Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Paul-
I am so glad you are doing well! I hope doctors start liberalizing their recommended dosage on cholestyramine for folks...I was just very fortunate to have PCP docs who were good with high dosages of it.
Again, everyone is different, so dosage varies. Play around with it people!
“The problem with most people is that they spend their whole lives waiting for the cavalry....never realizing they are the cavalry”.
I have “I AM THE CAVALRY” on the wall in my bedroom ....it really resonates with me
Carry on!
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
A couple of questions for anyone who might be in the know:
1. I started LDN 1.5 mg and I'm titrating up week by week, so presently on 3mg. I was wondering if I order 3mg or 4.5 mg capsules next time from Skips Pharmacy would they charge more than they would for the lowest dose?
In other words, does a higher dose tablet come at a greater cost?
2. My medical provider is able to provide me with 5mg tablets at a fraction of the cost. Once I titrate up to 4.5mg would I instead be able to go or the 5mg tabs?
In other words, does anyone have any idea whether an extra .5mg is a deal breaker in terms of safety or efficacy?
Hi Paul,
Since it’s prescribed by my PCP, I’m able to get LDN from a local compounding pharmacy. I think their charges are based more on the # of pills than the dosage. My 1st 90 day prescription included:
So the first 90 days (112 pills) cost $106 and 90-Day refills of 4.5 mg subsequently dropped in price to $78.99 for 90 days. I’ve never seen any reference to 5 mg pills, but have heard that some people get 50 mg caps, undo them and recap them in a lower dosage.
I’d intended to respond to your LDN post ages ago, and am really sorry it’s taken me so long. I heartily recommend LDN and am glad you’ve decided to give it a try. You asked about its effect on multiple auto-immune issues: I noticed improvements in a number of areas soon after I began taking it on 4/2/20, and these issues continued to improve over the following months.
The first things I noticed were reduced anxiety, improved mood, and WAY more energy, despite the arrival of Covid’s gloom and lockdowns. So much so that I began to feel wired and had my thyroid (Hashimoto’s) levels rechecked. After taking LDN for 3+ months my TSH dropped from 1.6 to 0.16 (just 4 months after prior test) prompting my endocrinologist to reduce my Levoxyl dosage.
Generally LDN dosing instructions recommend taking it at bedtime. However I read—I think it was here—that some take it in the morning or afternoon, to avoid sleep issues. I’ve been taking it about 3 PM and am sleeping better than I have in decades. As a result I’ve also had fewer headaches.
The most noticeable improvement has been with multiple skin and scalp issues. Rashes, bumps, lesions, etc. virtually disappeared. Some issues do resurface when under excessive stress or massive histamine onslaught, but in much milder, briefer form.
Numbness, tingling, paresthesias and balance issues have also been virtually eliminated and I can now feel 4+1/2 toes on each foot instead of 1+1/2! It’s also helped with dry/itchy eyes, sneezing, congestion and improved LPR (throat GERD).
As for MC, LDN has allowed me to broaden my diet considerably. Before starting LDN I took cromolyn sodium beginning in late 2018 and DAO beginning in late 2019. They helped significantly with digestive and skin issues, however it wasn’t until several months after adding LDN that improvement became more dramatic. I think they may work synergistically.
LDN has enabled me to reduce my antihistamine (generic Pepcid and Zyrtec) use by more than half, to stop taking cromolyn sodium almost entirely, and to eat a much larger variety of foods. I’ve been G/F, D/F, E/F and S/F ever since 2/17 Enterolab results, and ate only a handful of foods for over 2 years. I still have minor issues with bloating, gas and GERD, but no D or significant cramps in ages, so I guess I’m in remission. I still feel diet is the key, and continue to avoid the big 4, excessive histamine, and a few other problem foods. But I’m now thrilled to be able to eat fish, salads, a variety of fruits and veggies, grains, beans and even some nuts. I’m sure I could “get away with” cheating—even on the big 4 every so often, but why rock the boat? I’m trying peanut butter today, but can’t imagine that I won’t have to pay.
Hope some of this info is helpful and that you find LDN as helpful as I have. Be sure to tell us how you do.
Good luck!!!
Teri M
PS—Prior to starting LDN I was also taking PEA, which may or may not affect or be affected by LDN. My PCP had wanted to prescribe Neurontin or Lyrica for a pinched nerve. Instead I started taking PEA—palmitoylethanolamide—a plant derived supplement used for nerve pain, paresthesias, etc. The brand I use is marketed (on Amazon) as “Mirica” and is allegedly similar in effect to Lyrica. It's been studied widely and like LDN has no significant side effects. It vanquished the pain that had radiated from my spine down my right leg.
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Just a quick thanks for your detailed reply, which I will read carefully over the next few days in between grading student papers and such like.
I was able to procure a prescription for 4.5mg at Skips and it is only fractionally more cost than the 60 tabs of 1.5mg. That said, if my own consultant is willing and able to get 5mg for me, at a fraction of the price, once I am attuned to 4.5mg I'll give 5mg ago. Although 4.5mg is the most commonly cited dosage, I have read that the early trials with LDN went up to--but not beyond--5mg. 5mg seems to be the upper limit for LDN.
It's very early days so I hesitate to jump to any conclusions, but one thing I will say: my mood has been elevated, as well as my energy levels. Whether this is a lasting effect or not, I shall discover in due course. But for the moment, I am seeing the world through a significantly more positive lens, and I feel less anxious and more "can do" in my attitude.
Pebbledash wrote: ↑Thu Feb 25, 2021 6:51 pm
Hi Teri,
Just a quick thanks for your detailed reply, which I will read carefully over the next few days in between grading student papers and such like.
I was able to procure a prescription for 4.5mg at Skips and it is only fractionally more cost than the 60 tabs of 1.5mg. That said, if my own consultant is willing and able to get 5mg for me, at a fraction of the price, once I am attuned to 4.5mg I'll give 5mg ago. Although 4.5mg is the most commonly cited dosage, I have read that the early trials with LDN went up to--but not beyond--5mg. 5mg seems to be the upper limit for LDN.
At the moment I am on 3mg. I still take one budesonide a day, as cover, and I take cholestyramine after my main mean, but down to 2 servings only.
It's very early days so I hesitate to jump to any conclusions, but one thing I will say: my mood has been elevated, as well as my energy levels. Whether this is a lasting effect or not, I shall discover in due course. But for the moment, I am seeing the world through a significantly more positive lens, and I feel less anxious and more "can do" in my attitude. Of course this could be placebo, but my sense is that it is a result of LDN. The only side effect I have had is more vivid dreams, which were entirely enjoyable, tbh! The change in my mood has been really quite significant.
Hi Paul,
My first reactions were similar to yours. I'd almost forgotten what it was like to feel good and be energized. This overall sense of well-being continues, and over time I also noticed gradual improvements in other chronic conditions. I guess this has become my "new normal”, although its limits were definitely challenged during the autumn fires and recent winter storms here. But even with the added stress, digestive, skin and neurological issues did not deteriorate to anywhere near their prior levels.
I agree that an extra .5 mg wouldn’t seem to present any problems and I’d be interested in ordering those if that's possible. Are they also from Skip’s? I know someone who mistakenly took two 4.5 mg caps daily for awhile without any adverse effects.
Hope you continue to make progress.
Take care,
Teri M
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Not from Skip's. My GI at Kaiser was able to procure me a prescription through the regular channels of 5mg. I'm not sure why this amount was available to her. I only ordered through Skips because we both agreed it might be wise to build up gradually starting with 1.5mg.
Can I ask how long it took for you to start feeling benefits to your digestive system?
Paul,
It was at least a month before I noticed that digestive issues had begun to improve. But progress was gradual, intermittent and more difficult to pinpoint than other issues. I started LDN on 4/2/20 and on 6/6 had a Reclast infusion during which I contracted either the flu or a mild case of Covid—(w/digestive and respiratory symptoms). This stalled all progress until July. Steady improvement then resumed in time to enjoy summer fruits, and veggies and blueberries which had been off-limits for years. By August I was able to reduce cromolyn sodium and antihistamine use considerably and try other foods. Had a big garden, and got back into cooking (more than one ingredient at a time) again. Haven’t had any significant bowel issues, gurgling or cramps since last summer. There are foods that remain problematic, or that I’m still reluctant to try, but so far my reactions have been limited to relatively mild heartburn, gas, bloating, skin and respiratory issues which all resolve quickly as long as I don’t go overboard and I continue to avoid the big 4. I even survived the peanut butter test!
I’ve tried to research LDN pills, and all I can find is a 50 mg version by DuPont/Merck called Revia and a 50 mg generic made by Barr. Please let me know if you learn who the manufacturer is, since I’m pretty sure my PCP would prescribe them.
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
1. Thanks for your detailed summary. I must admit that, after the initial elation, I've had some bad days, particularly yesterday with very watery D. I'm relieved to hear that LDN takes time and that the initial improvements can be intermittent. That helps my morale a lot.
2. I just dug out my prescription for 5mg LDN (I've not touched it as I am using Skip's to titrate up, and presently am on 4.5mg). This is what it says on the bottle:
Valor Compounding Pharmacy Berkeley, CA (I live in San Fran). So it does turn out they used a compounding pharmacy. I have no idea why my GI was able to prescribe this directly and at my usual $10 price. Presumably Kaiser (my health care provider) have some kind of existing relationship with this pharmacy and/or this dosage. Why they were able to get a 5mg dose is beyond me. My hope is that once I have been on 4.5mg for sufficient duration, I'll ask my GI if I can revert to the original prescription.
Thanks Paul. I took a look at their website, which was pretty user friendly. They’ll transfer your Rx, work with your provider—or refer you to one. They ship to Oregon and a dozen or so other states. They had an inquiry form and I’ve asked for quotes on 90 day supplies of 4.5 mg and 5 mg LDN. You’re probably right about Kaiser having negotiated a better price, but figured I’d ask anyway.
Hope the downturn you mentioned was brief. I’ve experienced intermittent bumps in the road, but continue to see overall improvement in multiple areas.
Take care,
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Let me know if you are able to procure any LDN from the pharmacy.
There's a lengthy brochure on LDN I found on the web, for those who might be interested--Google "those who suffer much know much ldn" (for some reason, it downloads automatically as a pdf so I can't create a link).
Paul,
Valor sent the following reply:
“Thank you for contacting us! For the LDN we have a flat-rate of $105 for 90 capsules (90 days supply) meaning the same price apply to 4.5mg and 5mg capsules. We also offer free shipping and 2 days turnaround time.”
I’m currently paying about 25% less ($79 plus shipping due to Covid) for 90 caps in Portland. Kudos to Kaiser!! Don’t understand the discounted pricing on only the 5 mg caps. Maybe they’re doing a clinical trial with those. I didn’t think Kaiser even covered compounded meds.
For the last week or so I began taking it at night (as recommended), and think my sleep has further improved. I’ll check out that reference.
Hope the downturn you mentioned was brief.
Best regards,
Teri
TeriM
“Sometimes the light’s all shining on me,
other times I can barely see.” Robert Hunter
Thanks for the information. The reason I asked was because -- if you were successful -- I was wondering if my GI would be able to order me 4.5mg in the future. However, you are probably correct; Kaiser might be using the 5mg for some other (temporary) purpose such as a trial. Still, I'll follow up with her (she's great) when I come to refill, since Kaiser pharmacy give me such a good price on my meds.
I'm back on track. I am still feeling uplifted and, all in all, doing well.
The booklet I referenced is quite interesting, particularly once you start reading the case studies and interviews with the medical field in the second half.
On a PDF such as that, you can just left-click on it and select "Copy Link Location" from the drop-down menu. Then you can paste that link into a post. For example, here is a link to the publication you referenced above:
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
