomach problems as well. Fatigue came back with increase in pain levels. Anyone care to share their experiences on LDN? I am also waking up at night frequently to use the bathroom on LDN. Anyone had that problem with LDN?

Hi APB,

LDN boosts endorphins, which helps to modulate immune function, which in turn helps the immune system fight off bugs more effectively. Herxing is therefore to be expected on LDN and, starting on the highest dose, right off, may have something to do with this. I understand that Lymies and those with candida issues may also experience worsening, moreso than others.

Increased urinary frequency is also a common side-effect of LDN. I have also found myself getting up once or twice in the night since starting it.

Peace, Maz

[APbeliever]

Thanks Maz , I know I can always count on you for your wonderful advice. Unfortunately I have no choice. Dr K does not believe in giving lower dosages of LDN. I had asked her to give me lower dosage of LDN initially when I met her.  Before leaving to meet Dr K, I had spoken to Dr Skip the pharmacist from Florida about the LDN dosages. He had advised me also to ask the doctor for lower dosages at first since he himself has RA and is taking presently LDN for it. I had to break the capsule in half and just dissolve half the powder in a glass of water last night. I dont know if I can take the full dosage at this moment since the herx is making me awfully sick and hurting all over.

[APbeliever]

Maz, what are the symptoms of drug induced Lupus that you were experiencing on Mino?

[PhilC]

[user=1212]APbeliever[/user] wrote:

Unfortunately I have no choice. Dr K does not believe in giving lower dosages of LDN.

Hi APbeliever,

You do have a choice. You can find a doctor who is more flexible and better informed about LDN, or you can purchase 50 mg naltexone tablets and make your own liquid LDN. You could even use your 4.5 mg capsules to make liquid LDN.

[user=1212]APbeliever[/user] wrote:

I dont know if I can take the full dosage at this moment since the herx is making me awfully sick and hurting all over.

It may not be a herx; 4.5 mg may simply be too high of a dose for you.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[APbeliever]

Thanks Phil, where do I get 50 mgs Naltroxone tablets without a prescription? Actually, I did break the LDN cap last night and took half the powder. I also took a break from all antibioitics for a day. I feel a little better now. I don't know if it was a flare or a herx. Phil, I did try getting a doctor who is better informed at LDN and more flexible but unfortunately, I was not able to find any doctors in my area that would prescribe LDN. I even tried asking Crystal from LDN forum and called everyone of those doctors in my area but all the doctors in the list also refused to prescribe it. Will keep you guys informed.

[PhilC]

APbeliever,

I thought of another idea. Some people who are sensitive to a lot of stuff and want to avoid fillers will have their LDN prepared as solution of pure naltrexone powder dissolved in distilled water. Because it needs to be refrigerated, it would be best to find a local compounding pharmacy to fill the prescription.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

[user=1212]APbeliever[/user] wrote:

Maz, what are the symptoms of drug induced Lupus that you were experiencing on Mino?

Hi APB,

My symptoms of drug-induced lupus erythematosis (DILE for short) crept up very gradually…general malaise/feeling toxic, fatigue, migrating, burning arthralgias and myalgias, increasing in intensity over several months, including fevers and some swelling of joints. This situation occured very soon after I hit remission on minocycline and azithromycin – after about 16 months of use – so this worsening clued me in that something was not right. Fortunately, I did not suffer from any lung or heart involvment. Although, after taking a break from mino for a month and then trying to re-introduce it, I experienced very severe serum-sickness-like reactions (high fever with body-wide pain), so it was clear that I would no longer be able to tolerate mino and had to switch out to doxycycline. 

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutindividualized.aspx?a=377&z=0&page=3

DILE is easily diagnosed with laboratory markers:

• Anti-histone ABs [/*:2dapb8jx]
• ANA [/*:2dapb8jx]
• Single-stranded anti-DNA (fake lupus) aka SS anti-DNA[/*:2dapb8jx]

For anyone concerned about developing DILE, these labs can be easily incorporated into regular labs for monitoring. ANA may be useless in folk who already have a positive ANA, however the other two tests are usually all that is needed for a confirmation and ANA is only helpful if previously negative.

DILE resolves fairly quickly upon ceasing the offending medication and usually labs return to normal within months. My symptoms largely resolved within days and were completely resolved within a month. My labs (as listed above) were normalised when re-checked at about 5 months. My ANA has always been negative, apart from this one episode of DILE.

As the link above states on page 1, the risk of developing DILE from such drugs that may induce the condition is less than 1%. This is a highly rare occurance and should not be cause for concern for anyone. It can be easily diagnosed and easily resolved, if it should occur – I was just one unlucky schmuck, I guess. I also experienced similar problems some years ago from a beta blocker I was put on temporarily for heart palpitations (I now know were due to Lyme), which did affect my heart and lungs.

Although DILE mimics the symptoms of real Lupus, it is an entirely different condition and is likely just the way that some folks' bodies metabolise the drug. “Slow acetylators” (inability to break down particular drugs in the liver) may account for this, but the jury is out on the mechanism of DILE and why it occurs in a small handful of folk and several theories are also included in the link above. Because DILE is different from real lupus, minocycline can be used quite safely for folk with SLE (systemic lupus erythematosis) or MCTD (mixed connective tissue disease with lupus overlap).

I've included info on my experience with DILE in my Progress Thread – link in my sig line.

Hope this helps, APB?

Peace, Maz

[APbeliever]

Thanks again Maz, all the symptoms you described are all felt by me. Will have to check with doctor to do some labs to confirm it. Interesting, years ago I had developed high blood pressure and palpitations all of a sudden and landed in emergency. Doctor gave me Toprol, a beta blocker. My blood pressure felt really low one night. I felt light in my head and hands and I had fear coming all over me. Fear made the blood pressure go up a little and I was finally able to get up and measure it. It was 65/50 on sys/dias by the time I measured it. I don't know what it was before. He changed me medication to some other beta blocker which caused same problem. Beta blockers were also causing my heart to slow down its rhythm. Therefore, we had to move away from beta blockers to some other medications. Finally, we found Diovan (an ace med) which worked really well for a year and half and finally my blood pressure problem on its own. Its normal now and I dont take any bp medications anymore. Beta blockers are no-no for me forever. You might be right about Lyme disease effects on me. I will have to confirm with the tests you suggested.

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