LDN – Any further updates?

[Lizz]

Hi- It has been with great interest I have been following the threads on LDN, with Gratefulgirl and T-Bird and all. I saw recently Vinny states he is starting back on it. My condition has been better since I started bio-identical hormones a while back, but I still have active disease and damage. I am currently not on the AP, because, frankly, I can’t seem to get it. Dr. conventional rheumy scoffs at it and my ND says not willing to “monitor me” on it. ND gave me a script for LDN. I’m chicken to start it, I guess because I’m afraid of a big herx without the benefit of abx. I’ve finally gotten fairly steady work after a five year lull, and I don’t want to screw things up. I have one more kid to put through college.
Does anyone have any advice on this? If it’s successful does it actually improve your labs? My ESR and CRP are still too high. What amount to start with? It seems it may be different to each person. I just can’t seem to make the leap. I’m also taking plaquenil, cortef and occasional mobic. (NSAIDS really do nothing for me.) That’s all except for probiotics, fish oil, B-12, D3 and co-enzyme Q-10.
I have severe osteoarthritis in both knees, (x rays) which are my main problem. I stopped cortisone shots a long time ago because they actually seem to stir up the pathogen load, making things worse. I would love more mobility, and less stiffness in that area.
I am also HLA-B27 positive. I really don’t know what that means, as I have no spinal or hip involvement. Any ideas on LDN or anything else. Thanks to all. Lizz

[PhilC]

Hi Lizz,
@Lizz wrote:

ND gave me a script for LDN. I’m chicken to start it, I guess because I’m afraid of a big herx without the benefit of abx. I’ve finally gotten fairly steady work after a five year lull, and I don’t want to screw things up. I have one more kid to put through college.

What dose is on the prescription?

Phil

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

[Lizz]

Hi Phil, it’s 3mg at bedtime.

[laurawm]

Hi Lizz,

I’ve been taking LDN 4.5mg since October. I definitely notice an increase in pain if I happen to miss a dose. It is difficult for me to say how much I herxed on it in the beginning as I also added other meds at that time and was in a very bad state already. What I do know is that it helps me now – my prescribing doctor started me out on 1.5mg for the first week, then 3mg, and then finally 4.5mg. You might talk to your doctor and see if you could start on a very low dose to see how you do with it for a couple weeks? From my understanding, LDN is not an antibiotic, but it does interact with immune function (so there could be some herxing) while at the same time increasing endorphins which help with pain.

Hope this is helpful!

Laura

[Maz]

@Lizz wrote:

I am currently not on the AP, because, frankly, I can’t seem to get it. Dr. conventional rheumy scoffs at it and my ND says not willing to “monitor me” on it. ND gave me a script for LDN. I’m chicken to start it, I guess because I’m afraid of a big herx without the benefit of abx.

I am also HLA-B27 positive. I really don’t know what that means, as I have no spinal or hip involvement. Any ideas on LDN or anything else. Thanks to all. Lizz

Lizz, my memory is poor on this, but weren’t you working with Dr. F. or a LLMD before? Any chance you can go back to see one of these to get you going again on AP? If not and you’d like a listing of docs, let me know, and I’d be happy to send one your way.

Sorry not to be much help on the LDN…I used it for about 10 months and, although it helped a little to modulate disease symptoms, it didn’t do much overall and I had to stop as I started getting night tremors. I started on 2mg and slowly worked up to 4.5mg over the course of the that time. I haven’t ruled it out as something to try later, as it’s pretty innocuous, all in all, but the side-effects I experienced (maybe dose-dependent?) were unnerving and, according to my LLMD, not uncommon with Lymies who have some neuro-involvement.

Lizz, have you ever checked out the kickas.org website or spoken with Dragonslayer (John)? Some good info on there about HLA B27 genetic haplotypes…also a few other informative links. John can provide you with a good overview on what a positive HLA B27 test may point to in light of your symptoms. Of course, being positive doesn’t necessarily confirm a diagnosis of a spondylarthritide and may point to another disease course or nothing at all, but as this gene type usually predisposes one to gut involvement, then the LDN may be a very helpful adjunctive support:

http://www.kickas.org/

http://en.wikipedia.org/wiki/HLA-B27 (also see links referenced at bottom of Wiki article).

[vinny]

I have been off LDN for about a year, mostly just to see how much it was helping. Rcently I have seen some sense that I might be slipping a little on overall joint pain, and increased my Minocycline from M,W,F to 100mg daily. Have ordered Naltrexone and will start back up as soon as I recieved it. When I started it nothing dramatic happened with my sleep, and actually slept better once I was use to it. Will post once I get a few weeks on it.
vinny

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[Lizz]

Thanks Laura, Vinny and Maz for the replies. I have totally maxed out available funds to see a Dr outside the HMO. I did see an LLMD for over a year and tried alot of tx w/o much improvement. And from my personal experiences, I would never go back to Dr. F. Is there any chance I could e-mail Dr. S. in Iowa? I think I would just try 50mg mino three days a week. I feel like if the LDN fails I’m looking at a biologic. I have hand and foot damage that will eventually need surgery and I can’t even imagine how much worse it could get. Yet I have no faith in the conventional route.
Vinny, please let me know how it goes for you. I wish you all success. I hope Gratefulgirl and Tom see this as well and let me know how they are doing. Laura, hang in there. I know how tough it is for you. We are all pulling for you. And Maz, as usual, I can’t thank you enough for all you do on this board. Lizz

[Maz]

@Lizz wrote:

Is there any chance I could e-mail Dr. S. in Iowa?

Lizz, I’ll PM you with Dr. S’s contact info. Wishing you the best!

[PhilC]

Hi Lizz,
@Lizz wrote:

Hi Phil, it’s 3mg at bedtime.

That’s a good dose. According to Dr. Ian Zagon at Penn State, 3 to 4 mg is the highest dose one should use.

See: https://www.roadback.org/forum/viewtopic.php?f=1&t=8859

However, 3 mg is not a good starting dose for a couple of reasons. It would be better to start at a lower dose (like 1 mg) and slowly work your way up to 3 mg. Perhaps you could get your ND to write you a new prescription. Another possibility is to find a local compounding pharmacy and ask them if they could prepare your prescription as a liquid. That would make it easier to adjust your dose. Keep in mind that liquid LDN must be kept refrigerated and goes bad fairly quickly, so you would need to start using it right away.

Phil

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

[PhilC]

Hi Lizz,
@Lizz wrote:

I am currently not on the AP, because, frankly, I can’t seem to get it. Dr. conventional rheumy scoffs at it and my ND says not willing to “monitor me” on it.

Suggestion: Download the PDF file found on this page and give a printed copy of it to your rheumatologist:
Use of Minocycline for the Treatment of Rheumatoid Arthritis

Phil

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

[vinny]

Lizz, I sent you Private Message;let me know when you read it and I will give you further information.
Maz, I buy 50mg Naltrexone pills and dissolve 1 pill in 50ml of water so that a 4ml dose equals 4mg. I put the 4ml of solution in juice and take it at bedtime.
vinny

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[mj47]

Hey all,

I haven’t written or checked in for a long time. Things had been going fairly well. My hubby is still on mino and his PsA is manageable. But the last few weeks he’s had much increased pain, a low grade fever, general malaise, headache and major brain fog. He’s finally open to trying LDN.
One thing, we’re not sure what dosage to get for this first round…we’re leaning toward 1mg pills, or 1.5mg so that he can work his way up and be able to accurately dose himself. Any recs for this?
I’m a little concerned that since he’s clearly in some kind of flare, that taking the LDN might make him feel a bit worse. Can anyone speak to this?

Vinny, I’m glad to see you on here. I’ve been wondering about you because your case & my hubby’s are very similar. You’re one of the reasons he was so open to trying mino. Please keep posting about your experience with LDN.
We’re really hopeful that it helps.

Best to all of you!!
~mj

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