Minocycline and LDN questions- advice needed

[mj47]

Hi all,

As you can see from my sig, I’m here for my husband who has PsA.
I was wondering if anyone could provide insight to a few things I have questions about.

First, some background. I’ll try to keep it short.
He’s been managing his arthritis fairly well with the mino for a few years, with only swelling on one ankle, and relatively little pain elsewhere. He only took advil because of headaches.
About a month ago, he began feeling an increase in pain all over and generally feeling kinda crappy.
This seemed to increase and he began having a low grade fever (99.8 or so). We thought maybe he’d caught a bug. But, it didn’t really stop, and his psoriasis began spreading during this time too.
He went to see his rheumy last week & had bloodwork done. It all came back normal, with only a slight elevation in his CRP. Fortunately his ANA was negative – we were really worried it was possibly Lupus or Drug induced lupus. His doctor had no explanation. He didn’t think it was a drug reaction because the fever was so low, but he still thought it would be a good idea to stop the mino & see if he felt better. The dr said it’s possible that either his disease progression is breaking through the mino or that he’s just having a bad flare & that’s the reason for the consistent fever.
He’s been off the mino now for 6 days. Yesterday, he still felt a little feverish, but his temp was “normal”. The swelling in his ankle seems to be tapering off, but there’s a bit increase in pain.

In the interim, we got an Rx for LDN & received it today. He got an Rx for 1mg pills so he can adjust his dosage. He’s always sensitive to meds, so he thought he’d start there & increase over time.

So, my questions are:
1. Does anyone have any ideas about why he’d experience a low grade fever? In the years that he’s been on the mino, he hasn’t experienced a flare that caused this or made his psoriasis so much worse. Can you experience a bad flare so far into AP? Maz, if you’re reading….I know you had DIL…does this sound familiar to you? He does seem to be feeling slightly better since stopping the mino, but it’s been almost a week & it very well may be a coincidence because by the time we went to the dr, he’d had a slight lessening of the fevers too.

2. Any suggestions about how to start LDN? Slow & low?

Really, any suggestions are welcome…about any of this. I’m just trying to help him.

Thanks in advance.
~mj

[Trudi]

@mj47 wrote:

Really, any suggestions are welcome…about any of this. I’m just trying to help him.

Hi mj–
I don’t have any suggestions, but am sending encouragement. I do hope and pray that you and your husband will get to the bottom of this quickly.
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[mj47]

Thanks so much for your sweet words Trudi!
I remember you from when I first started visiting this forum. Hope you’re doing well. By the looks of your signature line, it seems you are.
Best,
mj

[Trudi]

@mj47 wrote:

Hope you’re doing well. By the looks of your signature line, it seems you are.

Hi mj–
My signature line doesn’t go into detail as to the damage we think the fluoroquinolones/cat’s claw may have done. I started a thread so others could be warned as to what can happen–

https://www.roadback.org/forum/viewtopic.php?f=1&t=7460&p=62055

I have a ways to go in the healing of my tendons, ligaments, and muscles–but I do believe I am headed in the right direction :).

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

@mj47 wrote:

So, my questions are:
1. Does anyone have any ideas about why he’d experience a low grade fever? In the years that he’s been on the mino, he hasn’t experienced a flare that caused this or made his psoriasis so much worse. Can you experience a bad flare so far into AP? Maz, if you’re reading….I know you had DIL…does this sound familiar to you? He does seem to be feeling slightly better since stopping the mino, but it’s been almost a week & it very well may be a coincidence because by the time we went to the dr, he’d had a slight lessening of the fevers too.

2. Any suggestions about how to start LDN? Slow & low?

Hi MJ,

Yes, flares can and do still occur while on AP until remission is reached (AP is not immune-suppressive). In these situations, what Brown did was have patients do a round of IV clindamycin (see Carol Lange story in Henry Scammell book) to help put out the “fire.”

This said, I’m just a fellow patient, so I can’t really say whether or not it could be a flare or DILE. The way my doctor determined this was to send me to an immunologist who ran some bloodwork. It was important to me to decipher what was going on, because we weren’t certain if it was a hypersensitivity reaction, an allergy or DILE and certain labs need to be run to narrow it all down. Further, if one is allergic to one tetra, then it’s usual to be allergic to all. So, while I didn’t want to be dx’d with DILE, it was the ‘preferred’ outcome, as it meant I could still take doxy or tetra.

You’ll find a pretty good write-up about DILE here:

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=377&z=0&page=1

If it helps, MJ, you can read about my DILE experience in my Personal Progress thread (link in my signature line) to compare notes and see if there are any similarities to what your DH has been experiencing. Of course, there is always the possibility of a passing unrelated infection, too. Sorry if my memory recall is off, but wasn’t there a question of chronic prostatitis at one point?

My best suggestion, MJ, would be to get your hubby to an immunologist to check for possible mino allergy or DILE. Unfortunately, the longer one is off mino, the harder it is to get accurate labs for DILE, but the immunologist could conduct an in-office re-challenge of the mino (you need to take the capsules with you) and then the mino is given to the patient in a small initial amount and then in increasing amounts through the day while being carefully observed. Unfortunately, it’s the only way to test for mino allergy unlike with penicillin where a simple skin test can be run.

Was the LDN compounded for your husband’s use, MJ, by one of the LDN-approved pharmacies? If so, getting it rx’d in 1mg caps is a great way to go, because it can then be increased in small increments to allow the body time to adjust. Some folks do fine just going straight to 4.5mg, but others have severe sleep issues and vivid dreaming at the outset that requires a slower approach. I started on 2mg (as recommended by a integrative LLMD) and then increased every couple of months by .5mg. I went very slow, because I seem to be a “slow-acetylator” and don’t metabolize some drugs very effectively (hence the DILE problem).

Wish there was a straightforward answer for you on the recent probs with your hubby, MJ. Unless his pharmacy switched his mino to a different generic or he has some unrelated infection or has been naughty with his diet – something simple like that – then it might just be wisest to get him to an immunologist who can help to figure out if it’s an evolving allergy to the drug (causing a hypersensitivity reaction) or DILE. As the Lupus Fdn link says above, those with DILE will usually produce a positive ANA (where it was previously negative), but this isn’t always the case either, so it’s worth running some further testing (anti-histone ABs and single-stranded anti-DNA). For allergy testing, the labwork would include other (various IGs as well as other immune anomalies, like immune complexes as seen in serum sickness and esoinphils may be elevated by about 30% in a tetra allergy) assays.

Hope something here helps a bit, MJ, and sending best wishes to your hubby for some swift answers to all this. 🙂

[mj47]

Hey Maz,

Thanks for your thoughtful response.
His dr didn’t really know what is going on with him. But he was relieved that my hubby’s ANA was negative. He didn’t suspect any kind of drug related illness from the symptoms. I am very hopeful that it’s simply a flare gone wild. I will suggest the immunologist to my hubby, but I know him, and I’m doubtful that he’ll agree to yet another doctor.

I read the link to the DILE write up you provided and it was very informative. And I had already read your thread about your DILE experience. My hubby’s doc did say that it’s possible that it could be viral in nature…my hubby is notorious for having even a cold linger for weeks. So, that’s another hopeful possibility.
And yes, my hubby did have an acute attack of some kind of prostate related issue…but nothing was ever found. I’m impressed that you remember! It eventually calmed down, but it too flares up. I had started wondering if perhaps my hubby is dealing with some kind of fibromyalgia issues (his mom had polymyalgia rheumatica…not sure it’s related at all, but it sounds similar!) But his rheumy didn’t think so because he doesn’t have any of the ‘tender points’ associated with fibro. But he does have many of the other symptoms, and urinary tract/interstitial cystitis issues are often part of that.
It is so frustrating to have a series of symptoms that nobody can pin down.
These autoimmune issues are masters of deception!

We did fill the LDN via Irmat’s in NY. Unfortunately, we didn’t realize the pills would be capsules. We had just assumed they would be tablets so that he could easily split them for .5mg doses. The capsules kind of complicate that idea.
He hasn’t started it yet because he still feels kinda crapola. I’ll mention that your LLMD suggested 2mg as a start. I’ve been wondering in 1mg would even do anything.

As always, your response has provided much fodder for thought and I truly appreciate you taking your time to be so thorough.
All the best to you!
~mj

[PhilC]

Hi MJ,
@mj47 wrote:

We did fill the LDN via Irmat’s in NY. Unfortunately, we didn’t realize the pills would be capsules. We had just assumed they would be tablets so that he could easily split them for .5mg doses. The capsules kind of complicate that idea.
He hasn’t started it yet because he still feels kinda crapola. I’ll mention that your LLMD suggested 2mg as a start. I’ve been wondering in 1mg would even do anything.

The 1 mg capsules will definitely do something. Even 0.5 mg will have an effect (it was the dose used in one study). Since you said that your husband is sensitive to medications, consider starting at 1 mg. Also, keep in mind that many men cannot tolerate more than 3 mg of LDN. In any case, the maximum dose is 3 to 4 mg. Although many people are taking 4.5 mg, that dose is based on old info and is actually too high.

Phil

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

[mj47]

Thanks for your response, Phil. I think he will be starting at 1mg since we have pills at that low dosage.
I would be very interested in any links you may have to LDN studies (particularly the one you mentioned re .5mg as the dosage).
Also, I haven’t heard that 4.5mg is too much, interesting. Where can I find info on that? My husband’s dad is a doctor and is always grilling me for specifics.
Thanks again!
~mj

[PhilC]

Hi MJ,
@mj47 wrote:

I would be very interested in any links you may have to LDN studies (particularly the one you mentioned re .5mg as the dosage).
Also, I haven’t heard that 4.5mg is too much, interesting. Where can I find info on that?

Here you go:
Low-dose naltreoxone for the treatment of irritable bowel syndrome: a pilot study.
How LDN works

Phil

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

[mj47]

Thank you for those links Phil! (Sorry for the delay in my response, I didn’t receive a notification that you’d written in this thread).
The PDF re how LDN works is fascinating. It answered questions that we’d been asking ourselves.
My hubby started LDN a week ago. He started at 1mg for several days and, noticing no effects whatsoever, increased to 2mg and again noticed no effects. I believe last night he took his first 3mg dose. I have a feeling he’s going to hold at this dose for a while now.

I appreciate your info!!
mj

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